By J. F. Featherstone
According to the National Family Caregivers Association more than 26.6% of the adult population in the United States has provided care for a chronically ill, disabled or aged family member in the past year. Today, it’s not just women providing caregiving, men make up 44% of the caregiving population. Illnesses such as fibromyalgia, CFIDS, lupus, multiple sclerosis, Parkinson’s, and Alzheimer’s affect millions of people, leaving these people dependent on the help and support of a family caregiver. The challenges of living with a chronic illness are great… providing care to a chronically ill family member is equally challenging.
It started with a casual remark by Jack. He had been standing on the fourth rung of a tall ladder, painting the trim on the back porch of our home. When he climbed down and came into the house his puzzled expression indicated he had noticed something different: “I can’t feel the bottom of my feet,” he said.
It didn’t seem to me that this was anything to be particularly worried about. I pointed out that, as usual, he was doing work around the yard in a pair of Indian moccasins, soft soled, not likely to give much support. He was thirty-eight years old, chairman of the science department at an up-scale high school. He did the yard work, washed the car, tutored our children and was an attentive husband. In other words, life was normal and routine.
But then I remembered the time three years before when he pretended to watch football on television every weekend but actually was sleeping through the game. And when the yard went unattended for several weeks, I had to hire someone to come and do a big cleanup. Those times had passed and were forgotten. Could this be a new symptom?
It was another three years before the numbness in his feet progressed slowly up his legs. He was no longer able to work. The doctors finally decided on a diagnosis: a non-typical Multiple Sclerosis. My reaction? I was determined that nothing would change in the family. I could handle his illness, the children, the household, my job. You name it, I could do it! Surprise!!! No, I couldn’t.
The role of the caregiver is definitely not to become a super person. The caregiver gives the loving care they can, finds others who can assist, researches all the avenues available to the disabled person and implements and coordinates these activities. My first contact was with the American Red Cross who offered a course in homecare for people with MS. They provided me with information on re-structuring the home for the convenience of those in wheelchairs. They also put me in touch with the MS Society who installed grab bars in strategic areas and loaned us Hoyer lifts to assist with falls. But all this happened over forty-five years ago before the advocacy of the needs of disabled persons became a main stream topic. I was still working in the dark and feeling guilt about the things I couldn’t handle myself. So I kept on searching.
I found a support group for those caring for partners who had MS where we shared problems and sought solutions. I encouraged Jack’s parents to visit us for several days at a time which provided him with daytime company. I discovered that the Braille Institute provides “Talking Books” to sighted persons who cannot hold reading materials. These are delivered to the home for free through the U.S. Postal Service.
I learned that we both needed to continue our lives parallel, but separate at times. His good friend came on Sundays for lunch and football, which freed me to see a movie. He shared an interest in coin collecting with another friend, who took him to monthly meetings… as long as he was able to go. He was given telephoning tasks for our church, which kept him in touch with the members. He made lunch for our son who came home every noon from work to be with him. Best of all, our daughter gifted him with a great big puppy who grew into a great big dog and his constant companion.
As I look back at the journey we took as his illness progressed, the one thing that stayed constant was the love and respect each one of us in the family had for Jack. Not long before Jack could no longer fight off the disease that he had lived with for over 35 years, he told me that it was his families’ unconditional love that give him the strength and desire to fight for life as long as he could. I realized that as his caregiver I had provided the most important kind of care that a person can give … love.
Find Help – Caregiver Action Network
Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.