I often have a dilemma that I’m sure most caregivers face at times; especially those with loved ones in the later stages of Parkinson’s – how much help to give to the Parkinsonian. I am a big believer in a certain degree of independence and people doing things for themselves, even if it is a little difficult at times. I always have felt that way and still do, but as you can imagine, it raises some issues for me when I have to decide how much help to give Stan.
Stan and I both have been independent all of our lives – in our personal life and in our work lives. He has many obstacles to being independent now and I think that bothers him a great deal at times. I want him to feel that he can still do some things by himself and is not totally dependent on someone else – especially me. Knowing exactly what he can do is tricky because sometimes he can do things like button his shirt or cut his food, but sometimes he cannot do those tasks. To find out I usually encourage him to try to do most things. If I see that he has trouble, I’m happy to help, but if he can do it, albeit slowly or with a little difficulty, I really want him to do it for himself. Stan will usually tell me if he cannot do something, like his long time usual job of cleaning up the dishes after dinner. When he is able to do it he also tells me that and I leave him alone to do the job the best that he can – even if the kitchen is not as clean as I would like it to be.
I think this approach has helped Stan maintain his sense of self worth at a higher level than if I did everything for him. It also helps me feel that he is more of a partner and takes some responsibility for taking care of himself and our home – at least to the best of his capabilities at that time. I do not want to think of him as ‘sick’ and unable to help in any way or unable to care for himself. However, please know, that I am willing to help him in any way I can when it is necessary.
Family and friends, in their effort to help, often tend to do everything for Stan. He loves it and will definitely let them care for him in that way. It always makes me reflect on my philosophy but I am still hopeful that my approach allows him to retain more of his self-dignity. I know that I have to do what I think is best for him in a way that fits my own style.
I think each caregiver has to make decisions such as this on their own and not be intimidated or influenced by others who may do things differently. You and I must handle care giving in a way each of us is comfortable with. My bottom line is always, if they can do it, let them!
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.