Mum is sleeping all the time and communication deteriorating

[SarahL]

Hello all,

I haven't written on here in a long while and wonder if anyone can advise me on the progression of Alzheimer's.
My Mum was diagnosed with Alzheimer's 6 years ago and went into care 4 years ago. I visit 3 - 4 times every week and have had many discussions over the years with the CH about Mum's meds, which we have readjusted on and off. At one time I thought she seemed overly sedated and afterwe changed meds she became more interactive and mobile. That was 3 years ago.

I purchased her a 'state of the art' wheel/arm chair 6 months ago as her mobility had been worsening and it saved her from being moved from wheelchair to armchair continually, which reduced her anxiety and agitation; however in the past two months she has become completely immobile, cannot eat her food independently, is very, very sleepy every time I go in and now her ability to talk seems to be going; she cannot make words. I have been talking the care home about the sleepiness as I feel her meds may need changing again. However I may also have to accept that her disease is progressing and she is moving into another stage. Does anyone have any advice/thoughts on this stage of the disease. I hadn't cried for ages, but last week shed a tear or two as it feels like I have 'lost' some more of her. I do understand the stages of grief and recognise that I have entered into another stage of loss. If anyone can share their thoughts on this stage of the illness however or if they have experienced anything similar I would be really grateful to hear their story/understanding.

Many thanks.

 

[karaokePete]

I don’t yet have experience of this but the situation does read like a progression to a late stage of your Mum’s dementia. It must be very difficult for you and I wish you the strength you need.

I can’t disagree with your request for a meds review, just in case it can bring about some improvement in quality of life.

In the hope that it can provide some guidance I’ve included below links to a Society Factsheet about late stages. If you hit the PDF part of the link you will be able to have an easier read
https://www.alzheimers.org.uk/about...iagnosis/how-dementia-progresses/later-stages
https://www.alzheimers.org.uk/media/941

 

[Amy in the US]

Hi, @SarahL. It is nice to "see" you again on TP but I'm sorry to hear about your mum and your distress.

I agree that a medication review is always a good idea. There may be some medications that are no longer needed, or doses that can be reduced. (I just recently refused cholesterol medication for my mother and am going to ask for another med review soon.) Anything that can help quality of life is worth considering. It's also a good idea, if you feel something is not right with your mum, to get it checked out. Infections and other medical issues can definitely cause problems.

Unfortunately the disease will progress and it is never easy or pleasant to watch this. Have you talked to the staff, or nurses, or GP, to see what their thoughts are? I wonder if they might have some insight or observations for you.

I wish I had some answers for you. I do know, from my own experience, that every time there is a decline or I notice an ability has been lost, it is painful and upsetting. I think I've gotten used to everything this awful disease can bring, but I keep getting surprised. I'm sorry. This is so hard.

 

[marionq]

It is worrying when you see this but seems to be how Alzheimer’s goes I’m afraid. My husband sleeps on and off throughout the day with very little medication and then from 8 pm until 7 am next day. He is more alert on the days he goes to daycare because he is surrounded by people and noise but exhausted at the end of it all. I try to get him out walking but ten minutes is as much as he can manage. I am coming to terms with what is a progressive illness. Good wishes.

 

[Linbrusco]

My Mum seems to be going down the same road.
Diagnosed with Alzheimers 5 yrs ago, in care for past 2 yrs.
Although on Quetiapine for over a year which worked quite well for agression & agitation, although not sedated she seemed to lose more and more abilities. It was very easy to blame the medication.
Early this year she had a UTI & acute delirium and ended up in hospital. Somewhat worse when back to her care home her meds were reviewed and she was only taken off bladder meds & statins.
She seemed to have a new lease in life, eating, talking & walking better. Seemed more alert.
July this year she had shingles.
August she had another UTI and lost all mobility for a week, having to be fed, hoisted etc.
Recovered from that but much more tired & a lot less aware. Mainly watches everything around her and dozes off and on.
Sometimes she still needs help with feeding and drinking.
Another UTI this past week.
Trying to take her off Quetiapine just ends up in agression and refusing personal care.
There is one other med that Mum is on at night for pain relief which shes been on for past 5 yrs which they are going to replace with paracetamol.
Its very hard now to know what is what, but with every UTI Mum declines further.

 

[Cata]

Hello all,

I haven't written on here in a long while and wonder if anyone can advise me on the progression of Alzheimer's.
My Mum was diagnosed with Alzheimer's 6 years ago and went into care 4 years ago. I visit 3 - 4 times every week and have had many discussions over the years with the CH about Mum's meds, which we have readjusted on and off. At one time I thought she seemed overly sedated and afterwe changed meds she became more interactive and mobile. That was 3 years ago.

I purchased her a 'state of the art' wheel/arm chair 6 months ago as her mobility had been worsening and it saved her from being moved from wheelchair to armchair continually, which reduced her anxiety and agitation; however in the past two months she has become completely immobile, cannot eat her food independently, is very, very sleepy every time I go in and now her ability to talk seems to be going; she cannot make words. I have been talking the care home about the sleepiness as I feel her meds may need changing again. However I may also have to accept that her disease is progressing and she is moving into another stage. Does anyone have any advice/thoughts on this stage of the disease. I hadn't cried for ages, but last week shed a tear or two as it feels like I have 'lost' some more of her. I do understand the stages of grief and recognise that I have entered into another stage of loss. If anyone can share their thoughts on this stage of the illness however or if they have experienced anything similar I would be really grateful to hear their story/understanding.

Many thanks.

I can really empathize with what you are going through right now and the stage that your mum is at . My Mum was diagnosed with vascular dementia 4 years ago . It was less than 2 years ago that she went into a care home . She is 96 and was very physically frail but had a bad stroke in June this year which left partial paralysis and she has been bed ridden since . We and the nursing staff thought we were going to lose her in June. She is sleeping most of the time , very disorientated and doesnt know who we are most of time. After the stroke we agreed that all her medication was drawn. She is on an end of life care plan . They just manage her pain and any agitation as and when required. You go through so many emotions and at the moment I feel a bit numb . I understand when you say youve lost some more of her. I can hardly see any of my mum left now as I knew her .I cannot have any conversation although she can answer simple questions at times. I sit and talk to her even when she is asleep , sometimes sing to her but she even gets confused with that. She eats a little pureed food some days but is completely skeletal and weak now and her skin is just slowly falling apart . The worst thing is we prepared for her to part from us months ago and she has now been like this for 5 months. It is desperate to watch this stage linger on . The staff are amazed and keep saying she must have a strong heart but it really would be a blessing if my mum was to slip away now .I used to feel guilty about wishing that but not now.

 

[Baz22]

I can really empathize with what you are going through right now and the stage that your mum is at . My Mum was diagnosed with vascular dementia 4 years ago . It was less than 2 years ago that she went into a care home . She is 96 and was very physically frail but had a bad stroke in June this year which left partial paralysis and she has been bed ridden since . We and the nursing staff thought we were going to lose her in June. She is sleeping most of the time , very disorientated and doesnt know who we are most of time. After the stroke we agreed that all her medication was drawn. She is on an end of life care plan . They just manage her pain and any agitation as and when required. You go through so many emotions and at the moment I feel a bit numb . I understand when you say youve lost some more of her. I can hardly see any of my mum left now as I knew her .I cannot have any conversation although she can answer simple questions at times. I sit and talk to her even when she is asleep , sometimes sing to her but she even gets confused with that. She eats a little pureed food some days but is completely skeletal and weak now and her skin is just slowly falling apart . The worst thing is we prepared for her to part from us months ago and she has now been like this for 5 months. It is desperate to watch this stage linger on . The staff are amazed and keep saying she must have a strong heart but it really would be a blessing if my mum was to slip away now .I used to feel guilty about wishing that but not now.

Hi Cata I was really interested in your post. We are probably a stage further back than you with Mum and Mum has been in a CH for just over 1 year. We also notice we are losing more of her each month and she is not the Mum we knew. Med changing has brought some short term benefits but I have started to have thoughts along the lines of "it really would be a blessing if Mum was to slip away". I feel very guilty about this. Thank you for sharing your experience.

 

[Witzend]

While my mother was still just about mobile until very late in the disease, she did sleep an awful lot. and any sort of meaningful communication was sadly a thing of the past.

At least it's better for the person to be sleeping, than distressed/confused/agitated. That's what I used to tell myself, anyway.

 

[myss]

........

I wish I had some answers for you. I do know, from my own experience, that every time there is a decline or I notice an ability has been lost, it is painful and upsetting. I think I've gotten used to everything this awful disease can bring, but I keep getting surprised. I'm sorry. This is so hard.

This brought a tear to run down my cheek out of nowhere! It described me (and probably my siblings too) quite succinctly. Just when you think you've got think on a keel and have a solution/alternative to the pwd's behaviours/issues/etc, something else comes up.

I also wish I had some answers for you @SarahL but I can tell you, my dad is more or less has gotten to that stage too having been diagnosed about 4-5 years ago, so I also think it's a progression of the illness.
He is still able to eat unaided, although we've noticed that he occasionally spills/drops bits of food from his spoon/fork. His speech is only about 30% clear/relevant and he sleeps a bit too (although we put this down to being up during the night and wandering around the house a lot). Even his mood can be largely reliant on how tired and/or hungry he is.

 

[SarahL]

Thank you so much to everyone who has replied and for sharing your experiences and knowledge. It really means a lot to me and helps to know what others are experiencing although it is so sad. I too have the mixture of feelings of not wanting my mum to die but not wanting to see her live this existence.

Last night she was admitted to hospital as she has been lethargic and sleepy for a week, not eating anything (she seems to not be able to swallow) and not talking at all; I also discovered her fluid intake has been very low so the CH finally did blood tests and her sodium levels were found very high. I was in A&E until 4am when they finally gave her some fluids and put her in an assessment ward. I am going up to the hospital again now to see what they decide for her.

While we were waiting last night she held my hand and looked at me intently; she also put her hand up to stroke my cheek at one point and I shed another of the million tears I have already cried. Thankfully she was settled and calm when I left.

I will keep you updated and my empathy and support goes out to all of you on this shared journey of ours.

 

[SarahL]

Hi, @SarahL. It is nice to "see" you again on TP but I'm sorry to hear about your mum and your distress.

I agree that a medication review is always a good idea. There may be some medications that are no longer needed, or doses that can be reduced. (I just recently refused cholesterol medication for my mother and am going to ask for another med review soon.) Anything that can help quality of life is worth considering. It's also a good idea, if you feel something is not right with your mum, to get it checked out. Infections and other medical issues can definitely cause problems.

Unfortunately the disease will progress and it is never easy or pleasant to watch this. Have you talked to the staff, or nurses, or GP, to see what their thoughts are? I wonder if they might have some insight or observations for you.

I wish I had some answers for you. I do know, from my own experience, that every time there is a decline or I notice an ability has been lost, it is painful and upsetting. I think I've gotten used to everything this awful disease can bring, but I keep getting surprised. I'm sorry. This is so hard.

Hello again Amy, thank you so much for your reply. I hope you are ok. I have sent a general update below on Mum. Will be back in touch soon.

 

[Canadian Joanne]

I think this would be a good time to review your mother's meds. Your mother's sleepiness may not be due simply to disease progression, it may be a combination of disease progression and medication. Hopefully the hospital will be able to address this properly.

My mother was in care for over 15 years and we adjusted her meds periodically. The last few years, we gradually removed all the behavioural meds. This did help with reducing her sleepiness, even though her disease was progressing.

 

[Moggymad]

"While we were waiting last night she held my hand and looked at me intently; she also put her hand up to stroke my cheek at one point and I shed another of the million tears I have already cried. Thankfully she was settled and calm when I left."

My mum does this,it brings a lump to the throat. She does it to the carers as well. She is very loving & easy to love back.
Hold that image close to your heart @SarahL it will bring you comfort. Sending best wishes x

 

[canary]

(((((((Hugs))))))))) @SarahL
If your mum has lost her swallow you could well be looking at End of Life. I think it is time to have a very frank talk with the doctor about expected outcomes. This is always a hard and upsetting discussion, but you need to know what is happening.