For those who care for someone with Parkinson's disease

Parkinson's disease Caregiver Commentary

What Might Help Us Cope?
By Susan Hamburger

Editors Note: Susan was caregiver to her husband Stan, diagnosed with Parkinson's disease in 1980. He passed away on August 12, 2008 at the age of 73.

If the caregiver's health breaks down, who is going to take care of the Parkinson patient? This question raises one of the most difficult issues caregivers must face. When a loved one is sick for a few days or weeks, we can easily make some short-term adjustments to provide the needed care. But when the caregiving is long term, such as in Parkinson's disease, we can't go on for very long without some kind of organization or structure to our days.

Most experts will remind us that caregivers experience great emotional stress and physical strain over time. In early stages of disease, caregivers attempt to provide complete and perfect care and seem to have little stress. However as the months and years pass and the disease progresses, greater demands are put on the caregiver. These demands can seem never ending and overwhelming at times. The less than perfect care provided by a burned out or exhausted caregiver leads to feelings of guilt and failure. So it's very important to protect our own health and welfare while caring for a Parkinsonian - and do it consciously and for your own sake as well as the patient's.

You must set limits for yourself to stay healthy and replenish your energy and patience. If help is offered, accept it. This is difficult at first and can create some initial anxiety, but you will get used to your time away and realize the patient does survive without you - whether the time is for a few hours or a few days.

Take advantage of local Parkinson organizations and support groups to get information and help. Know what services the local churches, hospital social workers, and area agencies on aging have available. Ask friends and relatives for help. You may be surprised how willing many of them are.

Do the important things first and don't create obstacles for yourself by expecting too much of yourself. Try to accept some household dust, less time-consuming meals and convenience foods, papers spread around, and unironed pillow sheets. Forgive yourself if you don't do things the way you used to and often less than perfectly and just be grateful the your loved one will quickly forget any oversight or mishap.

I truly believe that if you do this, it will help carry you through. Some things that happen are actually incongruous and funny. We need to laugh with our loved ones and family.

It is essential for our emotional well-being that we keep up with at least some of our past activities. Get out, see friends, and pursue your special interests.

Did you realize that caregivers are entitled to pleasurable times too? Give yourself little treats - a new outfit, a good book, a special dinner with friends, a long bath, or whatever will please you. REMEMBER, the Parkinsonian will not get better (until a cure is found), no matter what you do or how well you do it. Take care of yourself and realize that it is okay to be upset with your situation. You did not choose it.

The sharing and caring in support groups is invaluable and can be very therapeutic. There is no one who understands the plight of a caregiver better than another caregiver.

About the Author
Susan Hamburger earned a Bachelors Degree from the University of Wisconsin in Elementary Education, and two Master's Degrees, in Educational Psychology and Biostatistics/ Epidemiology. She has been a kindergarten teacher, a school psychologist, and retired as Biostatistician at the National Institute of Mental Health.

Susan has served on the Board of local Parkinson's disease support group organizations since the early 1990's. She has served Chair of the Patient Services Committee, Vice-President and President of the Washington DC area chapters of the Amercican Parkinson's Disease Association and the National Parkinson's Disease Foundation. Susan has also spent many hours on Capitol Hill, lobbying our Senators and Representatives to increase the funding for Parkinson's disease research.

Read more commentary...