Parents with dementia - what was the timescale and progress?

That sounds so brutal @Thoseshoeslookcomfy. It really is like a complete personality transplant in some people, akin to some sort of possession. My mum's friend, who was the most prim and proper woman, a Sunday school teacher and lifelong churchgoer, started shouting and swearing her head off at carers when she was in the final stages. If my mother went like that, I don't know what I would do, it would be the stuff of nightmares.

My dad used to repeat things but I put it down to “forgetfulness”. Then a couple of times he told me he had got disoriented while out, not knowing where he was. This was in 2015. By early 2016 things like this were happening more and more. He began to see things that weren’t there. He kept getting lost and then started losing things. He then started mixing up his medication and getting confused about days of the week. Some days he was completely normal others he was off kilter. This all happened over 18m - 2 years. I then decided to stop work to support him. By now he was at the point where he was having more issues. He started phoning people but forgot he had just spoken to them. One day my cousin said he had called 16 times in a morning. One night he called the police to say he locked in a strange building - he was at home. He was referred to the dementia clinic. It took a while - it was by now 3 years. He was diagnosed with mixed dementia possibly with Lewy bodies (he would see people and animals etc that weren’t there).
We are now at the end of 2017. I would be with him from 8-6 every day. On my way home in the evening he would often phone me to ask when would I go to see him as it had been so long. Sometimes he thought I was his sister, sometimes his mum. He attacked me one morning as he thought I had come to steal from him. It was awful. He put a Tupperware container into the gas oven and forgot it until the kitchen filled with smoke - luckily no fire just melted plastic. He became incontinent. At the start of 2018 he moved to a care home. I was by now almost on my knees - my days with him were like psychological thrillers with some of the things that would happen especially the seeing people that weren’t there. I was drained. His dementia would stay at one level then he would have a very sudden decline. Then the same again. I visited the care home every day for several hours. Some days he was my dad other days he was disinterested in me thinking I was someone who worked there. He died at the start of 2020 so in 5 years he went from a bit of forgetfulness to being completely wheelchair bound weighing less than 8 stone unable to walk or recognise me (though bizarrely some days he could!)That was our timeline.

So sorry for what you are going through, OP: it is the uncertainty which is the cruellest thing I think. You said you were interested in ages/timelines. Timeline for my Dad: 2011 (aged 81) - still totally in control of all aspects of life, but forgetting rules of games like Scrabble, which before he had been a whizz at and invented his own rules (!); also filters coming off behaviour (eg coming downstairs to breakfast at a distant relative's house half dressed, when normally he was dapper at all times even at home); His mother had had dementia for many years so I suppose I was on the lookout early on. In 2013 (age 82) - minor accidents while driving, not involving other vehicles; assessment of risk while driving much reduced; emotional outbursts if in unfamiliar situations (eg at my wedding, weeping and shouting out "Oh!") compared to his pre-dementia state, which was highly controlled and undemonstrative; more language filters switched off; his speech seemed not to be able to keep up with his brain, so often a long sentence would end in a mumble (he had been highly articulate); forgetting the way back from local shops; but on the other hand, completely his old self in other ways; 2017 - visual hallucinations on waking from sleep and daytime naps. Would wake up and make tea for three people: himself, Mum, and his brother, who had died the year before. In 2018, decision to move nearer to me taken between him and my Mum; completely unable to deal with sale of their house, simply disengaged with the process, mistrust/paranoia about us, his advisers, Mum, started; anything he didn't understand he simply walked away from; After the house move, his world shrank; in a nutshell, his world had stopped in 2018. Anything after that he couldn't really process. 2020: Lockdown had a vicious effect and his decline speeded up but getting a diagnosis was impossible. Hallucinations both waking and sleeping; convinced that people were in the house and would point to them while we were with him. More language filters off (effing and jeffing in public). Obsessed with money, couldn't understand why he had as much as he did (proceeds of sale of house, but he was convinced it was fraud); lost ability to frame complex sentences; often bad-tempered and/or hallucinating in the mid to late afternoon. By 2022, my Mum was exhausted and we moved them to assisted living; Dad threatening divorce and ringing family members to tell them about it. Accused my lovely husband of scamming him. Episodes of uncontrollable weeping. But other days amenable and content, polite to everyone. He collapsed in October 2022, was taken into hospital and from there to a care home, then back to hospital where he died aged 92. He had made it very clear in his first week in hospital that he did not want to live on in a care home and that he should have died earlier. It sounds horrible but I had been hoping for ten years that the dementia would not catch up with him - and he almost outran it. Cause of death was urinary sepsis; I think he just really, really wanted to stop living. Sorry for long post; I hope this helps in some way. Sending sympathy and good wishes.

That’s interesting thanks for that. Very different to my own personal experience but must be correct if that’s what the statistics say.

Just picking up on what you said earlier, OP, about the saddest stories being those who lived for longer, this was opposite for us. My dad’s experience was awful, awful for him. Mum continued for a long time in what I would say was a benign state, where she seemed happy to sit and watch what was going on. We had carers at home initially but when dad needed two carers for moving him, they both moved into a care home, which I think was good for my mum with things going on around her and safe spaces where she could wander around, so better for her mobility than sitting watching TV all day as she had been doing at home.

It is hard, OP, I feel for you. Your mum sounds very similar to how mine was. We started noticing confusion in around 2013 and she was diagnosed with ‘mixed dementia’ (both Alzheimer’s and vascular) in 2016, moved into care home in 2018 at which point she was very confused/forgetful and struggling somewhat with speech but still mobile and recognised me. At some point in 2021-2022 her mobility went, most of her speech and I’m pretty sure she didn’t recognise me as her daughter, although she knew I was someone she liked and was pleased to see me. She passed away early 2023 aged 88. Her deterioration was very gradual. By the end I knew it was time to let her go, but just a few months earlier I would have said she had quality of life as I could see she got enjoyment out of certain things eg music.

On the other hand, my dad had vascular dementia, starting in his very late 80s following illness. He deteriorated very quickly, had hallucinations and became bed bound after around 6 months. Diagnosed early 2018 although I would say looking back he probably had it the year before but I didn’t realise as it was very different to my mum. He passed away in 2019.

The NICE guidance on dementia advises that the gold standard is a palliative approach from the point of diagnosis. That doesn't mean expecting a rapid death, it means prioritising quality of life now over discomfort and disruption aiming at future longevity. From the start. I don't think that advice is well implemented at all, but I would aspire to it for myself.

https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/lifeexpectancies/articles/mortalityinenglandandwales/pastandprojectedtrendsinaveragelifespan

I’m slightly out on the females (it was based on my analysis of more recent data) but the key statement is:

• In 2020, the most common age or "modal age" at death was 87.1 years for males and 89.3 years for females in England and Wales.

I would say 13 years for my mum in law who died a few years ago, the first sign although we didn't realise was her coming back from holiday and saying she had forgotten how to swim. Kept it kind of together for til 2017 and then declined rapidly.

We are on this journey with MIL ... diagnosed in 2018 with alzheimers, vascular dementia and frontal lobe shrinkage.

She was ok for a little bit after diagnosis, but in 2019 had carers twice a day at the start and 4 times a day by the end... which were a godsend during covid.

Was fine, with the odd fall and hospital stay until New year's eve. Fell badly and was admitted. No broken bones, but became clear over time she was bedbound, and only falling because the dementia made her forget that fact. She was placed in a community convalescent ward. Finally was agreed she needed a nursing home, where she has been since Feb. She also has copd, heart failure, diverticulitis, diabetes and a raft of other conditions, she is mostly deaf, mostly blind and doubly incontinent. She is 87 and still going strong - in her own world.

The telling thing to me, in your post, is you say you don't want her to die. When you are further into the journey, as we are, you probably will... sorry... it sucks

My Dad has Alzheimer’s disease and is around 10 years in at 86. My wonderful stepmum keeps him busy and takes him out a lot which I think has helped slow decline. Regular theatre trips etc. he can’t concentrate to read now and creates lots of imaginary scenarios of things that simply haven’t happened or he gets fixated on one person and feels very angry with them, it can be somebody he’s not seen for decades. He has just had a UTI but it was caught quickly and is recovering with antibiotics. He is in otherwise “good” health for a man of his age and condition. My grandmother on the other hand, declined very quickly and it was probably a blessing when she caught MRSA and died peacefully. It was so bloody awful seeing this once vibrant, bright and beautiful woman become an entirely different person. I think it’s really very variable and hard to tell from person to person.

Physically my mum is in really good shape and I don’t want her to reach the very last stages of being unable to feed herself, talk or walk so I am debating when I should start saying no to flu and Covid vaccines. She would be horrified if the person she once was could see herself now.

The thing is, I read that frequent colds or flu might worsen cognitive decline.

I’m sure that most people would be horrified if they could see in advance how they’d end up after years of dementia. Luckily, they never will, so that’s one thing I don’t worry about.

Gosh these are v moving accounts

My DM was diagnosed with Alzheimer’s after the family had been suspecting some memory problems for about a year.She died 4 years after her diagnosis .Cause of death was metastic cancer.

I really think VAD should be available to those with Alzheimer’s / Dementia.

This chart is useful to see the general stages and average duration of each stage. My mum is 92 and somewhere in Stage 6 depending on the day. It’s 10-12 years since we noticed the first signs and 6 years since she was diagnosed. I read that as a general rule the younger you are when diagnosed / first showing symptoms the faster it progresses. Physically my mum is in really good shape and I don’t want her to reach the very last stages of being unable to feed herself, talk or walk so I am debating when I should start saying no to flu and Covid vaccines. She would be horrified if the person she once was could see herself now.

It surprised me too @Cattenberg. I thought perhaps as it seemed to run down the maternal line in our family, it may have been worse in males - conditions that pass from women to male offspring often seem to be.

That is painful reading. My grandma’s dementia progressed more slowly than average, so I hope her son’s will too. But clearly that might not be the case.

@Toodaloo1567where do you get these stats about the majority of woman dying in their early 90’s men at 87? This is certainly much later than what I’ve generally experienced, with people I know. Over the last year 5 of my friends parents have died, all in their 70’s

My grandmother - dementia ran in her family, through the maternal line - I recall her repeating herself constantly when she was about 80 - she didn't die until she was 92 though, and that was from a stroke, at which stage the dementia was very advanced.

Her son was diagnosed in 2019, I think, and had a precipitous descent, high dependency nursing home within a year and dead within four years.

My mother, her daughter, showed signs from 2018 but as in your case, she and my dad put a bit of a 'front' on. When he died two years later, we got her assessed, she has declined badly over the past year following a fall and is now in a NH, very thin and frail but hanging in there. She is 89.

Generally I think female life expectancy exceeds men's when it comes to dementia, about 2-4 years for men and 8-10 for women.

3 years from diagnosis but the primary cause of death was a stroke, secondary cause dementia. DF was just about to move into a care home and I feel like this was actually the better outcome, he was still living at home and knew who we were. By comparison my Aunt has been hanging on for the last 5 years, incontinent, unable to move etc She was diagnosed late but must have had it for at least 12 years. It’s a horrible horrible disease

Don't feel guilty. This is my choice. My sibling is adamant that she couldn't do it. They do respite so I can get a break, but it's a struggle for them.

We are all different and that's OK. I always say on threads that ask about care that no one is obliged to do it. You have to want to do it, otherwise it would be a disaster for everyone. Your parent wouldn't want you to sacrifice yourself when there are perfectly acceptable alternatives (albeit you have to hunt them down).

If it ever gets too much for me, I will be looking for alternatives, so don't think I'm saintly!! 😇