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.

She's 94 so I seriously doubt she's got long left. Dementia or no dementia.

It’s not one of those conditions that drags on forever. Usual lifespan is about three to five years.

not an expert but a family member had it. I’m sorry to hear about your mum. She will likely need residential care at some point relatively soon.

Has she previously had a heart by pass?

My mum was diagnosed a few years ago, she sure is a lot but apparently that’s normal. Her confusion is worse at night, my brother had moved in with her and has carers that cone to do her personal care.

Thank you for your responses. It's so much more complicated being a long haul flight away!

She can currently cope 'on her own' but she isn't really on her own, she's pretty much living with my brother, albeit in a connecting part of the house.

No, no heart issues.

@BashfulClam Mine is so deaf that it's hard to know what's confusion and what is due to deafness. It's not worse in the evening though, she just seems to want to sleep all the time.

Oddly, to look at her, she looks fantastic for 94!

The consultant told my brother that steeping often is normal. Often he has to stay with her till she falls asleep at night as she gets scared like a child.

No one can answer you really. Can you talk to her doctors? Most people aged 94 don't last long. Dementia or not but you might plan for nursing home if she deteriates futher.

MIL has ok periods and then “turns” where presumably more of her brain is dying off and then there’s marked deterioration in some area or other - classic vascular dementia. Her mother lived in a care home with it for 10 years, I hope that my DMiL is not subjected to that long of it.

@HeatwaveHoratio this worries me more than her death, it's not fair is it! I think I have a warped view too as my ex MIL was in a care home and it was 12 years, 6 of which was basically slumped in a chair.

Easy it may seem on paper, talking to Dr's isn't easy (I am also in Wellington, NZ!) hence my brother is the main point of contact (and info!) I also travel a lot with work so time differences and also commitments makes it trickier than it should be.

She has been sick a few times when she has been eating (she eats well, if she isn't falling asleep...) which is a concern. She also has to be pretty much forced into getting washed by SIL, who thankfully has a nursing background so is good with that sort of thing.

There are 100 year olds in care homes. You dont know if she one year or 10. With my relative the decline was from age 93 and died 16 months after a fall from which never regained mobility age 96. So nearly four years after that noticeable decline .

My father in law slept most of the time for three years, it was horrid to watch. He was also quite deaf, so if you could get him to wake up to visit he needed a while to - get his ears working? He would speak away fine, if repetitive and on very limited subjects, once awake, until the last week.

It’s very hard to watch, and to predict how long it will last. He was 97 in the end, his body finally gave up.

Don't blame your brother for the lack of a clear answer. Nobody can give you one, unfortunately.

Purely from your description of her stage of dementia, her remaining life could well be still measured in years. But at 94 there are a lot of things that can go wrong with a body. And dementia will increase her risk of falls, aspiration pneumonia, UTIs possibly leading to sepsis, etc.

From the very first signs of vascular dementia, 10+ years is quite possible. From diagnosis something like 2 to 5 is more likely. At her age it might be less, but there's no way to know.

She really should have care package with ideally three visits a day- I’d question why this hasn’t been pursued. I think I’d get adult m social care to assess I think the would bring you some piece of mind. They would get her up, dressed, washed and fed. She would probably benefit from a home help type persona couple of times a week who would sit and do some not social stuff.

im not an expert but my grandma had dementia and was in a nursing home and DH s had a care package she 94 (no dementia but bound after a fall

It can drag on for several years or cause a catastrophic fatal stroke in the blink of an eye.

It's not the same as Alzheimer's that follows a more likely path of slow decline.

My grandma had vascular dementia and it took several years.

care home for the last six months

My dad had vascular dementia and alzheimers. He was diagnosed in his late 50s and died aged 70. However at 94, your situation is obviously hugely different.
Sounds awful to say but i would hope natural old age will hopefully come before she declines too far. Apologies for saying that, but I wouldn't wish this disease on anyone.

I asked on copilot what her life expectancy was likely to be and they said probably months rather than years, but ultimately that’s a guess rather than precise as ultimately no one can say for sure. If it were me, I would try if at all possible to come over before the end of this year. I would plan trips of my normal duration and see what support/relief I could offer DB/DSIL when there - maybe they could have a break.

I hope this isn’t too blunt but end of life duration is impossible to tell and many people survive a lot longer than anticipated, months rather than weeks or days. I think you have to make peace with the fact you may not be there at the end.

I agree completely. I think quality over quantity every time. Obviously I don’t want my Mum to die, who does, but a long horrible decline is my worst fear. It does seem to be hugely variable for how long people can hang on for, even with multiple issues and being bed bound.

Why do you aak @Mcdhotchoc?

@rookiemere Thank you, I appreciate it. I have a tricky situation as my work is humanitarian based, I’m often in or near conflict areas, and I’m based officially in New Zealand!

Symptoms do seem to be getting worse and it’s been interesting hearing other’s perspectives and experiences. Speaking to a Dr tends to often give a very different perspective or answer too.

If she has vascular dementia her heart is probably in a very bad state too. You don’t get clogged blood vessels in the brain without it being the same in the heart vessels. You just don’t.

My DM has vascular dementia. She was diagnosed this year and is declining rapidly. But she also has Parkinson’s. However, she is much younger than your DM.

At 94 with a vascular dementia diagnosis it is highly likely she will be experiencing mini strokes regularly that go unnoticed. I also have a sibling a long haul flight away and it is a very hard call. We have to accept my sibling could miss the time our DM passes. Vascular dementia usually has step down episodes. It’s likely your DM could pass very suddenly from a heart attack for example. I think you need to make peace with the fact it will be a stroke of luck if you manage to arrive in time if something changes quickly. It’s very hard.

Vascular has bouts of sudden deterioration sometimes but can carry on for years. Being all care in bed can also last years.

Do you make any effort to see your brother or mum at all? I’d be a bit cross if I was your brother and look at the effort needed by your Sil while you follow your dreams. I’d take extended leave and come over here for a bit and show you care about your brother and his situation. Your job seems to mean more to you. As someone who was equally dumped on, missing siblings always have an opinion but do nothing!