Living with Anosognosia — a lesser-known part of mental-type illnesses
I’m writing this to help someone who might be going through the same thing.
“Am I losing my mind?” he said, standing in the doorway of my bedroom.
The air in the room froze.
“I wouldn’t exactly put it that way,” I said.
I was lying on top of the covers, watching TV. Here is the moment I’d been wishing for. I thought if Bill could just accept what was happening it would get easier for us both.
“I’d say it was more of a brain thing than mind. Your brain is making your mind play tricks on you.” I propped myself up on one elbow to watch his reaction.
This was a no-turning-back moment.
“As I understand it, based on what they can see in your blood and spinal fluid and your eyes, it’s a brain thing.”
Was he ready to hear more?
“And that’s why I’m taking this medicine, this Namenda and Aricept? I don’t think it’s doing any good.”
He walked away.
Later, he collapsed beside me and curled himself into the fetal position. I reached out to touch him as though it was an ordinary Tuesday and we were watching NCIS together.
“I’m sorry things have turned out the way they have. I didn’t mean it to be this way,” he said. We had only been married for 18 months.
I heard myself gasp. I grabbed his thinning arm.
“Don’t even go there, Baby. Don’t even go there.”
Then denial set in
When I first suspected my truck-driving husband had Alzheimer’s, I hoped his problems with getting lost and not understanding written or spoken instructions were due to stress.
He retired early — a couple of months before his 65th birthday. He said that made matters worse.
The old saw, “For better or worse but not for lunch” became my reality.
Suddenly, everything was my fault. “If you would just leave me alone, I’d be fine.” It was as if he had puzzle pieces missing but did not know it.
Was it merely denial or has he become anosognosic? I had come across the word in my internet research, meaning “being unaware of illness or deficit.” Credit goes to Joseph Francois Babinski, a French neurologist, who coined the term in 1914:
Anosognosia differs from denial. Denial is a strategy used to reject something that a person wants to ignore or avoid because it is too difficult to face. Anosognosia, on the other hand,is being unaware of a decline in cognitive skills or even the ability to move. When severe, the person is unaware of himself to the point he stops bathing and changing clothes.
I had begged him to see a doctor, who recommended Aricept even before blood tests were run. Bill refused to take it but he agreed to an evaluation by a neurologist, which included an MRI, blood tests and a spinal tap.
Wonky genes showed up in his blood and spinal fluids. My fears were confirmed. It was early Alzheimer’s, they said, and prescribed Aricept, Namenda, and Seroquel.
Early diagnosis backfired. I did not know how dangerous those drugs can be.
I’m documenting this journey hoping someone will follow my bread trail and get help.
From the start, he seemed to go in and out of anosognosia. One day he blamed the medications for how awful he felt and said he was only taking them because I wouldn’t let him live in our house if he didn’t. The next day he might say, “I have Alzheimer’s and that’s why I have to take this medicine.”
But he didn’t have Alzheimer’s. Those doctors were wrong.
His degree of anosognosia seemed to vary from day to day and situation to situation. It was difficult to pinpoint when it was anosognosia or just acting out peculiarities.
He seemed genuinely unaware that he was not always processing written or spoken words, yet he could articulate his opinions clearly, which he did regularly and loudly, sometimes inappropriately to strangers.
For the most part, those opinions were right on target with what the rest of us were thinking but did not express because our filters were still in place.
He stopped listening to books on tape because he said he could not follow the plot, but he still enjoyed TV programs that are taped and display closed captioning. This is still true today. He rewinds as needed.
The good news is: today he still does not seem to have Alzheimer’s. He was misdiagnosed, which I wrote about previously. I told about how he suddenly went from sitting in his chair drooling to hiking and photographing waterfalls and rivers. Here is that story.What Happens After a Dementia Diagnosis?
How often do frightening misdiagnoses happen?medium.com
The bad news is: he still does not seem to have Alzheimer’s, which comes with established protocols and group support. They have not identified a specific type of cognitive impairment so we’re flying blind. Some days are good. Others are a hell-on-wheels-rollercoaster ride.
Some symptoms are similar
Unlike some Alzheimer’s patients who ask the same question repeatedly, he states the same opinion over and over, unaware that he just said that for the hundredth time. He seems unaware of verbalizing almost constantly, chattering to the dog, singing, recalling long-ago events, which he tells very well. His short-term memory is partially intact. He cannot remember appointments, but neither can I.
He considers it perfectly normal to be unable to tolerate a cup being moved, so he puts the dishes away. He does not want to open a cabinet and find new, unfamiliar objects or products, so he puts groceries away. Everything must remain where he placed it, or he gets annoyed, even angry. New things seem to frighten him. His world is shrinking to what he can hang on to from the past.
His taste in food has reverted to what he ate as a child. Only certain food combinations are tolerated, such as new potatoes with green beans. He will not eat green beans without the potatoes. And he specifically requests certain foods, which he never did before. He would eat what was served and enjoy it.
I’m sure there must be some battery of tests that could determine to what degree he is anosognosic, but I am just as sure he would never submit to them, nor would I want him to. The diagnostic process was a nightmare for him, so much so that when I asked him to describe it for this project, he refused, loudly, emphasizing how sick he is of being sick.
Meanwhile, I’m seeking support for myself.
There have been good days since his diagnosis, just not lately. Now I welcome peaceful moments, when we can both forget for a little while, and let things be as we thought they’d be when he retired.
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