Car Crashes, Strokes, and Alzheimer's Disease:
The Dangers of Sleep Deprivation
by American Heart Association
Most people are familiar with the obvious consequences of sleep deprivation—the heavy eyelids, short attention spans and excessive yawning after a poor night's sleep.
But there are more consequences of meager sleep than people realize. Research shows skimping on sleep is linked to numerous health problems, including stroke, obesity and Alzheimer's disease.
"It's like with diet, every cell in the body benefits from food in some way," said Michael Grandner, director of the Sleep and Health Research Program at the University of Arizona College of Medicine in Tucson. "Sleep is similar in that way. The whole body (benefits)."
Just one night of sleep deprivation can lead to accumulation in the brain of the beta amyloid protein, a key component in risk for Alzheimer's disease, according to a 2018 study. Researchers found signs of the protein in the hippocampus, which plays a major role in forming new memories and is one of the first areas affected by Alzheimer's.
There also is evidence that lack of sleep contributes to excess body weight. One study found people who slept fewer than seven hours each night were more likely to have a higher average body mass index and develop obesity than those who slept more. Sleep restriction also was associated with salt retention and inflammatory markers.
"Sleep plays many roles and is involved in most regulatory systems in the body," Grandner said. "This includes everything from how cells transport glucose to manage energy, to how the immune system recognizes tissue for repair."
Sleep disorders have been recognized in recent years as health factors that can increase the risk for heart attack and stroke. A 2018 study found sleep disorders, particularly sleep apnea, are prevalent among people at risk for stroke. Another recent study found people who slept fewer than six hours a night—compared with those who slept six to nine hours—had a 20% higher risk of heart attack.
One-third of U.S. adults get less sleep than they should, which also has been linked with Type 2 diabetes and depression, according to the Centers for Disease Control and Prevention. Not getting enough sleep also can cause injury and death through car crashes and workplace mistakes.
It is possible to suffer a sleep disorder without realizing it, Grandner said.
"A lot of sleep disorders are underdiagnosed and undertreated," he said. "If you're concerned about your sleep, it's important to see a specialist."
Some common sleep disorders include:
Insomnia—the inability to fall asleep and stay asleep through the night
Sleep apnea—causes interruptions through breathing irregularities
Restless leg syndrome—causes "creeping" sensations and aches in the lower legs
However, inability to sleep is not always a medical problem. It could simply be a matter of poor sleep hygiene, such as bad habits that lead to later bedtimes and insufficient sleep, said Marie-Pierre St-Onge, director of Columbia University Irving Medical Center's Sleep Center of Excellence.
"Maintaining good sleep hygiene and a stable schedule helps regulate cycles—not staring at a phone or computer right until you go to bed, for example," she said. "Looking at your emails before bedtime not only shines light in your eyes that disrupt sleep signals but can also cause some stress. Thinking about the next day's task may prevent you from falling asleep."
Drinking coffee late in the day can be a culprit as well, she said. Life stressors can carry over into nighttime, too.
"People working multiple jobs, struggling with work-life balance sometimes struggle," she said. "We're also seeing that children and adolescents aren't getting enough sleep, which is why there's been this push to delay school start times so they can get more sleep at night."
But for those having trouble getting proper sleep, there are ways to make improvements, Grandner said. He stressed the importance of winding down before bedtime to get the body prepared for rest, comparing the practice to slowing down a car before taking an exit off a highway.
He recommends keeping a regular sleep schedule, avoiding food too late at night, and getting out of bed to walk around if sleep is not coming immediately.
"Busy professional people are very distracted during the day, and they hope their brain is like a light switch you can turn off whenever you want to," Grandner said. "A lot of people need to think about giving themselves enough time to wind down. They should see their sleep as an investment in the next day's productivity and potential."
What Are Grief Dreams?
Common and comforting, dreams about the dead are changing during the pandemic
By Kevyn Burger
“He said, 'Hey babe, I love you and goodbye,'” Britt Louie recalls of a grief dream featuring her deceased husband, Fred.
In the middle of the afternoon, Dan Callahan flopped on the couch for a nap. Roused briefly by his daughter, he rolled over to resume his snooze.
That’s when his wife Brenda walked in. The same Brenda who had died suddenly two months earlier at age 59.
“It wasn’t a dream; I know what a dream is. This was a…visitation. She was there,” insisted Callahan.
“She was dressed for work, wearing her blue skirt. She sat down beside me and I felt her weight. The Dan of the dream knew she was dead. I said, ‘How is this possible?’ She gave me little peck kisses and said, ‘Don’t worry about it. It’s okay. I’m okay, you’re okay. Let it be. Just go with it.’”
At the time of the dream, Callahan, who lives in the Twin Cities, described himself as “disoriented” by the loss of his wife of 38 years.
The Callahans met the summer after high school when they worked at Valley Fair, a local amusement park, and had been together ever since. With their four children raised, the couple had begun to contemplate their post-work options. But on a January morning, Brenda felt out of breath on her way to work. She drove herself to a hospital where she suffered a massive heart attack and could not be revived.
“It’s been traumatic to lose the person you were so happy with for so long,” Callahan said. “She died before I got the chance to say goodbye. Seeing her filled me with joy and calmness.”
Unique Characteristics of Grief Dreams
What Callahan experienced, termed a “grief dream” by psychologists and social scientists who study them, is a fairly common occurrence. In the midst of the current global pandemic, dreams of those who have died may become more common as thousands of people come to terms with the loss of a loved one.
And while most such dreams bring comfort, not all of the dreams of the dead console the dreamer.
“Grief dreams have unique characteristics. They’re vivid; they don’t fade by the time you wake up. Forty years later, people can still describe them in detail,” said Joshua Black, of Ontario, Canada, whose research prompted him to create the GriefDreams website and a weekly podcast, with 155 episodes (and counting) that include interviews with people who dreamed of dead parents, spouses, siblings, children, grandparents, even dreamers who suffered prenatal and pet loss.
“I see these dreams as playing an important role in how we survive as humans,” he said. “They help at the time of greatest stress.”
Grief Dreams of His Father
While earning his master’s and doctorate in psychology at Brock University in Ontario, Black contributed significantly to the limited research on grief dreams. He conducted a half-dozen studies on the phenomenon, then co-authored articles published in academic journals. One of his studies concluded that grief dreams are quite common, especially among bereaved husbands and wives.
“If the deceased had been sick in life, they look healthy in the dream. Often the spouse returns with advice or to help with parenting.”
“Our survey on spousal loss surprised us. Within two years, eighty-six percent had a dream of their deceased spouse or romantic partner and ninety-two percent considered them positive,” he said. “If the deceased had been sick in life, they look healthy in the dream. Often, the spouse returns with advice or to help with parenting. There are sexual encounters. Some spouses appear in dreams to give their approval to a new relationship.”
Black’s research was inspired by his own grief dream, which he called life-changing.
“After my father died, I went though a rough phase. It was like the color went out of my life. I was going through the motions,” he said. “Then I had a dream that my father was in my room. He’d had a lot of issues in life but he never looked better. There was a lightness to him. I told him, ‘I miss you, I love you.’ I hugged him. When I woke up, the darkness I had carried was gone. That dream gave me what I had been longing for.”
The Pandemic Pierces the Dream World
The current pandemic-induced bottleneck at hospitals interfered with Britt Louie’s ability to be with her dying husband Fred. Diagnosed with an advanced form of cancer, Fred had brain surgery on March 31 and survived for a week following the operation. Because of visitor restrictions at the hospital in Glens Falls, N.Y., Britt saw him only once.
“He told me, even if I die, I won’t leave you,” she recalled.
Six weeks after her husband’s death, during a week she described as “really rough,” Louie had three dreams about him in three subsequent nights.
“In the first, Fred didn’t say anything, but I told him how much I miss him. He wrapped me in his arms, put his head on my shoulder and we cried together,” she said. “In the second, he was sitting in my car and gestured me over, then he kissed me so tenderly. The third night, my phone rang and it was him. He said, ‘Hey babe. I love you and goodbye.’ He hung up and in the dream I knew he was dead.”
Louie is still trying to make sense of her experience.
“The day after the first dream, I was wrecked. It was so real, but when I rolled over he wasn’t there and that hurt,” she said. “But now I cherish those dreams. I think about them every day.”
Author TJ Wray predicts the COVID-19 era will produce many dreams that are far less comforting than Louie’s.
“It’s too soon in the pandemic to have the data, but I’m assuming that those who lose someone to COVID-19 may experience trauma dreams caused by the scenario of that loved one dying alone and frightened. It’s all in place right now,” said Wray, the author of Grief Dreams: How They Help Us Heal After the Death of a Loved One.
Wray didn’t set out to study dreams. The death of her 43-year-old brother prompted her to write, Surviving the Death of a Sibling, a book aimed at others suffering the same wrenching loss. When many of the bereaved brothers and sisters she interviewed mentioned grief dreams, she got curious and that became the basis of her next book.
Wray learned that a small percentage of grief dreams are what she identifies as trauma dreams.
“Trauma dreams are the most challenging, the ones when someone wakes up in a cold sweat, screaming. They happen when a loved one died in a shocking or gruesome way; they were murdered or died in a horrible accident, or if the person witnessed the death or found the body,” she said.
Wray manages a Facebook group for grieving adult siblings and said that she is hearing from siblings who suffered traumatic loss and are now “re-triggered” by the pandemic.
“There’s a resurgence of trauma dreams from previous grief experiences they thought they’d dealt with. We see siblings who are ten years out now re-traumatized by this scenario of mass death,” she said. “They haven’t lost anyone to the virus. Just watching their newsfeed and seeing images of people on ventilators can do it.”
Black anticipates the dreams of the pandemic will ultimately be a rich source of research for academics and analysts. He has already begun to collect stories.
“Maybe a portal opens when you sleep and there’s communication we don’t understand.”
“I’m hearing from people who have worked through their initial grief. They are experiencing their loved one coming back to try to reduce their fears and help them regulate their emotions,” he said. “People wake up after these dreams and say they feel less anxiety.”
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The Benefits of Journaling
by Lisa Hutchison
Journaling is one self-care practice caregivers can utilize to connect within. This ritual becomes a personal record of your observations and experiences. It is your choice whether you share your writings or not. Most caregivers keep their journal private to ensure they have a safe place to vent about the specific difficulties they face.
Some caretakers prefer a blank journal to free write, which means writing whatever comes into your head without censoring it. Others prefer a journal with prompted questions specific to a topic of interest to them. You can purchase journals online for energy healing or caregiving. Inside you will find questions and suggestions to guide you. Often those who are not as comfortable with writing, prefer a prompted method. No matter what kind of journal you use, it is a relatively inexpensive way to reduce and manage daily stress.
You do not have to be a writer, to journal your thoughts and feelings. It is your decision if you express yourself in bullet points, short sentences or complete paragraphs. Others may feel more at ease drawing pictures or shapes with words or phrases inside.
The Benefits of Writing for Caregivers
1. Convenience and Freedom
There are many reasons caregivers find value in journaling. The number one advantage is convenience. As a caregiver, your time is precious and packed full of responsibilities. Many people find freedom in choosing when and where to write because there are no rules. This means you can journal while waiting at a doctor’s appointment for the person you care for or while he or she is asleep.
2. You will increase self-awareness
Writing forces you to slow down and pay attention to what is going on in your life. As you connect within to the forgotten parts of yourself, you discover healing and hope. The page will not judge you and gives you ample room to explore. By acknowledging the emotional hurts, you decrease anxiety and depression.
As you maintain your journal, you can look at previous entries and notice certain patterns in your life. These may appear as ongoing issues or conflicts. Keep writing and read your thoughts, you may find a solution for a long withstanding problem.
As you connect to the present moment, you become empowered to make healthier choices. You will begin to notice sooner when your body aches or how hungry or thirsty you are.
3. Writing helps you express your thoughts and feelings into words.
Writing is not only creative but also therapeutic. This tool can be cathartic by releasing pent up feelings of anger, resentment, fear, sadness and jealousy. As a caregiver, you are outwardly focused on how others feel. Often you ask; what can I do to make you feel better? In order to refill your cup, you need to turn some of that compassionate focus around.
Ask these questions to yourself daily;
How am I feeling?
What do I need and want?
4. Journaling helps you develop a plan to protect and maintain your energy
Writing helps increase your understanding of what maintains and depletes your energy. As an empathic helper, it is important to learn how to protect your energies from people, places and situations. There are numerous ways to set boundaries and limits. Once you find what works for you, implement these strategies into your daily schedule.
As you write, think about what gives you energy and fuels your passion. Use your journal to write about all you accomplish in a day, what you are grateful for and what is good about you as a person. When you experience a tough day, look back on these and remember there are brighter days ahead. Not all caregiving is bad or difficult. There are positive memories, moments of laughter and triumphs (no matter how small they may be). Record these good moments in your journal.
How do I get started?
Get a journal and a pen to write with- Purchase a prompted journal or blank one, along with a writing instrument.
Next create solitude- Give yourself ten minutes a day of alone time. This could be when you wake up or before you go to bed.
Now you have created a time and space to journal, there are no restrictions. Write about whatever you like each day, even briefly. Remember, you can speak what is on your mind but there is a certain power in seeing your truth in the written word.
Dealing with Caregiver Guilt
by Malika Brown, MSW, LSW
Caregivers often carry around undeserved guilt, believing that they aren’t doing enough for their loved ones. This guilt can make the caregiving role even more stressful than it already is. One might ask why a caregiver feels guilty when they’re doing such a courageous job. Here are some reasons:
Resentment for personal time lost – It’s normal to feel like you’re missing something when so much of your time is taken up taking care of someone else. The caregiver thinks that they shouldn’t feel this way.
Unresolved issues – Many times, there are issues stemming from childhood or arguments in the past that hinder the caregiving process. Many caregivers feel guilty about this.
Comparing yourself to others – Some caregivers will look at another caregiver and think that they could never accomplish what that other person did.
Knowing placement is inevitable – There can be tremendous guilt involved when a caregiver has to place their loved one in assisted living or a nursing home.
Dealing with your own issues – You may be dealing with personal or health problems yourself, which takes away from your caregiving responsibilities.
Ways to Cope with Caregiver Guilt
Acknowledge the guilt – It’s normal to feel guilt from time to time. Once it’s recognized, we are better able to deal with it.
Look at the bigger picture – Although you may be stressed with a particular situation now, it will not last forever. Look at the sacrifices you make for your loved one and realize that you are doing a great job.
Accept that you’re human and have flaws – All of us make mistakes from time to time. Some of us may be good at the physical aspects of caregiving, while others may be better able to handle the emotional toll. Recognize your strengths and don’t focus on the negative.
Make time for yourself – This is easier said than done, but it’s a must! Even if it’s just an hour or two a week, go out and have coffee with a friend, catch a movie, attend a caregiver support group, or just curl up and read a book. Taking time out helps you put your situation in better perspective.
Know that you are making the best decision for you and your loved one at that time – This can be hard to accept, especially if you’ve made a promise to a loved on in the past that you can no longer keep. A change in a situation may force you to break that promise, but realize that the promise was made under different circumstances. You are making the best decision with new circumstances.
Deal with unresolved issues or accept them for what they are – Many times, we may be taking care of someone who we resent, for many reasons. You can choose to try and resolve those feelings from the past to allow you to care for that person fairly. You can also choose to allow someone else to care for that person because you know you cannot rightfully do so. Either way, this is something you need to consider if your past with that person is an issue for you. Talk to a professional if necessary to make the best decision for both you and your loved one.
Reach out for support from family and friends; seek caregiver support groups or professional help to work through your feelings of guilt. Know that you are not alone in your caregiving journey and the help is available. Most of all, remember that you are doing the best that you can!
Grieving the loss of a parent: it’s personal
by Jane Vock
Nancy Kriseman, author of The Mindful Caregiver, draws on the concept of “finishing well” to describe a way to approach loss. What does it mean to “finish well” and what is required of you as a caregiver, as a daughter or son, to do this? First off, it means working on your “unfinished business.” Alright, so what is that? For caregivers, it means when you are stuck in negative feelings about your caregiving situation and experiences such as guilt, anger, regret, resentment, etc. When stuck in these negative feelings, the natural flow of grieving is blocked and this can, in Kriseman’s words, “…wreak havoc on your mind, body, and spirit.”
Let go of all judgements and criticisms. Yes, all of them!
In truth, you did the best you could as a caregiver. Period. If you could have done better, you would have. Your parent also did the best they could. If they could have been a “better parent” or “better care receiver,” they would have. Period. This is a time to let go. If you are stuck in anger, guilt, or resentment, for example, the natural feelings of grief that typically come with loss become blocked. And in essence, you create more “unfinished business.”
As with all other LifeStages of caregiving, you will experience this Closing Lifestage with more ease if you allow the feelings to come up and flow through you. Caregivers are no strangers to loss. In fact, the entire caregiving journey is often defined by various types of loss. When the end of caregiving is approaching because your mom or dad is nearing death or has already died, there is also the loss of a caregiving role/identity as well as the loss of a father or a mother.
What is the best advice?
Grieve it out. Complete the experience. Grief is a natural response to loss. While we usually associate grief with the death of someone, any loss can trigger grief including the loss of the caregiver role (loss of identity) and the loss of a cherished dream (how you imagined your life would be, your relationship with your parents or aging would be, retirement would be, etc.).
Some people may refer to the stages of grief and this may be a helpful type of map for you to make sense of how you are feeling and may feel in the future. Be careful, however, not to impose a rigid way of grieving onto yourself.
Elizabeth Kubler-Ross, widely known as the expert on grief and grieving in North America, wisely states that the stages of grief “…were never meant to help tuck messy emotions into neat packages…there is not a typical response to loss , as there is no typical loss. Our grieving is as individual as our lives.”
The messiness of grief makes us acutely aware that the processing of loss cannot be controlled, and is, by definition, untidy and complicated. The only thing you can do “wrong,” so to speak, is to push your feelings away, ignore them, dismiss them, or judge them.
Common grief responses
Even though there is tremendous variability, there are some common grief responses:
shock and disbelief
guilt and remorse
anger and blaming
feeling of being separate
loss of interest
lack of appetite
dreams and/or nightmares
I know. The list is long! You may be surprised to see relief, peace, and joy on the list. Grief and relief can, and often does, show up at the same time. Caregivers who are grieving are often reluctant to publicly acknowledge these latter feelings and can even judge these feelings and then feel guilty. Yikes! Add this guilt to your “unfinished business.”
The process of grief and grieving
So-called ‘normal’ or common grief often begins with the experience of highly intense, time-limited periods of distress that are sometimes referred to as grief bursts or pangs and metaphorically as a (tidal) wave of grief. The experience of grief symptoms tends to occur less frequently, with a briefer duration and lesser intensity over time. Again, be cautious about imposing or accepting someone else’s imposition of a time frame for your grieving. Experts have no agreement on any specific grieving time period, and the best that can be said is that grieving symptoms resolve within the first year or two.
How you grieve, and even if you grieve, depends on many factors including your personality, your coping style and strategies, your life experience, your values, your faith and/or spiritual belief system, the quality of the relationship with the person you were caring for, and the nature of the loss (its significance to you). These factors (and perhaps others not cited here) are exactly what make grieving a highly personal and individual experience.
If you have questions as to whether you are experiencing ‘normal’ grieving, you can consult a health care professional. It may also be beneficial to access a bereavement group or bereavement counseling.
What is Hospice?
by Jon Radulovic, MA
Hospice seeks to “de-institutionalize” the dying experience and provide a more humane system of care for those who have received a terminal diagnosis of six months or less. The first hospice program in this country was opened in New Haven, Connecticut in 1972; this was based on the Hospice Model of Care developed by Dame Cicely Saunders at St. Christopher’s Hospice in Great Britain. Currently, there are over 3,000 hospices in the United States and Puerto Rico.
Hospice is a concept of caring that brings comfort and support to people facing a terminal illness, and to their families. Hospice addresses all the symptoms of the disease with special emphasis on controlling pain and discomfort, allowing the patient and family to focus on maintaining quality of life. Hospice also deals with the emotional, social and spiritual impact of the disease on the patient, the patient’s family, and significant others. Hospice care brings this comfort and support directly into the family’s home enabling the patient to spend his or her final days in a familiar and loving environment.
A hospice team consists of physicians, nurses, aides, social workers, spiritual care givers, counselors, therapists, and volunteers – all of whom are specially trained to provide pain and symptom management for the patient and support for the family or other intimate network. Physicians who have been active in the patient’s care are encouraged to be part of this interdisciplinary team.
Because each person’s needs are unique, the hospice team works with the patient and family to develop a personalized care plan which ensures that the patient and family are at the center of all decision making. Always, the focus is on controlling pain, managing symptoms, and providing comfort, dignity and quality of life.
A unique characteristic of hospice care is the availability of bereavement resources that are an integral part of the hospice philosophy. Hospices have trained professionals working to assist the patient and family with the many aspects of grief which are present during the illness and then continue to provide bereavement services to the family for at least one year following the death. Their experience and understanding of the issues relating to grief, loss, and bereavement have led many hospices to serve as bereavement resources for their local community. Many hospices have support groups and other bereavement services available to serve people in need that have not been hospice clients.
Hospice is an aggressive medical choice that focuses on symptom management, comfort, dignity, and quality of life. Hospice neither lengthens life nor hastens death.
Whenever possible, patients are cared for in their own, or a family member’s, home. However, many hospices have facilities that provide the same care for hospice patients and their support networks. Hospice care is also available in nursing homes and other assisted living settings.
Hospice workers provide the patient and family with information and opportunities to participate in the decision making process.
Data shows that hospice care is less costly than care in a hospital.
The Medicare Hospice Benefit covers 100% of hospice services. Many private insurance plans, HMO’s, and Medicaid in many states also offer hospice benefits.
Bereavement care and resources are available to the family for at least one year; no other healthcare delivery system offers such support.
The patient, family, and/or physician can initiate an information/referral call or visit as soon as a terminal disease is diagnosed, or at the time a patient decides to move from a treatment plan focused on curing the disease to a plan focused on providing comfort and pain relief.
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Helping Someone with Depression
Your support and encouragement can play an important role in your loved one’s recovery.
Here’s how to make a difference.
How can I help someone with depression?
Depression is a serious but treatable disorder that affects millions of people, from young to old and from all walks of life. It gets in the way of everyday life, causing tremendous pain, hurting not just those suffering from it but also impacting everyone around them.
If someone you love is depressed, you may be experiencing any number of difficult emotions, including helplessness, frustration, anger, fear, guilt, and sadness. These feelings are all normal. It’s not easy dealing with a friend or family member’s depression. And if you neglect your own health, it can become overwhelming.
That said, your companionship and support can be crucial to your loved one’s recovery. You can help them to cope with depression symptoms, overcome negative thoughts, and regain their energy, optimism, and enjoyment of life. Start by learning all you can about depression and how to best talk about it with your friend or family member. But as you reach out, don’t forget to look after your own emotional health—you’ll need it to provide the full support your loved one needs.
Understanding depression in a friend or family member
Depression is a serious condition. Don’t underestimate the seriousness of depression. Depression drains a person’s energy, optimism, and motivation. Your depressed loved one can’t just “snap out of it” by sheer force of will.
The symptoms of depression aren’t personal. Depression makes it difficult for a person to connect on a deep emotional level with anyone, even the people they love the most. It’s also common for depressed people to say hurtful things and lash out in anger. Remember that this is the depression talking, not your loved one, so try not to take it personally.
Hiding the problem won’t make it go away. It doesn’t help anyone involved if you try making excuses, covering up the problem, or lying for a friend or family member who is depressed. In fact, this may keep the depressed person from seeking treatment.
Your loved one isn’t lazy or unmotivated. When you’re suffering from depression, just thinking about doing the things that may help you to feel better can seem exhausting or impossible to put into action. Have patience as you encourage your loved one to take the first small steps to recovery.
You can’t “fix” someone else’s depression. As much as you may want to, you can’t rescue someone from depression nor fix the problem for them. You’re not to blame for your loved one’s depression or responsible for their happiness (or lack thereof). While you can offer love and support, ultimately recovery is in the hands of the depressed person.
Recognizing depression symptoms in a loved one
Family and friends are often the first line of defense in the fight against depression. That’s why it’s important to understand the signs and symptoms of depression. You may notice the problem in a depressed loved one before they do, and your influence and concern can motivate them to seek help.
Be concerned if your loved one…
Doesn’t seem to care about anything anymore. Has lost interest in work, sex, hobbies, and other pleasurable activities. Has withdrawn from friends, family, and other social activities.
Expresses a bleak or negative outlook on life. Is uncharacteristically sad, irritable, short-tempered, critical, or moody; talks about feeling “helpless” or “hopeless.”
Frequently complains of aches and pains such as headaches, stomach problems, and back pain. Or complains of feeling tired and drained all the time.
Sleeps less than usual or oversleeps. Has become indecisive, forgetful, disorganized, and “out of it.”
Eats more or less than usual, and has recently gained or lost weight.
Drinks more or abuses drugs, including prescription sleeping pills and painkillers.
How to talk to someone about depression
Sometimes it is hard to know what to say when speaking to someone about depression. You might fear that if you bring up your worries the person will get angry, feel insulted, or ignore your concerns. You may be unsure what questions to ask or how to be supportive.
If you don’t know where to start, the following suggestions may help. But remember that being a compassionate listener is much more important than giving advice. You don’t have to try to “fix” your friend or family member; you just have to be a good listener. Often, the simple act of talking face to face can be an enormous help to someone suffering from depression. Encourage the depressed person to talk about their feelings, and be willing to listen without judgment.
Don’t expect a single conversation to be the end of it. Depressed people tend to withdraw from others and isolate themselves. You may need to express your concern and willingness to listen over and over again. Be gentle, yet persistent.
Ways to start the conversation:
“I have been feeling concerned about you lately.”
“Recently, I have noticed some differences in you and wondered how you are doing.”
“I wanted to check in with you because you have seemed pretty down lately.”
Questions you can ask:
“When did you begin feeling like this?”
“Did something happen that made you start feeling this way?”
“How can I best support you right now?”
“Have you thought about getting help?”
Remember, being supportive involves offering encouragement and hope. Very often, this is a matter of talking to the person in language that they will understand and can respond to while in a depressed state of mind.
Tips for Talking about Depression
What you CAN say that helps:
“You’re not alone. I’m here for you during this tough time.”
“It may be hard to believe right now, but the way you’re feeling will change.”
“Please tell me what I can do now to help you.”
“Even if I’m not able to understand exactly how you feel, I care about you and want to help.”
“You’re important to me. Your life is important to me.”
“When you want to give up, tell yourself you will hold on for just one more day, hour, or minute—whatever you can manage.”
What you should AVOID saying:
“This is all in your head”
“Everyone goes through tough times.”
“Try to look on the bright side.”
“Why do you want to die when you have so much to live for?”
“I can’t do anything about your situation.”
“Just snap out of it.”
“You should be feeling better by now.”
The risk of suicide is real.
What to do in a crisis situation.
If you believe your loved one is at an immediate risk for suicide, do NOT leave them alone!
In the U.S., dial 911 or call the National Suicide Prevention Lifeline at 1-800-273-TALK.
In other countries, call your country’s emergency services number or visit IASP to find a suicide prevention helpline.
It may be hard to believe that the person you know and love would ever consider something as drastic as suicide, but a depressed person may not see any other way out. Depression clouds judgment and distorts thinking, causing a normally rational person to believe that death is the only way to end the pain they’re feeling.
Since suicide is a very real danger when someone is depressed, it’s important to know the warning signs:
Talking about suicide, dying, or harming oneself; a preoccupation with death
Expressing feelings of hopelessness or self-hate
Acting in dangerous or self-destructive ways
Getting affairs in order and saying goodbye
Seeking out pills, weapons, or other lethal objects
A sudden sense of calm after depression
If you think a friend or family member might be considering suicide, don’t wait, talk to them about your concerns. Many people feel uncomfortable bringing up the topic but it is one of the best things you can do for someone who is thinking about suicide. Talking openly about suicidal thoughts and feelings can save a person’s life, so speak up if you’re concerned and seek professional help immediately!
Encouraging the person to get help
While you can’t control someone else’s recovery from depression, you can start by encouraging the depressed person to seek help. Getting a depressed person into treatment can be difficult. Depression saps energy and motivation, so even the act of making an appointment or finding a doctor can seem daunting to your loved one. Depression also involves negative ways of thinking. The depressed person may believe that the situation is hopeless and treatment pointless.
Because of these obstacles, getting your loved one to admit to the problem—and helping them see that it can be solved—is an essential step in depression recovery.
If your friend or family member resists getting help:
Suggest a general check-up with a physician. Your loved one may be less anxious about seeing a family doctor than a mental health professional. A regular doctor’s visit is actually a great option, since the doctor can rule out medical causes of depression. If the doctor diagnoses depression, they can refer your loved one to a psychiatrist or psychologist. Sometimes, this “professional” opinion makes all the difference.
Offer to help the depressed person find a doctor or therapist and go with them on the first visit. Finding the right treatment provider can be difficult, and is often a trial-and-error process. For a depressed person already low on energy, it is a huge help to have assistance making calls and looking into the options.
Encourage your loved one to make a thorough list of symptoms and ailments to discuss with the doctor. You can even bring up things that you have noticed as an outside observer, such as, “You seem to feel much worse in the mornings,” or “You always get stomach pains before work.”
Supporting your loved one’s treatment
One of the most important things you can do to help a friend or relative with depression is to give your unconditional love and support throughout the treatment process. This involves being compassionate and patient, which is not always easy when dealing with the negativity, hostility, and moodiness that go hand in hand with depression.
Provide whatever assistance the person needs (and is willing to accept). Help your loved one make and keep appointments, research treatment options, and stay on schedule with any treatment prescribed.
Have realistic expectations. It can be frustrating to watch a depressed friend or family member struggle, especially if progress is slow or stalled. Having patience is important. Even with optimal treatment, recovery from depression doesn’t happen overnight.
Lead by example. Encourage the person to lead a healthier, mood-boosting lifestyle by doing it yourself: maintain a positive outlook, eat better, avoid alcohol and drugs, exercise, and lean on others for support.
Encourage activity. Invite your loved one to join you in uplifting activities, like having dinner. Exercise is especially helpful, so try to get your depressed loved one moving. Going on walks together is one of the easiest options. Be gently and lovingly persistent—don’t get discouraged or stop asking.
Pitch in when possible. Seemingly small tasks can be very hard for someone with depression to manage. Offer to help out with household responsibilities or chores, but only do what you can without getting burned out yourself!
Taking care of yourself
There’s a natural impulse to want to fix the problems of people we care about, but you can’t control someone else’s depression. You can, however, control how well you take care of yourself. It’s just as important for you to stay healthy as it is for the depressed person to get treatment, so make your own well-being a priority.
Remember the advice of airline flight attendants: Put on your own oxygen mask before you assist anyone else. In other words, make sure your own health and happiness are solid before you try to help someone who is depressed. You won’t do your friend or family member any good if you collapse under the pressure of trying to help. When your own needs are taken care of, you’ll have the energy you need to lend a helping hand.
Speak up for yourself. You may be hesitant to speak out when the depressed person in your life upsets you or lets you down. However, honest communication will actually help the relationship in the long run. If you’re suffering in silence and letting resentment build, your loved one will pick up on these negative emotions and feel even worse. Gently talk about how you’re feeling before pent-up emotions make it too hard to communicate with sensitivity.
Set boundaries. Of course you want to help, but you can only do so much. Your own health will suffer if you let your life be controlled by your loved one’s depression. You can’t be a caretaker round the clock without paying a psychological price. To avoid burnout and resentment, set clear limits on what you are willing and able to do. You are not your loved one’s therapist, so don’t take on that responsibility.
Stay on track with your own life. While some changes in your daily routine may be unavoidable while caring for your friend or relative, do your best to keep appointments and plans with friends. If your depressed loved one is unable to go on an outing or trip you had planned, ask a friend to join you instead.
Seek support. You are NOT betraying your depressed relative or friend by turning to others for support. Joining a support group, talking to a counselor or clergyman, or confiding in a trusted friend will help you get through this tough time. You don’t need to go into detail about your loved one’s depression or betray confidences; instead focus on your emotions and what you are feeling. Make sure you can be totally honest with the person you turn to—choose someone who will listen without interruption and without judging you.
Authors: Melinda Smith, M.A., Lawrence Robinson, and Jeanne Segal, Ph.D.
Caregiving Issues Facing
the Multi-Generational Family
by Helen Hunter, ACSW, LSW
There are many family situations today where you can find three, four or even five generations living under one roof. While the circumstances that result in multi-generational living vary from financial to health-related to simple family closeness, those who live in these types of households deal with many issues. Serving as the main caregiver for an older relative, dealing with grandchildren and having one of their own children living back at home after several years on his/her own can be a challenge for the best of families.
In dealing with your older relative, the most critical aspect is not just tending to their physical needs, but providing them with the emotional support they require as well. Often, it is coping with these emotional needs that is most time consuming and stressful. Family members often ask “How do I talk to my relative about. . . “(You fill in the blank.) The answer is “Not easily.”
Remember, your job is to help your older relative make informed, reasonable decisions for themselves, not to make the decision for them. It is also important to realize that they may be frightened about their overall condition, and that this frightened state is relayed through anger toward YOU, the main caregiver. It is crucial to keep the lines of communication open between the generations so that both of you can express your fears and concerns as honestly as possible. You may also wish to gain as much knowledge as possible regarding the older person’s condition so that you know what to expect of them now and in the future. In that way, you can let them maintain their sense of independence and well-being and provide the needed care when it becomes necessary.
Children, even at an early age, can be asked to take on family responsibilities. They can be very helpful and resourceful. They can perform everyday chores like cleaning and help in preparation of meals and laundry. They can also help Grandma or Grandpa by sitting with them, reading together or watching TV, among other things. By involving children, you are giving them an honest look into the daily caregiving process and you open the door to start a dialogue about aging issues in general.
The relationship between an older relative and a child is invaluable in that the older person provides educational and historical information that is passed on to another generation and the child can give new and fresh insight on things for the older person.
When an older relative begins to fail, either mentally or physically, it can be very confusing and sometimes frightening for a child. There are many resources geared specifically for children that explain the aging process. Children are seen as extremely therapeutic assets as families deal with the daily issues associated with the care of a relative.
Older relatives can also be an invaluable resource to their grandchildren. They can serve as educators, story tellers and, in many instances, serve as the primary providers of care to their grandchildren. Many older people end up “raising” their grandchildren due to a variety of circumstances. These older relatives struggle not only with the daily demands of care needed by their grandchildren, but also with the concerns and struggles that their own children (the grandchildren’s parents) face and their own health and financial issues.
Those who are in the “sandwich generation” often are faced with the daily demands of care needed by their parents or older relatives AND are responsible for the raising of their own children. In addition, they may have to deal with their own health and financial worries. Other responsibilities faced by this generation include the demands of a work schedule and their relationship with a spouse or significant other, in addition to their ongoing relationship with siblings and close friends.
Regardless of their age, there are many instances where the main caregiver in the family refuses to acknowledge that they can’t handle the load. They are too caught up in the daily grind that they don’t recognize the warning signals, which can include extreme fatigue, lack of rest, irritability, and frustration over lack of free time. Letting others know your feelings and that you need help is crucial to the caregiver’s mental and physical well-being.
It is also important to negotiate the exact roles of each family member in terms of providing care. Some may feel more comfortable with hands-on duties – others may want to only focus on household chores or helping with transportation or financial and legal issues.
There are many instances where the care receiver is very stubborn and resistant to any help, even from family members. In these cases you need to be FIRM in expressing the reality of the situation and that the person needs assistance. It is particularly important for those living in multi-generational households who often are providing 24 hours a day/7 days a week care to have an occasional respite break.
With family members living longer, many individuals are faced with the prospect of being a caregiver for a significant number of years. More and more families are opting to live in a multi--generational household for a variety of reasons, including providing care for a loved one. It is important for the family to recognize that, in many cases, they will not be able to tend to all the needs of their relative, and that they will have to rely on others for occasional support. The support is available – just ask.
I am and I will:
Remembering how Africa’s first hospice was founded 40 years ago
By: Wendy Zvakawapano, Island Hospice & Healthcare
On World Cancer Day we are reminded of our founder who, 40 years ago, established the first hospice on the African continent following the untimely death of her daughter from cervical cancer.
Island Hospice Service was founded by Maureen Butterfield. Maureen’s teenage daughter, Frances, battled with cervical cancer. Frances died in 1977, a few days short of her twentieth birthday.
After the loss of her daughter, Maureen deeply regretted that in the eight months of her daughter’s illness, the word ‘death’ never entered their conversations.
She felt they were never truly prepared for her death.
On a consolatory trip to England, Maureen heard about the modern hospice movement. Then, in early 1979, Maureen travelled to a symposium at WITS University in Johannesburg to hear Dame Cecily Saunders speak.
Saunders founded the first modern hospice (home of rest for the terminally ill) in 1967, providing high quality palliative care in Sydenham, south east London.
Maureen returned home to Zimbabwe inspired, and, with a few friends, organized an exploratory gathering in Harare.
The response was overwhelming. So, further discussions followed, leading up to the meeting at which the fledgling service was constituted.
On 3 May 1979, the first Island meeting was held at the University of Zimbabwe to discuss provision of ‘Better End of Life Care’ (EOL). Island is an acronym: Integrated, Significant Living and Dying. The name Island came from John Donne’s poem, ‘No Man is an Island’.
No Man is an Island by John Donne (1624)
“No man is an island
Entire of itself
Every man is a piece of the continent
A part of the main
A clod to be washed away by the sea
Europe is the less
As well as if the promontory were
As well as if a manor of thy friend’s
Or of thine own were
Any man’s death diminishes me
Because I am involved in mankind
And therefore, never send to know for whom the bell tolls
It tolls for thee.”
In 2014, Island Hospice Service changed its name to Island Hospice & Healthcare to better communicate the expansion of its services. In addition to providing palliative and bereavement care services, which remains Island’s focus, the organization operates a nursing agency as a social enterprise initiative and its clinical team are, when required, involved in prevention services and campaigns.
Today Island Hospice and Healthcare operates four branches across the country providing services to thousands of Zimbabweans. This despite the difficulties we face in Zimbabwe. We have been chosen by the World Health Organization to be evaluated to be a demonstration site for Africa and in our 40th year, we are proud to be working with the Ministry of Health and Child Care to integrate palliative care into the health delivery system to ensure that ALL Zimbabweans in need of palliative care receive it.
Island Hospice and Healthcare joins the world in commemorating the World Cancer Day and as we do we remember Maureen Butterfield’s work in the birth of Island Hospice and Healthcare, the first of its kind in Africa 40 years ago.
Make sure you visit the Island Hospice and Healthcare website to keep up to date with their work.
Editor's Note: Did you know that 75% of the world does not have access to sufficient pain medication when suffering from severe pain. Please watch the following one minute or so video & spread the word about the need for hospice and palliative care in every corner of the world!
Worried about Getting Dementia? Here’s What to Do.
by Brenda Davie
Do you have a parent with dementia? Have you wondered about your own risk level of developing a dementia? Well I have. What I’ve learned is that there are certain risk factors I can do nothing about and others that I can change. In fact researchers have investigated lifestyle changes that can minimize your risks and lower your chances of developing dementia.
What is dementia?
Dementia is an umbrella term used to describe signs and symptoms your parent may be experiencing and/or that you are observing in them. Dementia is the loss of cognitive functioning (thinking, remembering, and reasoning) and the loss of behavioral abilities. These functions include memory, language skills, visual perception, problem solving, self-management, the ability to focus and pay attention, personality changes, and ability to control emotions and moods. As you can see, the list is long, and the loss of these functions interferes with your parent’s daily life, activities and relationships.
Risk factors are characteristics of your lifestyle, environment, and genetic background that increase the likelihood of getting a disease. Risk factors, on their own, are not causes of a disease. Rather, risk factors represent an increased chance, but not a certainty, that dementia will develop.
There are risk factors that are impossible to change, and for dementia, these include age, gender and genetics. The good news is there are risk factors that you can change! The best way to reduce the risk of Alzheimer’s disease and other types of dementia is to lead a healthy lifestyle that takes care of both your body and your brain.
What are some prevention strategies?
Studies continue to show a connection between a healthy living strategy and the reduced risk of dementia. Here’s what you can try:
Exercise your brain
Give your brain a workout everyday. People who actively use their brains throughout their life may be more protected against brain cell damage. It can be as simple as dialing a phone number or brushing your teeth with your less dominant hand. Challenging your mind can be fun too. Play games, learn a new language, pick up playing an instrument, do jumble puzzles – all ways to keep your brain active.
Move it! Move it! Move it!
Physical activity pumps blood to the brain, which nourishes the cells with nutrients and oxygen, and may even encourage new cells. Think of moving as “activity” not “exercise” and something you enjoy like gardening, dancing, a leisurely swim, a nature walk. Investigations show that almost any kind physical activity (not just the dreaded gym workout) can help keep your body and your brain healthy. Start where you can with achievable goals. Consider adding a bit of physical activity into your daily routine. Choose a walk to the store rather than driving the car or take the stairs instead of the escalator or elevator for one or two floors.
What’s good for the heart is good for the brain
Many of the same strategies to reduce heart disease can also benefit your brain. Track your numbers: keep your blood pressure, cholesterol, blood sugar and weight within normal ranges.
It is important to follow your health practitioner’s recommendations to regulate high blood pressure and high cholesterol, monitor diabetes and manage any weight issues.
Smokers are 45% more likely to develop Alzheimer’s disease compared to non-smokers or ex-smokers. It is known that smoking also increases the risk of vascular problems, which are also risk factors for dementia. Avoid smoking or quit. If you smoke, talk to your health practitioner about smoking cessation programs and medications
A drink here and there won’t hurt
People who drink alcohol excessively have the highest risk of dementia compared to people who drink moderately or not at all. Higher levels of alcohol over a long period of time can increase a person’s risk of developing dementias such as Alzheimer’s disease, vascular dementia or alcohol related dementia.
Getting your ZZZZZZ’s!
Being sleep-deprived can significantly impair your memory, mood and function. Addressing your sleep concerns could be a fairly simple way to improve your brain health. Consider a sleep clinic referral for an assessment if sleeping is a concern (e.g. sleep apnea, wake sleep cycle disruptions)
So nice to meet you!
Joining a service club, volunteering, or meeting new people who share a common interest are great opportunities to stay socially connected. Keep up with friends and family–go ahead and visit, call or text or use email or Facebook. Social interaction may also help slow down the progression of the dementia.
OW, I really hurt my head!
People who experience severe or repeated head injuries are at increased risk of developing dementia (e.g. pro athletes in boxing, football or hockey). So of course, protect your head by wearing a helmet when riding a bicycle, skiing, skateboarding, or playing sports. Falls can also cause brain and head injuries. In the home, consider installing handrails and/or grab bars to lower risks of falls. When traveling in your car, not only is it a good practice to wear your seat belt, it is the law.
OK…Test my stress
You can take steps to reduce the harmful effects of stress on your body and mind. The key is to find a variety of techniques that work for you such as prayer and meditation, deep breathing, massage, or physical exercise. Stress could play a role in dementia development but is unlikely to be the only factor that causes the condition. Endeavor to take personal time for yourself and find a balance that limits stress.
Debunking the aluminum myth
A popular theory in 1970’s said that drinking from aluminum cans, cooking in aluminum pots and pans, or using aluminum-containing antiperspirants may be linked to dementia. My Mom threw out all her aluminum cookware when this theory first surfaced. Use of aluminum in pots and pans only contributes to a very small percentage of the average person’s intake of aluminum. Current research provides no convincing evidence that exposure to trace elements of aluminum is connected to the development of dementia. The aluminum theory can now be laid to rest.
In a nutshell
Many of these well-researched steps to reduce your risk of developing dementia are basically suggestions for overall healthy living. Is there a lifestyle strategy here that you are interested in trying?
10 Ways to Be a True Friend
to a Family Caregiver
By Carol Bradley Bursack
Caregivers often find that many of their superficial friends drift away over time because the caregiver is too busy to have fun. These friends are not bad people. They simply don't know what to do to help the caregiver and they find it easier to share their time with people whose lives are less complicated.
Are you this kind of friend?
If you are just a casual friend to the caregiver, perhaps it's best to remain that way. Still, some of you really care about your caregiving friend and want to help, but you don't know how.
The following tips may give your some insight into what you can do to help your friend as he or she takes care of their elderly loved one. (Remember to take this as general advice since every caregiver and every care situation is unique.)
1. Listen attentively. Really listen to your caregiving friend. Caregivers are rarely expecting you to solve their problems, but they sometimes need to vent their frustration and sorrow. By occasionally responding during the conversation, with sounds or short comments that assure the caregiver that you are engaged in the story, you can show that you really do care. Pretending to listen rarely fools anyone. If you want to be a true friend, listen attentively.
2. Don't tell horror stories. A person who has just gone through the agony of placing a loved one in a care facility doesn't need to hear about a substandard nursing home in another community where something terrible reportedly occurred. You may feel that you are just conversing about the topic, but these stories will only increase the caregiver's feelings of guilt and worry. Unless what you have to say is truly useful in preventing something bad from happening, avoid negative chatter.
3. Don't judge. Don't second guess the caregiver's decisions. Whether that means saving your nursing home horror stories for someone who won't be emotionally affected by them, or refraining from saying that the caregiver is crazy for quitting a paying job to care for a loved one, she or he doesn't need negative judgment. You are not in their shoes.
4. Say, "What can I do to help?" A caregiver who is coping with a tragic end-of-life situation is as vulnerable as someone who has lost a loved one to death. Sometimes the caregiver is essentially attending a living death. You, the friend, can't be expected to know what kind of help is needed, but by asking what is needed you sound more sincere than you would by offering the generic comment of "let me know if I can do something."
5. Offer the gift of your time. Help research the care receiver's diseases. Offer to sit with the care receiver while your friend has some alone time. Offer to run some errands. Offer to cook a meal. Just don't offer what you can't deliver.
6. Give your friend space. Sometimes a caregiver wants nothing more than to be left alone. Don't imply that because the caregiver isn't actively rushing around that he or she has nothing to do. Be alert for true isolation, as there are deadly consequences of loneliness, but take into account your friend's normal personality. A normally gregarious person may need some prodding to go out, but many people need time alone to regroup before they can enjoy anything social.
7. Bring food. This can be a full meal, a main dish or a dessert. Something that can be frozen is often best. Let your friend know that this gift is intended for whenever it would best suit his or her schedule. That way, you are not overriding plans they may already have made.
8. Offer to take your friend out. First, though, if the person is providing care in the home without backup, assure the caregiver that you have someone trustworthy – perhaps someone from your group of friends – who can sit with the person who needs care. Caregivers can't relax when they are worried about their loved one's welfare.
9. Don't make more work. Avoid doing anything in the name of caring that makes more work for the caregiver, such as saying that you are gathering up the gang and you'll all be over to visit. No matter how often you repeat that the caregiver should not go to any trouble, the caregiver will feel pressured to prepare for company. This is not meant to discourage a good friend from visiting. Just ask when a good time can be arranged. There are exceptions to group visits. If this particular caregiver would love a whole group to stop over, be clear that you are handling all preparations.
10. Don't exclude your friend because she often has to decline invitations. Don't hound the caregiver with invitations that you know can't be accepted, but do make sure that your friend is still kept in the loop. Offer invitations – ideally with practical help, when needed – that can conceivably be accepted. At the same time, don't lay guilt on your friend for declining. Sometimes caregivers are simply too fatigued to want to do anything at all. That does not mean that they don't want to be remembered.
As with nearly everything else that has to do with caregiving, there is no guarantee that you, as a friend, will always do the right thing. Caregivers are unique, and care situations can change dramatically at any moment.
Don't wallow in guilt if you've neglected your caregiving friend or done something "wrong." The unfortunate reality is that, oftentimes, when caregiving starts, friends scatter. Just keep trying to show your friendship in every practical way that you can.
Remember, you could eventually be in the caregiver's shoes (if you haven't already traveled that road). Your caregiving friend could, one day, become your most valued supporter.
Color Therapy for Dementia Care
by Linda Slaton Anderson, M.S.
Do you remember the Irish legend about the leprechaun with a pot of gold at the end of the rainbow? Even if we don’t find a pot of gold, rainbows can remind us to celebrate the mysteries and beauties of colors.
Color therapy can be beneficial for those with memory loss. Joshua J. Freitas, author of The Dementia Concept, recommends using different colors to provide contrast in spaces and to help distinguish different objects. For example, painting a door a color that contrasts with the wall makes the door easier to find. Putting colorful tape on the handles of walkers makes them easier to locate.
Some researchers suggest using the color pink to reduce combative behavior. The Pink Effect refers to the calming effect of exposure to large amounts of the color pink, helping to reduce feelings of aggression and anger.
If wandering is a concern, some therapists recommend placing black mats in front of doors or stairs since Alzheimer’s patients perceive them to be holes and thus tend to avoid walking on them. The color red promotes participation and stimulates appetite, and green and blue colors promote relaxation.
Colors are processed by our brains more quickly than words are. Let’s look at some colors and the responses associated with them:
RED is associated with strength and vitality. It is the most emotionally intense color. Red stimulates a faster heartbeat and faster breathing. If patients are not eating enough, using red plates may increase their appetites.
ORANGE is associated with sociability and happiness. Wearing orange may stimulate enthusiasm and creativity.
YELLOW speeds metabolism. Although yellow is usually considered a cheerful color, research shows that people lose their tempers more often in yellow rooms. So, if a patient exhibits aggression, it may be helpful to minimize exposure to yellow.
GREEN is a calming, tranquil color. It is closely associated with nature and is thought to evoke feelings of generosity and relaxation. Green is the easiest color on the eyes and can improve vision. Green is the last color dementia patients lose the ability to see; so green is a good color for caregivers to wear.
BLUE is the color of the sky and ocean and is universally the most popular color. Blue is associated with tranquility and creativity. It is a popular color for bedrooms since it causes the body to produce the calming hormone melatonin, resulting in more peaceful sleep --an aid for dementia patients as well as their caregivers.
PURPLE is the color of royalty. It is considered to be a spiritual color and is associated with mystery. Dementia patients may think of purple objects as sacred.
My mother was an art teacher who encouraged us to notice and appreciate the colors around us, thus adding special joy and beauty to our daily lives.
The following list offers suggestions on ways we can enrich our lives with color:
Spend time outdoors and focus on the colors of nature
Decorate with colorful flowers
Take time to observe paintings, photographs, and other colorful artwork
Paint with bright colors, and use colored pencils for adult coloring books
Look at colorful illustrations in books, magazines, etc.
Create artistic meals with foods of various colors
Incorporate a variety of colors in clothing and furnishings
Slow down and take time to visually absorb the colors of the world around us.
How Do You Grieve a Violent Death?
By Barbara Karnes, RN, Hospice Educator
Dear Barbara: Any writings on how to say goodbye when tragedy takes a loved one's life with violence?
I am not familiar with any specific books on grief that address death through violence although there must be many. Marty Tousley RN, MS, FT, DCC is my go to person on grief. www.Griefhealing.com
Normal grief is depression. It is sadness. It is bargaining. It is anger. It physically hurts. It is loneliness and isolation. It makes us question our faith. Actually it makes us question everything we thought we believed. It builds fear within us. It highlights that I could die, too. It is all of these things and more rolled into one huge emotion we call grief.
Sudden death by accident, suicide and certainly by violence intensifies those normal grief responses. Everything we feel with normal grief is as if we are being held under a magnifying glass, everything is more intense, hurts more. Part of grieving is questioning how this can happen. Why me? Why her? Why him?
How to say goodbye? That is a hard question because with all that I have written above we will each say our goodbyes in our own unique way, expressed in our personality, and generally within the rituals of our culture.
What I have found to help us with the unfinished business that sudden death (violent death is generally sudden) brings is to write the person who has died a letter. There is power in writing, channelling thoughts from mind through the fingers, pen onto paper. Write everything you have wanted to but didn’t say, everything that your heart needs to say. Write a short note or pages but write about the positive times and about the challenging parts of the relationship. Write everything you wish you could say but now can’t.
If there is a visitation put the note with the body in the coffin. If you can’t be there give it to the funeral director to put with the body. If the funeral has already occurred, even years later, write your letter then burn it and scatter the ashes to the wind.
There are no words, no prayers and actually no actions that can ease the pain the death of someone we care about brings. The pain will always be there. I offer that how well we go on living, what we do to make a difference can be our tribute to the life ended too soon.
Something More... about How Do You Grieve a Violent Death?
I wrote a booklet on grief called My Friend, I Care. Could you or someone you know use it?
Helping Children Cope
with Traumatic Events
Children and teens are more vulnerable to being traumatized by the coronavirus pandemic, violent crime, or other disasters. But with the right parental support, they’re also able to recover faster. The effects of trauma on children and teens.
Being involved in the COVID-19 pandemic, a serious accident, violent crime, terrorist attack, or natural disaster, such as an earthquake or hurricane, can be overwhelmingly stressful for children. A disaster, crisis, or other troubling event can cause traumatic stress, undermine your child’s sense of security, and leave them feeling helpless and vulnerable—especially if the event stemmed from an act of violence, such as a mass shooting or terrorist attack. Even kids or teens not directly affected by a disaster can become traumatized when repeatedly exposed to horrific images of the event on the news or social media.
Whether your child lived through the disturbing event itself, witnessed it, or experienced traumatic stress in the aftermath, they’re likely to be affected by an array of intense, confusing, and frightening emotions. While unpleasant symptoms may fade over time, there’s plenty you can do as a parent or guardian to support and reassure a traumatized child. Using these coping tips, you can help your child manage symptoms of traumatic stress, rebuild their sense of safety, and move on from the traumatic event.
Signs and symptoms of traumatic stress in kids and teens
Traumatic stress is a normal reaction to a natural or manmade disaster or other disturbing event. It can leave children of any age feeling overwhelmed by stress and trigger a wide range of intense emotions and physical or behavioral reactions. These in turn can affect your child’s mood, appetite, sleep, and overall well-being.
Signs of Trauma in Kids and Teens
Infants under age 2 may:
Fuss more or be harder to soothe
Exhibit changes in sleep or eating patterns
Children age 2 to 5 may:
Show signs of fear
Cling to parent or caregiver more
Cry, scream, or whine
Move aimlessly or freeze up
Regress to earlier childhood behaviors, such as thumb-sucking or bedwetting
Children age 6 to 11 may:
Lose interest in friends, family, or activities they used to enjoy
Experience nightmares or other sleep problems
Become moody, disruptive, or angry
Struggle with school and homework
Complain of physical problems such as headaches or stomachaches
Develop unfounded fears
Feel depressed, emotionally numb, or guilty over what happened
Adolescents age 12 to 17 may:
Have flashbacks to the event, suffer from nightmares or other sleep problems
Avoid reminders of the event
Abuse alcohol, drugs, or nicotine products
Act disruptive, disrespectful, or aggressive
Complain of physical ailments
Feel isolated, guilty, or depressed
Lose interest in hobbies and interests
Have suicidal thoughts
Whatever the age of your child, it’s important to offer extra reassurance and support following a traumatic event. With your love and guidance, the unsettling thoughts and feelings of traumatic stress can start to fade and your child’s life can return to normal in the days or weeks following the crisis or disturbing event.
Helping your child cope with a disaster or traumatic event
Your child’s reaction to a disaster or traumatic event can be greatly influenced by your own response. Children of all ages—even independence-seeking teenagers—look to their parents for comfort and reassurance at times of crisis. If you experienced the traumatic event alongside your child, it’s crucial to take steps to cope with your own traumatic stress.
Even young infants can pick up on their parents’ anxiety and stress. By taking care of your own emotional health and well-being, you’ll be more of a calming influence and better able to help your child. Since the childhood impulse to imitate is strong, if your child sees you taking steps to cope with the effects of the trauma, they’re likely to follow.
You can also:
Remember that children react to trauma in different ways. And their feelings can come and go in waves. Your child may be moody and withdrawn at certain times, frozen with grief and fear at other times. There’s no “right” or “wrong” way to feel after a traumatic event so don’t try to dictate what your child should be thinking or feeling.
Encourage your child to openly share their feelings. Let them know that whatever feelings they are experiencing are normal. Even unpleasant feelings will pass if your child opens up about them. While many teens may be reluctant to talk about their feelings with a parent, encourage them to confide in another trusted adult such as a family friend, relative, teacher, or religious figure. It’s important to talk—even if it’s not with you.
Allow them to grieve any losses. Give your child time to heal and to mourn any losses they may have experienced as a result of the disaster or traumatic event. That could be the loss of a friend, relative, pet, home, or simply the way their life used to be.
Discourage your child from obsessively reliving the traumatic event. Continually dwelling on or replaying footage of the event can overwhelm your child’s nervous system. Encourage activities that keep your child’s mind occupied so they’re not solely focusing on the traumatic event. You could read to your child, play games together, or simply watch an uplifting movie.
De-stress as a family. Even young children can use simple breathing exercises to relieve stress and feel more at ease in the world, while older kids may be able to master other relaxation techniques.
Tip 1: Rebuild trust and safety
Trauma can alter the way a child or teen sees the world, making it suddenly seem a much more dangerous and frightening place. Your child may find it more difficult to trust both their environment and other people. You can help by rebuilding your child’s sense of safety and security.
Make your child feel safe again. Hugging and reassuring can help make a child of any age feel secure. While teens may try to tough it out and avoid being held, your physical affection is still important in making them feel safe again.
Encourage your child to pursue activities they enjoy. Try to make sure your child has space and time for rest, play, and fun.
Maintain routines. Establishing a predictable structure and schedule to your child’s life can help to make the world seem more stable again. Try to maintain regular times for meals, homework, and family activities.
Speak of the future and make plans. This can help counteract the common feeling among traumatized children that the future is scary, bleak, and unpredictable.
Keep your promises. You can help to rebuild your child’s trust by being trustworthy. Be consistent and follow through on what you say you’re going to do.
If you don’t know the answer to a question, don’t be afraid to admit it. Don’t jeopardize your child’s trust in you by making something up.
Remember that children often personalize situations. They may worry about their own safety even if the traumatic event occurred far away. Reassure your child and help place the situation in context.
Tip 2: Minimize media exposure
Children who’ve experienced a traumatic event can often find relentless media coverage to be further traumatizing. Excessive exposure to images of a crisis or disturbing event—such as repeatedly viewing video clips on social media or news sites—can even create traumatic stress in children or teens who were not directly affected by the event.
Limit your child’s media exposure to the traumatic event. Don’t let your child watch the news or check social media just before bed, and make use of parental controls on the TV, computer, and phone to prevent your child from repeatedly viewing disturbing footage.
As much as you can, watch news reports of the traumatic event with your child. You can reassure your child as you’re watching and help place information in context.
Avoid exposing your child to graphic images and videos. It’s often less traumatizing for a child or teen to read the newspaper rather than watch television coverage or view video clips of the event.
Tip 3: Engage your child
You can’t will your child to recover from a traumatic experience, but you can play a major role in the healing process by simply spending time together and talking face to face—free from TV, phones, video games, and other distractions. Do your best to create an environment where your kids feel safe to communicate what they’re feeling and to ask questions.
Provide your child with ongoing opportunities to talk about what they went through or what they’re seeing in the media. Encourage them to ask questions and express their concerns but don’t force them to talk.
Communicate with your child in an age-appropriate way. Younger children, for example, will respond to reassuring hugs and simple phrases such as “It’s over now” or “It’s all going to be okay.” Older children, though, will draw more comfort from hearing facts and information about what happened.
Acknowledge and validate your child’s concerns. The traumatic event may bring up unrelated fears and issues in your child. Comfort for your child comes from feeling understood and accepted by you, so acknowledge their fears even if they don’t seem relevant to you.
Reassure your child. The event was not their fault, you love them, and it’s okay for them to feel upset, angry, or scared.
Don’t pressure your child into talking. It can be very difficult for some kids to talk about a traumatic experience. A young child may find it easier to draw a picture illustrating their feelings rather than talk about them. You can then talk with your child about what they’ve drawn.
Be honest. While you should tailor the information you share according to your child’s age and personality, honesty is important. Don’t say nothing’s wrong if something is wrong.
Do “normal” activities with your child that have nothing to do with the traumatic event.
Encourage your child to seek out friends and pursue games, sports, and hobbies that they enjoyed before the incident. Go on family outings to the park, enjoy a games night, or watch a movie together.
Tip 4: Encourage physical activity
Physical activity can burn off adrenaline, release mood-enhancing endorphins, and help your child or teen sleep better at night.
Find a sport that your child enjoys. Activities such as basketball, soccer, running, martial arts, or swimming that require moving both the arms and legs can help rouse your child’s nervous system from that “stuck” feeling that often follows a traumatic experience.
Offer to participate in sports, games, or physical activities with your child. If they seem resistant to get off the couch, play some of their favorite music and dance together. Once a child gets moving, they’ll start to feel more energetic.
Encourage your child to go outside to play with friends or a pet and blow off steam.
Schedule a family outing to a hiking trail, lake, or beach. Spending time in nature can ease stress and boost a child’s overall mood.
Take younger children to a playground, activity center, or arrange play dates.
Tip 5: Feed your child a healthy diet
The food your child eats can have a profound impact on their mood and ability to cope with traumatic stress. Processed and convenience food, refined carbohydrates, and sugary drinks and snacks can create mood swings and worsen symptoms of traumatic stress. Conversely, eating plenty of fresh fruit and vegetables, high-quality protein, and healthy fats can help your child or teen better cope with the ups and downs that follow a disturbing experience.
Focus on overall diet rather than specific foods. Kids should be eating whole, minimally processed food—food that is as close to its natural form as possible.
Limit fried food, sweet desserts, sugary snacks and cereals, and refined flour. These can all negatively affect a child’s mood.
Cook more meals at home. Restaurant and takeout meals have more added sugar and unhealthy fat so cooking at home can have a huge impact on your kids’ health.
Make mealtimes about more than just food. Gathering the family around a table for a meal is an ideal opportunity to talk and listen to your child without the distraction of TV, phones, or computers.
When to seek treatment for your child’s trauma
Usually, your child’s feelings of anxiety, numbness, confusion, guilt, and despair following a crisis, disaster, or other traumatic event will start to fade within a relatively short time. However, if the traumatic stress reaction is so intense that it interferes with your child’s ability to function at school or home—or if the symptoms don’t begin to fade or even become worse over time—they may need help from a mental health professional.
When traumatic stress symptoms don’t ease up and your child’s nervous system remains “stuck,” unable to move on from the event for a prolonged period of time, they may be experiencing post-traumatic stress disorder (PTSD).
Warning signs include:
Six weeks have passed, and your child is not feeling any better
Your child is having trouble functioning at school
Your child is experiencing terrifying memories, nightmares, or flashbacks
The symptoms of traumatic stress manifest as physical complaints such as headaches, stomach pains, or sleep disturbances
Your child is having an increasingly difficult time relating to friends and family
Your child or teen is experiencing suicidal thoughts
Your child is avoiding more and more things that remind them of the traumatic event
in traumatized kids and teens
Take any suicidal talk or behavior seriously. It’s not just a warning sign that your child or teen is thinking about suicide—it’s a cry for help. Please read Suicide Prevention or call a suicide helpline:
In the U.S., call National Suicide Prevention Lifeline at 1-800-273-8255.
In the UK, call Samaritans at 08457 90 90 90.
In Australia, call Lifeline at 13 11 14.
In other countries, visit IASP to find a helpline near you.
Written by: Melinda Smith, M.A., Lawrence Robinson, and Jeanne Segal, Ph.D.
Being Stoic for Another's Sake
Comes at A High Cost --
After the Death of a Child.
Is Your Way of Grieving Working?
(Research results and article written by the Association for Psychological Science)
In the wealth of studies about parental grief, little attention has been paid to precisely how couples relate to each other as they struggle to come to terms with the death of a child. A new study addresses this gap in bereavement research by focusing on the way that couples together process the grief of losing a child.
Among life's many tragedies, the death of a child is one that is perhaps the greatest for parents. No matter what the age of the child or the cause of death, the irrefutable fact of the loss is one that shatters the normal cycle of life, leaving parents traumatized and often incapacitated by grief. Research on coping with bereavement has focused primarily on the individual, despite the fact that family and married relationships are all profoundly disrupted by the loss. But in the wealth of studies about parental grief, little attention has been paid precisely to how couples relate to each other as they struggle to come to terms with the death of a child.
A new research article published in Psychological Science, a journal of the Association for Psychological Science, addresses this gap in bereavement research by focusing on the way that couples together process the grief of losing a child. "Scientific literature focused on individual rather than interdependent processes in coping with bereavement, despite the fact that bereaved people do not grieve alone and the way one person grieves likely influences another," says psychological scientist Margaret Stroebe, who conducted the research with her colleagues at the Utrecht University and VU University Amsterdam.
In this study, the researchers interviewed 219 couples who had lost a child. The parents were from 26 to 68 years old, and the causes of their children's death ranged from stillbirth, to illness, accident, SIDS, suicide or homicide. They were asked to rate how much they agreed with statements like, "I stay strong for my partner," "I hide my feelings for the sake of my partner," or "I try to spare my partner's feelings." The researchers collected the data at three different timepoints: six, thirteen and twenty months after the loss. These questions examined a phenomenon they referred to as "Partner-Oriented Self-Regulation" (POSR), which captures the way in which couples either avoided discussion of their loss or attempted to remain strong for the sake of the partner. Many husbands and wives believe that these two strategies help to alleviate grief, but Stroebe and her colleagues found that the strategies actually exacerbated the problems of grieving. They found that POSR was not only associated with an increase in the person's own grief, but also with an increase in the partner's grief. Moreover, these relationships persisted over time.
There is a paradox, Stroebe says, "While parents seek to protect their partners through POSR, this effort has the opposite effect, and it is associated with worse adjustment over time. Surprisingly, our results suggest that POSR has costs, not benefits, and not only for the partner but also for the self."
These surprising results may be explained by the role of self-regulation in the grieving process. Our ability to self-regulate is essential for dealing with the world, but exerting excessive efforts to contain our emotions and regulate our feelings, thoughts, and behavior exact important
interpersonal and individual costs. Like a muscle that becomes exhausted after exertion, too much self-regulation actually depletes our ability to self-regulate in various domains, including physical health and goal accomplishment.
Ultimately, these attempts at self-regulation may prevent partners from coping with the loss of their child. Suppressing emotions can have adverse effects on grief between couples. One partner may think that painful feelings aren't accepted, for example, or a partner might misinterpret no apparent grief as a lack of actual grief. "One important implication of this research is that, when appropriate, parents can move away from POSR and toward sharing their grief, thereby easing their suffering," Stroebe says.
Coping with Grief and Loss
There is no right or wrong way to grieve, but there are healthy ways to deal with the grieving process. These tips can help.
What is grief?
Grief is a natural response to loss. It’s the emotional suffering you feel when something or someone you love is taken away. Often, the pain of loss can feel overwhelming. You may experience all kinds of difficult and unexpected emotions, from shock or anger to disbelief, guilt, and profound sadness. The pain of grief can also disrupt your physical health, making it difficult to sleep, eat, or even think straight. These are normal reactions to loss—and the more significant the loss, the more intense your grief will be.
Coping with the loss of someone or something you love is one of life’s biggest challenges. You may associate grieving with the death of a loved one—which is often the cause of the most intense type of grief—but any loss can cause grief, including:
Loss of financial stability
Loss of a cherished dream
A loved one’s serious illness
Loss of a friendship
Selling the family home
Even subtle losses in life can trigger a sense of grief. For example, you might grieve after moving away from home, graduating from college, or changing jobs. Whatever your loss, it’s personal to you, so don’t feel ashamed about how you feel, or believe that it’s somehow only appropriate to grieve for certain things. If the person, animal, relationship, or situation was significant to you, it’s normal to grieve the loss you’re experiencing. Whatever the cause of your grief, though, there are healthy ways to cope with the pain that, in time, can ease your sadness and help you come to terms with your loss, find new meaning, and eventually move on with your life.
The grieving process
Grieving is a highly individual experience; there’s no right or wrong way to grieve. How you grieve depends on many factors, including your personality and coping style, your life experience, your faith, and how significant the loss was to you.
Inevitably, the grieving process takes time. Healing happens gradually; it can’t be forced or hurried—and there is no “normal” timetable for grieving. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your grief experience, it’s important to be patient with yourself and allow the process to naturally unfold.
Myths and facts about grief and grieving
Myth: The pain will go away faster if you ignore it
Fact: Trying to ignore your pain or keep it from surfacing will only make it worse in the long run. For real healing, it is necessary to face your grief and actively deal with it.
Myth: It’s important to “be strong” in the face of loss.
Fact: Feeling sad, frightened, or lonely is a normal reaction to loss. Crying doesn’t mean you are weak. You don’t need to “protect” your family or friends by putting on a brave front. Showing your true feelings can help them and you.
Myth: If you don’t cry, it means you aren’t sorry about the loss.
Fact: Crying is a normal response to sadness, but it’s not the only one. Those who don’t cry may feel the pain just as deeply as others. They may simply have other ways of showing it.
Myth: Grieving should last about a year.
Fact: There is no specific time frame for grieving. How long it takes differs from person to person.
Myth: Moving on with your life means forgetting about your loss.
Fact: Moving on means you’ve accepted your loss—but that’s not the same as forgetting. You can move on with your life and keep the memory of someone or something you lost as an important part of you. In fact, as we move through life, these memories can become more and more integral to defining the people we are.
How to deal with the grieving process
While grieving a loss is an inevitable part of life, there are ways to help cope with the pain, come to terms with your grief, and eventually, find a way to pick up the pieces and move on with your life.
Acknowledge your pain.
Accept that grief can trigger many different and unexpected emotions.
Understand that your grieving process will be unique to you.
Seek out face-to-face support from people who care about you.
Support yourself emotionally by taking care of yourself physically.
Recognize the difference between grief and depression.
The stages of grief
In 1969, psychiatrist Elisabeth Kübler-Ross
introduced what became known as the “five stages of grief.” These stages of grief were based on her studies of the feelings of patients facing terminal illness, but many people have generalized
them to other types of negative life changes and losses, such as the death of a loved one or a break-up.
The five stages of grief
Denial: “This can’t be happening to me.”
Anger: “Why is this happening? Who is to blame?”
Bargaining: “Make this not happen, and in return I will ____.”
Depression: “I’m too sad to do anything.”
Acceptance: “I’m at peace with what happened.”
If you are experiencing any of these emotions following a loss, it may help to know that your reaction is natural and that you’ll heal in time. However, not everyone who grieves goes through all of these stages—and that’s okay. Contrary to popular belief, you do not have to go through each stage in order to heal. In fact, some people resolve their grief without going through any of these stages. And if you do go through these stages of grief, you probably won’t experience them in a neat, sequential order, so don’t worry about what you “should” be feeling or which stage you’re supposed to be in.
Kübler-Ross herself never intended for these stages to be a rigid framework that applies to everyone who mourns. In her last book before her death in 2004, she said of the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.”
Grief can be a roller coaster
Instead of a series of stages, we might also think of the grieving process as a roller coaster, full of ups and downs, highs and lows. Like many roller coasters, the ride tends to be rougher in the beginning, the lows may be deeper and longer. The difficult periods should become less intense and shorter as time goes by, but it takes time to work through a loss. Even years after a loss, especially at special events such as a family wedding or the birth of a child, we may still experience a strong sense of grief.
Source: Hospice Foundation of America
Symptoms of grief
While loss affects people in different ways, many of us experience the following symptoms when we’re grieving. Just remember that almost anything that you experience in the early stages of grief is normal—including feeling like you’re going crazy, feeling like you’re in a bad dream, or questioning your religious or spiritual beliefs.
Emotional symptoms of grief
Shock and disbelief. Right after a loss, it can be hard to accept what happened. You may feel numb, have trouble believing that the loss really happened, or even deny the truth. If someone you love has died, you may keep expecting them to show up, even though you know they’re gone.
Sadness. Profound sadness is probably the most universally experienced symptom of grief. You may have feelings of emptiness, despair, yearning, or deep loneliness. You may also cry a lot or feel emotionally unstable.
Guilt. You may regret or feel guilty about things you did or didn’t say or do. You may also feel guilty about certain feelings (e.g. feeling relieved when the person died after a long, difficult illness). After a death, you may even feel guilty for not doing something to prevent the death, even if there was nothing more you could have done.
Anger. Even if the loss was nobody’s fault, you may feel angry and resentful. If you lost a loved one, you may be angry with yourself, God, the doctors, or even the person who died for abandoning you. You may feel the need to blame someone for the injustice that was done to you.
Fear. A significant loss can trigger a host of worries and fears. You may feel anxious, helpless, or insecure. You may even have panic attacks. The death of a loved one can trigger fears about your own mortality, of facing life without that person, or the responsibilities you now face alone.
Physical symptoms of grief
We often think of grief as a strictly emotional process, but grief often involves physical problems, including:
Weight loss or weight gain
Aches and pains
Seek support for grief and loss
The pain of grief can often cause you to want to withdraw from others and retreat into your shell. But having the face-to-face support of other people is vital to healing from loss. Even if you’re not comfortable talking about your feelings under normal circumstances, it’s important to express them when you’re grieving. While sharing your loss can make the burden of grief easier to carry, that doesn’t mean that every time you interact with friends and family, you need to talk about your loss. Comfort can also come from just being around others who care about you. The key is not to isolate yourself.
Turn to friends and family members. Now is the time to lean on the people who care about you, even if you take pride in being strong and self-sufficient. Rather than avoiding them, draw friends and loved ones close, spend time together face to face, and accept the assistance that’s offered. Often, people want to help but don’t know how, so tell them what you need—whether it’s a shoulder to cry on, help with funeral arrangements, or just someone to hang out with. If you don’t feel you have anyone you can regularly connect with in person, it’s never too late to build new friendships.
Accept that many people feel awkward when trying to comfort someone who’s grieving. Grief can be a confusing, sometimes frightening emotion for many people, especially if they haven’t experienced a similar loss themselves. They may feel unsure about how to comfort you and end up saying or doing the wrong things. But don’t use that as an excuse to retreat into your shell and avoid social contact. If a friend or loved one reaches out to you, it’s because they care.
Draw comfort from your faith. If you follow a religious tradition, embrace the comfort its mourning rituals can provide. Spiritual activities that are meaningful to you—such as praying, meditating, or going to church—can offer solace. If you’re questioning your faith in the wake of the loss, talk to a clergy member or others in your religious community.
Join a support group. Grief can feel very lonely, even when you have loved ones around. Sharing your sorrow with others who have experienced similar losses can help. To find a bereavement support group in your area, contact local hospitals, hospices, funeral homes, and counseling centers, or see the Resources section below.
Talk to a therapist or grief counselor. If your grief feels like too much to bear, find a mental health professional with experience in grief counseling. An experienced therapist can help you work through intense emotions and overcome obstacles to your grieving.
Using social media for grief support
Memorial pages on Facebook and other social media sites have become popular ways to inform a wide audience of a loved one’s passing and to reach out for support. As well as allowing you to impart practical information, such as funeral plans, these pages allow friends and loved ones to post their own tributes or condolences. Reading such messages can often provide comfort for those grieving the loss.
Of course, posting sensitive content on social media has its risks. Memorial pages are often open to anyone with a Facebook account. This may encourage people who hardly knew the deceased to post well-meaning but inappropriate comments or advice. Worse, memorial pages can also attract Internet trolls. There have been many well-publicized cases of strangers posting cruel or abusive messages on memorial pages.
To gain some protection, you can opt to create a closed group on Facebook rather than a public page, which means people have to be approved by a group member before they can access the memorial. It’s also important to remember that while social media can be a useful tool for reaching out to others, it can’t replace the face-to-face support you need at this time.
Take care of yourself as you grieve
When you’re grieving, it’s more important than ever to take care of yourself. The stress of a major loss can quickly deplete your energy and emotional reserves. Looking after your physical and emotional needs will help you get through this difficult time.
Face your feelings. You can try to suppress your grief, but you can’t avoid it forever. In order to heal, you have to acknowledge the pain. Trying to avoid feelings of sadness and loss only prolongs the grieving process. Unresolved grief can also lead to complications such as depression, anxiety, substance abuse, and health problems.
Express your feelings in a tangible or creative way. Write about your loss in a journal. If you’ve lost a loved one, write a letter saying the things you never got to say; make a scrapbook or photo album celebrating the person’s life; or get involved in a cause or organization that was important to your loved one.
Try to maintain your hobbies and interests. There’s comfort in routine and getting back to the activities that bring you joy and connect you closer to others can help you come to terms with your loss and aid the grieving process.
Don’t let anyone tell you how to feel, and don’t tell yourself how to feel either. Your grief is your own, and no one else can tell you when it’s time to “move on” or “get over it.” Let yourself feel whatever you feel without embarrassment or judgment. It’s okay to be angry, to yell at the heavens, to cry or not to cry. It’s also okay to laugh, to find moments of joy, and to let go when you’re ready.
Plan ahead for grief “triggers.” Anniversaries, holidays, and milestones can reawaken memories and feelings. Be prepared for an emotional wallop, and know that it’s completely normal. If you’re sharing a holiday or lifecycle event with other relatives, talk to them ahead of time about their expectations and agree on strategies to honor the person you loved.
Look after your physical health. The mind and body are connected. When you feel healthy physically, you’ll be better able to cope emotionally. Combat stress and fatigue by getting enough sleep, eating right, and exercising. Don’t use alcohol or drugs to numb the pain of grief or lift your mood artificially.
For help facing up to and managing distressing emotions like grief…
When grief doesn’t go away
As time passes following a significant loss, such as the death of a loved one, it’s normal for feelings of sadness, numbness, or anger to gradually ease. These and other difficult emotions become less intense as you begin to accept the loss and start to move forward with your life. However, if you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression.
The sadness of losing someone you love never goes away completely, but it shouldn’t remain center stage. If the pain of the loss is so constant and severe that it keeps you from resuming your life, you may be suffering from a condition known as complicated grief.
Complicated grief is like being stuck in an intense state of mourning. You may have trouble accepting the death long after it has occurred or be so preoccupied with the person who died that it disrupts your daily routine and undermines your other relationships.
Symptoms of complicated grief include:
Intense longing and yearning for your deceased loved one
Intrusive thoughts or images of your loved one
Denial of the death or sense of disbelief
Imagining that your loved one is alive
Searching for your deceased loved one in familiar places
Avoiding things that remind you of your loved one
Extreme anger or bitterness over your loss
Feeling that life is empty or meaningless
If your loved one’s death was sudden, violent, or otherwise extremely stressful or disturbing, complicated grief can manifest as psychological trauma or PTSD. If your loss has left you feeling helpless and struggling with upsetting emotions, memories, and anxiety that won’t go away, you may have been traumatized. But with the right guidance, you can make healing changes and move on with your life.
The difference between grief and depression
Distinguishing between grief and clinical depression isn’t always easy as they share many symptoms, but there are ways to tell the difference. Remember, grief can be a roller coaster. It involves a wide variety of emotions and a mix of good and bad days. Even when you’re in the middle of the grieving process, you will still have moments of pleasure or happiness. With depression, on the other hand, the feelings of emptiness and despair are constant.
Other symptoms that suggest depression, not just grief, include:
Intense, pervasive sense of guilt
Thoughts of suicide or a preoccupation with dying
Feelings of hopelessness or worthlessness
Slow speech and body movements
Inability to function at home, work, and/or school
Seeing or hearing things that aren’t there
Can antidepressants help grief?
As a general rule, normal grief does not warrant the use of antidepressants. While medication may relieve some of the symptoms of grief, it cannot treat the cause, which is the loss itself. Furthermore, by numbing the pain that must be worked through eventually, antidepressants delay the mourning process. Instead, there are other steps you can take to deal with depression and regain your sense of joy in life.
When to seek professional help for grief
If you’re experiencing symptoms of complicated grief or clinical depression, talk to a mental health professional right away. Left untreated, complicated grief and depression can lead to significant emotional damage, life-threatening health problems, and even suicide. But treatment can help you get better.
Contact a grief counselor or professional therapist if you:
Feel like life isn’t worth living
Wish you had died with your loved one
Blame yourself for the loss or for failing to prevent it
Feel numb and disconnected from others for more than a few weeks
Are having difficulty trusting others since your loss
Are unable to perform your normal daily activities
Authors: Melinda Smith, M.A., Lawrence Robinson, and Jeanne Segal, Ph.D.
Caring for aging parents:
Tips on how to handle
by Elizz Authors
Caring for your aging parents is a process jam packed with feelings. Intense feelings.
Let’s be real. Sometimes siblings anger us. Sometimes we just feel really sad about the changes in our parents. Sometimes we feel overwhelmed when we think about the future. The list could go on and on.
How are you at managing your feelings? It is a skill. The experts call it ‘emotional regulation’.
Knowing how to manage all these feelings is in everyone’s interests. It is key to self-esteem. You can confidently know that you can handle any and all feelings that come up. It is also key to having meaningful connections with your parents, siblings and other family members, and even the cashier and other strangers you meet in the course of a day.
Six emotional regulation strategies:
1.Identify your feelings and sensations and label them.
Feelings are typically accompanied by body sensations. For example, you may notice a queasy feeling in your stomach, shakiness in your arms or legs, or dryness in your mouth. These are body sensations that typically accompany anxious feelings. Notice and name these sensations in the same way you would notice and name your emotions.
Once you notice or become aware of an emotion, label or name the feeling. Labelling or naming our feelings and sensations reduces their intensity. Labelling also helps prevent over-identification and attachment to feelings. The truth is that all feelings are temporary. They arise, stay for a while, and then they disappear.
Feelings have been described as waves in the ocean, cresting and receding. Feelings have also been described as train cars. You can either watch the train cars go by or you can jump on and let it take you somewhere (which is the over-identification and attachment to the feeling). By labelling your feelings and sensations, you are a witness to your emotions, instead of letting them rule you.
2. Accept your emotions and tell yourself that you can handle both the feelings and sensations.
Tell yourself, “I am feeling _____ and I can handle this feeling and the accompanying sensation(s).”
You may want to remember a time when you felt this particular feeling in the past and handled it well. Remind yourself that you handled it before and you can handle it now. By doing this, you are preparing yourself to effectively handle your feelings and physical sensations. For example, you may say to yourself, “I am feeling this dry mouth and shakiness in my arms and legs. I can handle these sensations.” You can remind yourself of your ability to cope with the sensations. “Can I handle a dry mouth? Of course I can.”
3. Take responsibility for your feelings and reactions.
Use “I” statements rather than “you” statements. For example, “I am feeling frustrated about…” rather than “you frustrate me when….” Making “I” statements is essential to effective communication. Your feelings and reactions are more of a reflection of your internal world (memories, values, experiences, projections and thoughts) than they are of the external world and the people around you.
4. Explore the thought(s) that preceded the feeling.
There is a thought before there is a feeling. This is such a lightning fast process that we can miss the thought that preceded the feeling. Explore the thoughts. Examine the thoughts. What were you saying to yourself before you started feeling this way? This will help you understand which thoughts trigger certain feelings and physical sensations in the body. It will also help you understand your particular triggers. Just like feelings, thoughts are not necessarily the truth. And just like feelings, thoughts are temporary.
5. Consider taking a daily inventory of your feelings.
If you write down what you feel and when, you may be able to identify patterns of feelings. From this awareness, you can then consider what you plan to do about it (if anything).
For example, you notice that you have been feeling angry and resentful at your partner and your kids for a number of days in a row. Your inventory shows you that these feelings of anger and resentment start in the evening when you are tired and desperately wanting to go to sleep but you have “one more thing” to do.
Now that you see the pattern, you can explore further what you would like to do about it. You can first accept responsibility for how you are feeling. That is, your partner and kids aren’t making you angry. You are, however, having feelings of anger and resentment. Noticing this pattern may motivate you to make changes in your household. You may decide to increase your kids’ responsibilities around the house, lower your standards of both yourself and others, or reach out for additional help. The point of this exercise is for you to notice the pattern. In this case, you will likely notice that you have been so caught up in anger and resentment that you have been “dumping” or projecting it onto others.
6. When emotions are overwhelming, try to temporarily change your state of mind.
This can be done by choosing to go, for example, into a different room, going for a short walk, working in the garden or playing a computer game for a few minutes. This allows for a change in the scenery and in your thought processes.
This is not the same as avoiding or ignoring feelings—you’re simply taking a break so you are better able to process the overwhelming and intense feelings you’re experiencing.
Please approach these practices with self-compassion. Expect setbacks. Take note of the challenges you experience. For example, maybe you got stuck in anger or resentment and you lashed out. Learn what you can from these challenges and resume the practice. It is that simple and it is that difficult!
There is no doubt that you can learn to flow easily with the emotional side of caring for aging parents.
How do you handle intense feelings when they come up? Do you have other strategies?
Editor's Note: If you would like to share your caregiver strategies with our readers, please go to our Home page, scroll to the bottom of the page and click on the "Contact Us" button and share your suggestions on our Contact Us Form.
In Grief, Try Personal Rituals
The psychology of rituals in overcoming loss, restoring broken order
By EMILY ESFAHANI SMITH
“Grief turns out to be a place none of us know until we reach it,” writes Joan Didion in The Year of Magical Thinking.
“We might expect if the death is sudden to feel shock. We do not expect the shock to be obliterative, dislocating to both body and mind.”
"We cannot know", she says, "when we lose the person we love"—as she lost her husband John Gregory Dunne 11 years ago—“the unending absence that follows, the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself.”
The tragedy of such grief is that the loss of a loved one is irreversible. It is total and final.
Even so, while some of the grief-stricken remain depressed for long periods of time—developing what’s called “complicated grief”—most people move on. They eventually settle into their old routines or develop new ones. Their lives recover a semblance of order. Sad though they may continue to be, they are no longer held hostage by the chaos of their emotions. They are resilient.
George Bonanno, a clinical psychologist at Columbia University and author of The Other Side of Sadness, has studied grief for over 20 years. Among his most provocative findings is that 50 to 60 percent of mourners show no symptoms of grief one month following the loss. Some even overcome the grief within days.
What drives these people forward? What holds the others back? And why do some mourners recover from grief quickly—much more quickly—than others? Psychologists who study these questions note that there is no single factor that predicts who copes well and who does not. Many variables, from your personality to your social world to your levels of stress before the loss, play distinct roles.
A new study, though, hints at an answer. There is a specific way many people can, no matter what their circumstances may be, transcend despair and distress.
Researchers Michael I. Norton and Francesca Gino at Harvard Business School wanted to know how people cope with extreme loss. In the study, published in February in the Journal of Experimental Psychology, they found that some mourners are more emotionally resilient than others, and those who overcome their grief more quickly all have something very important in common. Following the loss, they performed what the researchers refer to as “rituals” in the study. But these were not your typical rituals.
When many people think of mourning rituals, they think of public displays of bereavement such as funerals, wearing black for a certain period of time, or religious customs like “sitting shiva” in Judaism (a period of seven days when the bereaved are visited by guests). Though the substance of these rituals may vary—Catholic Latinos view crying as a sign of respect at funerals while Tibetan Buddhists see it as a disruption—public mourning rituals occur across nearly all cultures.
Norton, the lead author of the study, first became interested in this line of research after reading Drew Gilpin Faust’s This Republic of Suffering. The book details the public mourning rituals, often tied to clothing, of Confederate widows during the Civil War.
“Reading it, I thought maybe there is something here,” he told me, “that helps them cope in a meaningful way.”
To determine what that “something” was, Norton and Gino asked 76 research participants in their first study to write about a significant loss they experienced, like the end of a relationship or the death of someone they love. They also asked the participants to explain how they coped with the loss and to describe any rituals they did.
The researchers were surprised by the results. Many of the rituals reported were not the public ones that inspired Norton. Rather, they were private rituals. Only 15 percent of the described rituals had a social element (and just 5 percent were religious). By far, most of the rituals people did were personal and performed alone.
For example, one person, following a breakup, performed this ritual: “I returned alone to the location of the breakup each month on the anniversary of the breakup to help cope with my loss and think things over.” Another person gathered all of the pictures they took as a couple during their relationship and “then destroyed them into small pieces (even the ones I really liked!), and then burnt them in the park where we first kissed.”
The mourning rituals were especially moving. One woman who lost her mother would “play the song by Natalie Cole ‘I miss you like crazy’ and cry every time I heard it and thought of my mom.”
A man whose wife passed away wrote: “In these fifteen years I have been going to hairdressers to cut my hair every first Saturday of the month as we used to do together.” Another lady, whose husband died, said she still washes his car each week as he had done when he was alive.
These private rituals are very sad. One would expect that performing them—and writing about them—would make mourners more depressed by reminding them of who and what they have lost. But that’s not what happens, as the researchers discovered in a follow-up study.
Next, Norton and Gino invited 247 people into their lab to reflect on the death of a loved one or the end of a relationship. To induce grief in the subjects, the social psychologists asked them to write in detail about the loss and describe the emotions and thoughts they experienced at the time it occurred. Then, the researchers divided the group in two: a ritual and a no-ritual condition. Those in the first condition were asked to write about a ritual they performed following the loss. Here, as in the previous study, many people reported private, personal, and emotionally-moving rituals that connected them to the memory of their lost loves in a deep and powerful way.
After the writing exercise was over, the researchers measured the grief of the participants in both conditions. As one would expect, people in both groups became sad doing the exercise, but the people who wrote about rituals were less sad. They reported significantly less grief than those who did not write about rituals. Those in the ritual group, for example, were less inclined to endorse statements (from a standard scale used to measure grief) such as “I feel that life is empty without this person,” “Memories of this person upset me,” and “I feel stunned or dazed over what happened.”
In these experiments, Norton and Gino prompted people to simply write about a major loss and coping ritual. But thinking about a ritual is different from actually doing one after a loss. In their next experiment, the researchers brought 109 people into the lab and made them experience a real loss.
They divided the participants into groups of 9 to 15 people and told them that one person in each group would randomly win $200. They then made the subjects feel attached to the money by asking them to write an essay about why they wanted to win the money and how they would spend it. The person who actually won the lottery then left the room, while the remaining people were assigned to do one of two tasks. Either they drew how they felt (the control condition) or they performed a ritual. In the ritual condition, the people were instructed to draw how they felt on a piece of paper for two minutes, then sprinkle salt over the drawing, then rip the drawing into pieces, and then count to 10 in their heads five times.
After the experiment, Norton and Gino measured levels of grief in both groups. Though losing a lottery is a far cry from losing a loved one, rituals helped here, too. Those who did the ritual reported less grief than the no-ritual group. Even people who said that they don’t think rituals work benefitted from doing the ritual: They didn’t feel as bad about not winning the money.
Public mourning rituals have a clear purpose. By gathering people together around the bereaved, they help mourners strengthen their bonds and reenter the social world after a major loss. But private rituals do no such thing. They seem to serve no practical function. They seem almost pointless.
Speaking of the widow who washed her husband’s car each week, Norton points out, “She didn’t drive the car. There was no reason to wash the car. Yet you could see clearly how it’s such an emotionally meaningful thing for her.” Why are these private rituals effective? How do they help mourners cope?
One of the most common responses to loss is feeling like the world is out of control. Day to day, most people go about their lives thinking they are in command. They decide what they do, whom they see, and where they go. And death—a familiar part of life in the past, when diseases were untreatable and public parks were cemeteries—is now remote, for the most part unseen, and often unthought of. So the sudden death of a loved one can shock and stun. The bereaved can be overcome by a helplessness that is otherwise foreign to their lives. As Didion writes in The Year of Magical Thinking: “Everything’s going along as usual and then (it all) breaks loose.”
When Norton and Gino probed deeper into the emotional and mental lives of their research subjects, they found that rituals help people overcome grief by counteracting the turbulence and chaos that follows loss. Rituals, which are deliberately-controlled gestures, trigger a very specific feeling in mourners—the feeling of being in control of their lives. After people did a ritual or wrote about doing one, they were more likely to report thinking that “things were in check” and less likely to feel “helpless,” “powerless,” and “out of control.”
Didion’s husband died the evening of December 30, 2003, just as the two of them were about to sit down to dinner. He was having a drink when a massive heart attack killed him probably within minutes. “You sit down to dinner and life as you know it ends,” she writes. The paramedics arrived at their apartment at 9:20 p.m.; Dunne was rushed to the hospital at 10:05 p.m.; he was pronounced dead at 10:18 p.m.
What stands out in her account of that evening is what she did when she returned home that night alone. She ritualistically sorted through the items that were in the pockets of the pants he was wearing when he died: “I remember combining the cash that had been in his pocket with the cash in my own bag, smoothing the bills, taking special care to interleaf twenties with twenties, tens with tens, fives and ones with fives and ones. I remember thinking as I did this that he would see that I was handling things.” To Didion, the sorting of bills was symbolic. Deliberately done, it was meant to help restore the broken order of her world, to reveal she was in control and “handling things.”
Dr. Johnson points out that “for sorrow there is no remedy provided by nature; it is often occasioned by accidents irreparable, and dwells upon objects that have lost or changed their existence; it requires what it cannot hope, that the laws of the universe should be repealed; that the dead should return, or the past should be recalled.”
Those who are grieving cannot raise the dead or change the laws of nature. But by performing their own private rituals, the bereaved can regain their footing in a world that has become a little emptier than it was before.
India's Movement to
Help People Die Better
Volunteers are taking the care of their terminally ill neighbors into their own hands.
By: JEREMY LAURANCE
Thirty years ago a young anesthetist, newly appointed as head of department at Calicut Medical College Hospital in the Indian state of Kerala, encountered a case that would change his life.
A college professor aged 42 with cancer of the tongue had been referred to him by an oncologist. The man was in severe pain, and the anesthetist, M.R. Rajagopal, asked if he could help. He injected the mandibular nerve in the jaw in a procedure known as a nerve block, and told the patient to return in 24 hours. Next day, the pain had almost completely gone and Dr. Raj, as he is known, was pleased with his work.
“He asked me when he should come back. I told him there was no need to come back, unless the pain returned. I thought he would be happy I had cured the pain. Instead, he went home and killed himself that night.”
It turned out that the oncologist had avoided explaining to the college professor that his cancer was terminal. Instead he had said he was referring him for further treatment.
“It was only when I told him there was no need to come back that he realized his cancer was incurable. He went home and told his family it was all over.”
Dr. Raj reaches for a glass of water. We are sitting in his simple home in Trivandrum, the leafy state capital, where he now lives with his wife, Chandrika, a pathologist. In front of us, a plate of yellow jackfruit gleams in the low afternoon light. A fan whirrs above.
That experience caused Dr. Raj to examine his own practice. In addition to putting people to sleep for surgery, an anesthetist’s job is to tackle pain. So what was he missing, he wondered.
“In those days pain was all over the hospital. It was everywhere. We pretended not to see it, but it was there. Injections of morphine were used sparingly, after surgery and for patients injured in accidents. It was never used in cancer pain.”
Medical staff coped with the suffering the same way they cope everywhere. “No one teaches you, but you learn to see only the disease, not the human being who has it. Maybe if there is nothing you can do it is easier to turn your back.”
Dr. Raj had had two earlier traumatic experiences involving the dying. Aged 18, in his first year in medical school, he had lived close to a man who had terminal cancer of the sweat glands. “I would hear him screaming in the night. He had nodules all over his scalp. The family knew I was a medical student and asked if I could do anything. I didn’t know how—I was helpless. I am ashamed that I never visited him after that. I did not want to go there and feel helpless again.”
Later, he was looking after a patient with a gangrenous toe who was in excruciating pain. “I asked my head of department if I could try a nerve block. He refused—it was not part of routine care and there was a shortage of anesthetists. I had to tell the man there was nothing I could do. I still remember the look of hopelessness on his face.”
When he became head of department at Calicut, there was no one to tell him what he could and couldn’t do. That is how he came to treat the college professor. But his patient’s suicide showed him that treating the pain was not enough.
“I realized that thinking about nerve blocks was too narrow. Pain is just the visible part of the iceberg of suffering. What is ignored is the part below the surface—feelings of hopelessness and despair, worries about money, about children. That is what palliative care is about. That man gave up his life to help me understand it.”
We all wish for a pain-free, dignified death. Too few of us achieve it. Worldwide, the last year of life is marked by widespread unnecessary suffering. At least 40 million people need palliative care each year, but only around half that number receive it, according to the Worldwide Hospice Palliative Care Alliance.
India comes near the bottom of the global league in access to end-of-life care—ranked 67 out of 80 countries in 2015—but Kerala is an exception. This small green and fertile state in the south-west has just 3 percent of India’s population but provides two-thirds of the country’s palliative-care services. These have developed over the last 20 years, driven by the local community and supported by a unique system of volunteers. Some claim it is Kerala’s strong ethos of community involvement that is the secret behind its palliative care provision, which would be difficult to replicate elsewhere.
Dr. Raj, one of the drivers of the movement, disagrees.
“Yes, of course the strength of the community is important. But is Kerala the only part of the world where there are compassionate people? Is Kerala the only place where people who may have gained material success then want to do something meaningful with their lives?”
Now a youthful 69, he recognized early on that tackling pain and supporting the dying could not be achieved by medical staff alone. The need was too great. It would depend on harnessing the commitment of volunteers.
In 1993, after he had attended a course run by an English nurse, Gilly Burn, he and his colleague Suresh Kumar established the Pain and Palliative Care Society in Calicut, a town in the north of Kerala, together with an activist friend, Ashok Kumar, who ran a printing business and provided a vital layman’s perspective.
“Six of us put in 250 rupees each, worth about £10 then,” says Dr. Raj. “We found two volunteers, young women with children at school, to register patients and sit and talk to them. Then I would come after work to see them.”
The project took off after Burn, who ran a trust, Cancer Relief India, donated 100,000 rupees (£4,000 in the mid-1990s), enabling them to appoint their first doctor. Calicut hospital provided two nurses.
“It very quickly got attention. In the hospital, we were working in a sea of suffering. But in the clinic, you could see people smiling, talking, finding comfort.”
Within a year, it was being copied—by a medic whom Dr. Raj met on a train and by a former student who wanted to open a clinic in his own town. The ball was rolling.
There was a limitation, however. It was exposed early on when a young man came begging for help for his mother, who was in severe pain. She lived in a remote spot where there was no road and could not be moved. When Kumar told the man that the doctors could not prescribe without seeing the patient, he broke down in tears. Kumar weakened and told the man someone would come. It was their first home visit. Gradually demand increased. Then someone donated a vehicle.
The doctors, working in their spare time, could not meet the demand alone. The organization of the clinics and the home visits depended on volunteers. But the volunteers also provided the link between their communities and the service—they knew who was sick and where to get help. Over time, they became more and more involved. Some assisted with nursing tasks, following brief training, but most provided social care—advice, support, a shoulder to cry on.
By 2000, there were 30 palliative care groups in northern Kerala, run by volunteers and supported by mobile medical teams. Today, though there are no official figures, Dr. Raj estimates there are 300 voluntary groups across the state, providing care to patients in their own homes, identifying those in need, and helping to direct limited medical resources to where they can do the most good. Kerala is now a World Health Organization demonstration site for palliative care and plays host to a stream of international visitors wishing to learn how it was done.
The strength of the groups is that they have grown organically, rooted in their communities, by popular demand, and thus have strong local support. They are largely funded by local donations, some as little as 10 rupees (12 pence) a month.
They supplement the work of the 167 institutions licensed to dispense morphine and the 900 government–funded panchayats, or village councils, each of which employs a nurse who provides palliative care—though they may visit patients only once a month.
Thirty kilometers outside Trivandrum, in the district of Uzhamalakkal, the white van carrying the community team turns off the road and bounces along a rutted track to a group of houses half-hidden in the rubber trees. The team of doctor, nurse and volunteers enter a house where Surendran, a former rubber tapper aged 50, is lying on a bed naked to the waist, his lower body covered by a striped cloth. His chest rattles, his stick-like arms are drawn up to his face and his breath comes in painful rasps. He is in the terminal stages of lung cancer, and for the last week has been unable to swallow—food, liquid or morphine tablets. A Josco Jewellers calendar hangs on the bare cement walls, under a strip light, and a blanket covers the window. Mini, his wife, stands at the foot of the bed.
Dr. Raj lays a hand on Surendran’s arm and gently explains that, as he can not swallow, to treat his pain the morphine will have to be administered rectally. The nurse will teach Mini how to do it. Dr. Raj asks if he has any questions. “Can I get out of this?” Surendran says. Before Dr. Raj can answer, Mini intervenes: “Yes of course you can. You will get better.”
Dr. Raj suspects she knows the truth, but decides against trying to broach it with her at that point, worried about the reaction it might provoke. Just as a wrong dose of a drug can harm, so can an ill-chosen word, he says later. A reflective man, with kind eyes and neat mustache, he comes ever ready to lay a soothing hand on a fevered brow. Wearing a blue open-necked shirt and sandals, his gentle demeanor and soft voice put patients at their ease while he gently probes for their stories before quietly instructing his team, who hang on his words.
“We help people live at home and die at home. Most want that,” he says. But Surendran’s condition is extreme, and his suffering severe, so Dr. Raj urges Mini to bring him to the city, where there are a few hospice-style beds. She says she can not leave her 17-year-old daughter alone, so Dr. Raj suggests bringing her too. While neighbors are often supportive, in this case they stopped visiting when they heard Surendran had cancer. Mini says she will consider it. The volunteers will help arrange transport.
The group that requested the home visit, called Sangamam (meaning “confluence”), was started four years ago by Dileep, 43, the manager of a paint shop, whose wife died of cancer. It is one of 11 that have sprung up in the Trivandrum area in the last decade. They are supported by Pallium India—the organization Dr. Raj founded in 2006 after he retired from the government medical service and moved to the city—which provided the mobile medical team.
Sangamam is one of the most successful groups, with 12 active volunteers and another 50 whose help can be drawn upon. It is funded by donations from the local community. In this case, friends have been generous enough to allow Dileep to hire a nurse and buy some land, where he hopes to construct a clinic. The local panchayat gives 50,000 rupees a year for drugs. “Because they are convinced we are doing good work,” Dileep says.
Guided by the Sangamam volunteers, the Pallium India team sees two more cases this Tuesday morning in January. One, a woman of 55, who had her tongue removed a month previously because of cancer, has developed severe pains in her neck, which prevent her sleeping. Wearing a pink sari, she breaks down in tears as it emerges from Dr. Raj’s careful questioning that she has argued with her son in a dispute over land, and he has left. Sobha, a volunteer, has learned from neighbors that the son is planning to get married but has not told his mother. She undertakes to contact him to try to negotiate a reconciliation. Palliative care, in this conception, is about tackling emotional pain, as well as the physical kind.
What Kerala has recognized, though the rest of the world has been slow to do so, is that the scale of the need for palliative care cannot be met by professionals alone. In the U.K., the hospice movement provides the gold standard for end-of-life care. Yet just 4 percent of deaths occur in hospices. Most people—over three-quarters in some surveys—say they would prefer to die at home, but less than a quarter do so.
Julia Riley, consultant at the Royal Marsden Hospital, London, and visiting professor at the Institute of Global Health Innovation, Imperial College, says: “Hospices do terrific things—but there are not enough of them. We have got to get the service out into the community—it can be done at home. Only 10 percent of people who are terminally ill need specialist palliative care. The rest need only generic care.
“Palliative care is so cheap. We can do so much, relative to other areas of medicine, for so little. Giving people a dignified death is so important—both for them and for their families.”
In the U.K., the number of deaths is rising as the postwar baby boomers age, says Max Watson, consultant in palliative care at the Northern Ireland Hospice and visiting professor at the University of Ulster. “To continue in the way we are—relying on hospices and specialist care—isn’t an option,” he says. “It is really important to democratize specialist knowledge. We need to engage carers, voluntary groups, nursing homes and patients themselves so they can be empowered to provide good-quality end-of-life care. Most of those helping are over 60 themselves. They are a fantastic resource we are not using properly.”
In the U.S., hospice care is more widespread—45 percent of Americans at the end of their lives in 2010 received hospice care, more than half of them at home. These are among the highest rates in the world, according to Atul Gawande in his book Being Mortal. However, spending on the U.S. health system is widely acknowledged to be out of control, substantially outstripping the costs of comparable systems in Europe.
The Kerala model is thus drawing attention from around the world. The estimated 300 voluntary groups are often described as a network. This suggests, wrongly, that there is some overarching organization that links them all. In truth they are a series of networks that have grown organically, from the ground up, wherever the community has decided there is a need. One of the biggest is the Neighborhood Network in Palliative Care in northern Kerala, led by Suresh Kumar, Dr. Raj’s former colleague.
In Trivandrum, Pallium India, staffed by six doctors, five social workers and 20 nurses, provides five mobile medical teams to support the 11 local groups. It also runs an outpatient clinic and an inpatient unit with 17 beds at Arumana hospital in the city, and provides outpatient services at four government hospitals.
In 2016, the mobile teams made 6,397 home visits. Some patients are starving and Pallium India currently provides 225 families with a monthly food kit, containing basic supplies, and supports the education of 300 children, in addition to supplying free drugs.
The work of creating the voluntary groups starts with talking to local people, explaining that hospitals are no place for the dying and that caring for the terminally ill is the community’s responsibility. The concept of palliative care has been extended to include the chronically ill and the paraplegic, such as stroke survivors and people with complications of diabetes, including blindness and amputation, who now constitute up to half the patients.
Once a group is formed, Pallium India encourages the organizers to register it—for the sake of transparency and to gain tax advantages on donations—and offers support with regular visits from a doctor or nurse. But the aim is that the groups should ultimately go it alone.
Their origin in the communities they represent is their strength. But the absence of any top-down organization is also a weakness. It means there is no mechanism for spreading the concept to other parts of Kerala, or other parts of India. Organic growth is slow growth.
Out of frustration with the lack of progress, Dr. Raj established Pallium India to act as an agency to spread palliative care more widely, beyond the state’s borders. “What has happened in Kerala is beautiful. But it should not be stuck in Kerala. It could be 1,000 years before we get universal pain relief [across India],” he says.
With the help of grants from foundations, donations from well-wishers and support from the Tata group, Pallium India has established 23 palliative care centers across India by providing initial funding to interested groups, training doctors and nurses, and giving support.
Kerala has been a pioneer in other ways. Its government launched the first state Palliative Care Policy in 2008. Two other states, Maharashtra and Karnataka, have followed suit and a National Palliative Care Strategy for India was published in 2012. A working group appointed by Pallium India drew up a list of essential standards, including a minimum 10 days’ training in palliative care for doctors and nurses, an uninterrupted supply of morphine, and documentation of patients’ pain scores.
But Dr. Raj, who lobbied for the strategies, is not satisfied. “I am upset when the palliative care community boast about what we have achieved. We are not doing nearly enough. Ninety-nine percent of people in India do not get access to palliative care.”
He paused to reconsider this bleak assessment.
“Okay, if I want to be optimistic, I can put it another way. One percent of people do have access to palliative care. That is 12 million people.”
Central to the provision of care for the dying is the alleviation of pain. But even this is not being satisfactorily achieved. India is the world’s largest legal producer of opium for medical purposes. But most is exported to the West. Over 90 percent of the world’s morphine consumption is in the countries of North America and Europe. All middle- and low-income countries combined consume just 6 percent.
Morphine is easy and cheap to produce. It is not the cost that restricts access, but the law. Morphine has been highly restricted in India since 1985. As a result, two generations of doctors have grown up unfamiliar with it. Misplaced fears about drug abuse have condemned millions of terminally ill patients to an unnecessarily painful death.
Kerala has again proved more enlightened than other Indian states. Since 1998, palliative care centers in Kerala have been permitted to administer the drug orally. Much more recently, in 2014, the law was finally relaxed to allow access to morphine across India.
But Dr. Raj is again unimpressed. “Changing the law is not translated into practice unless someone is pushing it. The new law has not had a big effect. Figures show India uses 320 kilograms of morphine a year. To meet the need we would need to use 30,000 kilograms.”
He added: “This is why it is vital to seize this moment, when the iron is hot. If we do not act now, it may be too late.”
Volunteers are the linchpin of the Kerala model. Krishnaraj Manikoth, a retired chartered accountant who now helps at Arumana hospital, says the work offers a sense of purpose.
“I worked for 30 years in Dubai. I had a comfortable life, two wonderful children—I was blessed. What bothered me was that I had not done anything for society. I wanted to give something back.”
Sintu Suresh, a former journalist and speechwriter whose father died a painful death in an intensive-care unit, says she wanted to protect others from over-treatment.
“Doctors don’t see the whole patient, the human being. They see only the disease,” she says.
“I begged those treating my father to give him something for the pain. I told them they could keep sending the same bills but to stop torturing him. Only on the last day did they mention palliative care.”
In the U.K., it has been estimated that there are more than 100,000 volunteers working with hospices (and nearly 500,000 in the U.S.). Few, however, visit patients in their homes. An exception is the Hospice Neighbors scheme run by St. Nicholas Hospice in Bury St. Edmunds, Suffolk.
Established in 2011, the service helps between 120 and 150 people with terminal illnesses in their homes at any one time, supported by more than 150 volunteers who provide comfort, companionship and assistance with household tasks. The scheme, started by chief executive Barbara Gale, won the Queen’s Award for Voluntary Service in 2014.
Gale interviewed 16 volunteers for a paper published in BMJ Supportive and Palliative Care in 2015. She found what chiefly motivated them was the opportunity to “make a difference.” Many said they found the patients “inspiring,” death became “less scary” and the experience made them think differently about life.
Death and dying are taboo topics in many countries. Essential medicines are in short supply and there is little spending on palliative care research. Dying is seen as a failure of the health system to successfully cure.
The pain of dying is compounded when families desperate to find a cure but ignorant of the poor prognosis are aided by doctors ready to impose high charges for ever more interventionist, but useless, treatments. The result is increased suffering for the patient and often penury for the surviving relatives.
The Kerala model helps protect its citizens from the excesses of the medical system by enlisting the support of the community to comfort the dying, enabling the terminally ill to be cared for at home, where most prefer to be, and providing support to bereaved families in their hour of loss. It is one from which the world can learn.
Since this article was written, Surendran has died.
Caregiver and Schizophrenia:
How to Handle the Psychosis
Psychosis or psychotic episodes can be very difficult for caregivers to know how to handle in just the right way. These episodes can be frightening for everyone, especially the person experiencing them, triggering extreme stress and fear which can make their symptoms escalate.
Psychosis is defined as a loss of contact with reality, unable to distinguish between what is real and what is imaginary, and includes delusions (false ideas about what is taking place or who one is) and hallucinations (seeing or hearing things which aren't there). Many times when someone is experiencing a psychosis, they may actually be unaware that anything is wrong. It’s important for caregivers to know how to recognize the early-warning signs indicating that a psychosis is developing, and to know where or from whom to seek assistance.
Some of the early warning signs to look for include: anxiety, depression or irritability; suspicion, hostility or fearfulness; difficulty sleeping, or unusual waking hours; appetite changes; loss of energy, motivation and interest, or hyperactivity, or alternating between the two; concentration or memory problems; preoccupation with certain ideas (such as religion); social withdrawal - not wanting to spend time with friends and family members; thinking problems such as racing thoughts or slowed down thoughts; difficulty meeting responsibilities such as work or study; deterioration in self-care and personal hygiene; appearing perplexed; and personality becoming different in some way. None of these signs by themselves necessarily mean that a psychotic episode is about to happen, because some may be caused by a physical illness, or by the stress and strain of work or school, or problems with important relationships. However, if a loved one shows several of these signs without them going away fairly soon, or if they become more pronounced over time, then it would be a good idea for them to seek assistance from their mental healthcare specialist.
Knowing what to do for the symptoms of psychosis can be very difficult because you may not know what to say or do. This can be a very stressful and confusing time for everyone, so just know that there isn’t really a “right” thing to say or a “correct” way to behave or react. There are some things that you can keep in mind that may be helpful.
Try and understand what the person may be experiencing, like hallucinations or delusions, which will seem very real to them.
Try not to take anything that they may say personally, keeping in mind that they aren’t behaving and talking as they normally would.
Avoid long debates in which you try to convince them that their delusions or hallucinations aren't real, because this will make them feel like they can't talk to you about what they’re going through.
Try to find things to talk about that are neutral, instead of concentrating on their mistaken beliefs; this will most likely not upset them or get you frustrated.
As tempting as it may be, don’t go along with their delusions or hallucinations, just listen and sympathize with what the person is experiencing. You might want to say something like, although you’re finding it difficult to understand what they are going through, you do realize that they must be very scared, frustrated, or angry. If it’s at all possible, try and minimize the stress and stimulation around the home during these times. Also, when someone is experiencing or recovering from a psychosis, they can almost seem child-like, and may need your help in making decisions. Show your concern and care for the person by avoiding confrontations, and not criticizing or blaming them.
Another very important risk-factor to be aware of is that a person who is experiencing, or who has experienced, a psychotic episode has an increased potential for depression and suicidal thoughts. Any threats or gestures of self-harm must be taken very seriously. Seek medical and/or mental healthcare assistance immediately if you think that your loved one might harm themselves.
Don't be afraid to talk to them about how they’re feeling, asking them if they feel safe, or if they’ve been thinking about hurting themselves. To talk about suicide does not make it happen, but can, in fact, make it possible to take action in preventing it from happening.
Another issue to this risk-factor is that of confidentiality. Often when dealing with someone who is mentally ill, you be placed in an ethical quandary on what to do when the person shares “secret” thoughts or information with you, especially regarding suicide or possible harm towards others. This can put a huge emotional strain on you, deciding between maintaining their confidence or looking after their best interest. Although everyone’s experience is different, one thing that every caregiver must do is to make sure and pass along any information received suggesting that a person is at risk of harming themselves or somebody else, to a doctor or other healthcare professional, and get that person to a health professional as soon as possible. Even if a loved one seems to be angry or feels betrayed, you have a clear duty of care that overrides any suicidal or homicidal pacts or plans.
Just make sure that you don’t make them any promises that can’t be kept, but remain supportive, compassionate, and firm as to where actual confidentiality must end.
Things that you might want to say when finding out about such plans include: "I would like to help you”; "I can’t imagine what you’re going through, but I am ready to listen"; "I care about you and I think it might be a good idea to talk things over with your doctor"; "I would like to help you, however, you need to tell me how I can best go about this"; "I can’t keep your suicide plan to myself. I would like to arrange for us to go and see a doctor together". Be sure to not say things like: "You need to pull yourself together and snap out of it"; "Let me tell you about my problems, which I’m sure will help you to forget about yours".
These remarks aren’t supportive, helpful, or compassionate, and may be dangerous.
With medication, therapy and time, your loved one may show signs of being able to handle more responsibility, once the psychotic episodes subside and no longer pose a constant threat. Talk to them about how they feel when it comes to doing more things, and a good place to begin is with self-care tasks like personal hygiene, getting dressed, and eating scheduled meals. Start assigning simple household chores, and observe whether they want to work alone or with others. For example, they may like to clean the living room, but they may not like someone else dusting in there at the same time.
Try to encourage them gently, never forcefully, to be a part of social gatherings when appropriate. Keep gatherings small and intimate, with one or two relatives or friends over for dinner instead of an all-day affair with the entire clan, like a wedding or family picnic; this may cause frustration and stress, helping to set the stage for another episode. Always discuss your plans with them, and suggest going on an outing once a week, like a drive or a walk in the country; go somewhere peaceful and quiet, not hectic and noisy like a city. If you want to take them out to eat, find a nice, small restaurant and go during the least busy part of the day. Don’t ask too many questions, like, "What are you thinking about?” or “Why are you doing that?" Talk about outside events that aren’t too emotional, perhaps discussing a movie or Television program, instead of world affairs and politics.
Know too, that it may be difficult for them to talk about anything, but that they still enjoy your company. In this case, consider watching television, listening to music, playing cards, or even reading to them. Begin to encourage them to take some responsibility, such as leaving them instructions about starting dinner in case you’re going to be late getting home that night. Help them learn how to deal with the stress of being out among society by suggesting that they accompany you to a washroom if they begin to feel panicky in a public place, until the feeling passes.
Remember that family caregivers are often times the only friends a loved one has, so try to be a friend as well, by inviting them to come with you when you do different things, but never force them to have to go.
Last, but not least, always respect your loved one’s concerns about their illness. If they ask you not to share the nature of their disease with other family members or friends, then don’t, even if you feel you have a lot of experience that may help other caregivers going through the same thing. Respect, patience, compassion and gentleness will go a long way to help you both take control of the disease, and begin living life to its fullest again.
Living With Chronic Pain
How do we manage our pain?
Ana Nogales, Ph.D.,
We all know that it is unpleasant to live with pain. What we don’t know, however, is how to manage our pain. We try to avoid pain, but we don’t always do it in the most appropriate way.
Nowadays, we know that many types of pain are produced by the brain, no matter what part of the body is injured, or what kind of pain it is. The brain is a central reception that handles pain.
Pain may be acute or chronic.
Acute pain is produced by damage to tissues and it usually lasts for a few weeks or even a few months. This pain is generated when you hurt yourself, such as when you twist a foot. Usually, doctors recommend that people stay active as much as possible as time helps the healing process.
But when the pain continues after healing, it becomes persistent or chronic. The brain continues to produce pain even when the body is healed. Then it becomes a much more complex pain; the person feels that they have not recovered even though there are no physical explanations for the pain. The reason is that our highly sensitive nervous system continues to react.
Even though one feel powerless in the face of pain, there are many things that can be done to combat it. Traditional medicine undoubtedly helps, but it is not the only option. There are many methods that doctors use to reduce pain, from the application of ice or heat, body creams, TENS therapy, in addition to typical injections, medication, and surgery. Unfortunately, narcotics have proven to be harmful due to the risk of becoming highly addictive.
When pain is chronic, options become limited. However, there is still a lot one can do. This does not mean that the pain is non-existent or that everything is in our head. To clarify, we are talking about a neurological process that determine our reactions, but whose mechanism we can learn from and influence to our benefit.
We need to consider the kind of life we live. Many of us spend most of our days sitting down in a vehicle, in an office, or at home. This puts extraordinary pressure on our back. Many others stand all day, abusing the legs that when we were younger, did not realize were mistreated. Additionally, modern life is simply full of stress. Financial and familial concerns, a lack of leisure time, and a volatile political climate creates further tension in a body that needs a break.
Pain is our body’s way of informing us that something is wrong.
We must pay attention to it. The way we live, combined with what we eat, affects our central nervous system, which affects our perception of pain. If we add other factors, such as smoking, drinking, or the consumption of other drugs, we have to ask ourselves why we willingly harm ourselves. Some say that marijuana can lessen the severity of pain.
Although that could be the case, marijuana use may also lead to health-related complications. Studies repeatedly prove that marijuana use increases the chances of developing a cardiac arrhythmia. Also, there are neurological consequences that affect our ability to think. There are also another 400 chemicals associated with processing it, and 10% of its consumers develop an addiction. In fact, marijuana helps to calm anxiety, and therefore, a user may sleep better and their tension and pain may be relieved.
In general, unless your doctor says it is contraindicated, staying active is part of the plan. Many people are so afraid of pain that they recuse the time they are active. By remaining stationary, their pain increases. One’s level of activity should increase little by little. We should allow our bodies to set a limit, and little by little, push our bodies.
Doctors do not tire of recommending walking. This is a simple activity that does not involve any expenses, but has multiple benefits. A good idea is to create a plan of activities for each day, get up at the same time, and ensure that all tasks get completed, without exaggerating unnecessary pressures. Sleeping well is very important. When we do not receive adequate and uninterrupted sleep, our body undergoes more tension and a person becomes more irritable.
Pain significantly impacts our lives.
It limits how active we are, which, in turn, leads to stress and frustration. Understandably, pain produces a pessimistic perception of one’s future. We may feel as if pain will permanently permeate our lives. We may feel deceived by our doctors. We may even be angry with ourselves for being unable to reduce our suffering. In turn, we sometimes reflect on our past actions. We wonder what we have done to deserve our pain. Anxiety and depression are common responses to pain, which, unfortunately, intensify our suffering.
Our thoughts affect the way we feel. Given that, be mindful of your thoughts. Negative thoughts can be a form of physical and emotional torture. Keep in mind that pain does not kill us. Pain is a sign or a message you should heed. Seek help when you are in pain. Pain is not something with which you should struggle. The more you fight with your pain, the more pain you will have.
Understand your pain.
Learn to deal with it through relaxation exercises, deep breathing, meditation, prayer – whatever it is that brings you peace. However, don’t believe everything you think, as our thoughts are sometimes deceiving. Review your thoughts and you will see how reality can distort what you think, which generates unnecessary stress, which in and of itself, creates further tension and affects our perception of pain.
What the Dreams of the Dying Teach Us About Death
Most end-of-life dreams and visions were comforting, researchers said
By Emily Gurnon
Shortly before her death, Jeanne had a vivid dream. She was lying in her bed at the hospice center, she told a researcher. People began walking past. On her right was a line of strangers who touched her arm or hand as they went by. On her left was a procession of loved ones who had died previously: her mother and father, her uncle and others. They also patted her arm, offered a comforting touch.
“It was a good dream,” she told the researcher (Jeanne’s full name was not disclosed). “I know that was my mom and dad and uncle and my brother-in-law.” Seeing her mother in that and other recent dreams was “wonderful,” she said.
“I can’t say that my mother and I got along all those years,” Jeanne said, tearing up in a video recording.
“But we made up for it at the end.”
A Mystery Worth Studying
End-of-life dreams and visions have been documented through the ages, but there has often been a lack of understanding on the part of health care workers about their significance, said Dr. Christopher Kerr, chief medical officer at Hospice Buffalo. Kerr led a research team from the Palliative Care Institute in Cheektowaga, N.Y. in a long-term study on dreams and visions in the dying.
"It was striking — (the) dramatic increase in frequency of dreams and visions and particularly in seeing the deceased (as death neared)."
— Dr. Christopher Kerr
The team wanted to go beyond the anecdotal research that had dominated the field up to that point. They conducted more than 450 interviews with 59 patients at Hospice Buffalo’s in-patient facility in Cheektowaga, N.Y., between January 2011 and July 2012. All participants were terminally ill and had no cognitive impairment.
The researchers sought to quantify the frequency of end-of-life dreams and visions; examine their content and significance to the dying person and perhaps determine whether the frequency and content would predict how soon death would come.
As for predicting death, the results were clear, Kerr said.
“It was striking — it was a dramatic increase in frequency of dreams and visions and particularly in seeing the deceased (as death neared),” he said. Sometimes, the patients went back to childhood in the dreams. Veterans “returned” to war.
“Seeing” the Dead
Kerr tells the story of one dying woman who talked and acted as if she were holding an infant in her arms. She called him by name: Danny.
Her four children, who surrounded her bedside, were puzzled. They had no idea who “Danny” was. Then the patient’s sister arrived. She explained that the patient’s first child, Danny, had been stillborn. None of Danny’s siblings ever knew he existed.
Among the study’s other findings, according to the researchers:
88 percent of the patients had at least one dream or vision, they reported
99 percent believed that their visions or dreams were real
Traveling, or preparing to go, somewhere was a common theme
60 percent of the dreams or visions were comforting; 19 were distressing and 21 percent were neither
The most common dreams and visions were of living or dead loved ones
As death neared, comforting dreams of deceased loved ones (including pets) became more common
There were distinct differences between the dreams/visions and delirium
What Is Delirium?
The findings on delirium are significant considering the lack of understanding among many clinicians about end-of-life dreams, the researchers said.
Delirium is an altered state characterized by terrible anxiety, agitation or fearfulness, while the dreams/visions evoke “inner peace, acceptance and the sense of impending death,” the researchers wrote in their study, published in The Journal of Palliative Medicine.
“These distinctions are critical, as medication of (dreams/visions) mistakenly perceived as delirium may remove the dying patient from comforting experiences inherent to the dying process. This approach may further cause isolation, suffering, and impairment in the dying person’s ability to experience and communicate meaning at end of life,” the study says.
Understanding the differences proved important to caregivers and family members, too, said Pei C. Grant, director of research for the Palliative Care Institute.
“There’s a general sense of relief when they know that the end-of-life dreams and visions are a normal experience — that their moms and dads aren’t losing their minds,” she said.
Examples of the Dreams
The following dreams were described to the researchers (names have been changed; DBD indicates days before death):
Roger, 73, dreamed about his best friend from childhood and saw him running out of the house with his glove and bat while laughing. They had shared a love of baseball throughout life. [DBD 4]
Megan, 64, dreamed that she and her son were boarding a plane and ‘‘on the edge’’ of leaving. [DBD 6]
Barry, 88, dreamed of driving somewhere unknown and was comforted by hearing his mother say, ‘‘It’s all right. You’re a good boy. I love you.’’ [DBD 28]
Joseph, 82, had a very distressing dream in which he was trying to fix the crumbling brick-and-mortar foundation of a corner fence post. He felt frustrated because he couldn’t fix the crumbling foundation and didn’t know if anyone else will fix it. [DBD 7]
Audrey, 81, reported seeing ‘‘five little angels’’ in her room and immediately told a priest she was ready to die and wanted to write a letter to God. [DBD 7]
Theresa, 79, dreamed about talking to Father Sean, a local Catholic priest who had been murdered in the 1960s, and reported that, ‘‘He [the priest] told me the end of the week. I’m going to die in seven days.’’ [DBD 7]
Tim, 51, had dreams that included his deceased parents, grandparents and old friends who were ‘‘telling me I will be OK.’’ ‘‘I haven’t seen some of these people for years,’’ he stated, and ‘‘I know we are going somewhere but don’t know where.’’ [DBD 14]
Laurene, 96, had dreams of her mother in a beautiful garden saying, ‘‘Everything will be OK.’’ She told her family she wanted to sleep as her mother will return. [DBD 71]
Narcissistic Personality Disorder
By: Melinda Smith, M.A. and Lawrence Robinson.
Know someone who expects constant admiration, who thinks they’re better than everyone else, but flies off the handle at the slightest criticism? These tips can help you recognize and cope with a narcissist.
What is narcissistic personality disorder (NPD)?
The word narcissism gets tossed around a lot in our selfie-obsessed, celebrity-driven culture, often to describe someone who seems excessively vain or full of themselves. But in psychological terms, narcissism doesn’t mean self-love—at least not of a genuine sort. It’s more accurate to say that people with narcissistic personality disorder (NPD) are in love with an idealized, grandiose image of themselves. And they’re in love with this inflated self-image precisely because it allows them to avoid deep feelings of insecurity. But propping up their delusions of grandeur takes a lot of work—and that’s where the dysfunctional attitudes and behaviors come in.
Narcissistic personality disorder involves a pattern of self-centered, arrogant thinking and behavior, a lack of empathy and consideration for other people, and an excessive need for admiration. Others often describe people with NPD as cocky, manipulative, selfish, patronizing, and demanding. This way of thinking and behaving surfaces in every area of the narcissist’s life: from work and friendships to family and love relationships.
People with narcissistic personality disorder are extremely resistant to changing their behavior, even when it’s causing them problems. Their tendency is to turn the blame on to others. What’s more, they are extremely sensitive and react badly to even the slightest criticisms, disagreements, or perceived slights, which they view as personal attacks. For the people in the narcissist’s life, it’s often easier just to go along with their demands to avoid the coldness and rages. However, by understanding more about narcissistic personality disorder, you can spot the narcissists in your life, protect yourself from their power plays, and establish healthier boundaries.
Signs and symptoms of narcissistic personality disorder
Grandiose sense of self-importance
Grandiosity is the defining characteristic of narcissism. More than just arrogance or vanity, grandiosity is an unrealistic sense of superiority. Narcissists believe they are unique or “special” and can only be understood by other special people. What’s more, they are too good for anything average or ordinary. They only want to associate and be associated with other high-status people, places, and things.
Narcissists also believe that they’re better than everyone else and expect recognition as such—even when they’ve done nothing to earn it. They will often exaggerate or outright lie about their achievements and talents. And when they talk about work or relationships, all you’ll hear is how much they contribute, how great they are, and how lucky the people in their lives are to have them. They are the undisputed star and everyone else is at best a bit player.
Lives in a fantasy world that supports their delusions of grandeur
Since reality doesn’t support their grandiose view of themselves, narcissists live in a fantasy world propped up by distortion, self-deception, and magical thinking. They spin self-glorifying fantasies of unlimited success, power, brilliance, attractiveness, and ideal love that make them feel special and in control. These fantasies protect them from feelings of inner emptiness and shame, so facts and opinions that contradict them are ignored or rationalized away. Anything that threatens to burst the fantasy bubble is met with extreme defensiveness and even rage, so those around the narcissist learn to tread carefully around their denial of reality.
Needs constant praise and admiration
A narcissist’s sense of superiority is like a balloon that gradually loses air without a steady stream of applause and recognition to keep it inflated. The occasional compliment is not enough. Narcissists need constant food for their ego, so they surround themselves with people who are willing to cater to their obsessive craving for affirmation. These relationships are very one-sided. It’s all about what the admirer can do for the narcissist, never the other way around. And if there is ever an interruption or diminishment in the admirer’s attention and praise, the narcissist treats it as a betrayal.
Sense of entitlement
Because they consider themselves special, narcissists expect favorable treatment as their due. They truly believe that whatever they want, they should get. They also expect the people around them to automatically comply with their every wish and whim. That is their only value. If you don’t anticipate and meet their every need, then you’re useless. And if you have the nerve to defy their will or “selfishly” ask for something in return, prepare yourself for aggression, outrage, or the cold shoulder.
Exploits others without guilt or shame
Narcissists never develop the ability to identify with the feelings of others—to put themselves in other people’s shoes. In other words, they lack empathy. In many ways, they view the people in their lives as objects—there to serve their needs. As a consequence, they don’t think twice about taking advantage of others to achieve their own ends. Sometimes this interpersonal exploitation is malicious, but often it is simply oblivious. Narcissists simply don’t think about how their behavior affects others. And if you point it out, they still won’t truly get it. The only thing they understand is their own needs.
Frequently demeans, intimidates, bullies, or belittles others
Narcissists feel threatened whenever they encounter someone who appears to have something they lack—especially those who are confident and popular. They’re also threatened by people who don’t kowtow to them or who challenge them in any way. Their defense mechanism is contempt. The only way to neutralize the threat and prop up their own sagging ego is to put those people down. They may do it in a patronizing or dismissive way as if to demonstrate how little the other person means to them. Or they may go on the attack with insults, name-calling, bullying, and threats to force the other person back into line.
Don’t fall for the fantasy
Narcissists can be very magnetic and charming. They are very good at creating a fantastical, flattering self-image that draw us in. We’re attracted to their apparent confidence and lofty dreams—and the shakier our own self-esteem, the more seductive the allure. It’s easy to get caught up in their web, thinking that they will fulfill our longing to feel more important, more alive. But it’s just a fantasy, and a costly one at that.
Your needs won’t be fulfilled (or even recognized). It’s important to remember that narcissists aren’t looking for partners; they’re looking for obedient admirers. Your sole value to the narcissist is as someone who can tell them how great they are to prop up their insatiable ego. Your desires and feelings don’t count.
Look at the way the narcissist treats others. If the narcissist lies, manipulates, hurts, and disrespects others, he or she will eventually treat you the same way. Don’t fall for the fantasy that you’re different and will be spared.
Take off the rose-colored glasses. It’s important to see the narcissist in your life for who they really are, not who you want them to be. Stop making excuses for bad behavior or minimizing the hurt it’s causing you. Denial will not make it go away. The reality is that narcissists are very resistant to change, so the true question you must ask yourself is whether you can live like this indefinitely.
Focus on your own dreams. Instead of losing yourself in the narcissist’s delusions, focus on the things you want for yourself. What do you want to change in your life? What gifts would you like to develop? What fantasies do you need to give up in order to create a more fulfilling reality?
Set healthy boundaries
Healthy relationships are based on mutual respect and caring. But narcissists aren’t capable of true reciprocity in their relationships. It isn’t just that they’re not willing; they truly aren’t able. They don’t see you. They don’t hear you. They don’t recognize you as someone who exists outside of their own needs. Because of this, narcissists regularly violate the boundaries of others. What’s more, they do so with an absolute sense of entitlement.
Narcissists think nothing of going through or borrowing your possessions without asking, snooping through your mail and personal correspondence, eavesdropping on conversations, barging in without an invitation, stealing your ideas, and giving you unwanted opinions and advice. They may even tell you what to think and feel. It’s important to recognize these violations for what they are, so you can begin to create healthier boundaries where your needs are respected.
Make a plan. If you have a long-standing pattern of letting others violate your boundaries, it’s not easy to take back control. Set yourself up for success by carefully considering your goals and the potential obstacles. What are the most important changes you hope to achieve? Is there anything you’ve tried in the past with the narcissist that worked? Anything that hasn’t? What is the balance of power between you and how will that impact your plan? How will you enforce your new boundaries? Answering these questions will help you evaluate your options and develop a realistic plan.
Consider a gentle approach. If preserving your relationship with the narcissist is important to you, you will have to tread softly. By pointing out their hurtful or dysfunctional behavior, you are damaging their self-image of perfection. Try to deliver your message calmly, respectfully, and as gently as possible. Focus on how their behavior makes you feel, rather than on their motivations and intentions. If they respond with anger and defensiveness, try to remain calm. Walk away if need be and revisit the conversation later.
Don’t set a boundary unless you’re willing to keep it. You can count on the narcissist to rebel against new boundaries and test your limits, so be prepared. Follow up with any consequences specified. If you back down, you’re sending the message that you don’t need to be taken seriously.
Be prepared for other changes in the relationship. The narcissist will feel threatened and upset by your attempts to take control of your life. They are used to calling the shots. To compensate, they may step up their demands in other aspects of the relationship, distance themselves to punish you, or attempt to manipulate or charm you into giving up the new boundaries. It’s up to you to stand firm.
Don’t take things personally
To protect themselves from feelings of inferiority and shame, narcissists must always deny their shortcomings, cruelties, and mistakes. Often, they will do so by projecting their own faults on to others. It’s very upsetting to get blamed for something that’s not your fault or be characterized with negative traits you don’t possess. But as difficult as it may be, try not to take it personally. It really isn’t about you.
Don’t buy into the narcissist’s version of who you are. Narcissists don’t live in reality, and that includes their views of other people. Don’t let their shame and blame game undermine your self-esteem. Refuse to accept undeserved responsibility, blame, or criticism. That negativity is the narcissist’s to keep.
Don’t argue with a narcissist. When attacked, the natural instinct is to defend yourself and prove the narcissist wrong. But no matter how rational you are or how sound your argument, they are unlikely to hear you. And arguing the point may escalate the situation in a very unpleasant way. Don’t waste your breath. Simply tell the narcissist you disagree with their assessment, then move on.
Know yourself. The best defense against the insults and projections of the narcissist is a strong sense of self. When you know your own strengths and weaknesses, it’s easier to reject any unfair criticisms leveled against you.
Let go of the need for approval. It’s important to detach from the narcissist’s opinion and any desire to please or appease them at the expense of yourself. You need to be okay with knowing the truth about yourself, even if the narcissist sees the situation differently.
Look for support and purpose elsewhere
If you’re going to stay in a relationship with a narcissist, be honest with yourself about what you can—and can’t—expect. A narcissist isn’t going to change into someone who truly values you, so you’ll need to look elsewhere for emotional support and personal fulfillment.
Learn what healthy relationships look and feel like. If you come from a narcissistic family, you may not have a very good sense of what a healthy give-and-take relationship is. The narcissistic pattern of dysfunction may feel comfortable to you. Just remind yourself that as familiar as it feels, it also makes you feel bad. In a reciprocal relationship, you will feel respected, listened to, and free to be yourself.
Spend time with people who give you an honest reflection of who you are. In order to maintain perspective and avoid buying into the narcissist’s distortions, it’s important to spend time with people who know you as you really are and validate your thoughts and feelings.
Make new friendships, if necessary, outside the narcissist’s orbit. Some narcissists isolate the people in their lives in order to better control them. If this is your situation, you’ll need to invest time into rebuilding lapsed friendships or cultivating new relationships.
Look for meaning and purpose in work, volunteering, and hobbies. Instead of looking to the narcissist to make you feel good about yourself, pursue meaningful activities that make use of your talents and allow you to contribute.
How to leave a narcissist
Ending an abusive relationship is never easy. Ending one with a narcissist can be especially difficult as they can be so charming and charismatic—at least at the start of the relationship or if you threaten to leave. It’s easy to become disoriented by the narcissist’s manipulative behavior, caught up in the need to seek their approval, or even to feel “gaslighted” and doubt your own judgement. If you’re codependent, your desire to be loyal may trump even your need to preserve your safety and sense of self. But it’s important to remember that no one deserves to be bullied, threatened, or verbally and emotionally abused in a relationship. There are ways to escape the narcissist—and the guilt and self-blame—and begin the process of healing.
Educate yourself about narcissistic personality disorder. The more you understand, the better you’ll be able to recognize the techniques a narcissist may use to keep you in the relationship. When you threaten to leave, a narcissist will often resurrect the flattery and adoration (“love bombing”) that caused you to be interested in them in the first place. Or they’ll make grand promises about changing their behavior that they have no intention of keeping.
Write down the reasons why you’re leaving. Being clear on why you need to end the relationship can help prevent you from being sucked back in. Keep your list somewhere handy, such as on your phone, and refer to it when you’re starting to have self-doubts or the narcissist is laying on the charm or making outlandish promises.
Seek support. During your time together, the narcissist may have damaged your relationships with friends and family or limited your social life. But whatever your circumstances, you’re not alone. Even if you can’t reach out to old friends, you can find help from support groups or domestic violence helplines and shelters.
Don’t make empty threats. It’s a better tactic to accept that the narcissist won’t change and when you’re ready, simply leave. Making threats or pronouncements will only forewarn the narcissist and enable them to make it more difficult for you to get away.
Seek immediate help if you’re physically threatened or abused. Call 911 in the U.S. or your country’s local emergency service.
For more tips on leaving, read How to Get Out of an Abusive Relationship.
After you’ve left
Leaving a narcissist can be a huge blow to their sense of entitlement and self-importance. Their huge ego still needs to be fed, so they’ll often continue trying to exert control over you. If charm and “love bombing” doesn’t work, they may resort to threats, denigrating you to mutual friends and acquaintances, or stalking you, on social media or in person.
Cut off all contact with the narcissist. The more contact you have with them, the more hope you’ll give them that they can reel you back in. It’s safer to block their calls, texts, and emails, and disconnect from them on social media. If you have children together, have others with you for any scheduled custody handovers.
Allow yourself to grieve. Breakups can be extremely painful, whatever the circumstances. Even ending a toxic relationship can leave you feeling sad, angry, confused, and grieving the loss of shared dreams and commitments. Healing can take time, so go easy on yourself and turn to family and friends for support.
Don’t expect the narcissist to share your grief. Once the message sinks in that you will no longer be feeding their ego, the narcissist will likely soon move on to exploit someone else. They won’t feel loss or guilt, just that never-ending need for praise and admiration. This is no reflection on you, but rather an illustration of how very one-sided their relationships always are.
If you need help for narcissistic personality disorder
Due to the very nature of the disorder, most people with NPD are reluctant to admit they have a problem—and even more reluctant to seek help. Even when they do, narcissistic personality disorder can be very challenging to treat. But that doesn’t mean there’s no hope or that changes aren’t possible. Mood stabilizers, antidepressants, and antipsychotic drugs are sometimes prescribed in severe cases or if your NPD co-occurs with another disorder. However, in most cases psychotherapy is the primary form of treatment.
Working with a skilled therapist, you can learn to accept responsibility for your actions, develop a better sense of proportion, and build healthier relationships. You can also work on developing your emotional intelligence (EQ). EQ is the ability to understand, use, and manage your emotions in positive ways to empathize with others, communicate effectively, and builder strong relationships. Importantly, the skills that make up emotional intelligence can be learned at any time.
Get more help
Narcissism and Abuse – Whether or not your partner is dealing with a mental health disorder, you’re not responsible for their behaviors. (National Domestic Violence Hotline)
How to Leave a Narcissist or Toxic Relationship – Tips on how to end an abusive relationship. (Psychology Today)
Is Donald Trump a Narcissist? – An interview with Director of Psychiatry and Psychotherapy at Berlin’s Charité Hospital. (DW Akademie)
How to Speak to a Narcissist
Dr. Greg Hamlin explains the two major characteristics of the narcissistic personality type and offers some tips for how to communicate more effectively with people who show these characteristics.
Intergenerational connections: Everybody wins
by Jane Vock
We don’t do families the way we used to in North America. Parents, grandparents, and children used to share the same household or were all located in the same small village or town. In today’s world, living together in the same household is no longer the default and families are often separated by distance.
It can be hard to maintain links across the generations. The relationship between a grandparent and a grandchild however, is worth nurturing. The research indicates that it is good for the grandparents and good for the kids. It’s so beneficial to both that a Stanford psychology professor and researcher has called for a national movement that encourages “intergenerational engagement between the young and old alike.”
Benefits for grandparents
Increases the frequency of smiling in older adults
Gives a sense of purpose
Fosters connection (and therefore reduces risk of loneliness and isolation)
Infuses energy and invigoration
Inspires learning – (grandkids are often great at teaching technology)
Benefits for grandkids
Experience of unconditional love.
Grandparents often don’t have as many distractions or responsibilities and the grandkids can savor the joys that come with undivided attention. I often hear parents say that their parents weren’t nearly as fun and loving with them as they are with their grandchildren. It’s not personal, it’s situational!
Positive portrayal of older adults and aging
Great source of learning (about family history, life experiences, what life was like before Netflix, PlayStation, cell phones, and gasp, the Internet)
Benefits for parents
Can give you a break and frankly, a free babysitter.
Gives you the satisfaction of watching your parents and kids develop close, enduring bonds
Preps the kids for when you get older
Now I am not telling you what to do (well ok, maybe I am) but seriously, having this break from parenting is a perfect opportunity to devote some time to self care and your other important relationships.
Fostering fun, pleasurable connections
The trick is to foster a relationship between your kids and your parents that is pleasurable. That means you nix guilt induced connections or framing them as an obligation. This might mean dropping the kids off for an impromptu cooking or baking lesson (or official taster!) or inviting your parents to participate in their grandkids’ lives in other ways – going to their soccer or baseball games, attending school concerts. A sleepover at grandma’s house can be a treat for everyone (did someone say date night?)
And if there isn’t geographical proximity, technology offers many options: FaceTime, Skype (why not Skype the recital), or video links to read a bedtime story.
It really is worth the time and effort to cultivate friendship across the generations – it is a win-win for all family members.
What do you do to nurture the relationship between your kids and your parents? Let us know.
We Need a Culture of Care
By HH Jayapataka Swami
Why is devotee care important in our society?
We have the most complete philosophy, and Srila Prabhupada has given us the wonderful process of Lord Caitanya Mahaprabhu. Part of that process is taking care of the devotees. Actually, Krishna says that He has nothing else to do but to take care of His devotees. And since His devotees are always thinking about Him, He is also always thinking about His devotees. So actually, devotee care is one of the primary angas or aspects of Krishna consciousness.
However, I heard that there was a study by some outsiders where they said that of all the schools, ISKCON has the best philosophy, but when they talk about taking care of devotees, then ISKCON is way down the list. So serving the devotees and taking care of the devotees should be a part of our religion, and we should be doing that as daily work instead of feeling it is something that should be forced.
What areas need care?
Of course, we should take care of devotees in all aspects, but there are some areas that deserve extra attention, like the children, elderly, ladies, the sick, those who are entering into a new ashram — these groups especially need to be helped. People who are visiting and becoming new members of the congregation also need help. Of course, not everything is to be done by the devotee care ministry — some services can be taken up by congregational devotees or by the temple — but at least some areas that are not dealt with by others can be picked up by the devotee care committee.
How can leaders show they care?
Sometimes it’s the small things that count. In the year 2000, I did some brainstorming to find out how the GBC could consider this idea in all its aspects, and what they were willing to do. I was surprised to note that about 75% of what was needed was local; the rest was divided between 15% national and 10% international. So most of the dealings are at the local level. If our leaders understand this and take an interest in devotee care, they can make a big difference.
Devotees believe that leaders should care. For instance, someone said that when an ISKCON leader arrives and devotees offer obeisances, he might stop only to acknowledge them, whereas if the leader of a Christian or other religious group sees someone offering obeisances, they often stop and inquire, “How are you”?
How will this help our movement?
If devotees see that this movement actually cares, they will be more confident to give their lives to Krishna, to give their lives to devotional service. Some may have needs, which if answered, make them feel much more satisfied and willing to serve the movement. The greatest help that can be given is to unite everyone. We should take care of our devotees, especially those who have given their lives to ISKCON. The various activities of devotee care will go a long way toward making one feel that Krishna really cares, also.
How did Srila Prabhupada show devotee care?
I had the good fortune of being in Mayapur when Srila Prabhupada would visit twice a year, once he would come in the summer, during the month of August, and in December he would stay a month and a half. During these times he would work on translations and oversee various projects. Then he would come for about two weeks during the Gaura Purnima festival. Of course, Srila Prabhupada coming here was very much necessary to unite the devotees. He called this the "United Nations of the Spiritual World." Sometimes when Srila Prabhupada saw that people were struggling to control their senses, struggling to become Krishna conscious, he actually was seen crying! He really cared about the devotees. And he would give some instructions either to those devotees or those who had already surrendered, how to somehow help them.
In what ways do you suggest each devotee engage In devotee care?
We should make it a major part of our daily culture — Krishna consciousness and caring. We need to learn how to take better care of each devotee, according to his or her requirements. And of course, those who are in a higher position of responsibility are more empowered to help devotees. Some people feel that caring for devotees is more on the sentimental platform and may spoil them. Actually, those who think that taking care of devotees is sentimental also want to be appreciated and cared for.
Krishna wants us to take care of His devotees. If someone is leaving their body, we should create a nice environment so they can think of Krishna at the time of death. This will go a long, long way in benefiting the devotee. If someone desires to many and we can help them to find a devotee partner, the chances of them marrying a non-devotee are much lower. In these simple ways we can make a big difference and avoid having devotees put in difficult situations unnecessarily, due to not having a care system in place. This is not sentimental. It is something very much needed and real.
Can you suggest some ways in which we can make devotee care popular in ISKCON?
To start, we can make the temple of Radha-Krishna a center of the community, a place that is there to help you. When devotees get sick, sometimes they are asked to go home to their parents. That’s ridiculous. We don’t hesitate to take them when they want to do service, but when they become ill, we send them home. In some countries, devotees have health insurance; in others, at least some medical needs could be supplied by members of the congregation. These acts will go a long way toward healing wounds and proving that ISKCON cares.