variable awareness of own illness in the early stages

blues

I am reaching out to those caring for a spouse in the early stages, or who remember doing so.  Apologies for the long post.  

Jennifer Ghent-Fuller's "Understanding the dementia experience" includes a section on "Insight", where she differentiates two extremes... (1) the person with intact ability to have insight into their own behavior (who is able to discuss the disease, and may grieve as they grapple with their diagnosis) vs. (2) the person whose ability to have insight into the disease has been destroyed by the disease (who does not recognize that anything is wrong (anosognosia), and is unable to rationally recognize that something is happening to themselves).  In my case, I find my husband neither in one place or the other. I am curious if others have experienced something similar. 

My husband does not deny he has AD. He occasionally volunteers that he has a poor memory, and if someone were to ask him why he is participating in a clinical trial, he would tell them that it is related to his diagnosis of AD. In our daily chatter, he acknowledges needing help with things at times. But in many other respects, I get the feeling that being a PWD is not really on his mind. For example, before a visit to the neurologist, I asked him to consider how he was coping with the disease, as the doctor was likely to ask him about this. His immediately reply was "what disease?", which I found surprising (he was dx over 6 years ago). It was not a belligerent reply... he just sounded as if he had no idea what I was talking about, or didn't consider that he had a disease.  Or another example: he received an email from a very old friend, but they hadn't communicated in about a decade. It's a friendly "how's it going" kind of email. My husband responded, mentioned that he is no longer working, and the weirdness of the covid pandemic, but said nothing about his health. The friend does not know about the diagnosis (this is clear from his email if nothing else). I feel certain that the friend is close enough (plus he's a retired nurse) that my husband's not mentioning the illness would not be an issue of shame or stigma. Perhaps, however, he is not able to put himself into the frame of reference of his friend, and realize his friend is unaware of his diagnosis. 

Bottom line: it seems to me that some people are capable of 'admitting' that they have AD (and the challenges associated with it), but they don't dwell on that thought and learn to keep it distant, which seems like a clearly self-protective response. They do not let that admission be anywhere front and center in their mindset. Have others experienced anything similar? 

I have to add that I think it is great for him not to ponder his health state and all the challenges that go with it (for himself and for others). And I don't particularly want to bring his attention around to the hard facts either. It also makes his experience very very different from mine as his caregiver, as I can never put it out of my mind. 

Paris20

My husband has had anasognosia from the very beginning. His diagnosis was in 2015. He will die without knowing what happened to him. However, several thoughts come to my mind after reading your post. First, as your husband’s condition worsens, awareness of his condition deteriorates. What he knew on his first day of diagnosis is not what he knows today. AD is not a straight line. 

Remember, too, that total awareness and total anasognosia are two extremes. It’s possible that many people fall in between. Besides, nothing in AD is static. Symptoms appear. Some take hold for quite some time while others are a one-off or a symptom that you won’t see for months. Another issue is shame. Whether your husband actually forgot his diagnosis or was ashamed to admit it are possibilities in his email response. In our society, dementia has all sorts of negative associations. I don’t know if any of my random thoughts help but writing to us is always a good idea.

Rick4407

My DW slowly lost awareness of her lapses over the first year.  After that every 3-4 months for the next year she would have moments of complete clarity about her condition.  An hour later no awareness.  We had several very difficult conversations about her losses and where she was headed.   That period of occasional awareness last about a year or 15 months.  During the last 3-4 years she had had total anosognosia, she is oblivious.  She is now 6 years into VD with ALZ and is well into stage 6.  

My only positive thought is that her being oblivious to her losses is a very merciful thing for her.   Rick  

Joydean

 I don’t know the answer. My husband says there is nothing wrong with him. He is not sick. But when he tries to tell me something and can’t get his words, he gets very frustrated and ask me why can’t he say what ever it is. Something is wrong, it’s all that medicine you give me. Blaming the medicine is his new reason. But he has no problems with me doing everything for him and running the house and everything else. In 2019 when he became suicidal and had to spend a week in a mental facility he thought he was in jail. Could not understand what he had done that was bad enough to go to jail. 

So bottom line he has no ideal what is wrong with him and I will never tell him. Most of the time he is content, but it never leaves my mind. 

M1

II think it does fluctuate Blues. My partner could never admit in early stages that there was a problem, she was furious if I brought it up, and angry all the time as she became more and more frustrated. Interestingly now, she is more aware that there's a problem at times, but less angry and more sad. Other times she's still oblivious. Ditto with her lymphoma, she forgets she has it. I agree that it's a mercy to her to not realize how advanced she is.

Ed1937

Joydean wrote:

he has no ideal what is wrong with him and I will never tell him. 

Kudos to you. What good could come of it?

Ed1937

M1 wrote:

I think it does fluctuate Blues. 

I've seen that said before. I think that's more common in early or middle stages. But when it is active, it is a win for the PWD, even though it makes caregiving harder.

PlentyQuiet

DH is in the very early stages, and is fully aware of his diagnosis. It's not the information he greets people with, but he will tell most people within a few minutes of conversation if it comes up. Mostly he preemptively tells so that they understand his word finding and slightly circular conversation. 

However, we are currently on a trip to visit with his brother and he has no idea why I am not letting him drive an unfamiliar rental car, in an unfamiliar city, at night on the highway. 

He knows what he has and how it will go, but doesn't quite see all the day to day things that he misses. 

harshedbuzz

blues-

My dad was diagnosed fairly late in the game (2016); I noticed personality changes in 2005 and significant memory issues in 2008. My parents, and then later my mom, blew off my concerns about dad's memory and reasoning skills until she almost died on his watch.

I am certain he had a sense that his memory wasn't all that it had been as he initially explained it away as "a normal part of the aging process". I get a sense he was aware of the memory piece but completely oblivious to the losses around executive function and higher order thinking.

I also feel that he felt threatened early on by me. His CPA shared as much with me. He'd suggested dad do some estate planning and POAs and dad told him I "would put him in a home and steal his house". I made the rookie mistake of sharing my concerns with them both initially after which dad behaved in a manner that was so offensive that most family stopped visiting them. I used to make the trip solo- 3 1/2 by car in the summer and 3 hours by plane over the winter to keep an eye on things. I couldn't pay my husband, son or nieces to come along as he was so ghastly. He could showtime like it was his job, but over the course of a couple days-especially in the evenings- he was very insulting even as the disease progressed. 

When he was finally diagnosed with mixed dementia, both the neurologist in the hospital and the one he was assigned at the Memory Center told him the diagnosis as he had mixed dementia with one an alcohol-related WKS that required behavior modifications to treatment/improvement of symptoms. He "knew" on one level as it was the reason he lost his driving privileges but the global impact was lost on him. He often told us he'd had a dream in his sleep where he got all his memories back but of course he didn't. 

For a time in the middle stages, his anosognosia kind of came and went. Some days he thought he was just fine because his memory came back in a dream and others he'd acknowledge some memory loss over unimportant things.  Over time, anosognosia became his normal which was easier on all of us. 

HB

David J

When my wife was forced to retire at 52 because of multiple mistakes and poor decision making, she was angry, embarrassed, and felt she was forced out for political reasons. Even after getting a diagnosis of MCI, she still claimed “they stole my job”.  She knew something was wrong, and let me take her to neurologists and other specialists to try and find out what was wrong with her. She was on SSD and private long term disability, but she thought she could still work. When she got the dementia diagnosis, she was scared, and kept asking me if I thought she was “demented”.  For over a year she was on a dual track of  understanding that she had dementia, and insisting she could still work.  During this time we continued to try to put a name on this disease. Many tests and scans and doctor visits. She always cooperated, because she knew something was wrong.  She insisted that I should not tell anyone about her condition, even as it became more obvious to even casual observers. She gave up her drivers license, then later insisted she could still drive well. This period of contradictory behaviors lasted several years.  As her cognitive ability decreased, her knowledge of her condition decreased, but so did her attempts at normal activities. By the time we got a diagnosis of AD, she could not understand what that meant. She is now in the MCF with no knowledge of her condition and no memory of her previous life.  

CStrope

My DH denied anything was wrong with him for several years before diagnosis, and like a dutiful wife, I believed him.  It has been 18 months since actual diagnosis, but almost 4 years since the first Dr. suggested an MRI. His atrophy is mostly on the left side of his brain, so his language and reasoning is greatly affected.  For a long time after diagnosis, I thought he had anasognosia, but then one day in Target he purchased a Scientific American publication on Alzheimer's.  He said he wanted to better understand what was happening.  He was a high school Anatomy teacher for over 25 years, so the interest was there.  But then most days when he can't form a sentence, or he struggles to remember things, he'll say that it is due to aging.....everybody forgets things as they get older!  (he is 67).  When I mentioned that the doctor had scheduled a check-in appointment to renew his meds, he said "why, I think I'm doing really good".

So......there is a part of him that does know he has Alzheimer's, but I think between anasognosia and his inability and need to not accept what is happening, we kind of live in a grey area.  There have been a few different occasions when I've tried to bring up topics like choices for late term care, funeral desires, even possible bucket list ideas, but he always just gets furious and won't talk about those topics.

DJnAZ

I noticed my wife having difficulty with words and reasoning almost three years ago. It may be coincidental, but two years ago when the covid pandemic news broke, her speech and reasoning got worse. Then in November 2019 our 17-year old dog died and her slide down the slippery dementia slope really accelerated. A year ago she was officially diagnosed with MCI that according to her doctor is closer to Moderate impairment now.

As recently as 45 minutes before I started typing this post she said, "...I am just fine, my fine is good". That response came after she had been obsessing and finally indicated (with a jumbled, rambling sentence that really did not make sense) it was time to put the trash out. Without scolding or harshly correcting her mistake, I told her today is Sunday and the trash goes out tomorrow, Monday. She looked very confused but kind of nodded and then with no prompting from me stated she was fine.

She has been and continues to be adamant that nothing is wrong. Not only has this been going on since I first noticed she had cognitive issues, her denial is becoming much more frequent. Her neurologist said she definitely has anasognosia.

It is so sad watching what is happening to her.

JoseyWales

My DH seems to be one of the few that knew something was wrong a long time before he was finally diagnosed. He was the one that searched for a diagnosis. It took us YEARS.

Once diagnosed, he'd tell people. He'd share the diagnosis with just about anyone he met. Shortly after he was finally diagnosed, he forgot what his diagnosis was called. So he'd tell people that he had a memory problem, but couldn't remember what it was called. Then he'd turn and ask me or our son. With my dark humor, I found that funny.

A couple of years after his diagnosis, he no longer realized he had a problem. He had just lost the ability to compare himself to what he used to be like, or what others are like. It wasn't denial at all, he just no longer had that ability to know he had a problem.

blues

Thanks all for your reflections, especially those of you who are dealing with more difficult later stages who took the time to write. It is good to be reminded that things change from one day/moment to the next in terms of a PWD's cognition. So for those who are capable of awareness at an early stage of the illness, that awareness can come and go for some time, before it is (mercifully) completely lost later on. 

OrganizerBecky

I wonder if, when we mention a "disease," they don't understand it to mean their dementia. When thinking of a disease, we're more likely to first think of a physical ailment like heart disease, cancer, etc. Just a thought.