Denial in the Face of Dementia

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When I was working actively as a physician, my patients rarely came to me with symptoms of early cognitive impairment. In fact, I cannot think of a single one. Family members occasionally brought in their loved ones when the dementia was more advanced, though.

I remember Joseph, for instance, who brought his wife and told me that there was “something wrong with mama.” Anyone had only to take a brief look at mama to know that she was pretty much out of it. Perhaps, I thought at the time, mama’s day-to-day changes had been so imperceptible that Joseph just had not noticed. This is possible, but I now doubt it. At her stage in the illness, I cannot imagine a husband not noticing.

I was aware of my symptoms several years before other people would have noticed. True, I did not have it checked out by a neurologist for a while, either. But I noticed the changes right away and asked my wife Marja, my daughters, and a couple of other friends about it. If they had mentioned anything, I would certainly have followed up with a doctor sooner.

Are other people not aware of their cognitive changes? If not, why not? Marja and one or two others have suggested that my previously high IQ made the losses apparent to me before others could become aware. But that seems unlikely. I see no reason why memory loss and confusion should be more noticeable to people with high IQs than to others.

None of us want to hear bad news, of course. People with cancer symptoms put off seeing doctors, too. But the reluctance to find out more about cognitive decline seems so much stronger. We humans have amazing denial mechanisms, but why are they almost universally so powerful in the face of Alzheimer’s and dementia? It is shame and fear, I suspect; shame so strong that one cannot bear to entertain the possibility of isolation. This feeling is so overwhelming that telling others—even our closest friends and family—terrifies us.

Whatever the cause, the failure to share only deepens the shame, intensifies the loss, refuses the love and comfort of human understanding, and smothers the chance to express the many levels of goodbyes that are so necessary throughout the course of this disease. It only exacerbates the isolation.

There is a real price to silence. If this blog brings only one person out of the closet about their diagnosis, I think it will have been well worth it.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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9 Comments

God bless and grace you for your courage and wisdom. I noticed the decline in my hubby. I begged him to go to the dr. He would not. I turned to his son and cousin to assist in getting him to the dr. They told me that I was delusional. When he did finally go a couple of years later he and they blamed me for his illness. Insane I know but maladaptive thinking is everywhere. I lost my hubby years before his death to these twisted thinking. Advances in medical treatment and support is needed fir patient and caregiver alike. Please come forward.
It depends on each individual circumstance. My husband had graduate school education and had a vast vocabulary. He functioned very well verbally and when he lost enough vocabulary that he was having trouble expressing himself I realized something was wrong but he was in denial probably out of pride or fear or both. For awhile his coping mechanism was to try to make a joke out of his not remembering a name or date or fact, but when it became evident that he was forgetting how to tell me things, he would speak out in annoyance and accuse me of pretending to not know what he was talking about. All of this happened at the same time that he began having trouble seeing at night--cataracts and he became irritable, and he seemed to be needy and not wanting me to go anywhere without him. So I called the family doc to alert her to this privately so that she could assess things when she was examining him. She either didn't get the message or forgot herself. So a few weeks later he had to go in for a follow up and that time I talked to her privately before she went in to see him. She gave him a cognitive test and she suggested that he go see a doctor at an Alz Center. So we did that. He failed the test and it so rattled him that he refused to return to the Alz Center, which BTW was in a University hospital area--hard to get to and a nightmare to find parking. That was 3 years ago. He died last week. He declined exceptionally quickly. It was a nightmare for both of us. I know I will miss him but he is so much better off in Heaven.
My mother has had her vascular dementia DX for 7 years or so. She, to this day, denies that there is anything wrong with her except that she's an old lady. I was her main day to day care giver. My son , who is disabled, developed some serious kidney issues and I had to devote my time to him. My brother increased Mom's Home Instead Care, but not enough. Because I dared to bring up moving her to a facility where she would have 24/7 care and supervision, she got very angry with me. My brother, who is her POA, was all set to get her to move. I had found a wonderful place. When he found out he had to fill out the paperwork instead of me, it was no go and he and my sister shut me out. I tried to see my Mom but she wouldn't talk to me. She has/had help 5 days a week, but after dinner time, she was alone all night until about 10 AM the next morning. And, she is alone except for a couple of hours the whole weekend - alone. If she falls she has no concept of how to get herself up without cues and prompts (she falls quite a bit). She cannot hang a tee shirt on a hanger. That is where she was at when I last saw her. The denial by her and my siblings will get her hurt. Or worse. If anything happens it's on them. But I still worry because I am the only one who was strong enough to do what was best for Mom.