The longer I am a caregiver, the more I realize that it’s very important to understand yourself and what your needs are – what satisfies you – what kinds of behaviors make you angry – what makes you happy and thus more patient? Why is this important and why should we be thinking about ourselves and not trying to better understand the person who actually has the disease? I have said it many times that I think caregivers also ‘have’ Parkinson’s Disease – but in a very different way. We are in this journey together and anything that can make things better for both of us is worthwhile pursuing.
As Stan and I have reached each progressive stage of the disease, many things have changed – expectations, time spent in helping with daily activities, involvement in social interactions and activities, the ability to make plans, the need to modify physical surroundings, communication with each other, and many more things that we can all think of. These types of changes are not always easy to deal with and obviously some are easier than others. For example, I personally found it very easy to move to a house(condominium) on one level, but some people might find it extremely difficult to move and give up their home of many years. If they understand that about themselves, then perhaps modifications could be made to the existing house so you can stay there. This helps prevent feelings of anger and resentment for having to move and satisfies the needs of both partners.
I know that at times I need personal space and time alone and that is sometimes very hard to find as a caregiver. Fortunately, I am able to employ someone for a few hours several times a week to allow me to have time to myself. If that is not a possibility, perhaps there is a friend, relative, volunteer from church, or neighbor who might be willing to stay with the Parkinsonian to allow you to have personal time. You have to know how important it is to you and then look for a solution to find that for yourself. If it is important and you do not do something about it, you are again left with feelings of anger, resentment, frustration, etc.
I know very well that because of my own independent nature, I sometimes have difficulty with Stan’s increasing dependence on me, emotionally and physically. That is what I am dealing with right now and I am searching for some satisfying answers for both of us by trying different things. The emotional dependence is less difficult to deal with because I love him very much and I understand why he is changing in this way. I will always be there for him emotionally and I am working on some solutions for the physical dependence.
There may be some of you who like to spend time at a club or church meeting, or meet friends for shopping or lunch. It is up to you to know how important those things are to you personally so you can then find a solution. You should not give up the things you really enjoy. That is not good for either one of you and your resentment will only grow. Take some time to think about what things are very important for you to keep in your life and seek a way to do it.
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.