Photo by Jimmy Hemphill: flickr.com/photos/jimmah_v
Recently the Centers for Disease Control announced that Alzheimer’s disease is likely the 3rd leading cause of death for persons over 65, because it is underreported as a cause of death.
For example, a person may ultimately die from a stroke, caused by a blood clot following surgery to repair a broken hip, from a fall that occurred because of a balance problem caused by Alzheimer’s damage in the balance and coordination area of the brain. Or a person may die of heart problems caused by malnutrition, which in turn resulted from inability to swallow or just plain forgetting to eat. And that swallowing problem, that forgetting, was caused by Alzheimer’s brain damage.
OK, I’m with you there. But frankly I don’t see why we have to win this “biggest killer” argument at all. I suppose we need to win it because broad killing capacity is a big factor in decisions about where research funding goes.
But there are things worse than death. And in my opinion, the diminishment in quality of life due to dementia is one of them. The withering relationships, the slowly vanishing personality, the incessant loneliness of the caregiver, the fury of a confused mind, can build a prison for both those with dementia and their caregivers.
Isn’t quality of life as important as quantity? If so, which diseases are the leading “quality of life killers” for people over 65 in the United States? I think Alzheimer’s disease and other dementia disorders just might win that battle. It’s a battle no one wants to win.
I have led a dementia caregiver support group for twelve years now, and I have seen the devastation these conditions wreak on entire families.
· Caregivers’ health deteriorates from the constant stress, which only increases over time.
· Families go bankrupt trying to pay for care, because people with dementia often have few other health issues and live for a very long time, declining bit by bit, becoming increasingly dependent, until most caregivers have to surrender care to a full-time facility. These facilities cost $50,000 to $75,000 per year, not including medications. So many caregivers’ life savings evaporate by the time the person dies. There is little to no financial support available for these conditions.
One gentleman in our group whose wife had Alzheimer’s told me that his wife’s disease turned his value system upside down. He said that good news was really bad news to him. If his wife’s blood pressure was doing well, and her heart seemed healthy, it frightened him. He knew that if she was otherwise healthy she was headed for a long dependency and a lingering death she never would have chosen. He said Alzheimer’s was perhaps the only disease that made people pray that some other condition would come and shorten their loved one’s life.
You may find those comments brutal, but I think they are brutally honest. Many caregivers think and feel that way, at least at some point, but would never admit it.
I know I am being somewhat cynical here, but I keep remembering people who would say to me, “At least you still have your mother with you.” My mother had Lewy Body Dementia. At the time people were saying this to me, mom was calling me many times each day to tell me she hated me. She said she would never have treated her mother as I treated her – moving her to a care facility. She thought I had stolen her car and her house. She thought I had basically imprisoned her and wanted to control her and take advantage of her. So I ask you, did I really still have my mother with me?
People with dementia who were sweet and kind and generous before the disease can become aggressive and mean in their behavior as they decline. They don’t just lose their memory, in a functional sense they lose themselves.
Wives have to move their kind-hearted husbands into facilities long before they want to because they fear for their safety, or because they begin to fall regularly and the wife isn’t strong enough to lift them when they do. Children have to hear their parent beg to go home, over and over and over again, when the parent IS home. But they don’t recognize home any more, and they feel lost.
This is diminished quality of life as it manifests with dementia. And it can last a very long time.
I suppose I can’t change the basis used to allocate research funding, but I want to at least try to make a case for considering quality of life in those decisions. On that basis, research into Alzheimer’s and other dementia disorders could eventually be as well-funded as cancer and heart disease.
