2007 "Give a Caregiver a Break" RUNNER-UP
"How I Do It"
My husband last got into his wheelchair on his own in July 2003. He can do almost no activities of daily living. When I tell people that my husband cannot get out of bed by himself, they ask, "How do you do it?" I say I have some help.
Here is how I do it. First, I had excellent role models from whom I learned how one should care for older relatives. My mother cared for her mother and my aunts. My husband and I cared for his mother and aunt. My mother-in-law cared for her mother. My father cared for my mother.
Second, my husband did not become disabled and bed-bound all at once. He told me it was hard for him to get up from a chair because his back hurt. So, I would bring him things he'd ask for. He later was diagnosed with pituitary adenoma, for which he had an operation and radiation. That caused a lifelong need for prednisone, which causes muscle weakness. The radiation causes multi infarct dementia, which is now in remission. In 1989, my husband had a back operation. He has sleep apnea. He got a wheelchair in 1998. In 2001, he had his first TIA, He then had a series of small strokes and became very weak, virtually overnight. He has macular degeneration, type 2 diabetes and osteoarthritis.
I learned to care for him one step at a time. I am like a mother animal protecting her baby. It is a natural instinct to try to get treatment for my husband's conditions and to care for him. He takes 23 medications per day. I measure his blood sugar and blood pressure twice per day. I give the insulin injection at night. I learned the medications, as they were added, one or two at a time.
I care for myself. I go to a monthly caregivers support group. I do water exercises in a therapy pool for my arthritis and for enjoyment. I went from full-time to part-time work, and am fortunate to have a flexible schedule and summers off. I go to a psychiatrist, and to a social worker and a psychologist for talk therapy. I have neck strain and have to cut back on hands-on care,
I found a personal trainer for my husband. I became an expert on what our insurance will pay for. I read everything I can about his conditions, using nih.gov. He just got a stent, and he just got gout. He is on a low-fat diabetic diet, and has lost over 100 pounds in the last year.
Our doctor said I am doing a marvelous job. Our cardiologist said it is amazing that he is still alive, which is due to insurance and my care. My sisters say I am very strong. The visiting nurse said I was as good as a nurse, and she didn't know how I did it. I said, "Well, I only have one patient."