“Challenging the Odds: forget the prognosis”

Back in 2004 when my father was diagnosed with progressive supranuclear palsy, I joined some online support groups related to PSP.  I met an incredible woman named Aletta, who had been diagnosed in the mid-80s with multiple system atrophy (though she prefers the old term Shy Drager Syndrome).

Today, Aletta posted this wonderful article by Barry Bittman, MD on accepting the diagnosis (or getting a second opinion) but forgetting the prognosis.


Challenging the Odds: forget the prognosis
by Barry Bittman, MD
Emerge, March 1996

Have you ever met anyone who was given 3 months to live 10 or more years ago, who is still alive today?

Have you ever known a person, who despite an immediately fatal prognosis, managed to beat the odds and survive for a certain occasion such as a
child’s wedding?

Have you ever lost a grandparent who accurately predicted his/her death upon losing a soul mate?

Did you ever stop to consider if it is possible for a doctor to tell us how long we have to live?

If you’ve answered yes to any of these questions, read on.  It’s a fact that many people are alive and thriving today who were told many years ago
that they had only a short time to live.  It’s also common knowledge that some people live just long enough to witness the birth of a new grandchild or to attend a graduation or wedding.  And it doesn’t seem to surprise anyone when the death of one grandparent follows shortly after the other.

Yet, few of us understand how any doctor can make the statement, “You have 3 months to live.”  I’ll let you in on something …. they can’t!

Actually, all that a physician can tell you is how long the average person with your condition typically survives.  The problem here is with the
words, “average” and “typically.”  The doctor relies on statistical data based upon a bell-shaped curve that documents the range of survival for
people who are suffering from a given disease.  At the peak of the curve is the most common survival time experienced by the group under study.  It
comes as no surprise that everyone does not fit there, and often the range of possibilities is extensive.  Some succumb earlier than expected, while others far exceed their prognosis.

Sometimes, however, I wonder if physicians really understand how their conveyed prognosis has the potential to become reality, not because of
statistics, but rather as a result of its impact on the patient’s belief system.  In essence, the doctor’s words become a self-fulfilling
prophecy.  Some people go home and get their things in order, while others go home and get their lives in order.

You’re probably asking yourself what is the difference.  Frankly, the distinction is as wide as the Grand Canyon.  The first group of patients
returns home, announces the bad news, proceeds through the predictable stages of Kubler-Ross, (anger, denial, etc.) revamps their wills, tidies up
their safe deposit boxes, lies down and dies on cue.

The second group, however, goes home and gets their lives in order.  They maintain a fighting determination to complete unfinished business – to accomplish what they never have before.  Remaining time is spent on what they have always hoped to do.  A focus on surviving gives way to planting gardens, creating wildlife sanctuaries, teaching Sunday School, playing with grandchildren, volunteering time for others, and expressing their love.  This group attends classes, reads enlightening books, becomes more spiritual, and sets out on a quest to discover meaning in their lives.

And then something extraordinary occurs – they flourish.  Eating right, exercising, and taking care of one’s self comes naturally, and not as a way
to prolong survival.  Rather, self-care simply evolves as a logical means for enabling their mission in life.

It’s easy to pick such individuals out of a crowd.  These “survivors” make the world a beautiful place, help others, and fulfill their dreams.  They’re the ones who are living mindfully appreciating every moment, and treasuring each experience with gusto and gratitude to our
Creator.  They are our best teachers and guides.

So where does this leave us when faced with a less than desirable prognosis?  My recommendations are simple.  Accept your diagnosis, or, if in doubt, get another opinion.  But never accept your prognosis!

Know that all things are possible, and listen to your inner voice.  Realize that living beyond a serious illness may not be in the cards for all of us
no matter what we do. Yet always remember that it’s the way we live each day that makes the difference.  Love life, realize your dreams, and tip the balance in your favor – Mind Over Matter!
Copyright 1998,1999 Barry Bittman, MD. All rights reserved.

Caregiver Grief Triggers Mixed Emotions

Here’s a recent article I came across on the topic of anticipatory grief. The article points out that the grief may come with the initial diagnosis of a loved one with a debilitating condition.

A few tips are given to help caregivers cope:
* be more than a caregiver;
* create a network;
* assign tasks to listeners, doers, or relaxers who are willing to help;
* get help with housework;
* take care of your own health; and
* consider respite care.

Here’s a link to the WebMD article and the full text.



Caregiver Grief Triggers Mixed Emotions

From the initial diagnosis to a loved one’s death and beyond, caregivers are faced with a barrage of conflicting feelings. Here’s how to cope with them.

By Sid Kirchheimer
WebMD Feature
June 8, 2004

The nation’s grief surfaced on Saturday, when former President Ronald Reagan finally succumbed to Alzheimer’s disease after a 10-year battle. But in millions of individual American homes dealing with a similar fate, it often starts long before a death.

It may come with the initial diagnosis — of multiple sclerosis, ALS, cancer, Parkinson’s, Alzheimer’s, or other chronic, debilitating conditions. Or when a once-vibrant loved one can’t recall a treasured memory, move without difficulty, or even go to the bathroom. As their withering continues, over days or decades, this grief often intensifies.

“As a family caregiver, you are grieving throughout the entire process, not only with the death of your loved one,” says Suzanne Mintz, president and co-founder of the National Family Caregivers Association, who cares for her MS-afflicted husband and whose father also died from Alzheimer’s five years ago. “You grieve with each loss — each time they go down a notch, with each reminder of what was and what it has become.”

During the course of a chronic illness, caregivers typically experience a range of emotions: Hopelessness. Stress. Guilt. Sadness. Anger. Depression.

A Range of Feelings

“Grief is a reaction to a loss, but it can be — and with caregivers grief often is — a multifaceted reaction,” says Kenneth Doka, PhD, MDiv, professor of gerontology at the Graduate School of the College of New Rochelle and the author of 17 books on grief, including the new Living with Grief: Alzheimer’s Disease.

“We tend to associate grief with strictly negative emotions, but it’s much wider than that,” he tells WebMD. “We know that with the death, there’s often relief that the suffering has ended. But there can also be strong feelings of fulfillment. Right now, Nancy Reagan may be saying, ‘I got through this. I was by his side, even when he didn’t know I was by his side.'”

These conflicting emotions can play havoc with an already stressed and vulnerable psyche, which may explain why nearly one in three caregivers meets the medical diagnosis for depression, according to a study last year in the American Journal of Geriatric Psychiatry.

“Caregivers’ depression often improves following the loss, but not always,” says study researcher and psychologist Holly G. Prigerson, PhD, a grief and bereavement expert at Yale University School of Medicine.

“The emphasis is often on the great relief that occurs following the death, once the caregiving and agonizing is over,” she tells WebMD. “They think it should be downhill after that, but it’s not as easy as that. These people typically have been caregivers for about 10 years — that has been their identity and mission — and it can be very difficult for them to regain their life.

“I just read a book about a woman whose husband had ALS. After he died, she became suicidal because her main reason for living was to care for him. When he died, she had a gaping hole she had to fill. Just because someone feels relief doesn’t mean they also don’t feel huge amounts of grief, loneliness, and abandonment.”

How to Cope

So how can caregivers better work through the barrage of emotions that occur during an after a loved one’s illness?

* Be more than a caregiver. “For many people, the role of caregiver is all-consuming,” says Doka. “So when it ends, life can feel as though it’s lost its meaning and purpose.”

That’s why it’s important for caregivers to set up regular “me” time, says Prigerson. “You need to make sure you’re not socially isolated, and your days prior to the death consist of just more than just caregiving. We found that one of the great aspects of caregiving burden that leads to depression isn’t from the hours spent giving care, but that the caregiver feels deprived of their own time. You really need to take time for yourself, whether it’s going for walk or enjoying a nice dinner out sometime.”

* Nurture a network … Many caregivers feel it’s their responsibility to offer care and hesitate to seek help elsewhere. Bad move. “What I do on a clinical basis is have caregivers write down the names of all the people that could be in their network,” says Doka. “Not just family members, but also friends, neighbors, or if they’re involved in a faith community, consider members of their church, who can be a strong part of your network.”

* … And assign tasks. Understand that different people can perform different roles, he adds. “Some people are more prone to be good listeners, others are doers, while others are good for helping you with rest and relaxation. Even when caregivers have a big network of support, a common problem is that they don’t use it well. I suggest on your list you assign tasks to different people: Some are Ls (listeners), Ds (doers) or Rs (relaxers).”

* Get help with housework. “You would think that emotional dependency is the biggest predictor of a caregiver’s complicated grief,” says Prigerson, “but studies indicate that when a caregiver has been dependent on their ailing spouse for household chores, that can have an even bigger impact.” In other words, try to get help with routine chores such as laundry, cleaning, and shopping.

* Mind your own health. Since they are preoccupied with a loved one’s illness, caregivers often turn a blind eye to their own health. “The risk of hospitalization of a caregiver is greatest in the months following the death,” she says. So when the patient is falling, and especially afterward, be especially mindful of your eating, sleeping, and exercise habits. “This is where ‘me’ time becomes especially important.”

* Consider respite care. The Alzheimer’s Association and similar advocacy groups often offer respite care — in essence, adult day care for afflicted patients that allow caregivers time for themselves. “One of the best things you can do is contact your local chapter or a VA hospital to see what’s available in your area,” says Mintz. “There is help out there.”

Published June 8, 2004.

SOURCES: Suzanne Mintz, president and co-founder, the National Family Caregivers Association, Kensington, Md. Kenneth Doka, PhD, MDiv, professor of gerontology, Graduate School of the College of New Rochelle, New Rochelle, N.Y.; senior consultant, Hospice Foundation of America; past president, Association for Death Education and Counseling. Holly G. Prigerson, PhD, associate professor of psychiatry, Yale University School of Medicine, New Haven, Conn. Prigerson, H., American Journal of Geriatric Psychiatry, June 2003; vol 11; pp 309-319.

©1996-2005 WebMD Inc. All rights reserved.
Last Editorial Review: 1/31/2005 8:11:35 AM

“Caregiving at Life’s End”

The American Hospice Foundation (americanhospice.org) has wonderful articles about hospice as well as caregiving.  In this 2004 article, Johanna Turner discusses the challenging of caregiving at the end of a loved one’s life.

This article reviews several emotions that caregivers may feel while caring for someone at the end of life:

  • alone and exhausted
  • fear
  • comforter-in-charge
  • (fear in making) hard decisions
  • feeling angry or guilty

Then the author provides many suggestions to cope with each feeling.



Caregiving at Life’s End: Facing the Challenges
American Hospice Foundation
By Johanna Turner

With an aging population and a dwindling pool of family members available to care for them, increasing numbers of Americans now find themselves in the role of caregiver. Much has been written about the significant challenges of caring for chronically ill family members or those with dementia, but the realities of caring for a dying loved one are unique and less understood. If you are a caregiver for someone in the final stages of life, you may recognize yourself in the following paragraphs and find benefit in the accompanying suggestions. If you have hospice care, these professionals can help you sort out the answers.

Alone and Exhausted

All caregivers experience isolation and fatigue. There is an unmistakable urgency in caregiving at the end of life, however, because time is short: “I can rest after this is over, but I want to do everything I can while I can.” You may not want to leave home today – or even take a long bath or short nap – because there may not be many days left.

Moreover, care requirements are often staggering. The situation may change daily, or even hourly. Frequent medications, dressing changes, safety, toileting, feeding, and emotional support seem to fill every moment. You want to do your very best and it seems important that you do it yourself, so you may be reluctant to make a place in that schedule for self-care, or to ask for help. Caregivers may be tempted to turn to food, alcohol, or to the drugs on-hand for comfort.

These go-it-alone weeks leave little time to grieve. Grief does not suddenly appear after a death, it begins with the first inkling that the one you love may not get well. When the busy-ness of caregiving shuts out grief, your emotional and physical health can suffer when it is finally faced.

Accepting your indispensable role in this situation also means accepting the importance of your own well-being. You cannot know how long you will be caregiving, and if you are determined to see it through, self-care is part of your job each day.


* Make a list of tasks that others can do – shopping, providing nourishing meals, doing laundry, maintaining contact with others, or just being in the house so that you can nap – and resolve to say yes when asked.
* At least once each day, ask a family member or friend to help you with something. You may be doing such a good job that your need for help is invisible to others.
* If you belong to a faith community, ask what help is available. Many such communities have individuals or teams that are dedicated to practical support.
* Find out about your local hospice. Hospice professionals have the expertise to understand how long your loved one may live and can help you plan to manage this time. That plan may include in-home aides, trained volunteers, and proven community resources.
* See your doctor. Take note of your own weight gain or loss, inability to sleep, or increasing episodes of feeling like you are falling apart. Self-medicating with drugs or alcohol will decrease your capacity to provide good care and place both you and your loved one at risk.
* Thoughtfully plan for your own nutritional needs at the same time you plan for “your patient.” A hospice dietitian can help.
* Identify at least one person you can lean on, cry with, and talk to about what is happening with your spirit. End-of-life caregivers often do not wish to burden others who are already sad, so it is good to speak with an outsider, such as a counselor or member of the clergy. Hospice social workers can fill this extraordinarily important need.


It is no exaggeration to say that end-of-life caregiving, like raising children, is probably the most important thing you will ever do. This person that you love depends on you for the very quality of his or her life. Your actions are the difference between pain and comfort, between being agitated and being at peace. Tasks like giving injections or suppositories, ostomy care, or respiratory treatments seem daunting – and how do you shampoo hair when someone can’t get out of bed? None of us comes to caregiving with the knowledge and skills we will need. Feeling unprepared to do things you’ve never done before is understandably frightening.

Many of us are afraid of the unknown. Our culture has kept dying out of sight, and few Americans have been present for a death. You may fear what might happen at the time of death, and you may also be fearful about your own capacity to handle it. Beyond the loss is an even greater, perhaps more frightening, unknown – your life without your loved one.


* Get good information on what you need to do and an expert to teach you how to do it – a hospice nurse does this every day. Make sure that you have written information and 24-hour backup for questions that arise in the middle of the night, something that a hospice can provide.
* Accept that you may reach your limit and that other options are available. Even your best intentions and a good support system may not be enough if care is complex and physically demanding. * Most hospices can provide their expert care in nursing homes or assisted living facilities when care at home is not possible.
* Learn what will happen when your loved one dies. Although every detail cannot be foreseen, experienced professionals like hospice nurses can tell you generally what to expect and what your loved one will experience. Many people have feared watching someone die, but with good preparation, find it to be a healing experience.
* Decide if you would prefer to have others with you at the time of death or if you want to be alone. Make a plan that ensures you can summon others on short notice.
* Discuss what frightens you with someone who can address your specific concerns: a clergy person or hospice chaplain for spiritual worries, the doctor or nurse about physical changes, and a counselor or hospice social worker for fears about your own capacity to cope.
* Think about how you will manage the first weeks after the death but delay other decisions about your future. You have too much on your mind and heart right now for long-range planning, even though you may feel a little panicky. Put it away for another day.

The Comforter-in-charge

Even as you have the primary responsibility for caregiving, your family and friends probably look to you for sympathy and support, as well: a parent needs to comfort the children while caring for the spouse; a daughter nurtures and provides solace to her father while tending to her dying mother. You have become the manager of this sad time for everyone, and you are really giving care in several directions at once. It is easy to get emotionally lost in this busy traffic circle of need.

In the face of the distress around you, you may also believe that it is up to you to be the brave one. It is very difficult to bear this bravery burden and assure others that all will be well when you do not believe it and feel out of control, yourself.


* Let other family members know that you are grieving and that you are getting help with these emotions. Set an example.
* Gently protect yourself. It’s okay to say “I know this is awful for you, we’re all struggling in our own way. I’ll try to help you but my first priority has to be taking care of Dad, I’m sure you understand.”
* Accept how emotionally vulnerable you are rather than fighting it. Bravery – to the point of blocking or denying your feelings – is neither healthy for you nor a good model for those around you.
* Identify a safety net, not only for yourself but also for others affected by this impending loss. Children’s friends (and their parents) and teachers need to know what is happening. Have a family meeting and recommend that each person think about whom he or she can turn to for understanding. The wider this circle of support extends, the better each of you can care for yourself and each other. Hospice professionals and volunteers can be part of that safety net.

The Hard Decisions

Caregiving at the end of life includes making decisions, some of which may seem unbearably hard. The challenge is to trust the information on which you must base these decisions and to trust your ability to make them wisely and lovingly. If the one who is ill can no longer make decisions or needs you to lead that process, you will probably need to decide when it’s time to stop aggressive, curative treatment and focus instead on comfort care. For many, this is an acknowledgment of mortality that has been kept at arm’s length, and it is not unusual for family members to disagree. An advance directive or a timely discussion – before decisions must be made – can make your life a lot easier.

Even as the disease progresses and death seems not so distant, you may still face tough choices. Will another radiation treatment lessen the pain of bone metastases or will it be too burdensome? Do we treat this pneumonia with antibiotics or let the infection run its course? Do we transfuse? Do we put in an IV or feeding tube?

The issue of feeding and hydration evokes a strong and complex emotional response. From childhood, we are taught that being well nourished and drinking lots of water is important for just about everything. Especially for women, feeding those we love feels almost like it is part of our genetic code and is synonymous with “taking good care” of another. But you may be asked to stop feeding your loved one, by mouth or by artificial means, or you may need to do the asking at the time when nourishment becomes an uncomfortable burden rather than a benefit. This is an arduous decision.


* It’s not too late to create an advance directive if the one who is ill is mentally clear and can communicate with you – get busy today. You can read more about directives on the American Bar Association site, and download the forms from Caring Connections. Hospices can also provide this information.
* Conversations are just as important as documents, so start talking and listening. If it is difficult to raise the subject, start with “Being with you has made me think about how I’d like to be treated when I am very sick. I wonder at what point I’d decide that a treatment is not making my life better and I would choose another path. Can we talk about this?”
… or a briefer conversation: “Tell me what is most important to you in the months ahead because I want to help make sure that happens.”
* Get expert guidance on treatment decisions as the disease progresses. There is almost always something else that can be done, but the important questions are:
– How does this treatment fit with our wishes?
– Will it change the outcome of the disease?
– Will it enhance or diminish the quality of life?
Physicians trained in palliative medicine and hospice professionals can help you find the answers to these questions.
* Learn about how the body processes food and liquids as death approaches. The professionals mentioned in this article can tell you about care that does not cause discomfort and can support you in making difficult choices.

Feeling Angry and/or Guilty

During such an intense, emotional time, you may discover feelings that disturb you. Anger is a common reaction when life seems out of control, and you may be angry at doctors, your relatives or yourself. You may just be angry that your life is so difficult right now, and perhaps you feel guilty about these feelings. Or you may have guilty regrets about what you have or have not done.

It doesn’t take much of a stretch to feel like a martyr. You have put your own life on hold to be a caregiver while others seem to go on with their lives. There are outpourings of encouragement and good wishes for the one in your care, and sometimes you feel invisible or like hired help: “You’re so strong, but I’m so worried about your brother.” Of course you want support for your loved one, but still… And that may be something else to feel guilty about.

The thought that probably appalls you the most is the wish that can come in the night after a long and difficult day, a wish for it all to be over. “Okay, death, get on with it. We’re all pretty tired here and we can’t see the end of this, and it’s just too hard. I’m not sure I can keep doing this and there is no one to whom I can hand in my resignation, so let me not hear breathing when I go back in the room…”

Each situation is unique and not every end-of-life caregiver has these feelings. But if you do, it is by no means a reflection of not loving enough, not caring enough or not intending to continue caregiving. It is a reflection of the fact that you are a human being who has reached the end of your emotional rope and you are afraid you will begin to fall short of meeting the challenges yet ahead, and it is past time to find – and accept – help.


* Make physical outlets for your anger; find an opportunity to work out in a gym or make a place at home to harmlessly hit, rip or throw something. Almost any loss produces anger, and this anger grows from a loss of control and the impending loss of the one you love. It’s normal.
* Make a list of the things that make you feel guilty. If you cannot discuss them with another, like the hospice social worker, look at the list and consider how recent information and hindsight makes you second-guess yourself. Cross off the things for which you can say, “this was the best I could do with what I knew at the time.” Forgiveness is for the remainder of the list.
* If your faith has been an important part of your life, talk to your clergy person or a hospice chaplain about your obstacles to forgiving others and forgiving yourself.
* Consider that your readiness for death to come is a sign of your acceptance of its inevitability as well as your own exhaustion. Seek additional physical and emotional support from friends and professionals. Hospices offer inpatient respite care to allow family caregivers some time for rest and renewal.

Finally, your caregiving situation is medically, emotionally and spiritually unique. Well-meaning friends will share their stories, but do not accept comparisons that cause you distress. Know that thousands of people share your struggle at this moment, and you are all giving an amazingly complicated and wonderful gift.

© 2004. American Hospice Foundation. All Rights Reserved.