early onset dementia and memory care

midge333

My wife is 69 years old and has early onset (56 years old) vascular dementia. I placed her in memory care early last month. Her biggest complaint is that all the residents are older and more impaired than she is. Most of the other residents are late 70s and early 80s. Some are in the very late stages but many are not. My wife's complaint about everyone else being more impaired than her is likely because of her anosognosia. Has anyone else heard this complaint from their spouses with early onset dementia?

harshedbuzz

@midge333

I think you nailed it when you ascribed it to anosognosia.

My dad always commented on how impaired and/or "crazy" the other residents were. He also complained about being surrounded by old people. He was 84 at the time but mentally was hanging out in the late 1970s. Lord only knows what he saw when he looked in the mirror.

HB

Belle

Not exactly the same situation but DH had a family member in their 70's who had alzheimer's and was in a local ALF. One day when I was visiting we were sitting in the cafe near the front door and residents were leaving with family members. Our LO's comment was that they enjoyed sitting there watching all the elderly people walk by. Everyone they were commenting on was around the same age as our LO. I think those type of comments are normal for someone with dementia no matter how young/old they may be.

fmb

My mother maintained that she "still had all her marbles" and that all the other residents in her ALF had dementia right up until she had to be transferred to the MCF. She has anosognosia and could showtime very convincingly.

Russinator

I agree - it sounds like anosognosia

Dio

The reality is that most dementia patients in a facility are not the Early Onset ones. My DH is the youngest in his facility. Too bad there aren't memory care facilities for younger patients. Interestingly, it's not my DH who complains but his friends who visit him about the disparity in age. My DH was 62 when placed. The cutoff age was 60…he barely qualified. The facility did not accept anyone younger than 60 for the very reason that care for a younger dementia patient is different from an elder one.

sandwichone123

My dh was placed shortly after his 60th birthday. At first he could only see "all those old people," but as he got to know individuals he was less focused on their outward appearance and more focused on who they were. I think he was still able to build relationships more effectively at that time than he might be able to now.

Dunno

My wife hasn’t mentioned the age difference, but at first, I was concerned that she might feel confused by it. However, I think the facility’s daily routine and the attention from the staff help her feel comfortable and secure. I should add that she’s well past early stage and likely in late stage 6. Hopefully this won’t be too much of a problem for your wife and this phase will pass soon 👍

GothicGremlin

My sister was 62 when I placed her in memory care and she had the same issue - everyone was much older than her. It bothered her for awhile, but as she acclimated, and then further declined, she stopped noticing the age difference. And later still, she referred to all of the female residents as "the girls." None of those "girls" were any younger than 70.

MN Chickadee

My mom had early onset and we moved her to memory care when she was about 70. She also looked younger than that; her body was in great shape, she was active and she never got gray hair so she really stood out in the facility. She complained about all the "old people" a lot at first. I think in her mind she was much younger than 70. But with time she adjusted and seemed to forget about it, or not notice. We said she was there to get stronger, like rehab, and could leave when the doctor cleared her. Not making it seem permanent helped with the transition and eventually she forgot all these details and it just became her home. Hopefully with time your wife adjusts and stops complaining about this. A month isn't real long in terms of the adjustment so give it time.

midge333

Thanks everyone for sharing your experiences. I do think that my DW thinks she is much younger than she is. She appears to have lost the last decade

GB62

https://alzconnected.org/discussion/71741/early-onset-dementia-and-memory-care

Yes, I hear this as well. My husband was diagnosed (delayed!!!) at age 64. I placed him in memory care in June of this year and, he too, is still in denial that he has any symptoms of his disease. Most residents are in their 70’s and 80’s, which makes sense as only 5% of AD diagnoses are “early onset”, but it makes for extra challenges.

gsaverin

https://alzconnected.org/discussion/71741/early-onset-dementia-and-memory-care

I am a soon to be 60 year old man diagnosed with early onset dementia. In an effort to delay the progression I am taking various meds and play memory games and cards. I pray that my situation does not lead to my wife having to deal with and take care of a caring husband, to having to take care of a husband who is out of his mind to the point where she has to care for me 24/7. I do not want to be placed in a facility. If I lose my mind complete, I prefer to go home to be with the Lord instead. This is not just a feeling; this is reality for me. Instead of becoming such an extreme burden to my wife, I prefer to die! I'll be in the best hands that way; and she can live the rest of her life in peace without me as burden, slowly killing her with her trying to care for me,, who has absolutely no idea about who I am and what I am doing.

Thanks for allowing me to share this intimate moment.

H1235

My mom often comments on the other residents and their bad memory or need for wheelchair. She is a solid stage 4 with memory not being her biggest issue (judgment, planning, organizing). She is very caring and tolerant of the other residents and has made some friends, but she believes she is in the very early stages and doesn’t belong in a facility. She has said more than once, I hope I never get that bad. She doesn’t realize the alternative is that she passes away, because her symptoms are going to get worse. It heartbreaking.

sandwichone123

I think it's common for people diagnosed with dementia to want to die rather than be a burden on others, but there is no legal way for that to happen. Even in states with "right to die" laws, these laws do not apply to dementia diagnoses.

Timmyd

https://alzconnected.org/discussion/comment/256390#Comment_256390

My DW is early onset and is now entering the later stages at age 60. There are many circumstances in life for which language is not sufficient for expressing the complexities of the condition. This is not how I would have ever chosen to spend these years of my life. It is often quite difficult, isolating, and lonely. Having said that, the opportunity to provide care for DW during her journey is a privilege for which I will be eternally grateful.

some quotes I saved along the way:

"If we only value each other when we are at our most able then the world becomes quite a bleak place"

"Lean in on life! Learn to be very present. Silence the voice in your head and be here now. None of us are getting out of here alive."

Timmyd

https://alzconnected.org/discussion/comment/256408#Comment_256408

I am not an expert on the law but I believe this may be allowable in Canada and several European countries. I believe there was a case a few years ago of an American with EO ALZ going to Switzerland and legally being allowed Medical assistance in dying.

Karen711

Timmyd- yes, as told in the book In Love: A Memoir of Love and Loss by Amy Bloom.
Why on earth is Alzheimer’s (and other forms) not considered a terminal illness was in this country???

harshedbuzz

https://alzconnected.org/discussion/comment/256550#Comment_256550

The reason is because a PWD would not likely have the capacity to make such a decision when the time came. Additionally, they might be very vulnerable to coercion.

A person who develops dementia might not feel the same way about wanting to end their life as they did prior, especially if that person had anosognosia and no awareness of the severity of their condition.

My father was always one of those folks who was "Team Pull-the-Plug" (his words) and yet by mid-stage dementia when asked on admission to a SNF for post-hospitalization rehab elected to be a "full code". His mother had done the same.

HB

Timmyd

https://alzconnected.org/discussion/comment/256551#Comment_256551

There are all sorts of advanced directives one is allowed to make for which we do not have the capacity to confirm when the time comes. However those usually involves things we want not done to us in our state of decline.

Just as a side note. I have seen the daily decline of DW go from vibrant high functioning adult to early stage 6. I have not seen anything yet that would make me want to end the journey early if I were afflicted. I feel her life is still worth living and I am convinced she feels the same. We will see what the future brings….

GothicGremlin

Timmy, it's interesting that you say that…

I saw the same things with my sister - vibrant and high functioning to …. not. She was in earlier (but not early) stage 7 when she passed away last year at age 64 (she was diagnosed just shy of age 59).

She was always a "make lemonade out of lemons" kind of girl, and I respected that. She was clear what she wanted and didn't want in terms of her care. She drew the line at feeding tubes, but otherwise she wanted as much done as possible. And I strove to do that for her. I'm positive that at least until late stage 6 she would have said that life is worth living, in spite of everything she went through.

I have peace of mind in how I cared for her, and I think a big reason for that is that in the very beginning I sat down with her and went over everything I knew at the time. I asked her what she wanted me to do. It was a very tough discussion to have, but I think having that frank discussion early on means you don't have to second guess your LO or yourself later on.

harshedbuzz

@Timmyd

That's an interesting perspective.

Perhaps the individual's presentation and personality play into this somewhat. When dad was diagnosed dementia, I found myself in a dementia-bubble. It wasn't just dad, two of mom's sisters, my dear friend's mom and another family friend patriarch were all living with mid-stage dementia. It really drove home the old adage if you've seen one person with dementia, you've seen one person with dementia.

My aunt was always bright and good natured and spent 60 years as the object of her doting husband's affection. Even after his death when she had to go into MC rather than stay in the beachfront cottage where she's first seen her husband, she remained sunny and positive. She was quite content in MC. She'd lost so much and yet was happy and engaged up until the final weeks. Even her delusions were lovely— I once visited and she explained that she was living in the married student housing at Rutgers after the war and that her DH wasn't there because he was with the reserves. My friend's mom was very much the same. She'd been the matriarch of a good-sized extended family and leaned into others doing for her. She basked in the very attention that triggered dad's worst.

Dad, in contrast, was a different kind of person. He'd been raised by wolves basically, and basically brought himself, and his 2 younger sibs, up. Self-determination defined who he was. The loss of that autonomy was difficult for him. He once told me that he was not just miserable but hellbent on making sure my mom was as well. In a similar vein, the family friend's dad, a scientist who'd been well respected and called the shots at home and in his career, went so far as to refuse to complete a POA which forced his sons into guardianship.

HB

elainechem

I never had to place my hubby with EOAD, but his father had AD at the same time as my hubby. Dad was in assisted living. He complained that all the other residents were so old. He was 92 at the time. It was hilarious. Anosognosia at work!

midge333

https://alzconnected.org/discussion/comment/256592#Comment_256592

@Timmyd, your comment points to the importance of having difficult discussions with our loved ones early in the course of their disease so we can best act for them when they no longer have the cognitive capacity to act for themselves. Everybody looks at end of life differently. Personally, I see very little worth living for once a person reaches stage 6. Others will have a different opinion.