How long is this particular piece of string?

[Selinacroft]

I know the usual answer to the frequently asked question of how long will this go on for hence the title.
I am just looking for comparisons for those who have trodden a similar path, any clues on likely timescale?
Dad has Vascular dementia- I would say probably no Alzheimers. His mobility has been limited to shuffling one foot a couple of inches at a time and in the last week he has been struggling to do toilet transfers and obey verbal prompts for where to turn and place his feet . He is still continent but it is the practical nature of actualy getting to the commode that is becoming an issue.
At night he is very argumentative and cantankerous refusing to go to bed, take medication and get changed. Sometimes we achieve all 3 but never without tantrums, arguments and delerium . During the afternoons he seems more aware of reality and is able to reply in words that make sense, usualy yes or no but in the right places.
He's 91, stage 4 CKD, and been told the hospital don't really want him back again as they can't do anything to help. No UTI- checked by nurse today. Harder and harder to leave him alone for more than an hour without him falling or hallucinating. He spends all day just in his chair mostly with his eyes shut, still eating and drinking enough to keep him ticking over.
Can anyone enlighten me how long this could last?

 

[DMac]

Hello Selinacroft,

Oh gosh, that is a really tough question to answer! I doubt anyone could give you a definitive answer.

I wonder, though, whether a hospice may be able to help your dad, and indirectly, give you some relief, especially now that he cannot be left alone? I only mention this because I have a friend who is, sadly, in the later stages of motor neurone disease. Of course, this bears no relation to your dad's condition, but he receives support from a local hospice and they provide advice and practical support to him and his wife, who is his main carer and also feels she cannot leave him unattended.

Wishing you strength at this difficult time. xx

 

[Spamar]

How long is a piece of string? Same answer, no one knows. As she is pretty bad now, probably not many years.
MyOH had vascular plus Alzheimer's, he didn't seem to change very much for many years, then went downhill rapidly. The best you can do is deal with each new symptom as it comes along! As mum has vascular, change of symptoms result from TIAs and they can occur anywhere in the brain. Hence there is no particular order of symptoms.
Good luck!

 

[Kevinl]

I have known this guy since he was in the secure unit the day my wife moved there, I say day it was actually 2am and he shuffling round pushing a dining chair, that was over a year and a half ago, today we shared a table with him at dinner.
Some of the most frail people are still there and some of the ones that have passed away were some of the fittest and more mobile.
Obviously I have no way of knowing what other conditions some of them had, some of the mobile ones just have a fall, go to hospital and never come out, some of the frail bed ridded or chair bound ones seem to just hang on in there.
There really is no logic in it.
K

 

[esmeralda]

The not knowing how long is so very hard. We don't want our pwd to die but the hard fact is that is the only thing which will make it stop, and sometimes we want it to stop. It's the most awful dilemma. The thing you want most is the thing you fear most. There can be blessings along the way, and I hope you can find some. Big hug.
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[Selinacroft]

Thank you all for sharing your thoughts. DMac, I doubt the hospice would accept him as I asked D/N if he was regarded as End of Life and she said no, in fact she was thinking of discharging him They have been 2 or 3 times a week for the last 5 years and 18 months of that coming e very day with ulcers/infections/pressure sores/skin trears but all these seem to be as good as they can be right now.
I tried to get Dad to bed early today to avoid another fall and not heard a peep out of him for 2 hours- usualy ranting at this time of night so strangely quiet. I have a sleeping tablet still to give him if he kicks off later.

 

[Marnie63]

The not knowing how long is so very hard. We don't want our pwd to die but the hard fact is that is the only thing which will make it stop, and sometimes we want it to stop. It's the most awful dilemma. The thing you want most is the thing you fear most. There can be blessings along the way, and I hope you can find some. Big hug.
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It is indeed the most awful dilemma esmeralda, which is why it's so damn hard on the emotions. Never has the term 'emotional rollercoaster' been more apt.

SC - I often wonder how long the piece of string is here. I'll be coming up to two years soon of caring for mum (also with VaD). I often want it stop, though the longer it goes on, the harder I think I will find it when it does eventually stop, as the whole process has brought us even closer together.

 

[Selinacroft]

Hi Marnie
I guess you could say that is a positive you have found. I think I've always been close to Dad but when I walk the dog and remember the places we went to together, it feels as though I have already lost him and I am left with just a cantankerous, ungrateful , awkward and hard to look after lost soul. He has been silent now this evening for 3 hours and I am worrying because he is normally shouting at me, demanding things, complaining about things, calling me for trivial things -but this evening-silence.
Think I prefer the moaning- silence is worrying.

 

[DMac]

DMac, I doubt the hospice would accept him as I asked D/N if he was regarded as End of Life and she said no...
I tried to get Dad to bed early today to avoid another fall and not heard a peep out of him for 2 hours- usualy ranting at this time of night so strangely quiet. I have a sleeping tablet still to give him if he kicks off later.

It is true that my friend's hospice won't treat people whose symptoms have stabilised. Of course, their resources are limited. It may be an idea to hold at the back of your mind if anything changes, though.

I do hope that you and he have a restful night, for all the right reasons! Try not to worry.

 

[Pear trees]

A clairvoyant told me my 90 year old mum would live to 93, but her GP says she could live till 100 barring illness falls etc. She has had VD for 5 years but for the last year sleeps all the time except for feeding and personal care, and does not speak or recognise anyone.
So my bit of string is elastic!

 

[Marnie63]

Hi Marnie
I guess you could say that is a positive you have found. I think I've always been close to Dad but when I walk the dog and remember the places we went to together, it feels as though I have already lost him and I am left with just a cantankerous, ungrateful , awkward and hard to look after lost soul. He has been silent now this evening for 3 hours and I am worrying because he is normally shouting at me, demanding things, complaining about things, calling me for trivial things -but this evening-silence.
Think I prefer the moaning- silence is worrying.

Yes, I guess it is a positive. I do try to focus more on the positive things at the moment as that really helps me through the particularly bad times. So my positives at the moment would be that mum is generally very compliant with me, I have been able to hold down a tiny part time job for nearly a year, I'm able to meet friends for lunch occasionally, we have an excellent carer from the agency and I have a small number of very supportive friends. Of course there are the bads like I can't do anything on a whim, or travel, or work more hours, and I really hate the tiny income I have to currently survive on. But, focusing on the positives still helps!

I've found with mum that there are phases - so hopefully your dad's 'awkward' phase may well pass. That's what helps keep me going with mum too. I know the next phase will be hard, but I know what we currently have probably won't last for too long.

I would make the most of the silence - maybe your dad will get calmer with age? How old is he? My mum is 91.

 

[Marnie63]

A clairvoyant told me my 90 year old mum would live to 93, but her GP says she could live till 100 barring illness falls etc. She has had VD for 5 years but for the last year sleeps all the time except for feeding and personal care, and does not speak or recognise anyone.
So my bit of string is elastic!

I think the same applies to my 91 year old mum - apart from the dementia, she is physically pretty healthy for her age - just high BP and Type 2 diabetes (which may have added to the dementia/stroke). But, she had a terrible chest infection in the winter and her breathing was so bad that I thought she was on the way out. There was a tussle with the out of hours GP - me sitting on the bed - him standing at the foot of the bed - mum in bed, breathing really badly. Him telling me she was really bad and he wanted to call an ambulance, me telling him I'd had enough of the hospital experiences and no more of that for mum, we would take our chances. She pulled through, but if she gets another nasty like that, I know it will hit her badly. I suspect had she been hospitalised, she wouldn't be here right now. In fact I'm sure the confusion of it all would have finished her off. (Sorry NHS - you are wonderful in other ways, but not for dementia care!).

 

[Witzend]

It's the Great Unknown, isn't it, and so hard when the person's quality of life is already very poor. And most especially when you are caring for them at home, with all the stress and exhaustion that so often entails.

My mother had Alz. from her early 80s, and by the time she was about 95 I had honestly begun to think she'd see me out. Apart from the advanced dementia, she had no other health problems, no heart or BP issues.
However she suddenly went downhill very quickly shortly after her 97th birthday, and it was all over within 36 hours.
I should stress that she was very unusual, though. During her very nearly 8 years in her (dementia) care home, I saw so many other residents arrive, decline, and go. I think even the staff had begun to think she would go on for ever.

 

[Slugsta]

It is a horrible thing to say - but I am very thankful for the cancer that will end mum's life, rather than allowing her to linger with severe dementia