Dementia Dementia Discussion

[Scepticalscribe]

Almost two years ago (just before midnight, on December 21st, 2018) my mother passed away, at home, surrounded by her three children, my two brothers and I, as we held her hand.

She had had dementia for at least a decade prior to that - though this wasn't formally diagnosed for a while, as her falls were initially thought to have been on account of vertigo, or Meniere's disease, and were treated accordingly, rather than an expression of the mini-strokes that she had, which was a feature of her condition (vascular dementia).

I recall our utter horror - commingled with appalled compassion, for my mother was a woman with a fierce, creative, enquiring, questioning intelligence, and dementia robs both mind and memory, and, at its worst, can also destroy character - when she was diagnosed initially; I also remember - etched eternally on my mind - the challenges of providing care for someone with a condition where the trajectory is one-way, and the outcome inevitable.

Anyway, I merely thought to start this thread to allow for a space where dementia, issues related to dementia, stories of loved ones who have had dementia, caring for people with dementia, allowing carers to vent - and offering suggestions as to how they can begin to cope - can be discussed and aired.

 

[Eric]

Almost two years ago (just before midnight, on December 21st, 2018) my mother passed away, at home, surrounded by her three children, my two brothers and I, as we held her hand.

She had had dementia for at least a decade prior to that - though this wasn't formally diagnosed for a while, as her falls were initially thought to have been on account of vertigo, or Meniere's disease, and were treated accordingly.

I recall our utter horror - commingled with appalled compassion, for my mother was a woman with a fierce, creative, enquiring, questioning intelligence, and dementia robs both mind and memory, and, at its worst, can also destroy character - when she was diagnosed initially; I also remember - etched eternal on my mind - the challenges of providing care for someone with a condition where the trajectory is one-way, and the outcome inevitable.

Anyway, I merely thought to start this thread to allow for a space where issues related to dementia, caring for people with dementia, allowing carers to vent - and offering suggestions as to how they can begin to cope - can be discussed and aired.

My father was never officially diagnosed with it but he definitely had it, there were times I would visit him and he would not remember who I was which was really sad, not just for me but because I knew he couldn't recall a lot of his past either. He was in a facility towards the end where he had stage 4 COPD and eventually died from heart failure, which was related to oxygen deprivation.

As far as care goes it's a very individual thing, some families handle it better than others, in my father's case it was best for him to be in the rehab facility as medicare covered it and it was his best hope at prolonging his life.

However, my mother is a different story, now 80 and still living on her own with a heart condition, she can no longer manage things without assistance and it's been a challenge for us to take care of her on our own so us kids are banding together to hire someone to care for her a few times a week, fortunately her memory is doing well but her body is basically giving out on her. I'm of the opinion that she should live a senior center or somewhere she can get palliative care but not everyone in the family agrees at this moment.

 

[Mark]

i didn't know the difference between these.

 

[Scepticalscribe]

View attachment 1648

Actually, in my mother's case, the formal diagnosis was of vascular dementia, but the geriatrician/consultant/specialist who made the formal diagnosis, said that he actually thought that she suffered from a third version, vascular dementia which also had elements of Alzheimer's but remarked at the time that only a post mortem - which was not, of course, considered necessary - would serve to formally and finally confirm this.

Certainly, some of the distinctive elements, or features, of vascular dementia - the"step-like" nature of the progression of the condition, the mini-strokes (which were, in fact, what seem to have given rise to the falls), the fact that she more or less retained her own character (and sense of humour) until the end, - were pretty evident in my mother's case.

 

[Scepticalscribe]

.......

However, my mother is a different story, now 80 and still living on her own with a heart condition, she can no longer manage things without assistance and it's been a challenge for us to take care of her on our own so us kids are banding together to hire someone to care for her a few times a week, fortunately her memory is doing well but her body is basically giving out on her. I'm of the opinion that she should live a senior center or somewhere she can get palliative care but not everyone in the family agrees at this moment.

Not everyone wants to go to live in a senior centre; I know my mother would have dreaded and hated such an outcome, and I suspect that she would have given up, fearing that she had been abandoned, (as her cognitive abilities and shattered memory could not have accepted that we would have been around), and, knowing that, we ensured that she stayed at home where she was happy, and we were very fortunate that we were able to do so.

With Covid, the care challenges - whether family members are at home or are in a care facility - have increased, and cannot but be emotionally devastating for everyone concerned.

 

[Thomas Veil]

My late mother-in-law suffered from what was diagnosed as dementia, as did some of her relatives. It presents in such different ways. One older relative in a nursing home became a kleptomaniac, always stealing other people’s glasses. In my MIL’s case she got confused in various ways: mistaking my wife (her daughter) for her late sister; wanting to walk to Sunday church (three miles away) at 2:30 on a Tuesday afternoon; and, frighteningly, waking us up at night because she was sure the Communists were coming for her. (She’d survived a Communist concentration camp in Eastern Europe.)

She wasn’t always confused, but just enough that I remember printing out an enlarged photo of her and my wife standing together inside our house by the front door. I put the words OUR HOME above it, and then taped that sheet to that very same door, just to reassure her of where she was and who she was living with.

 

[Scepticalscribe]

I remember writing the year - the year (i.e. "this is 2012", 2013 and so on), as did my brother when I was away, - on a sticky which we stuck to the fridge door.

And yes, there were times when my mother thought that I was her mother.

And there were times - heart-breaking times, at the stage, mid way on this bittersweet journey, while she was still sufficiently articulate to be able to express herself (i.e. she hadn't lost language) but suffered what she herself had earlier described as "blow outs of the mind" in her memory, when she had forgotten that my father - to whom she was very close, they had enjoyed an excellent marriage for 45 years, one where they were friends, partners and spouses, - had died, and prowled the house looking for him at night.

 

[Eric]

Not everyone wants to go to live in a senior centre; I know my mother would have dreaded and hated such an outcome, and I suspect that she would have given up, fearing that she had been abandoned, (as her cognitive abilities and shattered memory could not have accepted that we would have been around), and, knowing that, we ensured that she stayed at home where she was happy, and we were very fortunate that we were able to do so.

With Covid, the care challenges - whether family members are at home or are in a care facility - have increased, and cannot but be emotionally devastating for everyone concerned.

I should be clear that she really doesn't have cognitive issues and is of pretty sound mind. She is no longer capable of living by herself due to her health issues, the constant calling of ambulances and refusal to allow healthcare professionals make any sort of long term plans have been a challenge for my family. Here's what we've tried to offer her so far:

• Move to a different state where I live and we would take care of her, a single story home with her own room and bathroom with us here to assist with meals and care.
• Assisted living center.
• We would pay for caregivers to come into her home and assist.

She's turned it all down, all she wants is to be left to her own devices at home and a family member to be at her beck and call when needed, which would be most of the time. This is not an option for those close to her because they all have to work.

If this is the way she chooses to go then I say let it happen, we cannot force anything on her even though we all want to help. In the end it's her right and we'll just call 911 for her when needed.

 

[Mark]

@ericgtr12

If this is the way she chooses to go then I say let it happen, we cannot force anything on her even though we all want to help. In the end it's her right and we'll just call 911 for her when needed.

yes. this.
i have direct experience where the alternatives to this way (such as moving in with you, far from her home base that she knows and is familiar with) actually could actually cause a very aged person to have their death hastened, by the change itself. i think it happens more times than not.
respect your mother's wishes. she is expressing what she knows is best for her.

 

[SuperMatt]

Playing dance dance revolution helps dementia patients!

Electronic "dance" game gives dementia researchers hope for treatment

An international research team from ETH Zurich has found a glimmer of hope in the treatment of dementia. While no other drug routes have made a dent in altering the…

boingboing.net

 

[Scepticalscribe]

Playing dance dance revolution helps dementia patients!

Electronic "dance" game gives dementia researchers hope for treatment

An international research team from ETH Zurich has found a glimmer of hope in the treatment of dementia. While no other drug routes have made a dent in altering the…

boingboing.net

Whatever music works - or resonates - with the person, whatever they respond positively to - is what you should play.

My mother adored ABBA, so we played their music endlessly for her, she invariably brightened whenever she heard their music playing; in fact, the CD of ABBA was playing as she died.

While she was still sufficiently mobile, she used to dance to their music sometimes with uninhibited enjoyment, and pure pleasure, an expression of happiness on her face; later, when she was less mobile, - and dancing was no longer possible - she would beam, an ecstatic grin on her face, and enthusiastically mark time to their music with her hands.

 

[User.191]

Beginning to ponder if my mum has something similar. She’s had two falls in three months and I’ve noticed how different it is speaking with her these days on the phone or by Zoom.

 

[lizkat]

Well in the USA the FDA appears to have stepped in it regarding a drug approval related to mitigation of Alzheimers. Despite 10 out of 11 advisors on an advisory committee voting no on approval, and the remaining advisor weighing in as "uncertain", the FDA went ahead this past week and approved the drug despite asking for further clinical data (but specifying an extremely generous 9 YEARS to do so).

Three of the 11 advisors so far have since resigned, one stating in his resignation letter that the decision was "probably the worst drug approval decision in recent US history."

Three experts resign as FDA advisers over approval of Alzheimer’s drug

One former adviser accused the FDA of presenting “slanted” questions to committee.

arstechnica.com

And it seems to me the Ars Technica writer more than buried the real lede, not only leaving it to the penultimate paragraph but to the last sentence therein. Talk about not cutting to the chase. Here is that para, so you can decide (the bolding is mine):

As for the remaining questions about the efficacy of Biogen’s Aduhelm, the FDA required Biogen to conduct another clinical trial to assess the drug’s efficacy. If the company does not indicate that the drug is effective, the FDA could rescind the approval. However, Biogen has up to nine years to submit its data. Throughout that time, the drug can be prescribed to patients—at a list price of $56,000.

 

[Clix Pix]

I've been following this, too, with interest.....and it seems to me that if so many (presumably knowledgeable) people were concerned about the drug and its actual efficacy and potential to offer genuine help that the FDA might have been wiser to taken the other road at the fork of decision-making rather than approving this drug.

The price tag, too, seems a bit steep, to say the least, given that Alzheimer's usually affects the elderly and many of them are living solely on their Social Security Retirement benefits and that's it, no pensions, no savings, no investments...... So, yeah, elderly Mom or Dad already in the nursing home being covered by Medicaid is going to suddenly be administered this expensive medication? Huh! I doubt that. Mom or Dad at home pottering around at loose ends and clearly not doing as well mentally as would be hoped by concerned family members, is diagnosed with onset of Alzheimer's and magically expected to be able to afford this medication? Mom or Dad's SS benefits barely cover their current living expenses as it is now. The family is expected to pay for this wonderful new medication? We all know that in the US the insurance companies, including Medicare, are not going to cover this 100%, although they may pay some towards it, while of course collecting the patient's deductible payments, too, and when that runs out finding some other way of not paying the full freight while in the meantime the family and the patient are struggling, desperate....