When we get married as young adults, we have wonderful, limitless expectations for our life ahead with the person that we love. We have dreams, and hopes, none of which include our loved one being diagnosed with a progressive neurological disease. At first we are able to cope with the impact of the diagnosis because we educate ourselves and learn a lot about Parkinson’s disease. It seems to progress very slowly. We are able to continue our lives pretty much as we had hoped. Depending on the age of diagnosis, our loved one can probably maintain a mutually supportive relationship for quite a while. They retain their ability to take care of themselves and their feelings of self worth are maintained because they are still contributing in their usual ways.
But what about when these things change? Who or what has prepared us for this? How do we know how to handle all the overwhelming and unremitting feelings that come up – isolation, grief, anger, depression, frustration… I know we are not promised a rose garden, but we are also not prepared by life to handle the changes that occur. Sometimes I feel that if I had raised children I might be better equipped to handle things, i.e. more patience, experience in the subrogation of my self, etc. However a friend of mine who has raised two children disagrees with me. She feels that nothing adequately prepares you for the caregiver role.
Often our partners are fighting the demons of their own illness so intensely that they develop tunnel vision and are only able to deal with their own needs. They are usually unable to help us, especially in the later stages of the disease. Friends and family members are well intentioned but have not been here and don’t know what it is like. They also are glad that we are doing the job. Otherwise they might have to – and they don’t how they would do it. Have you heard that? Well, guess what, we don’t really know how to do it either, do we? But here we are, doing the best that we can. And sometimes I’m sure that other people are coping better than I am.
The only honest answers that I have for other people when they ask how I do it, is that I do not have a choice and I am doing the best that I can. We have not been prepared for this role, so the most that we can expect of ourselves is to do the best that we can do. That means that at times we do very well and other times we do not function well. I know I often experience both within the same 24 hours. We have to be our own best friend at times and accept ourselves as someone thrust into a situation for which we were ill-prepared. I really am doing the best that I can do. How about you? Good enough? You bet it is!!
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.
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 Bio-statistician 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 American 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.