What Support Group Can Provide for Alzheimer Families

September 17, 2007

A moving story of a woman thrust into the role of care­giver. It is the story of a woman, perhaps like you, who came home one day from the doctor’s office after learning that her life would soon become very different, but without much understanding of what to expect.Mrs. Smythia and her family experienced the anger, frustration, and fears that most Alzheimer families face, but this particular family mobilized their strong feelings and put them into action. As a result of their efforts, in combination with other dedicated families in their community, a dynamic support group developed where none had existed before. This chapter not only provides inspiration, but also important ideas on how a support group can benefit its members.

At the age of thirty-two, I became a victim of Alzheimer’s disease. My husband and our three children-then aged five, two, and six months­also became victims. No, we were not diagnosed as having the disease, but my husband’s mother, Margaret, was. We became her caregivers, and we were to become victims as much as she. Our lives were drastically changed the day my mother-in-law came to live with us. I will tell the story of how we became caregivers, not because our story is unique, but because it is so common. What happened to us and the emotions we felt have happened to millions of other caregivers. I hope that a better understanding of these circumstances will underscore the need for support groups and support services to help Alzheimer families cope with their situations.

We had known there was something wrong with Mom for a long time. In the beginning, she also realized that something terrible was happening. At the time of their respective deaths, Margaret’s mother and grandmother had both suffered from senile dementia. Mom feared that she, too, was becoming senile. She talked to her husband and to us about it; she even discussed it with her doctor. None of us knew anything about Alzheimer’s disease. We told Mom not to worry. After all, she was a healthy woman in her fifties who had watched her diet. How could she possibly have “hardening of the arteries”? So Mom worried, and we reassured. But after a while, she stopped worrying. In fact, she denied being forgetful when she clearly was. That is when we began to worry.

At the time of this crisis, Mom lived 400 miles from us and was married to a very nice but older man. Both had been widowed and had married more for companionship than for love. Now, however, Mom was not a very good companion, and her husband was not able to carry her responsibilities as well as his own. He let us know that he wanted Margaret to live with us. He was making plans to leave her. Within a week, Mom had moved into our three-bedroom home. Soon after the move, Mom and Dad were divorced. It was not long thereafter that Mom was diagnosed as having Alzheimer’s disease.

Becoming a parent to a parent is one of life’s saddest and most difficult experiences. It is even more traumatic when the parent has Alzheimer’s disease. Mom grieved so much after she came to live with us. She could not fully comprehend what was happening. Nor could she understand why her husband had rejected her and had wanted a divorce. She didn’t want to live with us; she wanted to be in her own home, in her own church, with her own friends. She rejected our efforts to help her. A very proud and independent woman, she resented being taken away from her home. Day after day we explained why she was living with us. Day after day she cried, longing to go home.

I also grieved. I longed for the simple, uncomplicated life our family had enjoyed before becoming caregivers. I cried. I cried for what was happening to my sweet mother-in-law and for how I felt having to tell her time after time that she could not go home. I cried from the feeling of not having any control over my life. Alzheimer’s disease had taken over my own life and had destroyed my freedom. I cried for the future. For the first time I realized what Mom would become and what our future as caregivers would become. The greatest unspeakable fear concerned my husband and my children. Since Alzheimer’s disease tended to develop in his family, would he become a victim too? I would look at my three beautiful children, so full of life and so bright, and wonder if their lives would end in a mindless state of dementia. It was as if a monster lived in our future, waiting to devour the people I loved more than life itself. How could I be certain that a cure would be found in time? I couldn’t.

After weeks of carrying these burdens, I decided I could no longer continue along this path of self-pity and depression. I knew that if I was to survive, I would have to fight back. I had read about support groups, but there were none in our area, nor did I know another person who might be interested in a support group. But I knew there must be others like myself who needed to talk to someone who was also a caregiver. I had been frustrated by the lack of readily available information about the disease. Perhaps a group of caregivers could share information. After thoroughly discussing the possibilities with my husband, we decided to start our own support group. It was the first positive step we had taken since our family had become caregivers. For the first time, we felt that something good could come from our misfortune, something that would bring meaning to our struggle against this disease.

Posted in Alzhemier Disease