Dementia

[warmmfeet]

Have got an elderly FIL with dementia who now spends approx 20 hours a day in bed.

Kind of a tricky situation, he was diagnosed during 2020 lockdown and then discharged by the dementia clinic and referred back to the GP for management.

MiL doesn't want any more involvement from the dementia clinic. She didn't find them useful.

We are wondering if the increased time in bed means he's progressed to the more severe stages. GP said it's likely to have progressed but can't be specific about how advanced things are without various tests and MiL isn't keen on pursuing. She seems to just want to look after him at home as best she can. He can still stand and walk and (mostly) get to the toilet when needed. As of yet MiL doesn't feel she needs support from carers. We all think it would be great for her.

His speech is slurred and he eats a soft diet.

It's very sad. I just wondered if anyone has been through it? Is this near the end?

I would say not if he’s still mobile, but they can suddenly decline.

My father has been bedbound for 18 months, with no obvious decline in that time.

It will be fine until it’s not fine. And if MIL wants to do it herself I would say that’s probably better for him than care home at this point. Even in a care home they wouldn’t be doing compulsory walks or anything. I think decline is inevitable. And happiness and well-being for all is more important than trying to hold back the inevitable. Once he can no longer get himself up and out of bed additional input will be needed.

I doesn't sound like it's necessarily that near the end.
I can see why MIL might not want clinic and GP involvement because there's not really a huge amount to be done unless there is something 'acute' wrong with him.
However, it would be good if she could be helped to plan ahead and start involving carers so that the help could be increased over time as his care needs increase. He could live for months or years and in that time, it would be very stressful for all involved if for example she couldn't manage personal care (which he will end up needing), pressure sores etc.
It's often very very difficult to get people to plan ahead though, in which case, at some point there will probably be a crisis and something will have to be done at that point.

No not necessarily, I look after many people with dementia, they can have years left bed bound, Providing they are being adequately looked after it doesn’t seem to make any difference .

Thanks to everyone for sharing your experiences, that's v helpful and interesting.

I think he's extremely well looked after by my MiL tbh. She knows she will need some help down the line and we are working on trying to help her plan this but at the moment it's quite difficult for her.

I do wish you hadn’t said that! One of my fears is DH dying before DF, and it’s looking increasingly likely that that will happen.

I wouldn't say he's near the end, from my experience anyway. My mother has dementia and she's classed as being in the late stages - she can't feed herself anymore, or go to the toilet (the ability to do that went about 2-3 years ago). She can talk but it's getting harder to understand her and it's gibberish anyway, she hasn't known who we are, or what year it is or anything for about 2-3 years. She is able to walk but only really supported. We've been told she could be another few years like this (though she's obviously very frail so a dose of covid or pneumonia could kill her first). Mum has been in a care home for 3 years now, and it was the best decision for everyone.

@DocOck thanks for sharing. I'm so sorry - I didn't realise it could drag on like that in the late stages. What a cruel thing. It does sound like a care home is the best place for her needs

@MereDintofPandiculation hi I just wanted to ask, has he been mostly asleep and bed bound? Or just more comfortable in bed but conscious. FiL sleeps 20 hours out of 24.

Probably sleeping about 16hours. Maybe more. Takes ages to eat, then sleeps most of the time he’s not eating. They got him up and into a chair for his 100th birthday, but he spent his 101th in bed.

@MereDintofPandiculation oh wow! 101. Well I'm glad he was comfortable for his 101st.
My FiL only 75.

He was comfortable in a chair for his100th, but he slept for about three days afterwards

My Dad was diagnosed with Alzheimer's and Vascular Dementia, in 2015 and he was getting slowly worse until around a year ago, then he went downhill very fast and has continued to decline sharply since December last year, when it was mentioned that he may not survive until Christmas. He is still here, unable to speak coherently or understand anything that is being said to him. He is no longer eating very much at all and only drinking a little. He is having trouble swallowing and he is unable to keep warm. He is very thin and frail and sleeping almost all day but very restless at night as he doesn't know where he is and he is hallucinating constantly, so he thinks all kinds of people are in the house and doesn't understand why my Mum can't make them go away. The final indignity was becoming incontinent and now we have been told that "he ticks all the boxes" for the final stages of Dementia and that he is dying but that this is a process and no-one knows how long it will take. It has been a shocking and distressing journey to witness and it feels like we lost my Dad a long time ago as he has been robbed of his mental, & physical health, his character, his interest in life and his ability to relate to us. He is 91 & the current feeling is that he has weeks to a month to live but who knows because Dementia is still not very well understood.

I feel your pain @indianrunnerduck My 70 year old mum has the same diagnosis, probably diagnosed in 2019 I think but there were definite signs before that. She's been in a care home since 2020 and has been on a speedy decline. Hasn't known really who anyone is since then, became incontinent along time ago and last week we were told she was basically likely to go at any minute and on end of life care. But she perked up in 48 hours and now nobody knows whats what. I said my goodbyes last week, how many more times will I need to do that? They can't give any indication if its week, months...because they can go on for a very long time with very limited food and water as they don't really expend any energy.

@DocOck thank you! It is a nightmare, my Mum promised my Dad that he could stay at home until the end, as she was adamant that he would be terrified in hospital or a care home and therefore I was inevitably on board to support both of them. My Mum is 89, with her own diminished cognitive function. I have a POA for both of them. I realise now that neither of us had anything like enough information or experience to take this on. My Mum has to deal with the daily grind of listening to the same phrase being repeated 30 times an hour and all the rest as I don't live with them. But I am back and forth constantly and on the phone several times a day and organising their whole lives in the background. I am completely and utterly exhausted and realise now that we are both waiting for him to die, that I am repeating to myself "nothing lasts forever" which sounds shocking written down but I feel that I have unwittingly surrendered my life to this cause. As you say, how many times will we have to gear ourselves up to say goodbye, only for them to somehow rally round once again? I love my Dad but he will never recover even a tiny fraction of his former self or quality of life & I long for us all to be set free from this suffering.

@indianrunnerduck It is relentless. The receptiveness can drive you insane. My mum can't really talk now, and like you said in your other post, she's gone, I lost her years ago.

If you're not on it already, you'll find this thread really supportive https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

OP it totally depends - my father was mobile and fairly sprightly compared to other residents in the nursing home. He was still walking unaided up until a few days before he died.

However he has lost interest in food, only eating a few spoons a day and was therefore very skinny. In the end he got a chest infection which he couldn't recover from. But there were residents who had been wheelchair bound for years and seemed to be going strong.

Although possibly if your FIL is sleeping loads that could be a sign. It's hard because you just don't know - I thought my dad would last forever somehow, his body seemed to just keep going.

I'm so sorry, it's truly awful. I think my family is still traumatised from what we went through caring for my father at home for a few years.
My mother had said she would not put him in a home while he still knew who we were and where he was. By the time we made the difficult decision to move him to a care home, we realised the process was going to take longer than we thought, trying to find somewhere that had a place and would take him was so difficult.
Eventually, a few months later he got a sick and wouldn't eat or drink for us, so ended up in hospital, and they wouldn't let him go home - they got him a place.
I would say if your father doesn't recognise you or your mother, he won't know that he is not at home. I know it's a heartbreaking decision, but he wouldn't want you to run yourselves into the ground caring for him.

@MagnificentHats Thank you for sharing. Even if my Mum would consider a care home, I have a feeling we may have left it too late, we live in a rural/coastal area which isn't well served by support services & facilities. We do have a carer coming in to give My Dad a shower, hair wash & shave three times a week (as he became averse to getting washed, showered, dressed this year) also he has, I am grateful to say, just been accepted for hospice at home support, now that he is thought to be close to the actively dying stage. They don't provide caring or day to day nursing but they do keep an eye on how things are changing & are committed to being there towards the end, to ensure that people have a comfortable & pain free death and that family members are informed and supported, leading up to & after the death. I may be naive but I hope we can muddle through, doing our best, until it's all over and then begin to recover.

Im dreading this with my step MIL
how is it best to tackle it - I dont want my dad to face it alone but she's very stubborn and started falling . They have 3 new hip's between them so frail
just sold the car shes too tight to pay for taxis im not near by
patience - patience i keep muttering when i come off the phone to him advice please

@ednclouda It is a nightmare but every person with dementia is different. With the benefit of hindsight, I am questioning the choice I made to go along with my Mum's determination to keep my Dad at home until the end, because the end has been immensely difficult and far more complicated than I realised. It has taken a massive toll on my Mum and me. My Mum because she bears the brunt of my Dad's behaviour & it feels to her as if she is caring for a demented stranger, rather than her husband. I also have this to cope with, when I am there but even when I am not I am on red alert the whole time, waiting for the next accident or false alarm and also managing both of their lives, because I have a POA for them both.
I would suggest seeking independent help and advice sooner rather than later because the full extent of the chaos crept up on me while I was busy dealing with the every day stuff for them. I found the Alzheimer's society very helpful for advice and information, they have a phone line, website and will send out very clear and concise fact sheets on a wide range of subjects related to the beginning, the end and everything in between. Dementia UK & Age UK are very helpful too, both provide help and advice. Eventually my Dad was assessed by two GPs and from there, referrals were made to the adult mental health team, who carried out their assessments & to the Admiral nurse service, which led to a referral to hospice at home nursing support. You do have to be persistent because all these services are underfunded and understaffed, so they are spread very thinly. It took about a year of constantly emailing and phoning to finally get any help for my Dad, even though, by then, he was diagnosed with end stage Vascular Dementia and Alzheimer's and he ticked all the boxes & had no quality of life and no interest in life. I am very grateful for the help I have had but I would still say that caring for someone at home is exhausting, debilitating & all consuming, as the help is mainly advice & moral support, delivered by phone and weekly visits, until someone is actively dying, which is when hospice care is invaluable. However, I also understand that finding a care home for people at the end stages of dementia is like looking for the pot of gold at the end of the rainbow.

I really agree with everything @indianrunnerduck says. You make a decision that is right at the time - to support a parent in their own home - and it's manageable, albeit with a lot of planning and time and money. Then over the years, the planning, time and money that's needed just grow and grow. And even when you're not actually doing anything, you're on constant alert for the inevitable phonecall.
One day you look round and realise that you haven't had a proper week off for years, because every time you try to, there's a crisis. And any holiday booked is last minute and therefore massively expensive because you've been trying to find the 'right time'. And there's never a right time because you arrive to a load of emails about a fall or a blocked toilet, or a flood or blown fuses.
I don't know what the solution is, especially when you're trying desperately to respect a parent's wishes to stay at home, but personally I wonder whether it hasn't been fair to my DD especially, and actually even to me, that DM's needs have been put first.
I wonder whether the situation sometimes needs to be looked at holistically rather than just centring the parent. Or maybe that is just hideously selfish. I have no idea.
Best wishes to those trying to deal with this stuff.

it can ive worked in care home for over 20 plus years i have had 100 year olds walking round when it is your own family im still clueless hope my working hours i can juggle work kids and his mother i was going to work full time now the bills are going up all the time my eldest is leaving school now this next year i might see a change in her since having my children it is all been about his mother nothing else glad i found this on here thanks everyone