Three Lessons from My Husband’s Descent into Dementia
Note: I’ve just discovered the link to this post does not work on phones unless you subscribe. So sorry about that. I have no idea how to fix this but I will look into it tomorrow.
For at least six years before his death, my husband suffered from dementia. Dementia, as I am sure you know, is the the general term for the many forms of mental decline of which Alzheimer’s is the best known example.
Before caring for my husband, I had thought of dementia as memory loss or perhaps a gradual regression to a childlike state. The condition turned out to be much more complicated than that.
I learned so much in those years. Here are three lessons about what it meant for the public life of the sufferer.
I write not as a trained medical professional but as the widow of someone who suffered from dementia.
My husband never recognised that he suffered from dementia
My husband never recognised he had a problem. An intelligent and forceful man, he had enjoyed a career first as a philosopher of science, then as a philosopher of law. He had no intention of giving up the activities he both loved and was good at. He continued to accept invitations to talk and to submit papers to journals long past the time he was capable of coherent argument.
If I suggested he had a problem or that he should seek medical help, I was met with a blank stare. If I suggested that it was in everyone’s best interest that he retire from intellectual life, the message fell on deaf ears.
Persuasion, then, went nowhere. Physical force was out of the question. All the while feeling I was betraying my husband, I was reduced to sending messages of apology and explanation to friends, acquaintances and even strangers.
My husband’s behavior was, it turned out, neither simply stubbornness, hubris, entitlement, nor denial.
Rather, my husband had a physiological condition that caused lack of self-awareness. Some part of the brain’s workings that normally recognises incapacity is simply not working, thus reinforcing any tendencies to denial. The technical term is anosognosia, a nurse eventually told me. It occurs with many different mental disabilities and has been recognised since the early 20th century.
So please don’t talk about those with dementia failing to face up to the condition. Please don’t get angry and try to get them to ‘accept reality.’ This is something they are incapable of doing.
My husband presented well, well into dementia
Well into dementia, my husband had the capacity to present well for short periods until he tired. This is apparently particularly true for individuals who are used to being in command of situations and communicating with others, particularly when dealing with familiar topics.
So in brief meetings with people my husband thought highly of, such as family members, colleagues, and doctors, he could appear to be his old self.
Thus even close family members did not realise the extent of his decline. Kind friends and colleagues encouraged his continued engagement with the academic world.
So please don’t dismiss the concerns of a spouse or a grown child by saying that the person they are caring for doesn’t seem to have anything the matter because they perform well in public. There may well be much that is the matter.
Neurologists could offer little guidance about dementia care
Now that I know more, I realise just what an impossible task neurologists have when dealing with patients with dementia. There are not enough neurologists to meet the demand. They work full days and still have six-month waiting lists. Biomarkers for dementia are still being studied. Diagnosis of different forms of dementia is difficult, if not impossible. Cures are not there. And caring has traditionally been the realm of families and nurses.
At the time, though, seeing a neurologist seemed to offer hope of help. By suggesting we both get checked, I finally persuaded my husband to see a neurologist. As a first step, he sent my husband for the usual round of tests to rule out conditions like sleep apnea or thyroid disfunction that might mimic early dementia.
Then came the visit for the diagnosis.
I handed the receptionist a list of my husband’s symptoms, asking that she pass it on to the neurologist. Whether he read it I do not know.
My husband aced all the simple preliminary memory tests administered by the nurse. He also presented well with the doctor.
The neurologist announced to us both that my husband suffered from mild cognitive impairment.
My husband heard the word ‘mild’ and naturally concluded nothing was wrong.
I heard the word ‘mild’ and gasped because by this point there was nothing mild about my husband’s symptoms.
The neurologist did not explain that mild cognitive impairment was a technical term introduced in the mid 1980s by Dr. Barry Reisberg, a psychiatrist at New York University. It is used for people who have symptoms sufficiently severe that they have a high likelihood of suffering dementia/Alzheimers. As I see it in layman’s terms, its a label that says “something is wrong but just what we have no idea.”
The neurologist prescribed Aricept saying it would do no harm and might delay the progress of whatever was going on.
That was it. We left the office with no further information or advice.
So please don’t think resort to neurologists will save the day. It won’t.
Covid to the rescue
Then three years after the visit to the neurologist came the Covid lockdown. My husband did not really understand what it was. He did grasp that it was not about him. And thus finally circumstances forced to draw back from public life.
Mild cognitive impairment was still the diagnosis when my husband died about two years later, though the hospice nurse wrote senile dementia on his death certificate.
Thank you for writing this. Insightful as usual. Each one of us will face a version of this. Heart-breaking, but necessary for me.
Thank you, Krish. I hope you won’t have to face this. It’s not universal.
Rachel, this is heart-rending, and so very pertinent to what we are going through right now, although you very graciously abstained from drawing any parallels. Thank you so much for the post and for the courage it must have taken to post it.
Thank you, Nancy.
I moved in with my father to help as he cared for my mother, who was slowly dying of Alzheimer’s, so I recognize this. One thing you didn’t mention, so perhaps you were spared (and I sincerely hope so), is that men suffering in the later stages often get paranoid, mean, profane, and violent, making it impossible for their physically weaker wives to care for them at home. This has happened to several of my friends. The wives have to institutionalize their husbands, leading to feelings of guilt and shame.
I am so sorry for you both, Rachel. I remember what a brilliant, urbane intellect he was. Such a sad and difficult passage.
Hi Chris, thanks for writing. Larry never became mean or violent so I was spared that. I do have lots more to say on the subject of caregiving for dementia but I wanted to keep this short and relevant to today’s situation.
You seem to be really enjoying your life in Texas (hoping I’ve identified you correctly!)
Dear Rachel – thank you for sharing this. I think the more we all know about this condition (not an appropriate term), the better. My recently deceased mother suffered from it, never faced up to it, and it was heartbreaking. It needs to be much more widely and publicly recognized. I found it interesting that recently the FT obituary of Glenys Kinnock did mention dementia, as usually it ain’t – which is not helpful at all. Feeling with you.
Dear Ursula, thanks for writing. Perhaps like my husband, your mother had anosognosia. If so, it was not a matter of not facing up to the condition but that brain was simply incapable of recognising the condition. In any case I agree with you that there needs to be more public awareness of what is involved. Political commentary at the moment in the US shows how ignorant many journalists and pundits are of even the most basic facts.
Dear Rachel,
What you describe is exactly what I recently experienced with my mother. She never would acknowledge her condition, although the register for checks in her checkbooks bore witness to it, as did the back left fender on her car. She denied it was her handwriting on checks or in the register. And she often passed as perfectly normal to those who did not spend a lot of time with her, including some family members. Until the end, she was determined to provce to the world that pre-Clovis man lived in Florida. Paranoia: check. Verbal abuse of caretaker: check. Denial: check. Very, very hard on some of the family. Death cerificate read Natural Causes, with underlying conditions (enumerated, including cognitive decline). I know what you’re talking about all too well. And I see this in our current situation here in the US – I have no idea hopw it will work out, but you’re right: “Political commentary at the moment in the US shows how ignorant many journalists and pundits are of even the most basic facts.” Not only that, many people in country simply are unaware of what the red flags are for this condition. Thank you for sharing.
But maybe denial is the wrong word. Larry simply did not have the capacity to understand his condition. Anyway it’s really hard for everyone concerned.
Maybe what I took for denial was actually anosognosia …
Thanks for sharing this important insight, Rachel. I will save this write-up for my daughter and my husband. I just turned 70 and the husband is 75. I wonder if Jill Biden herself is going through this?
Thanks Cecilia. I obviously am not privy to what’s going on in the Biden family. I have been shocked by the lack of knowledge among the commentariat about what dementia does and does not involve. This is obviously only part of it. Now I am started, I may write another couple of pieces on the subject.
Thank you, Rachel, for what must have been excruciatingly painful to revisit in memory. Thanks also for pointing out what is not being lucidly spelled out in the news media: There are many, perhaps innumerable, forms of dementia. Spouting dubious generalities and leaping to conclusions about any individual case is irresponsible. We’re not going to learn whether Biden is cognitively impaired by looking at a bunch of public appearances and a torrent of editorial speculation.
Exactly. And even experts may find it hard to come to definitive conclusions. The level of discussion in the media has been disappointing.
Thank you for this all too pertinent essay
Thanks Paul.
Since I live alone and have no one to closely observe my daily activities I sometimes worry how the hell will I know if I am beginning that dementia journey. Well, I’ll just have to cross that bridge when I come to it. But in the meantime I can say that as I age my sight is dimming just enough to make reading gray-black print on gray computer pages very difficult. Is there some way your web designer could darken the text so it is in sharper contrast to the background? I’ve had to ask this of quite a few online, and even print media, over the past little while. Thanks, and as always your essays are insightful.
Hi Leni, I doubt you’ll have to cross that bridge! My web designer is me which is why I am always screwing up. I’ll try to darken the print. Especially because I have a post coming for you on James Hutton
Of course, my greatest sadness is knowing that you went through this. My other sadness is that so little headway has been made in this field. My dad had Alzheimer’s and Parkinson’s disease, diagnosed in 1992. He knew something was wrong, but the gift of Alzheimer’s is you go in and out, and our last visit, he knew exactly who my brother and I were. We lost him in 2003. Mom had the age-related dementia, starting in roughly 2010 but not really diagnosed until 2017. With mom, she was certain she was fine. I asked the doctor what we could do, and she said “nothing.” But she began to “lose” people. Called me “dear,” as she knew I was somehoe important to her, but no idea who I was or what my name was. Lost her in 2021. But that’s 30 years. Does seem as though we should have learned something in that time. Anyway, my thoughts go out to you, as it is not easy losing someone you love, even when losing them is stretched out over years. Know my prayers are with you.
Thanks for the sympathy, Cynthia. I think what saved me was that caring was so demanding I had no time to reflect. That’s a feeling you know I am sure. Yes, thirty years and no progress in cure. And for those of us ground troops, no progress in care either. That’s something I really want to address. And good luck with the new book contract.
Dear Rachel, I don’t have adequate words to express my sympathy for what you went through. It echoes my experience with my father, which went on for 10 years. Awful. All of my elderly loved ones and my husband’s went through versions of what you write.
Thank you Juliet. And my sympathy to you and your husband for your struggles with your parents.
Thank you for this informative article. I did not know about anosognosia and it’s invaluable to me that you’ve shared your personal experience. Kind regards.
Thank you for your support.