Do you ever get angry? As caregivers, I think we all get angry at times and I believe that it’s okay. ‘Anger is a signal and one that is worth listening to. Our anger can be a message that we are being hurt, that our rights are being violated, that our needs and wants are not being adequately met, or simply that something is not right. Our anger may tell us that we are not addressing an important emotional issue in our lives, or that too much of our self – our beliefs, values, desires, or ambitions – is being compromised… Our anger may be a signal that we are doing more and giving more than we can comfortably do or give.** I think that each one of us has experienced all or some of these feelings/issues, whether or not we are dealing with a chronic illness in our loved ones – and then add the illness and its being such a major part our lives, aren’t those same issues being compounded? Anger is not right or wrong, meaningful nor pointless, it simply is! Anger is something we feel. It exists for a reason and it deserves our respect and attention.
Stan and I recently spent 10 days in Wyoming visiting a friend of 30 years, whose wife had recently died from lung cancer. He talked about his wife, saying that whoever would have thought such a young, bright, vibrant person with whom he had planned to grow old and had wanted to do so many things together, would be taken from him. It wasn’t fair and he said it made him angry! I listened and thought to myself that I could almost say the same thing, except my husband is still alive. We did not ask for, want, deserve, or expect to be caregivers or have Parkinson’s Disease be part of our lives when we thought about our dreams and fantasies about how we wanted our future life to be. We could be angry about the steady loss of our loved one’s abilities, our increasing responsibility to keep our homes and families running smoothly, the callousness of some physicians and the many politicians who ban the medical research that might result in a cure for PD, the gradual falling away of some friends or family whom we thought we could depend on, etc. We could be very angry, but I personally cannot live my life in a state of anger. Finding ways to deal with our anger is essential.
I have found that support group membership is very helpful in dealing with anger. Information, socializing with people in similar situations, helping those who are new to the journey, and admiring the courage of those at the later stage of the journey help to focus on different aspects of dealing with PD. We talk, laugh, learn, hug, and cry over life with PD – and that is empowering.
Becoming a partner in the treatment of Parkinson’s seems to give me some feelings of control in a seemingly uncontrollable situation. I know ways to maximize Stan’s functioning through gathering as much information as I can and working closely with his Neurologist to understand the medications and their functions.
I am learning to be a flexible person. There are times when Stan is just not able to do what I would like or expect him to do, or going somewhere is not possible without a great deal of stress for both of us, or he needs help just when I am doing something important for myself – I’m sure we have all had these times. I am learning what is important for us and trying to plan ahead a little better.
I really work at getting and staying involved in other activities such as active exercise in Aerobics classes or riding my bike, continuing working on a hobby, enjoying the Internet, participating in our Condominium Board of Directors, and a leadership role in our local Parkinson’s Disease Chapter. I try to keep up with my friends and not feel like my whole life revolves around this disease.
I have hired a man of Stan’s age to serve as an aide/driver for him. Whittley comes for several hours three days a week to allow me more flexibility (a short break from the 24/7 responsibility) but also to give Stan the feeling of being able to make decisions about what he does and where he goes. He is not totally dependent on me to do all of his errands and that is empowering for both of us.
Over the years I have been politically active and engaged in the grassroots lobbying on Capitol Hill to help raise awareness of the toll on people’s lives that PD takes, and to ask for support for legislation that is vital for finding the cure for PD.
And most important of all, communication with Stan and maintaining my sense of humor have been the most valuable in helping me control my anger. Do I still get angry sometimes? Of course I do, and I absolutely do not feel guilty about it.
** Lerner, Harriet G, The Dance of Anger, Harper & Row Publishers, New York, 1985.
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.