For those who care for someone with Parkinson's disease

Parkinson's disease Caregiver Commentary

Give Me Patience - But I Need it Right Now
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.

During the course of any day, we as caregivers encounter many situations that require us to exercise more patience than we think we have. It might be as simple as waiting for our partners to finish a sentence, or changing our plans because their immediate medication status changes and they cannot move, or cleaning up food spilled on the table or dropped on the floor, or dealing with stubbornness when we try to get them to do something that we know is good for them, or making the necessary adjustments when we find they really cannot do something we think they should be able to do. Because I have always been hyperactive, patience has been a significant problem for me all of my life. So, how do I manage to find it when I really need it?

Learning patience has been an ongoing process for me - and I am still learning believe me! I envy people who seem to have a healthy supply of built-in patience. I wish it could be bottled or put into a pill for those of us who are in short supply. However, I think that we all, at times, get pushed to our own limits so much that we use up what we have, whether we have a lot of patience or not. So what is difficult for me to deal with might be easy for others, but we all have a point beyond which we can 'lose it' if we don't exercise control. Knowing what that point is important for each of us to identify, be cognizant of and make efforts to keep ourselves from reaching it.

In the earlier stages of Parkinson's, my built-in lack of patience did not create a problem beyond what was normal (for Stan and I). As the disease has progressed I have had to really think about my reactions to these difficult situations. I can tell you honestly that my report card is very mixed - sometimes being very successful and sometimes just feeling overwhelmed and unable to react in a rational patient manner. What makes the difference? I have spent a lot of time thinking about this and have concluded that my patience level is inversely correlated (remember, I am a recently retired statistician) with the stress and complexity of my own life - not how Stan is functioning. It does not seem to have anything to do with him specifically, what incident has happened, or even the progression of Parkinson's. If I have too much on my plate, I just have more trouble being patient with him. When I was working I realized that I could not do everything necessary to manage the household and exercise the patience I needed with his progressing illness. I reduced my working days to three and things improved (for me) for awhile. Soon, I found that the time had come when it was important for me to be with him more and also have time for what I needed to do (PD support group responsibilities, Condominium Board, etc). I am now fully retired and so far things are going well.

The most effective ways to improve my patience level have been to try to simplify our life as much as I can tolerate, remain very flexible in terms of my expectations and to make sure I have time for what I want to do. Hiring Whittley, Stan's aide/driver, for several hours three days a week has helped tremendously. If I am not stressed I feel that I can cope with almost anything. I love Stan very much and inside me I know that he is doing the best that he can. He usually will try to do what he can for himself. He does not do things purposely to annoy me or become more dependent on me. As hard as it is sometimes, I am the one who needs to control my reactions because I cannot control him or the disease. Sometimes it means walking away and not reacting and other times it means actively thinking about how to react. The impulsive negative reactions are greatly diminished when I can reduce the inner stress that I feel. It sounds simple when I write it, but it is a daily struggle for me and probably for all of us. We just have to keep doing the best we can do, and NEVER expect perfection from ourselves. Remember that we also are doing the best that we can sometimes.

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.

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