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Caring for the Caregiver
for the Caregivers
Presented at "Confronting the Challenges of ALS by Instilling Hope"
An Ask the Experts Program
don't take care of yourself, who is going to do it for you? And, if your
health breaks down, who's going to take care of your loved one?
her thoughts, Dr. Lisa Weiner said, "Most people fear the unknown, and
ALS has its share of the "unknown". It's important to normalize the process,
and normalize one's feelings of anxiety, anger and resentment. Give yourself
permission to be angry not only at the disease, but at the person with
ALS who will inevitably pass on, leaving you behind. These feelings are
"Most families feel
guilty about wanting a little time for themselves or wanting to have fun.
Remember that ALS is only part of your current life situation," concluded
These questions raise
some of the most difficult issues caregivers must face. When a loved one
is sick for a few weeks, most of us can make some short-term adjustments
to provide the needed care. But, when the caring is of a long-term nature,
we can't go on for very long without some organization or structure to
our days. One of the most difficult things for caregivers to do is to
retain some perspective on what's best for their loved ones - and for
themselves, as caregivers.
Experts warn that
in some cases of ALS, caregivers can experience such great stress and
trauma as may put them at risk of becoming potential secondary victims
of the disease. Often, emotionally laden promises and tacit agreements
of earlier relationships weigh heavily when decisions are made about providing
care for the person with ALS.
In the early stages
of the disease, caregivers attempt to provide complete and perfect care
for their loved one. However, as the months and years pass and the disease
progresses, greater demands are put on the caregiver. The less than perfect
care provided by an exhausted caregiver leads to feelings of guilt and
failure. It's little wonder that caregivers show the strain. The suggestions
that follow may enable caregivers to protect their own health and welfare.
- Don't try to
do it all yourself. You must set limits to survive and stay healthy.
Remember that you need to stay healthy to help your loved one. Accept
help when it is offered. It may be difficult at first and you may be
nervous about leaving your PALS in someone else's care, but you will
get used to your time away and will quickly realize that your PALS will
be none the worse. You will have replenished your energy and patience
and will be better able to cope.
- Develop a sense
of your resources. Make your job lighter, more manageable; be sure
to contact your local ALS Association's Chapter for information and
help. Also consult your community service agencies, churches, hospital
social workers, area agencies.
- Actively pursue
your resources. Make them work for you. And don't be afraid to ask
friends and relatives to help; they may be waiting for just that. You
may be surprised to learn that you have been holding them off. Explain
ALS and how it has affected your loved one. That may be all you need
to make others comfortable in helping out on a regular basis. Sometimes
just asking a friend to come over for a short visit can make a big difference.
- Set Priorities.
Do the important things first. Don't expect to accomplish all the things
you were able to do before your caregiving days. If you kept a house
immaculately clean, try to accept some dust. If you cooked fancy meals,
try less time-consuming dishes or even convenience foods. Don't create
obstacles by expecting too much of yourself. Do forgive yourself if
things don't go just right; be grateful that your loved one will quickly
forget any oversight or mishap.
- Develop a Sense
of Humor. It will help carry you through. Some things that happen
are actually incongruous and funny; learn to laugh with your loved one
and your family.
- Maintain Social
Contacts. It's essential to your emotional well being that you keep
up with at least some of your own activities. Get out, see friends,
and continue with your special interest. Get a neighbor, relative, friend,
a volunteer from your local church or synagogue, or a paid home aide
to provide the temporary care for your PALS.
- Care for the
Caregiver. Remember that a caregiver is entitled to pleasurable
times, too. Give yourself little treats such as time to read a good
book, a special dinner with friends, a long bath or whatever may please
you. Know that it's okay to be upset with your situation, as it is nothing
you would have chosen. Many people find it hard; you are not alone.
- Join a Support
Group. There is no one who understands the plight of a caregiver
better than another caregiver.
The bottom line on
when the caring is too much is when it threatens to break down the health
of the caregiver, or severely limits the caregiver's normal social functioning
and ability to work. When this is the case, it may well be time to sit
down and talk it over with your doctor. Your ALS Association Chapter can
be a valuable source of information and support.
(This information is based on materials prepared by Rachel G. Billington
and Ruth Rabyne, ADRDA members. This article was printed in the ALSA GLAC
June 1999 newsletter).
The ALS Association Greater
Los Angeles Chapter • P.O. Box 565, Agoura Hills, CA 91376-0565, Tel: (818)
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