Aiarden, that's sadly so true, and something I've never thought about.
I think there is much more needed education about dementia in general. But it needs to reach the general public more.
When I had my first son, rsv was going around, when I was pregnant, and tired , day time television had commercials about newborns and rsv. It was a good awareness, coming at the right time, that I may have not been aware of
Here's another aspect to this. Homeless people who have dementia. Maybe their families dumped them on the street to fend for themselves. Or they "wandered off" and the families never bothered to find them or report them missing. Which I learned earlier this year, at a national Dementia Zoom meeting from a presenter who had a lot to say about that and trying to manage/help homeless folks with dementia.
I wonder how many people go undiagnosed also. I think it depends if others are able to pick up on changes in behavior.
People used to use the expression ‘feebleminded’ to describe seniors.
Nowadays, we see commercials on television for meds that are prescribed for Alzheimer’s disease. We are more aware of dementia.
I wish doctors would bring this topic up more often with the family so that they would understand it better and recognize the symptoms of cognitive impairment.
Thank you so much, for your story, midkid. That's my world. I don't dare mention the D word to anyone in my family again.
It's my mom now, but went through this with my dad too. No one would believe me, just said that my father, was always mean and miserable. Yeah my dad had issues, but never like the issue he had latter in life. Even when my brother hid the guns in the house , he didn't see a problem with my dad's brain. He was 82 when he died, was a blessing that he had other health issues that took him.
Now 4 years later going through the same thing with my mom. Telling stories that never happened, but insist they did, shadowing, pretending she can't hear, what I'm saying, when I know it's that she can't understand, and loosing her filters .
And here I am all over again , knowing what's going on and no one will listen. Trying to explain to my brother to not yell at mom when she follows him around, is like talking to the dam wall.
Until the actual day before she died, my DH and his sibs denied that their mother had dementia.
She had to ne evaluated for the care level she needed, at the ALF. Ob stated that she was 'a 1, maybe a 2, requiring a little bit of help, but functioning well within her little bubble".
ALF does their own eval and she comes in at a hard 4+--actually requiring 24/7 care that the ALF did not provide. She only lived there for 8 days and she was never left alone. They were trying to find alternative housing for her, when she passed.
Having not seen, nor spoken to her for 4 years, I was shocked that OB felt she was barely needing help. From what I'd hear--she was totally checked out, mentally.
And sadly, I was right. The kids could not and did not ever accept that she had dementia. They'd say she was 'difficult' 'angry' 'fussy'--anything other than the terrible D word.
If they had accepted this dx, and the kind of care she required, instead of fighting with her and trying to make her change, or understand, would have made the last year of her life so much less awful.
They complained endlessly about how hard she was to deal with. But they never accepted the dementia dx--to my knowledge. Even when she died.
These are not stupid people, but had their heads in the sand so deeply, they couldn't see anything. It caused a ton of unnecessary stress and pain--if they had simply been able to say "Mom has dementia". It would have helped the rest of us to accept what we could not change.
That's exactly what I was thinking way, I agree it really doesn't matter, but I feel like family or others would treat them differently maybe more patients if the new and understood, cognitive decline, dementia, ECT...
I feel like there should be more education on the subject, but honestly the only people getting educated are the ones that truly care.
Ya know how these medical companies are shoving there commercials on you late at night. Your laying there half asleep watching a program. A commercial comes on , Do you have breast cancer, try this drug or that drug. And you find yourself checking for lumps.
I feel like more education is needed, and it needs to get out there to everyone.
Like the anti smoking commercial, that get so annoying, but have made a difference
My FIL had dementia but could still answer most of the Jeopardy questions as well. He was a walking encyclopedia who could not understand nor would allow his Depend be changed until he leaked terribly through his slacks or it was time to get dressed . He would insist he’s not wet and would only change his “ underwear” when dressing . He also rarely showered and would never have his hair washed . He just put hair gel in it everyday and combed it .
And although he had MoCA testing in AL and cognitive testing in the hospital and rehab he never had an official diagnosis of dementia listed on his medical records because we were told to take him to a neurologist for the official diagnosis . FIL refused to go after he had asked the test results of the test he had at his ALF . When he was told by the person who performed the MoCa that it revealed cognitive problems and would need to see a neurologist my FIL flipped out and told the guy that “ my brain is as good as ever “. FIL also told us he threw the guy out of his room . Even his primary said he had dementia but she would not put that in writing either . FIL never went to the neurologist , never was “ formally “ diagnosed .
Before FIL was placed in AL near us he was living in Florida, we hadn’t flown down to see him because of Covid , we had not been there for a couple of years . When DH went , his father had mail open and unopened stuffed in every drawer in his IL apartment , and mail 6 inches deep on every surface and mail in plastic grocery shopping bags on the floors . Pee stained clothes in his dresser drawers and hung up in the closet , mattress and couch stained . He was wearing Depends so on some level he knew he needed them .
He sounded fine on the phone during Covid , he could showtime really good , even with the doctors until later on . He had still been driving and had multiple dents in the car that he could not recall how they happened . DH turned the car in , it was a lease.
I would assume a fair amount are undiagnosed . Many refuse to have testing . In many cases it wouldn’t matter anyway , the behaviors are what they are , and they are treated as needed .
For a semi-dyslexic person, recalling the months in backwards order or counting backwards by 7s will be a giant fail 🙄 well that will be my EXCUSE anyway 😁
Is is undiagnosed dementia or just regular old fashion aging? My Dad couldn't remember to take his pills, but he could answer 90% of the questions on Jeopardy.
I read that executive functions begin to fail, on average, as much as a decade before diagnosis.
Of course, I think we all, as we age, notice the differences in ourselves if we are at all in to observation of self and close loved ones.
You certainly are right that we begin to question. And perhaps SHOULD. However, it is also true that aging aging brings with it such a feeling of fragility, and we self-question every time we misplace the keys. Also, anxiety can cause us to question ourselves, and can bring on symptoms that are--well--anxiety, and not dementia.
I have a problem even with some of the testing that is typically done. At one point I had to ask myself "can you spell Forum backwards" and it was difficult. Of course a few days of trying to spell backwards and I was a pro. All I can say is, before you go for the neuro-psyc test, practice spelling backwards!
I think there is much more needed education about dementia in general. But it needs to reach the general public more.
When I had my first son, rsv was going around, when I was pregnant, and tired , day time television had commercials about newborns and rsv. It was a good awareness, coming at the right time, that I may have not been aware of
People used to use the expression ‘feebleminded’ to describe seniors.
Nowadays, we see commercials on television for meds that are prescribed for Alzheimer’s disease. We are more aware of dementia.
I wish doctors would bring this topic up more often with the family so that they would understand it better and recognize the symptoms of cognitive impairment.
It's my mom now, but went through this with my dad too. No one would believe me, just said that my father, was always mean and miserable. Yeah my dad had issues, but never like the issue he had latter in life. Even when my brother hid the guns in the house , he didn't see a problem with my dad's brain. He was 82 when he died, was a blessing that he had other health issues that took him.
Now 4 years later going through the same thing with my mom. Telling stories that never happened, but insist they did, shadowing, pretending she can't hear, what I'm saying, when I know it's that she can't understand, and loosing her filters .
And here I am all over again , knowing what's going on and no one will listen. Trying to explain to my brother to not yell at mom when she follows him around, is like talking to the dam wall.
She had to ne evaluated for the care level she needed, at the ALF. Ob stated that she was 'a 1, maybe a 2, requiring a little bit of help, but functioning well within her little bubble".
ALF does their own eval and she comes in at a hard 4+--actually requiring 24/7 care that the ALF did not provide. She only lived there for 8 days and she was never left alone. They were trying to find alternative housing for her, when she passed.
Having not seen, nor spoken to her for 4 years, I was shocked that OB felt she was barely needing help. From what I'd hear--she was totally checked out, mentally.
And sadly, I was right. The kids could not and did not ever accept that she had dementia. They'd say she was 'difficult' 'angry' 'fussy'--anything other than the terrible D word.
If they had accepted this dx, and the kind of care she required, instead of fighting with her and trying to make her change, or understand, would have made the last year of her life so much less awful.
They complained endlessly about how hard she was to deal with. But they never accepted the dementia dx--to my knowledge. Even when she died.
These are not stupid people, but had their heads in the sand so deeply, they couldn't see anything. It caused a ton of unnecessary stress and pain--if they had simply been able to say "Mom has dementia". It would have helped the rest of us to accept what we could not change.
I feel like there should be more education on the subject, but honestly the only people getting educated are the ones that truly care.
Ya know how these medical companies are shoving there commercials on you late at night.
Your laying there half asleep watching a program. A commercial comes on , Do you have breast cancer, try this drug or that drug. And you find yourself checking for lumps.
I feel like more education is needed, and it needs to get out there to everyone.
Like the anti smoking commercial, that get so annoying, but have made a difference
Just a thought 🤔
And although he had MoCA testing in AL and cognitive testing in the hospital and rehab he never had an official diagnosis of dementia listed on his medical records because we were told to take him to a neurologist for the official diagnosis . FIL refused to go after he had asked the test results of the test he had at his ALF . When he was told by the person who performed the MoCa that it revealed cognitive problems and would need to see a neurologist my FIL flipped out and told the guy that “ my brain is as good as ever “. FIL also told us he threw the guy out of his room . Even his primary said he had dementia but she would not put that in writing either . FIL never went to the neurologist , never was “ formally “ diagnosed .
Before FIL was placed in AL near us he was living in Florida, we hadn’t flown down to see him because of Covid , we had not been there for a couple of years . When DH went , his father had mail open and unopened stuffed in every drawer in his IL apartment , and mail 6 inches deep on every surface and mail in plastic grocery shopping bags on the floors . Pee stained clothes in his dresser drawers and hung up in the closet , mattress and couch stained . He was wearing Depends so on some level he knew he needed them .
He sounded fine on the phone during Covid , he could showtime really good , even with the doctors until later on . He had still been driving and had multiple dents in the car that he could not recall how they happened . DH turned the car in , it was a lease.
I would assume a fair amount are undiagnosed . Many refuse to have testing . In many cases it wouldn’t matter anyway , the behaviors are what they are , and they are treated as needed .
Of course, I think we all, as we age, notice the differences in ourselves if we are at all in to observation of self and close loved ones.
You certainly are right that we begin to question. And perhaps SHOULD. However, it is also true that aging aging brings with it such a feeling of fragility, and we self-question every time we misplace the keys. Also, anxiety can cause us to question ourselves, and can bring on symptoms that are--well--anxiety, and not dementia.
I have a problem even with some of the testing that is typically done. At one point I had to ask myself "can you spell Forum backwards" and it was difficult. Of course a few days of trying to spell backwards and I was a pro. All I can say is, before you go for the neuro-psyc test, practice spelling backwards!