How long can vascular dementia progress in very elderly parents?

[RantingMenoWoman]

My mother has been diagnosed with vascular dementia several months ago (I have been working abroad for the past 18 years, and still am, so she has been under the care of my brother and SIL.) She is kind of okay, living in their downstairs granny flat, but there are increasing concerns about her remembering to wash / eat and drink. We can tackle that, with help. The main issue is that things appear to be coming more acute, but also particularly the sleeping. She will sleep all day if she got the chance so they try and at least get her up for by mid afternoon, even if she is dozing again by 8pm. She is 94, diagnosed two years ago but it has been in the background for a good few years before a solid diagnosis.

I suppose what I really want to know, and struggle to get a clear answer, is how likely these things can drag on? My brother isn't a brilliant communicator at the best of times, and I am wondering if I will need to try and get back to the UK sooner rather than later for longer rather than the AL I use to currently come over.

I have a horrible feeling that people can just go on and on, which is no quality of life but I am also wondering if the exacerbated symptoms can mean deterioration is getting faster.

I don't mean to come across as cold hearted, I am just trying to think in black and white and practical and sensible terms rather than letting my emotions dictate. I can't get a sensible answer via my brother, so I was wondering about asking on here as there are many who, I suspect, are in similar positions.

Thank you.

My DPs are in a care home, they called us yesterday because they thought DM had had a stroke and wondered if they should take her to hospital. I asked what they thought and was told it was entirely my decision. They have to be careful, some relatives will want every medical intervention going, others not. In our case we said no - DM 87 is bed bound, frail and has dementia, and I suspect has already had a series of mini strokes, so I don’t think hospital is the right place for her.

I do now think flu and covid jabs are the wrong thing for the elderly. Both my DPs have lived too long effectively as their minds have failed, but their bodies still keep stubbornly working.

I think the decline of religion has drawbacks. People seem to fear death so much, it's as if there is no context to it at all, and no difference between fatal events at the end of life and in youth. My grandmother lived every day of her life in her own house, but when her neighbour found her collapsed in her house at 101 years old, the dispatcher actually called out the air ambulance. All they did was confirm that her heart had stopped and she was dead. That's just nuts.

My friend is mid eighties and has had dementia for ten years now. He’s been in a dreadful state for about three years where he’s immobile, doubly incontinent, blind, non verbal. Apparently he could carry on like this for many more years. It’s beyond cruel.

My god, that IS so cruel! Barbaric, in fact!

@Switcher That is absolutely ridiculous.

Your mum like many 90 year olds has her body shutting down. The body knows that it is in its final phase , hence not eating, communicating and wanting to sleep. In my experience this stage can last up to a year. The most important thing for your family is not to interfere with with the natural dying process

To answer your question, there is no urgency for you to return.

In my experience she died a year after diagnosis. In hindsight I think she must have had it for a good year before diagnosis. Looking back at slight changes in behaviour that we didn’t take too seriously because we chalked them off as other existing health conditions.

She’d had a couple of falls on the lead up to the diagnosis which were suspected TIA, which is what lead to the scans and proper diagnosis.

The last 6 months is when it really progressed very quickly: confusion, pacing, not wanting to take medication, getting emotional, sundowners. She was restless and I think she knew she was dying.

We had her move in with us after being diagnosed and I can honestly say with little guilt, we were relieved she didn’t linger on for years and years in that condition for both her sake and ours.

My mother had Alzheimers with no other health problems, and had a slow decline over ten years and died aged 90.

Whereas my gran had vascular dementia and you could see the step-downs after she had a mini stroke, although she usually recovered part way to baseline afterwards. Her dementia started being noticeable when she was about 88, and she died four years later. Her death was ‘expected’.

Whereas my mother's last couple of years were stable at a very poor baseline. Doubly incontinent, immobile, had to be fed. Her death came as a surprise, because it seemed like she could go on that way forever. She caught a cold, and died of bronchitis within 24 hours.

So all that is just to agree with those who say it is impossible to predict the course of the illness.

My mother was in a care home and they are obliged to call out a doctor or ambulance, but during the final two years we all (care home, paramedics, GP and me) agreed that she would not leave the care home.

My mother has mixed matter dementia. Alzheimer’s and vascular dementia. She was diagnosed in 2020. She has been bed bound and paralysed for the last 18 months. Her speech is practically non existent and her swallow is declining rapidly.

she has 4 visits per day from carers and has been ticking
iver like this for 18months. It’s a living hell and all the docs say is she could die in the blink of an eye or tick over like this for a couple more years.

it’s heart breaking and if I hear “how long is a piece of string” one more time I’ll choke the speaker!

I’m wondering if I am getting a rather sanitised view, backed up by her semi improvised on video calls. My brother can be a bit like that, despite me pressing for alternative answers.

@favouriteflowers poor you and poor mum. It’s horrible isn’t it. Unfair and cruel.

Do you get the chance to speak to your brother when your mother isn’t in earshot?

My BIL was a bit pissed off for a while that he didn’t grasp how poorly FIL was, but he was only interested in phoning or video calling when FIL was there. That meant a really, really blunt conversation couldn’t be had as it would have been downright cruel to FIL to discuss him like that in earshot. Messages lose tone sometimes so despite DH and MIL messaging to explain he just didn’t grasp it.

Progress is also hugely variable. FIL was diagnosed at 77 and was dead by 80. His mother was diagnosed at 90 and she’s now 103. The Dr attached to her care home joke now that she’s survive the apocalypse. She’s on lost the ability to go for a walk in the last year or so and only very recently has started muddling up children and grandchildren (which is impressive as she had 15 children, 10 still surviving, and a shit tonne of grandkids - I muddle them up all the time!)

I think you’re asking too much of your DB. They’re doing all the care, it’s a lot and presumably means they have no holidays or full days out. Because they’re seeing her on a daily basis, the decline will be less perceptible, plus if she’s like my DM it changes from day to day.

It’s maybe not the same because it’s not siblings, but I find giving updates one of the hardest things. “Yes they both still have dementia. Yes they’re declining but both still eating and drinking. No you can’t phone DM because she can’t talk anymore, no Dad didn’t reply to your email because he can’t remembered his password anymore. “

Honestly based on what you’ve said, it’s almost impossible to give a longevity prognosis.

My mum is similar to this. She will seem ok for a period, can be a year or longer then there will be a quite sudden deterioration. My mum is in sheltered housing with carers and is 80 and its been this way 6 years amd shes still going fairly strong.

Agreed. Better to get that organised sooner rather than later - my own grandma had vascular dementia and it progressed very quickly. By the time she went into a home she didn't live longer than a year, but the beforehand part was very hard work and the carers were a godsend.

There is a form your Mum can complete- or you fill it in that gives Her GP - doctor- permission to speak with you

We are in such a litigious society now that medical staff are probably scared of legal action if someone perceives that they havent done their job properly.
Thats probably why A&E corridors are constantly filled with trolleys bearing tiny frail 90 odd year olds on oxygen masks who have been medicated to the eyeballs to keep them going, rather than letting them go peacefully

@rookiemere Rest assured, they aren’t doing all the care. We also have extended family very close by so my brother and partner get away quite regularly. Sorry to not be too specific with details but they aren’t lumbered by any stretch.

@scoopsahoooy We / they are aware of options, costs and packages if they become needed. We looked into it when DM decided to move in with them rather than leaving it to when things were urgent or emotional. She knows, or at least knew, too.

@JustAnotherWhinger My mum can’t really hear, plus seems to be constantly asleep, so overhearing isn’t an issue.

Thanks again all for the responses, it’s interesting to hear all your variable experiences and opinions. More the merrier really, it’s actually rather therapeutic.

This is a dilemma at this stage of her life. Whether to have carers moving her and getting her washed and dressed or to leave her to nature. It I likely that moving her about might cause her pain and discomfort. On the other hand being immobile can cause a lot of different problems . Your Brother is in the best position to judge what care she needs as he sees her daily. I think your part is to tell him our grateful you are and to step when the time comes for him to need any extra support.

No, no pain. Just a LOT of sleepiness and confusion at times (but the deafness doesn’t help.) She has regular GP / consultant appts about other background health issues too. The carers issue is tricky as sometimes she basically refuses to get up, and the carers can’t hang around indefinitely.

If my brother and his partner do start to find it too much they won’t hesitate to get help, that’s not an issue.

It’s really horrid, isn’t it? My father in law refused to shower or get his nails and hair cut, for several months! He was in a very expensive, fancy memory care unit - yet they said he had agency so could not be forced. Madness. We begged to have him sedated so that at least his toenails could be cut. I believe their growth is what finally stopped him (mostly) from trying to walk. We did finally get it done but he injured the nurse in the process.

On the other hand, he became very compliant in the last few weeks, and was pleasant and smiling when briefly awake. His anxiety was reduced, which was a great improvement. He just retreated into himself for the most part. He only recognized his son in the last few months.

Such a sad journey.

My dad’s illness was swift. 2 years from diagnosis to death. Or thereabouts. It got very rough, though fortunately for us he was never violent. And retained a very familiar twinkle in his eye. Unless that was unimaginations’ wishful thinking…

It’s a horrible journey. She’s going in so
many ways, even thought she’s still physically here. The thought of things getting worse but dragging on is heartbreaking. Nobody wants that, she wouldn’t want that, but it seems to happen to many.

My mum was diagnosed a couple of years ago and I think she had it a while before that and seems to be doing well! I think she has a lot longer left, it’s just a shame those years will be more limited.

I think there is sometimes a bit of projection with dementia, the person themselves can sometimes be quite content and not aware of what they have lost.

The drs cant tell you how long she will live. IME they only do this at the very end stage of life now.