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Rapid decline

BananaSundae

Registered User
May 29, 2020
10
Hi everyone,

It’s been really helpful to read all the support on here and I wondered if anyone might have some advice to offer in our situation.

Mum was diagnosed with atypical AD about 5 years ago in her v early 70s. She is otherwise in really good health. Her decline has been gradual, characterised by plateaus and steps. She has been in a wonderful CH for the last 3y. They have, to the best of all our knowledge (as no one was tested in early days), remained Covid-free. By March, I’d have said she was moderate-late stage. Very unwell but still knew who we all were and was able to enjoy a reasonable degree of quality of life. She could speak although you couldn’t often understand what she was saying, she was reasonably mobile although struggling with balance, fully independent in terms of eating and drinking.

She was admitted to hospital in early April with a severe infection, we never found out what it was, all tests including Covid were negative. She was almost totally non-responsive although conscious. She stayed in for a week and it was treated as Covid, but never came out with any new symptoms so clearly hadn’t picked it up when in hospital, hence one of the reasons we think it probably was Covid.

Anyway, since then (8 weeks), she has made absolutely zero progress in her recovery. She cannot say a single word, can’t weight bear or stand at all, can’t sit straight in a wheelchair, can’t eat or drink independently and often doesn’t recognise when she’s being presented with food, and is totally disoriented. I genuinely think that for the first time, she has absolutely no idea who we are. She’s asleep most of the day and night, she’s not on any medication now. If anything, she’s continuing to decline slowly although this could be because she’s not been able to do anything.

It feels to me like we are reaching the end butI’m in despair as I don’t know whether this rapid decline is normal or something else. It’s clear it’s not just going to get better which is what we had all expected to some degree.

With apologies for the long post, have other people experienced this very sudden and severe decline, what happened next, is it normal (surely not for this long after an infection?) or any chance she could perk up? What are your experiences, what should I be prepared for, obv without anyone having a crystal ball etc)?

I just feel like there is this huge void, she’s just not there anymore and I don’t know if she will her come back.

Thanks so much for tour
 

BananaSundae

Registered User
May 29, 2020
10
Not sure what happened at the end of the post! It was meant to say:


I just feel like there is this huge void, she’s just not there anymore and I don’t know if she will ever come back.

Thanks so much for your help, x
 

Agzy

Registered User
Nov 16, 2016
1,449
Moreton, Wirral. UK.
@BananaSundae this sounds so stressful and clearly worrying. I have no idea what many have caused i but my OH, Pauline, who has Alzheimer’s, was hospitalised in February with severe UTI and since discharge the massive decline is so obvious. I did ask one of the doctor in the hospital if such infections and reactions could worsen symptoms and he said it could but it can happen without as a plaque or tangle takes a turn for the worst as it were. Not much help I know and certainly not much help in coping I’m afraid. Big hugs x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,552
Kent
Hello @BananaSundae


In general any infection seems to be more damaging to those with dementia than those without and if your mum had a severe infection it could be the cause of her rapid downturn.

Also as @Agzy said from his own experience, something happening in the brain could be responsible too.

It must be quite a shock for you to witness especially when there is no definite explanation.

We have a great cliche with dementia which is going with the flow or take each day as it comes. There is no knowing whether or not your mum will recover. It really is a wait and see time.

I`m sorry you are so distressed.
 

canary

Registered User
Feb 25, 2014
12,942
South coast
Hello @BananaSundae and welcome to DTP.
Im so sorry to hear about your mum. A big change like that is so upsetting. Im afraid that infections cause absolute havoc in people with dementia and often do result in dramatic downturns. My MIL had vascular dementia, fell and got a fracture and then several UTIs imeadiately afterwards. Before this she had been living independently at her home, but following the UTIs she had to move to a nursing home and passed away within a few months. Ive also noticed a decline in OH since the beginning of the year after several UTI requiring hospitalisation.
 

BananaSundae

Registered User
May 29, 2020
10
Thanks for taking the time to reply, sorry to hear about your experiences with your loved ones. It’s so difficult as I’m finding that most people (particularly her GP) are happy to write it off as “just” the AD. That’s an interesting explanation about the potential changes in the brain too, I think it’s too much of a coincidence for the infection not to have had an impact, but just impossible to know what it has been. It is just awful not being able to visit, I knew in March when I was last there that things could change but wasn’t expecting it to be this sudden. I probably have to accept that this long after the infection / trigger there isn’t going to be a significant improvement is there?
 

BananaSundae

Registered User
May 29, 2020
10
Also is this rapid decline / presentation similar to those you have seen at eol or does it progress further? I just don’t know how her body is able to keep going, sorry if any of my questions are intrusive or upsetting
 

Agzy

Registered User
Nov 16, 2016
1,449
Moreton, Wirral. UK.
@BananaSundae this sounds so stressful and clearly worrying. I have no idea what many have caused i but my OH, Pauline, who has Alzheimer’s, was hospitalised in February with severe UTI and since discharge the massive decline is so obvious. I did ask one of the doctor in the hospital if such infections and reactions could worsen symptoms and he said it could but it can happen without as a plaque or tangle takes a turn for the worst as it were. Not much help I know and certainly not much help in coping I’m afraid. Big hugs x
 

Pete1

Registered User
Jul 16, 2019
809
Hi @BananaSundae, so sorry to hear about your Mum's decline, it is very difficult to witness for sure - especially the lack of recognition. I can say from my experience severe infections can cause significant impairment, my Mum's decline was very rapid (caused by infection). They have obviously tested your Mum so it is difficult to know what has happened and if there is no infection present now they can't obviously treat her.

If Mum isn't eating or drinking they should be looking at end of life care - I don't know if that topic has been broached?
 

BananaSundae

Registered User
May 29, 2020
10
Thanks Pete, these are exactly the sort of things I have been thinking. Sorry to hear about your mum, was she unwell for a long time after the infection and did you find out what it was?
No one has mentioned eol care to me, but this is why I wanted to ask people’s experience here. Until now, I think everyone has just been hoping that she will get a bit better but it’s clearly not happening. She can’t eat or drink independently at all, she will have a drink if it’s offered to her but I don’t think the home are giving me the full picture of how much she’s having. I can’t see it being more than a few ml at a time. As for eating, they are trying to feed her but she’s not recognising food in front of her, or even in her mouth. So she will maybe have a few small mouthfuls of food a day if that. I’ve asked if we can talk to the palliative care team for their advice, I guess my question here really is whether this is consistent with other people’s experience at eol? i don’t want to be insensitive but it’s so hard to talk to people about it irl.
 

Palerider

Registered User
Aug 9, 2015
1,858
North West
Hello @BananaSundae, a difficult time for you. I agree with the others, but always keep at the back of your mind dementia is complex and also a dynamic disease. Its progression can be very different from person to person, depending on how the disease affects the brain. It's very hard to tell if infection is the cause of the decline or the disease itself in the end. The brain can't repair this damage, so it is unlikely that she will recover.

Your mum isn't taking food, its true that visual perception diminishes in dementia, but so also does the part of the brain that tells us we are hungry. This becomes the new normal for someone that has deteriorated with the disease and my own mum has recently dramatically declined as she no longer eats and barely drinks anything. This can be sustained for a short while, but eventually it will lead to further general decline and is a signpost that the end stage is arrived at or certainly close to it. There are other signs which you can google, but in short it can be hard to tell if this means they are approaching end-of-life. Its also difficult to give a time frame. What is important is that they above all else are comfortable as they can be, and that needs broaching. Some people get through the end of their life very comfortably and yet others will need interventions as they take this last part of the journey.

It is important that you dicuss this with her GP and the CH if you feel that EOL is approaching and see what the consensus is in general. There is absolutely nothing wrong with your question, but the answer needs to come from those who care for your mum as well as your own observation and insight and to plan the next steps as best you can. Hoping you find some resolution soon
 

BananaSundae

Registered User
May 29, 2020
10
Thanks @Palerider , I know it’s different for everyone, we have been living with it for 5 years and mum’s AD is very unusual. We also had a long and difficult EOL for my father so I’m trying to do what we can now to make things easier later. It’s more about asking about some kind of benchmark as to other people’s actual experiences as I don’t know anyone who has seen a similarly rapid decline to talk to. Mum’s GP isn’t great unfortunately, whenever I’ve approached her about anything in the past she’s brushed it off as “just the AD”, which naturally I’m unhappy with in these circumstances especially. The infection and the change were not a coincidence at all, that’s the one thing we are quite sure on. Obviously the main challenge for me is that I can’t be there, I haven’t been allowed in since March, so it’s really hard to judge for myself how she is. That’s the reason it’s so helpful to hear whether this is something that other people have been through and what I can do to help her through the next steps.
 

Pete1

Registered User
Jul 16, 2019
809
I’ve asked if we can talk to the palliative care team for their advice, I guess my question here really is whether this is consistent with other people’s experience at eol? i don’t want to be insensitive but it’s so hard to talk to people about it irl.
Hi @BananaSundae, it isn't insensitive. I can say it is consistent with what happened with both my Mum and Dad (who also had dementia and other underlying issues). I have to say with Mum the GP was incredibly helpful and we worked out a plan for palliative care. In fairness to the Care Home had very good insight as to what was happening. Sadly it doesn't sound as though you have the support that you need from the GP, but it is probably worth discussing again, but seeking the advice of the palliative care team and the Care Home staff seems to be a good plan to me.
 

Palerider

Registered User
Aug 9, 2015
1,858
North West
To be fair @BananaSundae I am in the same situation as @Pete1 , mums GP has worked with me although I barely know her (mums GP changed when she moved care homes).

Its very hard to get answers, but as I have said before on other topics sometimes you do have to push matters, it seems the way of the world in dementia care.

Its hard to move on from the moment someone declines, but to be fair to the GP you spoke to they are right, it is the AD. People with AD are more prone to infections and not likely to recover decline (without getting into complicated explanations). I think it might be worth raising this and saying that you are concerned she is now at a very advanced stage.

Is there any possibility the CH will let you see her, even if its from a window if they can?
 

BananaSundae

Registered User
May 29, 2020
10
Thank you both, no the CH has said that I’m still unable to visit, potentially because we haven’t had an open conversation about whether or not she is nearing eol. @Palerider I have raised my concerns with them so it may be that they can allow a visit, it would make such a difference although would be very upsetting. I am also interested in what you say about complicated explanations as I work in science, so if you could point towards any studies which are good in this regard I’d be grateful. It’s just that dementia pathways aren’t my speciality at all. I agree about pushing though, it’s something we’ve had to do at every step with mum which makes things much harder. Like you, she changed GP when she moved to the CH from one who’d known her for 30 years, I’m glad you’ve both had supportive GPs in your cases. It is somewhat reassuring to know that this can be what happens, also disappointing of course as means I can’t get my hopes up about her making any kind of recovery. This is one of the hardest things about AD isn’t it, you want to cling on to hope but you know that what you really need to cling onto is what you have now as it will soon be taken from you. Hope everyone is coping ok in these difficult times, I will update with what the CH say about a palliative referral but just being able to talk about it is helping.
 

Palerider

Registered User
Aug 9, 2015
1,858
North West
I've been having time out and just noticed your post.

I've attached one article that looks at the direct link of infection causing decline in AD, there are others, which I don't have the time to find them now, but will dig them out (they are somehwere on my PC). But its not just the infection that does damage, its the inflammatory response to it by the body. More recent work has linked infection and immune dysfunction to AD which again is complex stuff to read round. But what these further studies also show is that there is a strong link between infection, the immune system response and AD as a cause as well as exacerbation of the disease. Work is still ongoing around this.

A study that looks at decline due to infection is attached as a PDF for you
 

Attachments

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canary

Registered User
Feb 25, 2014
12,942
South coast
@BananaSundae
Re the referral to palliative care. The trouble is that although what you describe is certainly severe/final stage, this does not necessarily mean End of Life. People with dementia can live in this state for many months (one member on here had a mum who was like this for two years, she said) and in the absence of other signs, they will probably not consider her End of Life. And the trouble is, that there is no knowing how long she will be like this. It could be months/years or it could only be a few weeks, so I can understand their reticence. I was told 3 times that mum was at End of Life as she had stopped eating and drinking completely, only for her to rally and start eating and drinking again. When she did, eventually, get to End of Life she went 17 days with no food or fluid whatsoever (which I had not thought was possible) before she passed away.

The final stage can be a real roller coaster and it seems to me that many people with dementia seem to hang on to life much longer than you would expect.