National Alzheimer’s Disease Awareness Month/Family Caregivers Month 2012

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month.

There are many terrible diseases, but Alzheimer’s Disease (AD) is different in that patients lose their memories and their personality. As the disease progresses, they may become very paranoid and believe that their caregivers are going to harm them. Rather than appreciating the care, they may become suspicious and combative.

Most people know that individuals with Alzheimer’s lose their short-term memory, but many  do not recognize that the disease affects the entire body. Alzheimer’s is always terminal.

Twice in my life I have been a caregiver for a loved one with Alzheimer’s. Along with several other family members, I helped care for my father, who died in 1995, seven years after being diagnosed with the disease. He had deteriorated to the point that he lay in bed, unable to communicate, to recognize his loved ones, or to control his bodily functions.

For the last couple of years, I have been caring for my husband Jack,  who had early signs of Alzheimer’s for several years before he was diagnosed in early 2010. His two biggest fears were that he would not know me and that he would end up in a nursing home. I promised him that I would care for him, and thanks be to God, I was able to honor that promise. He died of kidney failure before AD progressed to the point that he didn’t recognize me. He was in a nursing home for a week after being discharged from the hospital so changes could be made to our home, such as adding(a wheelchair ramp and replacing the king-size bed with a hospital bed, and we could arrange for round-the-clock caregiving help because he couldn’t even sit up by himself. We got a private room, and I was with him constantly while family and friends made the necessary arrangements to take him  home. He thought he was still in the hospital and  never knew he was in a nursing home. We took him home on Wednesday afternoon, and he died the following Sunday morning.

We were so blessed that I could care for Jack full-time. I set up a laptop in the den so I could work when he was watching TV or sleeping,  but whenever he needed anything or simply wanted company, I was there. In spite of the disease, we shared many precious times together during the last years of his life.

Alzheimer’s is becoming more and more common. The major risk factor is age—in the past, people didn’t live long enough to develop the disease. About half the people who reach the age of 80 will have Alzheimer’s. Every one of those individuals will need to be cared for, and most often caregivers are family members. Caregiving can be very stressful, both physically and emotionally. I can certainly attest to the fact that caregiving is challenging. However, I can also tell you from personal experience that caring for someone you love can be a blessing. Anticipating that the time would come that he wouldn’t be able to tell me—perhaps wouldn’t even remember or understand—Jack told me over and over again how much he loved me, and  I had the opportunity to tell him often with words and show him constantly with care how much I loved him.

If you know a caregiver for an Alzheimer’s patient, let them know you appreciate what they do. It  is not  easy. My sister,  Nancy Nicholson,  was so impacted by being one of our father’s caregivers that she returned to school to become a social worker. She is wonderful with Alzheimer’s patients and with their families. She has written a short little book of helpful advice for caregivers, especially those just beginning the caregiving journey. I highly recommend the book, and it would make a wonderful Christmas gift for a caregiver.

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