I was a speaker at a Parkinson’s Disease Symposium recently and I found it to be a very interesting and enlightening experience. What I found enlightening is something I have been aware of because I have many PD caregiver friends – it’s the similarity in problems and feelings off all caregivers. Somehow the impact was different when complete strangers would ask a question or make a statement that really was in sync with what I feel or have experienced.
Parkinson’s disease has been referred to as a “designer disease” because it can be so different in different patients. Some patients have tremors, some do not; some people develop cognitive problems, some do not; some people have significant problems with the autonomic nervous system (constipation, swallowing, blood pressure, etc) and some do not; some have significant dyskinesia and some do not; some develop hallucinations or delusions and most do not. Some Parkinsonians do not tolerate a medication well and others take the same one with no problems. The disease progresses very slowly in some, but not in all patients. Some people develop it at a young age, but most are diagnosed when older. You get the idea!
However, the same is not true for caregivers. Caregivers seem to have similar problems universally, whether one is caring for a Parkinsonian, early or late in the disease, an Alzheimer patient, spinal cord injury, an MS patient or any other chronic long term disease or condition. The chronicity of these diseases creates the same types of problems in caregivers – stress, depression, anger, loneliness, frustration, less time for the things we want to do, etc. The ways of dealing with the stress of caregiving are also much the same for all caregivers – knowing yourself very well so you know what activities are essential for you to hang on to, learning to set priorities for yourself, maintaining your friends and social activities, taking care of your own health, carving out some private time for yourself, learning to be flexible and more patient, and developing a more positive attitude.
A 1999 study of Parkinson’s disease caregivers and caregivers of other chronic diseases at the California Caregiver Resource Center stated that PD caregivers are older, have been caring for their loved one for a longer period, are more likely to be caring for a spouse and have increased rates of depression, arthritis, asthma, diabetes, heart trouble and high blood pressure compared to other non- PD caregivers.
In 1997, the National Alliance for Caregiving estimated that nearly one out of every four households (23% or 22.4 million households) are involved in caregiving for persons over the age of 50. By the year 2007, the number of caregiving households in the US for persons age 50 or more could reach 39 million. There are a lot of us out there and the numbers obviously are growing significantly as the “baby boomers” age.
November is National Caregiver’s Month. We must be very special to have been recognized in this way. We know how our lives are changed, but it is nice to know that others also recognize that. If you are a patient, do something special for your caregiver (preferably something unexpected, to show how appreciative you are) and if you re a caregiver, do something very special for yourself and tell yourself you deserve whatever you can think of because you are doing what you have to do in a very difficult situation. I salute all of you.
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.