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Caring for the Caregiver | Inspiration | Resources | Readings

Caring for the Caregivers
Presented at "Confronting the Challenges of ALS by Instilling Hope"
An Ask the Experts Program

If you 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?

Sharing 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 normal".

"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 Dr. Weiner.

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) 865-8067
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