Nearly 15 million people in the United States take care of a loved one with Alzheimer's disease or another form of dementia, amounting to 17 billion hours or more than $202 billion in unpaid care, Alzheimer's experts said on Tuesday.
If these caregivers all lived in one U.S. state, it would be the nation's fifth largest, according to the Alzheimer's Association's 2011 annual report on the disease.
The report illustrates the growing burden of Alzheimer's disease, a fatal brain-wasting disease that erodes memory, thinking, behavior and the ability to handle daily activities.
My great-grandmother lived about 15 years with Alzheimer's. With her the whole time was my grandmother, an RN who worked tirelessly taking care of her mom while trying to hold down her job, eventually providing round-the-clock care. During that time my great-grandmother went from being a vivacious woman with a wonderful sense of humour to barely responsive. It was painful watching that happen. But it must have been excruciating for a daughter to watch her mother do this; my grandmother had much longer memories of her mother than I did.
When my great-grandmother died, my grandmother was ill and had to lie down at the funeral home. It turned out she had lung cancer. She outlived her mother by not quite two years. Determined to not burden anyone with her care, she placed herself in the same nursing facility she had worked in. I visited her weekly, while going to school full-time and working, and did what I could, but I wasn't really her caregiver.
I firmly believe that while my grandmother's illness was caused by a lifetime of smoking, her rapid decline had to do with being worn down from all the years of caring for her mother, both in terms of the physical and mental toll.
And it's not just Alzheimer's, although I think that may be one of the hardest illnesses to care for someone with. My mother is now caring for my grandmother round the clock on weekends and all but 8 hours a day in the week. She's a nurse, and she's the only child that is nearby, so it has devolved to her to take care of her mom.
What will happen to my mother's generation, the Baby Boomers, who are so large in numbers but who had quite smaller families themselves? My mother is in her early 60s. Unlike my grandmother and my mother, I'm not a nurse. I don't know the first thing about caring for someone. So I worry about what might happen. But I'm her only child, and it would be my responsibility. I would do what I can.
And sometimes, just sometimes, I worry about my own future. I don't have children. I'll probably wind up in some care home somewhere. and my best friend will probably put me in footed pyjamas, which I despise.. And I worry about Alzheimer's. I already have memory and at times it seems, cognition issues, probably secondary to the diabetes and my attention deficit disorder. I worry about being a burden on someone. I worry about not having anyone to care for me. I worry about slipping away like my great-grandmother did.
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