Sometimes when I sit down to write a caregiving column I have a very specific idea of the topic I want to write about. Sometimes I just start out by venting my feelings at the moment because they are on my mind. That’s what I am doing today. Life has been difficult lately, and this caregiver has been tired, frustrated, depressed and feeling very much alone in this journey. Sound familiar, anyone? I know we all have these feelings at times, no matter what stage of the disease we live with. It is a normal part of being a caregiver.

During these times we need to sit back, breathe deeply, relax if possible, and reinforce the fact that we are really doing the best that we can at that time We should also think about how we might make changes to improve the situation. A downward or negative change in our feelings can be caused by many things. It could be totally unrelated to Parkinson’s. It is often a sign that we need some time and distance from Parkinson’s disease for a little while. It can be a sign that our loved one is having a bad time and is unable to communicate that or even be a partner to us. Unfortunately when Stan has a bad time, it often seems to rub off on me. We tend to go up and down together on this roller coaster ride. However, I am going to try to get off and try to change the mood if I can.

How am I going to do that? I start by getting busy doing something I enjoy. It could be working with plants, doing a crossword puzzle, reading a book, shopping, baking, exercising, yoga, preparing for the holidays…anything to get my mind off of Parkinson’s disease. Once I am not thinking negatively about the situation and how I am feeling, I can more clearly look back and see what might have brought it on. In this case, lots of things were going on. I had knee surgery a few weeks ago, Stan just spent 6 days in the hospital with cellulitis, and I spent every day at the hospital with him, including Thanksgiving. It was not hard to figure out this time. Other times it is not so easy and more subtle incidents might have occurred to trigger a change in my feelings, i.e. hurt feelings caused by someone who does not live with a chronic disease, a feeling of being taken for granted by the Parkinsonian, having very little time for myself, or simply a bad nights sleep.

Understanding why we feel the way we do at the moment and trying to busy ourselves with something pleasurable seems to be vital to me. If we understand why it happens, maybe we can take some steps to change what might be causing it – even if it is as simple as getting a good night’s sleep, getting some respite for a few hours, or standing up for yourself when something unpleasant is said. Calling a good friend, in or out of the Parkinson community, who understands the situation can be extremely helpful. The chronic disease situation does not change very much but our attitude and feelings about it can vary immensely. Figuring out what triggered the change can often solve the immediate problem. It certainly did for me. I am feeling better and look forward to holidays. Maybe it was just putting my feelings into words and telling you how I felt. Thanks for listening!

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.

About the Author
Photo: Susan HamburgerSusan 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.
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