The New York Times recently had another article on Alzheimer’s. The article covers efforts underway to develop methods of detecting Alzheimer’s earlier, and treat or possibly cure it. From a scientific perspective what the researchers are investigating is interesting. But sprinkled in with all the information about the progress of research are the personal stories of people suffering with Alzheimer’s and that was of more immediate interest to me.
About the progression or suffering of Alzheimer’s, the article told me nothing new (though perhaps some of you will find those aspects educational) but did remind me of things that I find depressing. Phrases like, “It raises the possibility for me that this is a genetic disorder that starts early in life,” are only grim statements which confirm my own thoughts. The common reaction, at least of people not closely associated with those suffering from Alzheimer’s is that the disease is one which comes on fairly suddenly in old age. But, as it is said in the article, “Researchers think that the brain, like other vital organs, has a huge reserve capacity that can, at least for a time, hide the fact that a disease is steadily destroying it.” I think that for decades before a person begins to show very noticeable impairment from Alzheimer’s they are actually suffering from an unnoticed cognitive decline. Again, quoting the article:
If Dr. Mayeux asks family members when a patient’s memory problem began, they almost always say it started a year and a half before. If he then asks when was the last time they thought the patient’s memory was perfectly normal, many reply that the patient never really had a great memory.
For everyone aging brings on a less flexible mind, and some people have greater difficulty learning or understanding certain things–all without developing Alzheimer’s later in life. But are there signs of Alzheimer’s that reach back into middle age, and even youth? I find myself struck by how the mental frustrations and difficulties of my Dad and Uncle Kevin are a very eerie shadow of the progressive weakening in Grandpa which brought him to the place he is at now. Dad and Kevin have difficulty learning new things, are easily upset by change, and easily confused and overwhelmed. One part of me wants to simply attribute such thing to their long-standing personalities and the fact that they both are simply starting to approach sixty–so what can you expect? But what comes first, the chicken or the egg? Perhaps even in early youth amyloid plaque was beginning to build up in their brains and though their brains’ reserve capacity compensated in their young adult years, nonetheless their minds felt a strain in coping with things other people did not, and so their personalities developed an aversion to those things which so inexplicably strained them. Only now is the reserve of their brain capacity starting to fail so that both my Dad and Kevin are beginning to develop what almost seem like pathological aversions and inabilities to deal with certain things.
Then I look at myself and also wonder. I have a very pronounced tendency to forget words, and a failure to articulate properly. Further, I realized recently that my penchant for using a wrong word, (sometimes completely wrong, sometimes just not quite the right word), or a slightly weird turn of a phrase–for which I am rather famous for spontaneously producing at our house. All of this is because when I am going along in the conversation I grasp from some verbal thing–whether it be a word or some colloquial phrase–and I can’t quite get it, so I just keep going and spit out something that feels about right.
The results can be quite funny, or embarrassing, sometimes, especially the more involved or animated I am in the conversation as mangled phrases and incorrectly used words begin to pile up and lend a rather surreal air. And does it really mean anything? Not all of us are great conversationalists. Just because we might accidentally say, “Lick the cake and eat it too” when we meant to say, “Have the cake and eat it too” or use the wrong word when using a slightly unusual word, does it mean that all such people will end up with Alzheimer’s?
No it doesn’t. There can be many, many causes of verbal clumsiness. And it may be that whatever is the root of my verbal mis-fires has nothing to do with the genetic disposition to Alzheimer’s in the Purdy blood. But I did find it very striking that Grandpa’s verbal failures could have such a resemblance to mine–forgetting a word, substituting, inserting a wrong word, or turning odd phrases. Of course Grandpa has declined much in the space of a year, and I am still who I am. I don’t think my slight speech difficulty is a sign that I will be crippled from Alzheimer’s in ten years. But is it a benign manifestation in my youth of something that will slowly become worse until at the age of seventy I am sitting on the couch babbling nonsense?
Maybe. I don’t think anything is as straight-forward in life as any of us might imagine, and it is easy to over-simplify life, but in reading about Alzheimer’s, and seeing how it has progressed in someone else, does make you wonder.
Such thoughts can be grim and depressing in an abstract contemplative sort of way, but the little tid-bits of personal stories struck me in a emotionally immediate sort of way. Now more than ever I could see Grandpa very close to those people in the end stages of Alzheimer’s and it was all the more awful to read things like,
Her mother, 78, is in a nursing home in the advanced stages of dementia, helpless and barely responsive.
“She’s in her own private purgatory,” Ms. Kerley said.
Patients’ agitation and hallucinations often drive relatives and nursing homes to resort to additional, powerful drugs approved for other diseases like schizophrenia, drugs that can deepen the oblivion and cause severe side effects like diabetes, stroke and movement disorders.
The disease is named for Alois Alzheimer, a German doctor who first described it in Auguste D., a 51-year-old patient he saw in 1901. Her memory, speech and comprehension were failing, and she suffered from hallucinations and paranoid delusions that her husband was unfaithful. Unable to finish writing her own name, she told Alzheimer, “I have lost myself.”
She died in 1906, “completely apathetic,” curled up in a fetal position and “in spite of all the care and attention,” suffering from bedsores, Alzheimer wrote.
A century later, patients still die in much the same way. Although Alzheimer’s itself can kill by shutting down vital brain functions, infections usually end things first — pneumonia, bladder infections, sepsis from bedsores.
Ms. Latshaw, whose dementia was diagnosed in 1991, has not spoken in four years, and she can no longer smile. But she locks eyes with visitors and will not let go.
“There is still something alive in there,” said her sister, Fritzie Hess, 69. “I’m convinced of it.”
The family believes that, at least some of the time, she still understands them. They speak to her as if she does. She is with them, and yet gone, and they miss her terribly.
In an interview in the summer of 2006, Ms. Kerley described her mother this way: “She’s completely withdrawn in herself. She hasn’t recognized us for a few years. Basically she hums one line of one song over and over again. She seems to be stuck somewhere in her life between age 4 and 5.”
Ms. Kerley said she and her son Michael, then 21, visited every week or two.
“She loves getting her back rubbed, being smiled at, being hugged,” Ms. Kerley said. “She doesn’t know who we are. We’re going for us, not for her, because she doesn’t remember us the minute we walk out the door.”
Such vignettes are awful beyond words especially as I see Grandpa spiraling before my very eyes to the place where “He love getting his back rubbed, being smiled at, being hugged. He doesn’t know who we are, because he doesn’t remember us the minute we walk out the door.”
Perhaps most troubling for me was the words, “A century later, patients still die in much the same way. Although Alzheimer’s itself can kill by shutting down vital brain functions, infections usually end things first — pneumonia, bladder infections, sepsis from bedsores.” To a person remote for the task of tending an Alzheimer’s patient this information means little. To me, any one of those listed deaths read as a failure in care. The abstract logical part of my mind said you can give the best care possible any someone might contract and die from pneumonia, bladder infection, or sepsis from a bedsore. But in that little paragraph I felt I had seen a brief glimpse into the future, and in that future I saw myself struggling to accept the fact that I was not capable of preventing those things, and that they had happened was not a testament to the failure in my care.
If you wake up one morning to find someone dead from a heart attack or stroke you might feel sorry, but there was nothing you could do. Such death is swift. But sepsis from a bedsore–if you are the caregiver what guilt will you feel from that. Even if advanced age and paper-thin skin means bedsores are almost inevitable, how easy is it really to shake a sense of responsibility?
I can only say, “God give me the grace.”
It is very worthwhile to read the entire article, as it gives both a general understanding of Alzheimer’s and also educates on where the direction of treatment appears to be headed.
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