“What Caregivers Need to Know”

“What Caregivers Need to Know,” an article in today’s “Parade Magazine,” offers advice on how caregivers can cope physically and psychologically. The article was written by Claire Berman. She is also the author of the book “Caring for Yourself While Caring for Your Aging Parents: How To Help, How To Survive.”

Here’s an excerpt:

“‘In caring for others, are caregivers neglecting the most basic self-care?’ asks NAC President Gail Hunt. ‘Are they getting their flu shots? Are they getting their mammograms? Are they getting their Pap tests? Or are they saying, ‘I don’t have time for that because I’m so immersed in caregiving’? The message has got to be: If you want to do this kind of caregiving, you need to be sure you get the most basic preventive health care for yourself.'”

Ms. Berman offers these coping strategies:

* Learn about the illness.
* Ask for help — and be specific.
* Maintain contact with friends.
* Seek assistance within your community.
* Keep the focus clear.
* Find support in a group.
* Enjoy life outside of the caretaker role.
* Appreciate the good moments.

Here’s a link to the article:

https://web.archive.org/web/20090628153244/http://www.parade.com/articles/editions/2005/edition_10-09-2005/featured_0

What Caregivers Need To Know
By Claire Berman
Parade Magazine
October 9, 2005

And copied below is a short excerpt on coping with the emotional issues raised by caregiving.

Robin

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How Do I Deal With My Feelings?

Studies show that many people are better able to cope with the practical challenges of caregiving than with the emotional issues. Among those issues:

“I feel guilty.” Guilt is the most pervasive emotion of the caregiver—as much for the adult child who lives with a housebound parent as for the one who tries to manage things from a home across the country. We all feel we should be doing more, acting more loving, being more tolerant.

“I feel angry.” There is anger that a loved one should be so ill and needy, and resentment that our own lives have been turned around or that other family members aren’t pitching in. A conversation among siblings might solve the problem, but the angry caregiver thinks: “I shouldn’t have to tell them—can’t they see I’m exhausted?”

“I’m afraid.” We fear the progress of the disease and the difficulties yet to come. Often, we fear that we may not be up to the tasks required of us.

“I miss him.” It’s heart-wrenching to accept the waning powers of a loved one who now requires assistance just to make it safely through a day. We mourn the loss of the person we once knew.

These feelings are normal. The key is to acknowledge them and recognize that they are universal. Most important, don’t feel ashamed of your emotions. It might help to discuss them with a trusted friend.

Disclose early, find roses, and hope in Parkinson’s (2005 article)

I’ve been reading about the importance of hope, and ran across this article from The Washington Post, published last week. It’s certainly worth reading. The author, Daniel Stark, has written extensively about his battle with Parkinson’s Disease (PD). Though it’s about PD, I think the principles apply to any neurodegenerative disorder.

Here’s a link:

www.washingtonpost.com/wp-dyn/content/article/2005/06/20/AR2005062001057.html

Living Large With Parkinson’s
It’s A Messy Path Ahead, the Author Finds — But Better With a Map
By Daniel Stark
Special to The Washington Post
Tuesday, June 21, 2005; Page HE01

Robin

PSP Stages/Phases, by two caregivers

This August 8, 2000 document on the phases/stages of progressive supranuclear palsy (PSP) was written by two caregivers who were members of the now-defunct Johns Hopkins PSP Listserv. Many neurological diseases, such as Alzheimer’s and Parkinson’s, have “stages.” So this was an attempt by two PSP caregivers to have the same guide posts for the PSP community.

The guide is copied below. (I’ve fixed a few typos.)

Robin

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www.pspinformation.com/disease/psp/stages.shtml
[Editor’s note, 2013: This website is no longer active]

Caregiver’s Guide to the Phases/Stages of Progressive Supranuclear Palsy
Compiled by Patricia Lake of Texas and Mary Holeman of Indiana
August 8, 2000

In 1999 several members of the Johns Hopkins PSP Listserv decided to pool their collective wisdom to try to see if they couldn’t categorize the symptoms associated with the normal progression of progressive supranuclear palsy enabling the defining of phases or stages of the disease.

This is the result of these efforts. It was originally posted as a message on the PSPInformation mailing list. Visitors to the PSPInformation website often tried to find the information on the website and couldn’t – so, “by popular demand” we are also publishing it here. PSPInformation.com does not claim any credit nor does it assume any responsibility for the statements made in this article. It is solely the viewpoint of the writers.

This categorizing of the symptoms of progressive supranuclear palsy is not meant to be scientific. If you are caring for someone with PSP you should realize the disease follows its own “timetable”. The progress of the disease may be different in your case. The purpose of the article is to serve as a generalized caregiver’s guideline to what to expect as the disease progresses.

We must also note that progressive supranuclear palsy is often misdiagnosed because the diagnosis is based on symptoms. Many symptoms can apply to more than one of the many diseases and conditions that are very similar and determining their real association can be very difficult if not impossible. Most patients may also be on medication and very susceptible to possible medication caused side-effects. Thus, they may develop symptoms that may be thought to be from progressive supranuclear palsy but are not.

The Phases/Stages of PSP

Phase 1 – Deterioration of handwriting and difficulty writing. Speech problems, difficulty being understood by others, slurring, etc. Coordination problems leading to unexpected falls and stumbling; change in walking rhythms/patterns. Vision problems; some complain of ‘blurred’ vision; some try prisms, but examinations by eye Dr. generally will only find normal vision physically. Lethargy, apathy, no desire to do anything; changes in sleep patterns. Cognitive problems; decrease of sound judgement, decrease in modesty; increase in impatience and irritability.

Phase 2 – Problems sitting down or getting up; cannot lower self into chair gently; just ‘plops’ down. Increased difficulty walking; begins using a cane for balance; will progress to a walker; increased number of falls. Stooped posture because of vision problems; can’t see downward easily. Problems opening or closing eyes; some patients get ‘dry eye’ because their eyes do not close all the way. Difficulty dressing; cannot do buttons or zippers; hands and fingers do not work as they used to. Almost impossible to write anything legibly. Eating problems; coughing and choking; loss of eating etiquette; fills mouth too full; lots of spills; begins wearing a bib to save clothes. Bathroom problems; difficulty voiding/unable to get to bathroom in time; constipation or diarrhea; may need help with personal hygiene. Needs help bathing; may need hand rails/bathing bench, etc. A mobile shower head is a good idea, if possible. Weakness or neglect on one side of body; one side more dominant; ie: drags left or right foot, etc. (ShyDrager Syndrome) Subject to infections; urinary tract, respiratory tract (pneumonia) etc. Alien hand; sometimes holds on to things and cannot let go or takes the hand a long time to release. Difficulty concentrating; sometimes seems ‘out of it’.

Phase 3 – Some obsessive-compulsive behavior: ie: fingers “pill rolling”, hands smoothing out imaginary wrinkles on table, etc. Increased irritability; increased impatience. May become incontinent of urine and bowel. Increased speech problems; often very difficult to understand; cannot articulate proper speech sounds. Increased eating problems; more coughing/choking. Increased cognitive problems; cannot follow stories on TV; cannot read much, due to vision; will watch game shows, some news. In Theater movies are not recommended, as some suffer from ‘sensory overload’; loud sounds and many colors, lots of movement on screen make patient ‘nervous’. sleeps much of the day, and all night, too. Instances of ‘restless leg’ syndrome. Limbs and neck may become rigid; may loose ability to support self on legs. Increased falls; some falls may be close to geing described as ‘seizures’; complete loss of control of arms and legs, with resultant fall. After fall, will sleep for an hour or so; may not always know whether is injured or not; may not ‘feel’ the injury. Increased coughing and choking; drooling becomes common; often does not close mouth; Infections may be more frequent. Requires much more help in dressing and with all activities of daily living. Does not speak much, but does enjoy seeing friends and relatives, even though patient may not respond much to them. May have pain in arms or legs; non-specific pain for no apparent reason; application of ‘heat’ rubs may help; Tylenol may also help.

Phase 4 – Unintelligible speech/mumbling; cannot say words; may go days with out saying anything. constant drooling; coughing and choking may become so severe that eating normally is impossible; Dr. may recommend feeding tube, which requires a surgical procedure to install. May have trouble opening mouth, even for meds. Increased incontinence/constipation problems. Loosing interest in daily activities; sleeps most of the time; uncomfortable sitting for any length of time; prefers bed. Cannot support self on legs; ‘spaghetti legs’; body rigid, especially neck area. Little eye movement; cannot ‘look’ at something; slow to focus on things in view. delusions, hallucinations at times; may be disoriented and not know where they are. Pain, but cannot identify the area. Withdrawn, but remains aware of people; cannot move on own; needs extensive help for all activities of daily living.

Note: These phases or categories often overlap and are not the same for all patients. Some may have two or three phase 1 problems and one phase 3 problem. Some may never have all of the problems, but most will need extensive help to live out their lives and will need to be made as comfortable as possible for the duration of their illness. It is wise to gain from the patient, specific information as to feeding tubes, restorative therapies, etc. before the disease is well advanced; a living will is a good idea, so that loved ones will know how the patient wishes to be treated, should life threatening acute problems occur. Long term care will probably be needed and plans should be made before the patient becomes unable to participate in the planning.

“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.

Robin


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.

Robin


http://www.medicinenet.com/script/main/art.asp?articlekey=52523

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.

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Last Editorial Review: 1/31/2005 8:11:35 AM