Delirium, Depression or End of Life?

[Seaholly]

In the last few weeks, Mum has had some really happy, fun times and apart from the usual sundowning, things have been great.
However, in the last few days there has been a real change. She is sleeping more and more. She's getting to breakfast around 11am and is exhausted after eating and sleeps until around 1pm or even later. In the afternoon, she will either sleep or be really restless and distressed by things that haven't really happened (the usual classic dementia things like people taking her money / things / house and worrying about what train to catch and how to get 'home')

She has been talking more and more about needing to go home and collecting her things together and saying she's just not interested in what's going on around her anymore. She is also very frail and she is feeling depressed about not being able to do anything for herself. We did hire a car with wheelchair access last week and took her out for the day, which was a great success and really lifted her spirits. She'd also been really excited about moving in with OH and I, but we are waiting for planning permission and the planners are being incredibly awkward, so that's not happening any time soon.

After eating, everything is going towards digesting her food: her hands literally turn cold and purple! She is constantly feeling cold too.

The problem is that I have no idea whether this just another stage, or the beginnings of the final stage. There have been so many times when we've wondered if the end was near, or that we'd never get the 'real' mum back, but she's always managed to rally before.

Is anyone in a similar position? Thanks

 

[karaokePete]

As this has happened in the last few days I wonder if you have checked for dehydration and/or something like a UTI

 

[canary]

I was thinking exactly the same as @karaokePete
UTIs do horrible things to people with dementia and make the dementia symptoms much worse.

 

[Shedrech]

hi @Seaholly
definitely always worth contacting the GP about any concern so your mum can be checked over

 

[Seaholly]

Thank you I always do a dip for UTIs and the local surgery is very good - they keep me supplied with sample pots!
She did have a UTI and a course of Macrobid and seemed to rally a bit in energy levels, but that was only for a couple of days. Up until today, her urine has looked fine, but today it is very cloudy and orange, so another pot has been dropped off at the GP's.
There's also always someone with mum, so we are constantly making drinks and looking out for signs of dehydration - although as she sleeps more and more, this can be hard.

I think a real challenge with dementia is that all the general 'end of life' indicators are present on and off with Mum and have been for over a year now. It's particularly hard right now because ideally, we'd like to take her to the dentist, but she seems so frail! We'd also like to get her out of the house she's living in and move her to live with us...however, there's no certainty there either because we're still battling the planning authority so it may never happen. If that's the case, at some time, there is a real possibility that we're looking at a specialist nursing home, even though she doesn't want this (some days - others she does!!!) and my brother who has joint POA for heath and finance is adamant that she doesn't go into 'one of those places'.

I just wish sometimes is carers got something useful from all the experts ................... like a crystal ball

 

[Ton3]

Seaholly I totally get where you are coming from, the stages of dementia are like a minefield we dont know where MIL is on that either as like your Mum MIL is up and down all the time. Sometimes it is a UTI sometimes there is no explanation for the sudden downturn and eating/sleeping habits are all over the place too. MIL is confined to a hospital bed in the lounge now and although she is double incontinent (or was!) she seems to be unable to have a bowel movement unless placed on a commode which is getting even more difficult to do as she panics so much and stiffens up like when a child doesnt want to go into a Buggy!! She is on so much medication for all sorts of ailments (no dementia specific meds) that we sometimes think its this cocktail of different drugs either causing or adding to the issues? My wife has been MIL full time live in carer since Sept 2020 and as we live near i go round each day after work and stay over at weekends to try and support my wife and of course my MIL. we are not sure all the time that she knows who we are but at times its clear she does. Its a heartbreaking road to go down and the end is out of sight which makes this awful journey such a difficult one for us all.

I wish I could be more helpful, please just know you are not alone in your struggle, all the best to you and your dear Mum.

 

[Seaholly]

Thanks Ton3, that sounds so like Mum!
The most frustrating thing with all the professionals we've encountered so far is that none of them seems to actually want to get to the root cause of any problem. It's like, "She has dementia - end of!" I say that's defeatist nonsense (okay, I say something a bit stronger, but I'm not sharing that here!!!) because I know that with careful observation, a ton of empathy and a lot of common sense and resolve, it is possible to do so much to make at least some of her life better.

Mum, in her lucid moments, has started to talk to me more and more about dying and feeling she is coming to the end and how she just can't seem to find any pleasure or interest in much. Then, the lights go out again and she is panicking that she's on a train, or needs to get back for when the children come home; or she's angry because we've sold her land; or she just wants to go home and everyone is telling her lies.......

 

[northerndaughter]

In the last few weeks, Mum has had some really happy, fun times and apart from the usual sundowning, things have been great.
However, in the last few days there has been a real change. She is sleeping more and more. She's getting to breakfast around 11am and is exhausted after eating and sleeps until around 1pm or even later. In the afternoon, she will either sleep or be really restless and distressed by things that haven't really happened (the usual classic dementia things like people taking her money / things / house and worrying about what train to catch and how to get 'home')

She has been talking more and more about needing to go home and collecting her things together and saying she's just not interested in what's going on around her anymore. She is also very frail and she is feeling depressed about not being able to do anything for herself. We did hire a car with wheelchair access last week and took her out for the day, which was a great success and really lifted her spirits. She'd also been really excited about moving in with OH and I, but we are waiting for planning permission and the planners are being incredibly awkward, so that's not happening any time soon.

After eating, everything is going towards digesting her food: her hands literally turn cold and purple! She is constantly feeling cold too.

The problem is that I have no idea whether this just another stage, or the beginnings of the final stage. There have been so many times when we've wondered if the end was near, or that we'd never get the 'real' mum back, but she's always managed to rally before.

Is anyone in a similar position? Thanks

Sounds very much like delirium. UTI is just one cause. Theres a great leaflet on dementiaunited website under our work, delirium, education. Hope it helps.

 

[Ramblingrose]

My mothers confusion and hallucinations are worsening. She hasn't got a UTI so it is the natural progression of the disease. We know she isn't going to get any better which is only becoming harder and harder for us to deal with things.

 

[Mervategypt]

Hi, reading all ur words is just as if u r living here with me and seeing my dad. My dad 92 was a very healthy energetic man until 3years ago, then he started his journey with Dementia loss of memory then his mobility a bit by bit until now he is on a wheel chair loose his appetite to eat hear or even talk to anyone. He is only concerned with who is going to steal him or even preparing to kill him, we have a nursing at home who know hw to care for such cases. But everyday now as many as u can get he screams for help anytime in the day or night...... . I am Over whelmed even depressed to c him like that.
The dr (neurologist) gave him his Alzheimer meds and even calming meds but he is still with more illusion than even before telling me that this is his decline period. I refused to c him like that trying the best to lift his mood but he is still there. I can’t imagine him not with me and I can’t bear him lost and suffusing like that.....
thank u all....... talking ease it a bit. I will keep doing my best thank u again.

 

[Seaholly]

I've read every leaflet out there! Sometimes she has a UTI and other times it just seems to be the progression of the disease. Many times we can pinpoint it to a time in the day when something has confused her and it can take up to 24 hours, or sometimes even longer to recover from what for her is a major confusion. For us, it seems so trivial, but an example would be her grandson coming home and having a lively conversation with his dad in the next room. Just that level of background noise is enough to prevent her from understanding what it going on.

Another example is exactly what has happened this morning. She is angry and frustrated with herself as much as anyone else because she literally can't remember how to pick up a cup of coffee and have a drink. She's blaming me for 'changing things around' because earlier this morning she drank a full cup of tea with no bother.

Getting through to our GP is a lottery. There is one brilliant receptionist who will hand me a few sample jars free of charge and say 'just ring when you're bringing one in'. At the other extreme is one who seems to get a kick out of explaining the procedures very slowly to me, to explain why I can't 'just bring a sample in if the doctor hasn't asked you to'. The GP himself has said I should get in touch if I am worried...

 

[TNJJ]

I've read every leaflet out there! Sometimes she has a UTI and other times it just seems to be the progression of the disease. Many times we can pinpoint it to a time in the day when something has confused her and it can take up to 24 hours, or sometimes even longer to recover from what for her is a major confusion. For us, it seems so trivial, but an example would be her grandson coming home and having a lively conversation with his dad in the next room. Just that level of background noise is enough to prevent her from understanding what it going on.

Another example is exactly what has happened this morning. She is angry and frustrated with herself as much as anyone else because she literally can't remember how to pick up a cup of coffee and have a drink. She's blaming me for 'changing things around' because earlier this morning she drank a full cup of tea with no bother.

Getting through to our GP is a lottery. There is one brilliant receptionist who will hand me a few sample jars free of charge and say 'just ring when you're bringing one in'. At the other extreme is one who seems to get a kick out of explaining the procedures very slowly to me, to explain why I can't 'just bring a sample in if the doctor hasn't asked you to'. The GP himself has said I should get in touch if I am worried...

We have a receptionist down here like that. Although dad’s practice has joined with another we now have the “practice receptionists “ to get through.. They remind me of ?. You might get through if your lucky ?!.

 

[lollyc]

I've read every leaflet out there! Sometimes she has a UTI and other times it just seems to be the progression of the disease. Many times we can pinpoint it to a time in the day when something has confused her and it can take up to 24 hours, or sometimes even longer to recover from what for her is a major confusion. For us, it seems so trivial, but an example would be her grandson coming home and having a lively conversation with his dad in the next room. Just that level of background noise is enough to prevent her from understanding what it going on.

Another example is exactly what has happened this morning. She is angry and frustrated with herself as much as anyone else because she literally can't remember how to pick up a cup of coffee and have a drink. She's blaming me for 'changing things around' because earlier this morning she drank a full cup of tea with no bother.

Getting through to our GP is a lottery. There is one brilliant receptionist who will hand me a few sample jars free of charge and say 'just ring when you're bringing one in'. At the other extreme is one who seems to get a kick out of explaining the procedures very slowly to me, to explain why I can't 'just bring a sample in if the doctor hasn't asked you to'. The GP himself has said I should get in touch if I am worried...

That's really interesting, and shows just how different it is from surgery to surgery. We can pop in, ask for a pot, and drop a sample in, without any input from the GP. There's a tick sheet to fill in with it - which I usually ignore and just write something like "more confused than usual", and we have no problem. Luck of the draw, I suppose.

 

[Seaholly]

Someone needs to tell Mr. Javid that 'luck of the draw' isn't good enough.

I know everyone here can empathise with the fact that I am desperate for a respite break and have just spent all morning desperately trying everything to get through to mum and ending up berating myself for getting impatient and resorting to treating her as I would a toddler with a tantrum - just speaking calmly and clearly but firmly - just to get her to drink and then get her up, washed and dressed.

She's sound asleep now with the heater on and I've given her a couple of painkillers. She said she was in pain but didn't want to tell anyone where because she didn't want more things to take - but she would go to the doctor herself (which is impossible as she can't see, walk or remember even the layout of the house)