Does it surprise you to know that caregivers have very high rates of depression? Not me, because I’m sure I am one of them. My guess is that most of us have, are, or will experience depressive symptoms at some time. As the disease progresses we may be dealing with constant stress and anxiety over the needs and demands of this role for which we feel so unprepared; we watch the gradual diminishing of the loved one we knew in such a different way; we may become more socially isolated because of the increasing needs of our Parkinsonian loved one and the discomfort felt by some friends and family members; we see friends and others of our age enjoying the freedoms, companionship, good health and trips that we had always wanted or looked forward to. Isn’t that enough? I think depression is a not unexpected part of a very difficult role that we must play. How well we learn to deal with it can determine how much it impacts our life.
It’s really important for all of us to recognize signs of depression first:
- the inability to concentrate or make decisions
- lack of enthusiasm or enjoyment for doing what we used to like
- changes in eating or sleeping patterns
- loss of interest in being with other people
- feeling tired most of the time
- feeling inadequate or overwhelmed
- frequent crying and feelings of sadness for minor reasons
My feelings of depression have waxed and waned over the years. Each gradual change in the disease requires gradual changes on our part. Some of the adjustments have been easy to do, or with time, became easier. But some times the changes that we must make are very difficult and we are resistant. As an example, I have always been a very active, extremely independent person who needed a lot of privacy and personal space. Stan was pretty much the same and we respected and loved that in each other. By necessity, changes have had to be made over the years and my independence and need for personal space have had to be modified. That has been one of the most difficult things for me to deal with because it is so much a part of my basic nature. I know it has also been very hard for Stan, but he seems to have handled it better than I have.
The things that I have done to deal with my depression have really helped me – most of the time. The best thing I have done is to find Whittley, the aide/companion who does errands and drives Stan wherever he wants to go for several hours, three days a week. That has given me the space that I need and time to do whatever I want to do, but additionally creates more independence for Stan. I also try to attend an exercise class two or three times a week. Reaching out to maintain contact with my personal friends and our mutual friends and family has been critical. It gets harder to do, but is so important to communicate to help keep perspective on things and provide the rituals and normalcy that we had in the past.
Our Parkinson’s Support Group has been a wonderful source of comfort and support. These people live and know what we are dealing with and care about each other so much. It helps put our own problems in perspective and gives us a chance to help those who are new to this journey. As a member of our Support Group’s Executive Board, I spend considerable volunteer time at home and at the office that gives me another important purpose.
Don’t forget to laugh and make light of some of the daily happenings. Life with our loved one is too short and too precious to take everything too seriously. Each one of us knows which changes create the most difficulty for us. You would help yourself a great deal if you could identify them for yourself and try to find ways to retain those aspects of your life that you need the most. And if you need more help with handling the depression that we all have, one on one therapy and/or medication for depression are wonderful avenues to pursue. I have done all of these things and it has made a big difference.
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.