Parents with dementia - what was the timescale and progress?

But what is the alternative to POA? Without the power, it would be the equivalent of abandoning the elderly person as there is no one to handle their life admin and finances and make medical decisions for them. I am surprised your dh even thought of walking away from his own mum, because that is what it would amount to. A bit of admin never killed anyone. Sorry this makes me cross.

The stuff does not appear from nowhere, it was always there just needs someone to handle it.

That is why many of us at middle age are called the sandwich generation. Looking the elderly and our own dcs.

I wonder if living healthily might sometimes delay the onset or slow the decline?

Having said that, stats show that the proportion of people over a certain age diagnosed with dementia has gone down in each generation, which they think is due to reduced smoking and increased treatment of cardiovascular risk factors. The numbers are still climbing because we're now into the big baby boom reaching advanced age, and because more people live longer, but it does mean it is still worth doing those commonsense things.

I agree. I find that 'live healthily' advice gives people false hope. My NDN smokes about 80 fags a day, is overweight and lives on bacon sandwiches and Doritos, as far as I can see, all cited as risk factors for dementia, and she's late 80s and sharp as a tack. My ex FIL cycled into his late 70s and was rake-slim, teetotal and ate oily fish and salad etc (MIL was cracked on healthy eating and he's now an absolute wreck with vascular dementia.

Grandparent diagnosed at 87, recently died of something unrelated at 94. Certainly did see a decline and she became more and more non verbal in her last six months or so but always knew who we were etc.

I clocked my dad's dementia about 15 years ago. Mum told me it was stress (he was her carer). She died a couple of years later and he dissolved himself in alcohol for a couple of years.

He was diagnosed 12 years ago 2012 but quickly wasn't able to live alone. It wasn't just taking him shopping, his insistence that he could put it away himself and having to go back 20 mins later to remove the lettuce from the freezer and the ice cream from the pantry or his inability to tell TV from reality, high levels of confabulation, inability to manage cutlery...

He moved into residential care but was free to come and go. He had an account at the shop. He went for walks. Then he started getting lost. Then he started thinking he was clever and lying to staff about where he was going so they couldn't find him if he was late back...

Eventually they put a deprivation of liberty order in place. He was still quite erudite and hid missing words behind verbose and archaic sentences.
He couldn't name anyone in the family by that point but knew we were connected.

Then COVID. We barely saw him for months on end. After that he had no idea who we were. We were just the nice people in the village.

He carried on like this for a further 3 years. Then he lost most of his words. Last summer he started retaining water and whilst still independent in personal care, he needed pads.

In October he had pneumonia. 2w later a pulmonary embolism and shockingly poor hospital care.

He died in November. But that was 11 years post diagnosis. He was in good form, physically until the last 6m. He was 87.
I'm relieved for him that his body finally gave up. Life wasn't much fun for him for the last 5 years. It's a long time to exist.

Dementia is so cruel. I really feel for anyone else on that pathway.

However, Wendy Mitchell's experience was very different. She was active on twitter (less frequent but still lucid) until a week or so before she died. She also published 2 books post diagnosis. She was an amazing lady!

9 years from signs of cognitive stuff, 7 years from diagnosis til death of an infection of some kind in her 90s. Still knew us but needed lots of domestic support.

Sorry to hear about your parent. It's an awful disease.

My parent was diagnosed at 75 and eventually died at 87.

POA can be a double edged sword sometimes.

Yes it definitely makes it easy to deal with stuff. BUT it also makes a whole great big pile of stuff appear from nowhere... relentlessly with no let up.

DH had 12 letters last week concerning his mum... (redirected from her home address) medical, care, house, bills, bank... all needing his input as her representative - he had to be talked down from walking away.

My dad was diagnosed with Vascular Dementia & Alzheimer's in 2015 and he died in 2024, he declined quite gently for about half of that time and then more rapidly and alarmingly. He was very agitated and restless for the second half and eventually had psychotic episodes. He was never violent but he became suspicious and paranoid and didn't know the difference between night and day or who we were or where he was. He died at home, with support from carers & the hospice at home nursing team, for the final 6-8 weeks. He was 91.
My mum also has Dementia, caused by brain damage, caused by epilepsy & a head injury. Her decline has remained slow and steady, since 2018, without the chaos of my dad's illness. She had a heart attack in December last year and was unconscious for some time so her cognitive function is quite a bit worse but she has recovered physically. She is 90. She lives independently, with quite a lot of support from me, although I don't live with her.

Haven’t RTFT but definitely get POA - it’s only possible to do it when they still have some capacity if memory serves me right. My mum got POA as soon as dad got his diagnosis.

My dad was diagnosed with Alzheimer’s in 2018, although he had had symptoms for at least 2 years, but the GP refused to refer him for a long time. He went into a nursing home in 2020 and died in 2021 at the age of 88. The cause of death is listed as Alzheimer’s / old age.

I’ve heard that if you are diagnosed younger you live longer though. My ex husband’s nan lived for about 10 years post diagnosis.

Certain things may make a difference though - my exh’s nan was cared for by her husband for the first 5 years. My dad declined very quickly in the 2020 lockdown and even more so after he moved into the home and there were restrictions on visits.

@Sittingontheporch
We are also told of the importance of social interaction and brain activities plus various dietary things in terms of fending off dementia. My parents did crosswords every day, went weekly to a tea dance where they learned new steps each week, other social activities such as local history and walking, ate healthily but they both still got dementia. I was quite resentful for a while. Over it now, it’s just one of those things.

I’m sure someone else has said this, but have you power of attorney..

My FIL started with low level forgetfulness about 15 years ago. First big sign was that he forgot to tell dh and BIL when their grandma died, then wondered why they weren’t at the funeral.

he masked it really well, he was a very intelligent man (he got his PhD in his second language!) and also a creature of habit, so it took a while for anyone to see it (his partner didn’t notice as she was with him every day but we live in a different country so saw him maybe 4 times a year).

7 years ago it became obvious that he couldn’t stay home any more, he was wandering in the night and forgetting to get dressed. We were very lucky to get him into a good care home, and his faculties just slowly declined, though he was still eating, especially anything sweet! (The medication he was on was disguised in his pudding).

About this time last year he had a fall and he went to hospital, and at this point the care home were unable to take him back as he’d lost most of his mobility. He was moved to a nursing home. On Boxing Day just past he was taken to hospital with a UTI and the doctors - along with his partner and dh, who is a GP - decided not to treat it. He was made comfortable and died a week later without regaining consciousness. He was skin and bone, curled up in the foetal position, and couldn’t talk or recognise anyone.
DH said he’d heard once that you can be “sad, but not sorry” that someone had died. I think that’s how we all felt. He was 79.

My mum's aunt lived until the age of 102 with dementia (it only seemed to hit her in her early 90s) but she also had a mass in her breast diagnosed about then too, so it's amazing she lasted so long. Some old people have powerful constitutions - so many old folk die following falls in very old age, yet you do hear of some people having fractures and making a recovery like pp's mother above.

I work in a dementia unit and honestly mo 2 people are the same. It's heartbreaking I know. Being physically fit and well improves well-being but honestly anything could happen.

For MIL, the signs started about 10 years ago with general memory issues, i.e. asking the same questions again and again within a few minutes, inability to hold a conversation as she'd forget what you'd just said to her. It was roughly 2015 when we noticed as we'd taken her on holiday with us (as we did twice a year for several years beforehand), but this time, she kept asking where she was, whether she'd been there before, how long we were there for, what we were doing today, etc - time and time again - just couldn't remember she'd already asked and couldn't remember our replies.

She persisted living independently for a few more years simply due to "Muscle memory", ie going to the bank every month to pay her bills, paying her papers every week, handing in her prescription at the chemists and remembering to pick up a few days later, so it was pretty much well hidden by simply keeping to routine. It all fell apart when taking her on holidays as she couldn't pack for herself anymore, and struggled living somewhere different for a week or two. She couldn't remember where she lived, asking if this was her new home, whether we'd bought it, etc. She was fine out and about, going to attractions, eating out, etc., but really struggled in the hotel or holiday home.

2020 and Covid was the real killer as she lost all ability to do anything for herself when she couldn't get the bus to town, couldn't go shopping on her own, couldn't come to us for her Sunday evening meal, etc - she couldn't understand we were locked down etc. She never got over it and could never do anything for herself again afterwards once the "habit" was broken, but she still did ok with a lot of support from us and her other daughter - she could cope in her home, i.e. cooking, cleaning, laundry, gardening, etc.

Mid 2024 and there was rapid deterioration. She started forgetting to do things she'd been able to do, i.e. forgetting she had garden tools in the shed, forgetting to do the laundry, forgetting how to cook things and started to use eat microwave ready mails, even forgetting what the TV was and how to turn it on or change channel! By Autumn 2024, she didn't understand heating the house and would sit in the cold because she forgot she had central heating and a gas fire - not forgot how to turn them on, she forgot what they were! Then she forgot how to use the microwave or even boil a kettle. OH and her daughter were having to go 2 or 3 times a day each to make her drinks and meals, turn on the heating, etc.

At the start of December 2024, she deteriorated further and couldn't even turn the lights on - OH and his sister would go and not only would she be sat in the cold, she'd be sat in the dark too, just waiting for one of them to turn up - she didn't know what to do. They started looking into getting 24-7 care or care homes, but she went downhill really fast that they couldn't get it set up in time. She couldn't even make cereal for breakfast - OH turned up one morning and she'd put orange juice over her corn flakes instead of milk! She couldn't even eat or drink what they made for her - she'd spit out water or toast pointing to her throat and making a grimace face - she couldn't speak to articulate what was wrong - she'd completely lost her words. She died at the start of January as her body had basically shut down with little or no food nor drink. They'd taken her to the GPs but they were completely useless and offered nothing at all. Ended up blue lighted to A&E where she languished on a trolley in a corridor for 48 hours!

Not a pleasant end. She was very distressed for the last few days - completely dilirious and hadn't a clue where she was, who she was or who the family were.

Sorry to say, my poor DM had Alz. for around 15 years all told. First signs in her very early 80s, went on to 97. Last 8 years in a care home - she was in a most pitiful state for the last few, doubly incontinent, etc.

She survived a broken hip at about 91 - general health was very robust. After about 90 we said no hospital or ‘striving to keep alive’ and there wasn’t, but she went on anyway. TBH a swifter end would have been much more merciful.
IIRC the death certificate said sepsis and dementia.

OTOH I know of someone who had the galloping variety - barely 3 years, start to finish. She was the ‘lucky’ one.

Practically speaking withholding all active treatment of urine or chest infections would be kinder and prevent an unnatural prolongation of the dementia decline. Impossible to avoid coercion when a person has reduced capacity to make decision. My family specify gentle, comfort care only from diagnosis - why extend a poor quality life that is ending naturally. Avoids undue suffering.

Hugs op. It sounds like she’s actually quite far advanced if she needs a lot of care. Whilst nobody can give you an exact prognosis, not even her drs, from personal experience i would suggest around 3 years until you would be at a dnr stage, what actually happens at the end is variable but flu, pneumonia, Covid etc often is the co morbidity on the death certificate. (Due to my job it’s an occupational hazard being involved with dementia).

I know how horrible it is as I’ve listed family members to this cruel disease(s) as well as dealing with it through work. Make sure you look after yourself and your dad op. Thinking of you

My grandma - probably about 10 years. She also had heart disease and v poor vision. She got to the stage of lacking any mobility and then went into a care home. She was only in there about 3 months, but actually it was her heart that gave way.

My mum has now been diagnosed with middle stage alzheimers and I think she's been there for about 2/3 years. She started showing dementia signs approx 8 years ago though so I think she's progressing pretty slowly. My MIL however had a variety of physical ailments that appeared at the same time as the dementia, and although the dementia was never diagnosed, within 2 years she was hallucinating. She then had another 18 months of being seriously unwell and then fell and broke 2 ribs. She then went on pain killers and then 2 weeks after that, fell and broke her hip. She died about 3 weeks after that in hospital.