I know fear must be a common component of caregiving. There are so many unknowns that we face in dealing with a chronic disease. We don’t know what the future holds for our loved one and ourselves, nor do we know how things will be in one year, five years, or at any time in the future. Parkinson’s Disease is so different in different people that we can’t really predict the course of the disease. Those unknowns can cause feelings of anxiety, helplessness and certainly fear of what might lie ahead.
For years Stan and I have had discussions about dealing with necessary changes when they arose and not ‘worrying about’ or anticipating what might happen in the future. There was almost nothing I could do about it and obviously did not know what the course of my husbands’ disease would be. I was pretty successful for a while because I am not generally a ‘worrier’. But there are many of us who are, by nature, people who tend to worry. That would make the job of caregiving an even more difficult task and require a stronger focus away from the future. If possible, and as something to strive for, we are better off just taking each day as it comes, trying to remain flexible and not thinking about the future. For twenty years this approach has worked for me, but as the disease progresses I find it almost impossible not to think about what might happen next. Does the fact that Stan can’t do something one day mean that he will no longer be able to do it? How will I care for him if something happens to my health? What will our life be like in five years?
There are long-range concerns that can be frightening to caregivers, but over the years I have found myself actually worrying more about daily occurrences. Stan used to like to go out for short walks by himself to the bank or post office. I wanted him to be independent when he could and I did not stop him, but I worried about something happening to him until the minute he walked back into the door. I was very glad to see his smiling face and see his body in one piece when he returned. He can no longer go out by himself but I still worry about him falling in the house when he forgets to use the Rollator walker. As his balance becomes more impaired, my anxiety about preventing falls increases. I think about him getting up at night, un-medicated and unable to move well, and wonder how long he will be able to do that without having something happen. Will I have to get up two or three times a night with him? Will I be able to effectively handle everything in the house when I am older?
Instead of all of this worrying it would be helpful to take some action to deal with the anxiety that worrying creates. For example, Stan is beginning to have a problem driving his battery-operated scooter down the hallway to the bedroom and we have many gouges and scrapes on the woodwork already. I have contacted someone to remove the moldings around the doors and try to widen the hallway in some way. I am working on getting Stan to use the walker all of the time to eliminate or at least minimize the number of falls he has. I’m trying to create a safe and pleasant environment for Stan, but I’m also trying to minimize my fears about something happening to him. I’m sure there are steps that you can take to relieve some of the fears that you experience.
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.