The first thing we noticed was the odd repetition of the same story. For a year my dad talked about the mediocrity of cafeterias in this country, a quirky account that became more bizarre the more he told it. He retired from the food business, owning a popular restaurant in Charleston, so his fixation seemed understandable, if eccentric.
Then my mother died and things went rapidly downhill. The normal overwhelming adjustment for widowers, my siblings and I thought, but in retrospect we realized that our father was already suffering from dementia and that my mother had been his corrective, reminding him to eat and take his medications, things that without her he failed to do.
Making sure dad got to doctors and engaged in sufficient self-care became more difficult. He stopped socializing with his golf buddies, wore the same dirty outfit day after day, and lost some of his teeth. Always stubborn, my dad refused to consider the idea of assisted living or even senior housing.
“My memories are here,” he said, looking around the living room at the photographs covering the walls. We realized that he meant it literally as well as figuratively, that remembering was becoming a serious struggle.
For the past two years we’ve been able to keep dad in his home with a fulltime live-in caretaker, but her retirement left us scrambling to find other arrangements. After an exhaustive search we found a highly accredited graduated care facility close to relatives. Three weeks ago we moved him in.
On one hand getting him into a safe place with good care is a relief. On the other hand, making the decision for him instead of with him – treating a fiercely proud, independent man like a dependent child – feels like a betrayal of sorts.
Although there are several types of dementia, the odds are that my father is suffering from Alzheimer’s disease. It’s is the most common form of dementia, affecting more than five million Americans. According to the Alzheimer’s Association, of the ten leading causes of death, Alzheimer’s is the only one without a prevention or cure. It is the 6th leading cause of death for Americans. Ironically, between 2000 and 2010 the death rate for Alzheimer’s increased 68 percent even as the prevalence of other illnesses, including heart disease, fell.
Although genetic mutations may make some people more susceptible, researchers believe the disease is caused by a multitude of factors, including environment and age. Autopsies of patients show characteristic amyloid plaques, neurofibrillary tangles, and a breakdown between neurons in their brains, though no one is certain why or how these changes occur.
What is certain is that as the population grows older, the number of people diagnosed with Alzheimer’s will increase, as will the financial toll and the emotional burden on caregivers.
For now the diagnosis is dire, but researchers are moving forward on finding the causes and possible treatments. Cholinesterase inhibitors can slow the progression in about half of all patients by six months to a year. Just this past week researchers published a study about a drug that stops the disease in mice with the genetic mutation leading to the same sort of brain pathology seen in human sufferers.
Until we have a cure, however, caring for our loved ones with dignity and compassion is the main focus.
One of the biggest surprises in caring for my dad has been how the entire family is affected. My siblings and I don’t always agree on the best course of care nor are we able to share in the caretaking equally. When my dad has good days, we breathe a collective sigh of relief and keep our fingers crossed that his sunny mood will continue. When he has bad days, we second-guess our decision to move him from the home where he lived for 50 years and feel guilty about causing him stress.
Now when we forget something – a computer password, a bank pin number, someone’s name – we also wonder if this is normal aging or the first signs that we, too, are starting to slip.
We know that eventually we will slip out of our father’s mind as well, becoming strangers to the man who carried us around as babies, who bought us so many Christmas gifts that they wouldn’t all fit under the tree. We struggle to hold on to those memories for him, reciting our stories and watching his eyes light up as he tells us things from the distant past where the ravages of time and disease haven’t yet followed. It’s a respite of sorts, a temporary oasis, and we’re glad to have it.
Guest columnist Kay McSpadden is a high school English teacher in York, S.C., and author of “Notes from a Classroom: Reflections on Teaching.” Write her at firstname.lastname@example.org.
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