Communication has been important to me since Stan’s initial diagnosis of PD. He is not a frequent talker, but I am convinced that what has allowed us to deal well with Parkinson’s disease is that from the beginning, we have made an effort to communicate with each other about the disease – how he felt about it and how I have felt about its impact on both of us. The type of communication has taken many different forms from the beginning to his now more advanced stage 20 years later.
After Stan was diagnosed we did not talk a lot about the impact of the disease because it did not change out lives a lot for the first few years. I read as much as I could about it, but did not want to focus on or talk about what might occur in the future with PD. I took my cues from him and discussed what he wanted to talk about – whether it was details about the disease, his changing symptoms, what might have been early Parkinson signs we had noticed in the past, or perhaps what might have caused it. Stan was only 45 at diagnosis and his disease progressed very slowly. Changes were so gradual that we really did not notice until it was necessary to make a change because he was unable to do something. At those times we talked a lot about what was happening to him and ways to deal with it.
The one important message that I wanted Stan to really understand from the very beginning was that I loved him and would always be there for him. I would not abandon him, no matter what happened with the disease – I told him I might consider murder, but not abandonment!! I knew that if I had a serious illness I would be comforted by hearing this, so I talked to him daily about how we were going to deal with each change as it happened and that we were going to do it together. He would never have to deal with it alone. I believed then and I believe even more strongly now, that we both had Parkinson’s disease – just in different ways.
As the disease progressed our communication about the changes increased significantly. Stan got upset when his medication would not take effect quickly or when he could not do something he used to be able to do. Occasionally he got very depressed and cried about what he had lost. We would often cry together because it hurt me to see how vulnerable and dependent he was becoming. After a good cry we were able to focus on what we could still do together and what he was able to do. My emphasis was always that we still had a good life together and, with adjustments, we could still do almost everything we wanted to do. We continued to travel to Europe and around the US for vacations, attended cultural events, went out for dinner frequently and maintained most of our friendships and family relationships. It was still a great life and I really wanted him to know that I felt that way.
In the more advanced stage of the disease, our communication about PD has dropped off significantly. Stan’s memory problems sometimes create a real barrier in our conversations as he forgets thoughts in mid-sentence and can’t find the words he wants to use, but we continue to love each other very much. I tell him every day that I love him and he knows I have not murdered or abandoned him and I won’t. He feels like he can’t do anything he used to be able to do, but he is still able to give me what I need the most – he still loves me. This is a difficult stage for the caregiver because now the disease affects our lives greatly and we need to be able to talk about that. Support groups and good friends and family, if available, are invaluable right now.
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.