Can you talk to me about your experience of Alzheimer’s

[Veuvestar]

How quickly it progressed and what it was like at the end
Just looking for someone to talk to really
My uncle was officially diagnosed 5 years ago at 65. He was really fit and strong and physically healthy so we thought that might stand him in good stead. But it’s really taking it’s toll now

My DMIL recently passed away after battling Alzheimer’s.

She had been a VERY fit and active late 70 something, when her mental capacity started to dwindle fast. Soon she was very confused and went into care. She was always walking around in the home and talking to everyone, but it soon took a toll on her body too, and she soon became more and more immobile and detached. Laterally she didn’t even recognise us.
Her passing though was very gentle and peaceful. She was 86.

I’m sorry you have this to deal with OP. It’s a horrible disease that robs us of our loved ones, even while they’re still here. The deterioration is shocking.

I'm sorry.

My mum was diagnosed quite late at 79, and she managed 3 years (mortality does depend somewhat on age at diagnosis, I believe).

The first 2 years were what you'd expect - becoming confused in usually familiar surroundings, missing appointments, getting lost, constantly leaving her pushbike in town! Withdrawing from helping out at the church, feeling that she was unreliable etc, and "confabulating" - coming out with outrageous stories she believed to be true but which couldn't possibly be.

You tend to get a big "dip" at some stage, and for mum it was some kind of fall along with a UTI (we weren't there so don't know what happened, and she couldn't remember) - she had a terribly painful lower back. She never really recovered her mobility after that, although the pain improved - it was as though she'd forgotten how to walk, she could no longer lift her feet up. She used a walking frame but started to fall a lot more frequently over the next few months.

The wandering then started - she'd get confused in her flat and wobble off down the corridor in her nightie with her frame. A neighbour (she lived in a retirement complex) found her down in the stairwell in the dark, I have no idea how she made it down the stairs from her first floor flat. This is making me emotional.

The warden started putting me under pressure to move her into residential care, even though I had carers going in twice a day - I had set up cameras in her flat so we'd know if she fell, and put notices around to try to stop her leaving. I didn't really know what to do, I knew she wouldn't want to be in hospital.

I upped the carers to 4 times a day, but she somehow always toppled over or disappeared between visits and before I could get to her (I was 30 minutes away). This all happened in the space of about 8 weeks. Just before Christmas 2019 she was found face down on the lawn in the dark and the pouring rain one night, telling her rescuers (a passing ambulance crew) that she was trying to bring me some biscuits.

I managed to get her a "respite to permanent" place in a care facility near me, but they couldn't take her until new years eve. The night before, the camera caught leaving her flat at 1am, in a nightdress and with her frame. She activated her wrist alarm at 2.15am, and she'd just walked to the other side of the development and sat down - indoors luckily.

I was so relieved yet sad to see her go into care the next day. She declined very quickly after that move, which is common - she generally thought I was her sister, and I played along. As the weeks rolled on she wanted to know why her mummy and daddy weren't visiting her (dead and gone for 40+ years). I would say they'd gone shopping and would call in later.

In the end she suffered a significant UTI which developed into sepsis, and she passed away in May 2020 after only 4 weeks of being very sick. I was able to see her once when she was lucid enough to give me a big bright smile, and I told her what a wonderful mum she had been and that she could go whenever she was ready. I saw her once more a few days later when she wasn't really there anymore, about 10 hours before she died, and then a few hours afterwards.

I can't dress it up - it's stressful, it's difficult, and it's heartbreaking. But when you're right there in the middle of it, you just deal with it, because that's life. You get very accustomed to a new version of the person as they change. When they go it isn't a shock, and you're mostly glad for them that they don't have to suffer the indignity of it all any more. I was happy for her that it was over.

The grieving comes in fits and starts, much later, when you remember the pre-Alzheimers version of them.

I hope your uncle still has some good quality time left - don't fight it, try to go with it and help him feel normal and safe. I hope I haven't upset you - sending my best wishes.

My dad followed the classic pattern of sharp declines with long periods of stability between. From first symptoms to the end was about 7 or 8 years.

The elderly parents forum is a good place for help and advice and sharing of experiences.

So sorry to hear this x

My grandma spent a couple of years declining mentally. Forgetting things and getting muddled and her behaviour sometimes changed or became unusual. She then declined more over the period of another year or two where she eventually lost her speech and the ability to walk, use the toilet and feed herself. She then lost her ability to move and needed hoists and lifting etc. She was very well cared for and loved and had a good quality of life with family around her right until the end. The beginning was what I found the most challenging in terms of coming to terms with losing ‘her the person’. Xx

It's such a cruel disease. I'm sorry you're having to deal with this.

My Mom was diagnosed 3 years ago, although she'd been showing sign prior to that. She's still well enough to be at home with carers going in 3 times per day. The next step will be residential care.

My other experiences of family with dementia is they had a sharp decline in cognitive function but their body was still healthy. There was then a few years of needing full time care before they died. My Uncle spent 7 years in a care home and was happy. You could see he was still in there somewhere and enjoyed his time there.

Dementia is far harder on the families that the patient. My Mom hasn't realised I haven't been able to see her since November and she doesn't remember I'm having treatment for cancer. There's a lot of support groups out there that can help to come to terms with what's going on.

From first symptoms to death probably 6 or 7 years. Concerns batted away from the PWD at first then small crises arose. We were very lucky that we had done PoAs previously and done funeral planning already.

Diagnosis took best part of 9 months from hauling the PWD to the GP to getting appointment with Memory Clinic, brain scans and subsequent diagnosis. From diagnosis to death - 15 months. Very steep sharp decline. Resistance by some family members to placing the PWD in a nursing home, the PWD was not safe at home; sadly a stroke took the last vestiges of lucidity. Then UTI and sepsis carried them off. Dreadful disease and almost worse for the family.

Oh this is so sad
Sandy- the incident with your mum trying to bring you biscuits

We’ve had the forgetful stage, the getting lost stage
We were surprised by the double incontinence because he didn’t seem close to that much of a decline.
He’s been more and more unsteady on his feet, fallen out of bed a couple of times.

The last couple of weeks he just seems to have stopped moving. I don’t think he’d get out of bed if someone wasn’t there to get him up.

We have found brilliant carers privately, because he has funds we seem to have skipped the social worker/gp involvement. The memory clinic can’t do much for him now.
He was going to a day centre 5 days a week, they are fantastic, but I think his time there is coming to an end.
So a month ago, he needed personal care and entertainment and now most days he needs personal care and simply getting him out of bed and making sure he’s fed and watered.
I get him up and showered and then he’s ready to go back to sleep.
He’s still in his own flat, my sister lives next door and we have cameras etc.

Ime and opinion more than 4 visits a day could be read as needing full time care in a home. Also a Frailty Score can give a very good indication of where you are at, so to speak. The community dementia nurse, the day centre or the memory clinic might have scored him already.

Another thought : I do hope you are not lifting or moving him unassisted, that is dangerous for you both.

I'm a geriatrician so have professional experience of dementia, but my gran died from Alzheimer's so I have personal experience as well.

My gran showed signs about 2 years before diagnosis and was prescribed memantine to slow the progression, yet she died about 2 years post diagnosis.

People can "live well" with dementia, but it is reasonably rare. One thing I will say, it usually worse on those watching.

Decline tends to go in fits and spurts, they'll be stable for a while and then an infection (UTI, cold etc) will knock them for 6, then they'll stabilise but with a marked decline, be at that level for a while, then have another decline. Noticeable declines tend to happen after infection and after periods of change or uncertainty, moving house, a period in hospital etc.

People with end-stage dementia can often be cared for at home, it depends how it presents. From what you describe, remaining at home would likely be possible - it will depend on whether he needs repositioning overnight to prevent skin breakdown (bed sores/ pressure wounds), not everyone cared for in bed does.

My mother showed the first signs in her very early 80s, and went on to 97, in a most pitiful state for her last few years. She was in a care home for her last 8 years, since she was no longer safe to be left alone at all.

Having witnessed her slow decline, into someone who no longer recognised any of her family, had no clue about anything, was unable to hold any sort of conversation, and was also doubly incontinent, I honestly think that a swift decline is more merciful. My poor mother’s former self was an intensely private person and would have been appalled at what she’d become.

I honestly think that a swift decline is more merciful

I'd agree with this. I know we as a family, though obviously saddened by my grans death, felt it was merciful relief for her.

Flibberty- he’s been very co-operative and easy to move up to now, but there’s been A couple of instances in the last week when it’s needed 2 of us, so I think we’re moving into new territory.
Dotdash- we’d like him to be at home. We checked out all the homes over a year ago and we’re struggling to see him there. One of his carers also works in a home and can’t see any advantages at the moment.
Yes a swift decline would be more merciful.
I can’t see him staying at this stage for years

My heart goes out to you all. Tough times ahead, I cannot lie. Lots of experience here, don't hesitate to ask for support.

This is really interesting. My grandma was diagnosed late last year and I’ve been really surprised at how quickly she seems to have gone downhill.

She comes across very normal and remembers who everyone is etc so if you didn’t know there was something wrong you probably wouldn’t suspect. But then she’ll come out with these stories that she’s been in hospital for months or that she’s been out with a friend when she hasn’t. She’s also taken to calling me during the day and leaving me voicemails whereas previously she would only call in the evenings because she’d know I’m at work during the day.

It’s difficult to get an idea of what is and isn’t the truth when you speak to her as she’s so convinced of all the details of a whole situation that actually never happened

As long as he isn't escaping the house or trying to get out of bed at night and falling, there isn't really a need for him to be in s home if it's not what he or you want.

FizzyPink it could be that she retains her "social front". Can pass the time of day with anyone, to the untrained eye appears unaffected, possibly a little eccentric. But beneath the service struggles with routine, memories are all jumbled, can't sequence etc.

My grandad had it back when I was 16....
He started getting forgetful about 6 months before that but we just chalked it up to old age. He was 72 at the time Then he started getting worse to the point he only remembered me and my Nan. I was 16 and having to stay at her house to help her. One time she went away for a party and I stayed with him, my mum came around to help ( she had my baby sister so couldn’t care for him too much) he didn’t know who she was for ages then when she was about to leave he said her name and said goodbye. About 6 months after that he went in a home and then he died 4 months later with heart failure. At that point he started to forget who my nan was. This was a guy who was healthy his entire life and never had so much as an earache. He deteriorated within the year. It’s a very intense disease and people forget it goes beyond just losing your memory, they lose thier life from one minute to the next, a whole lifetime lost in the back of your mind. It’s not pleasant for anyone involved

That sounds exactly it @dotdashdashdash at least it was until very recently. It seems so strange that 9 months ago I had no idea there was anything remotely wrong with her and then today she’s called me 6 times in the last hour to check I received my birthday card.

What’s the done thing in that situation? After she’s called twice to ask, should I tell her to write it down so she doesn’t need to call again? It’s quite scary how quickly her memory is deteriorating. She asked me on the first call and I said yes, then less than a minute later she asked me again so had obviously completely forgotten.

That sounds really hard @Timeisavirtue but in a way I do hope my grandma doesn’t have to live years and years like this. She’s very aware that she’s losing it and that must be so difficult to deal with.

One thing I should have added, the Alzheimer’s Society Talking point forum, for carers of people with dementia, was an absolute lifeline for me. There aren’t often any easy answers, but whatever you’re going through, someone will have been there and will know exactly what it’s like. People who haven’t lived with it usually don’t have a clue, but may often think they do, and their ‘advice’ can be profoundly irritating!

One thing I wish I’d worked out sooner, is that if someone with dementia has got some fantastic idea into their head, it’s no earthly use reasoning with them or trying to use logical argument. They will be utterly convinced of it, so if they had tea with the Queen yesterday, all you can do is say, ‘How lovely - were the cakes nice?’

It’s only a problem if it’s something that’s distressing them. My poor mother once became convinced that she and her cleaning lady had taken my father’s dead body to a graveyard many miles away, and just dumped it.

She’d had a dream, triggered I’m sure by something on TV the night before, and although I’d been there when my DF died, and was there at his funeral (he was cremated) nothing I said could convince her - nor could her cleaning lady - she was dreadfully upset and inconsolable for at least 48 hours.

In hindsight, what I should have said straightaway was that it was Ok, no need to worry, we knew all about it and he’d been buried properly now.
This is the sort of thing I mean.

Our stock phrase for anything distressing Dad was 'dont worry, X is sorting it.' As said there is no point in trying to reason.

My Dad probably 6 or 7 years from early signs, reasonably good quality of life until the final couple of years. He eventually had to go into a specialist home, which took wonderful care of him, and he died a few months later.

One poor man had been bed bound, uncommunicative, just 'gone' for over 6 years in the home, so there's no telling how it will go.

My Dad lost his memories and reason, but never lost his personality, so we still felt he was himself all through. I'm so sorry you are having to face this. Xx.

My DF, 85, is heading this way but in completely denial so no chance of him speaking to a doctor.

He is not yet as advanced as some of your experiences - he forgets what he is supposed to be doing, takes a long time to work things out, and suddenly doesn't know how to do things he's done a million times - put spaghetti round a fork, plant something. Also sudden shifts in personality, his boundaries are changing as to how to act around people and what he says.

I'm dreading what the next few years will bring - I think it will be the v healthy body / dementia scenario. My DM is already finding it difficult to live with him, especially as he continually denies that he is forgetting anything.

@FizzyPink

That sounds really hard *@Timeisavirtue* but in a way I do hope my grandma doesn’t have to live years and years like this. She’s very aware that she’s losing it and that must be so difficult to deal with.

I think them knowing is harder, I also think this is why many of them lash out because it’s very frustrating knowing parts of your mind are blank.

My mother started showing signs of amnesia/confusion nearly a decade ago but it become plain within a few years that it was more than “just old age” . My dad stick his head in the sand. In October 2020, she wandered off in the late evening whilst my dad was in hospital and the police were called and they told Social Services.. At that point I insisted on a diagnosis.

She’d hate it if she knew. She’d rather not be alive. But she’s not really aware of her condition.