If a family member has Parkinson's disease (PD), you will want to do your best to help him. Your heart goes out to him. You watch him suffer, and it kills you to do so. You learn all you can about PD. You take the initiative in arranging the house to suit his needs. You sacrifice your interests so that he can maintain his. You work 24 hours a day to provide for his needs. Meanwhile, the rest of the world’s affairs do not stop. The rest of your pressing obligations do not stop. Despite all of your hard work, you must nevertheless watch him decline steadily over the years. No one applauds you for your self-sacrifice, and at times, even he seems unappreciative. It is a bitter pill to swallow. You need to find a way to cope. Here are some tips on how to do so:
First understand that you are not alone. Remember that there are more than 1 million persons with PD in the United States alone. Most of these individuals are cared for by family members for most of the duration of the illness. Many of these family members have joined support groups for caregivers of persons with PD. Perhaps you should consider a support group as well. Find a support group near you by searching here and here … or start up a group yourself. Check back here for tips on how to start and run such a group.
You are also not alone in terms of the TIME you put into caregiving. Families, NOT doctors or nurses or hospitals, provide 80% to 90% of the care received by community-dwelling chronically ill persons. National surveys of randomly selected families find that 80% of caregivers provide unpaid assistance to chronically ill family members 7 days a week and spend an average of 4 hours per day on caregiving tasks.
Every caregiver of a person with PD needs to learn to take better care of themselves. Many studies of families who care for chronically ill family members find elevated levels of depressive symptoms in caregivers. This is no surprise. You could have told this to the scientists who conducted those studies right? What is surprising, though, is that most caregivers do not get help for the depression. This is unfortunate, as depression can be effectively treated with antidepressants, cognitive-behavioral therapy or other forms of psychotherapy. You say you have no time or money to go to therapy. OK, fair enough, but consider this, you can go for 2 or 3 visits -- enough time to learn some cognitive-behavioral techniques to combat the depressive symptoms or figure out which antidepressant would work best for you. Consider also that combating depression would be good not only for you but also for your family members, including the patient.
Source:
Julie H. Carter, Barbara J. Stewart, Patricia G. Archbold; Family Caregiving. In: Parkinson’s Disease: Diagnosis and Clinical Management: Second Edition Edited by Stewart A Factor, DO and William J Weiner, MD. 2008 Demos Medical Publishing
