My 76 yr old mother entering Last Stage of Alzheimers

[Meero]

Hello,

My mum has had Alzheimers for about 9 years now and She is entering the beginning of the last stage which generally
can last from 1-2 years. Her main symptoms generally: decrease in appetite ( but She is still able to swallow and eat if she feels like it) .. becoming tired very easily and would sleep during the day few times .. having body aches (but still moves around and can walk by herself without assistance) .. hardly talks .. seems lost and confused .. (still has some bladder and bowel control .. few accidents here and there ) .. lost lots of weight and becoming more frail .. I guess my specific questions are from your experiences as I know it varies: From the current stage my mum is in .. how long generally does it take till she is fully bed ridden, not eating at all and losing all control of bladder and bowel .. Are we talking few months .. or 6 months .. a year .. ?? I would appreciate any insights on this and I would be grateful ... Thank you

 

[Sonya1]

Hi @Meero , it's really very difficult to guess with this horrible disease although it sounds as though onset was when your Mum was still relatively young. I can't really answer your question but can share my experience with my Dad if it may help? He has had Alzheimers from approx 2015, so 9 years also, (mid 70's) as far as we know. However he lost the majority of intelligible speech around 3 years ago and now seems only to have the occasional single word. He is on a level 2 soft diet due to swallowing issues for last 18 months and has had no bowel/bladder control or even awareness really for about 3 years. Until about 6 weeks ago he was mobile albeit prone to trying to sit down on non existent chairs/missing chairs but has had a virus which has knocked him off his legs (temporary or permanent, we really don't know yet). Behaviour is both unpredictable and challenging, with aggression. He no longer appears to recognise anyone and spends the majority of time asleep in a chair, and currently needs hoisting for all transfers. However nursing home staff still consider him to be only just in later stages! So truly, I just don't know. I have heard of people being considered end of life and then rallying..with an up/down trajectory lasting months or years. You don't mention your Mum's living situation, but if she is in a care home then staff may have an opinion which they can share with you. My Dad does seem to have lost speech and control of continence quite early on and was still considered very much 'middle' stage at that time. It seems such a rollercoaster I'm afraid

 

[SeaSwallow]

Hello @Meero and welcome to the Dementia Support Forum. I am sorry to read about your mum but hope that you find help and support here on the forum.
As @Sonya1 said everyone is different so it is hard to say exactly what course your mum will take over the next while. Please keep in regular contact with your mum’s general practitioner as they should be able to give you some insight.
You have not stated if your mum lives with you, if she does please contact your local social services to see what help is available to support you looking after her.

 

[Meero]

Hi @Meero , it's really very difficult to guess with this horrible disease although it sounds as though onset was when your Mum was still relatively young. I can't really answer your question but can share my experience with my Dad if it may help? He has had Alzheimers from approx 2015, so 9 years also, (mid 70's) as far as we know. However he lost the majority of intelligible speech around 3 years ago and now seems only to have the occasional single word. He is on a level 2 soft diet due to swallowing issues for last 18 months and has had no bowel/bladder control or even awareness really for about 3 years. Until about 6 weeks ago he was mobile albeit prone to trying to sit down on non existent chairs/missing chairs but has had a virus which has knocked him off his legs (temporary or permanent, we really don't know yet). Behaviour is both unpredictable and challenging, with aggression. He no longer appears to recognise anyone and spends the majority of time asleep in a chair, and currently needs hoisting for all transfers. However nursing home staff still consider him to be only just in later stages! So truly, I just don't know. I have heard of people being considered end of life and then rallying..with an up/down trajectory lasting months or years. You don't mention your Mum's living situation, but if she is in a care home then staff may have an opinion which they can share with you. My Dad does seem to have lost speech and control of continence quite early on and was still considered very much 'middle' stage at that time. It seems such a rollercoaster I'm afraid

Thank you Sonya … mum lives at home with Dad who used to take care of her till only 6 months ago where his mental and cognitive health dramatically deteriorated. They are both still living at home and get carers to come 5-6 days a week for a number of hours but we are waiting for even more full time help. Interesting that you said incontinence happened with your dad in middle stages . What about infections etc ? Has he been getting sick with flu , pneumonia etc ? I know its usually pneumonia that can be a killer as their immune system can no longer fight it .. my mum her immune system seems to be still holding up normally so far …

 

[Sarasa]

Hi @Meero and welcome to Dementia Support Forum. I’m sorry that you have concerns with both your parents.
My mum was considerably older when we first noticed signs of dementia in 2017/2018, though looking back I think things were beginning to unravel from about 2012, but mum was good at putting on a good show. At that point she could still do a lot for herself but she moved into care in 2019 when she was 91 as she was becoming a danger to herself and others. By 2021 her speech was very muddled and she didn’t really recognise me. By 2022 she was incontinent and although still walking was prone to falls. A hospital stay at New Year 2023 knocked out the last of her mobility. She had been eating less and less from about 2020 and was on fortified drinks. She was however pretty healthy otherwise and the care home thought she was a long way from end of life. Then in October 2023 she went downhill and died five days later. It was a real surprise to me as I thought she’d rally as she had a few months earlier, but she didn’t.
All of that is a long way of saying it is very difficult to say how long your mum has. I was glad mum died when she did as she could still feed herself and we could have some very limited conversations.
Have you considered a move into care for both your parents? There are homes that take married couples and in such a home their differing needs could be catered for but they could still be together.

 

[Meero]

Hi @Meero and welcome to Dementia Support Forum. I’m sorry that you have concerns with both your parents.
My mum was considerably older when we first noticed signs of dementia in 2017/2018, though looking back I think things were beginning to unravel from about 2012, but mum was good at putting on a good show. At that point she could still do a lot for herself but she moved into care in 2019 when she was 91 as she was becoming a danger to herself and others. By 2021 her speech was very muddled and she didn’t really recognise me. By 2022 she was incontinent and although still walking was prone to falls. A hospital stay at New Year 2023 knocked out the last of her mobility. She had been eating less and less from about 2020 and was on fortified drinks. She was however pretty healthy otherwise and the care home thought she was a long way from end of life. Then in October 2023 she went downhill and died five days later. It was a real surprise to me as I thought she’d rally as she had a few months earlier, but she didn’t.
All of that is a long way of saying it is very difficult to say how long your mum has. I was glad mum died when she did as she could still feed herself and we could have some very limited conversations.
Have you considered a move into care for both your parents? There are homes that take married couples and in such a home their differing needs could be catered for but they could still be together.

Thank you for your insight. I do appreciate it. I guess The takeaway message I got is that not all dementia people will spend months bed ridden and eating via a tube .. etc .. They could still be eating and mobile and immune system still holding up and deteriorate dramatically within days. I was not aware of that .. Thanks again . We thought about respyte care and nursing homes but they are still functioning with government carers and family attending to their needs at home ..

 

[Collywobbles]

…not all dementia people will spend months bed ridden and eating via a tube .. etc .. They could still be eating and mobile and immune system still holding up and deteriorate dramatically within days. I was not aware of that ..

As a side note, it’s very unlikely that someone with advanced dementia would be tube-fed. Stopping eating is part of the end-stage dementia process. Artificial feeding can speed this up, as limited physical resources would need to be diverted from heart, lung and brain functions, to the digestive system.

The very end can be so unpredictable. With my Granny, we were warned by her care home one evening that she was hours from passing and we should brace ourselves for bad news. She was showing all the usual signs that they would expect - deeply asleep, non-responsive, couldn’t be woken, and the characteristic rattly breathing. This was during a lockdown, so we couldn’t be with her. The next morning, she sat up and demanded a bowl of cereal and a cuppa! She passed away in her sleep a few weeks later, having eaten her tea and gone through a perfectly normal bedtime routine with staff, with no sign of her impending departure.

 

[Jaded'n'faded]

Just to add, although thr progression of dementia in the later stages is much the same for most, not many people make it to 'the end'.

My mother was a case in point - she spent her last 3 years in a care home. Her general health was excellent. After a fall she broke her hip but regained mobility and continued to walk with a frame. Her dementia deteriorated but she was still verbal. She lost her appetite but could still eat if she wanted to. She forgot her relationship to me but still showed recognition when I visited. She had a few UTIs whilst there but nothing more. Then she became 'a bit off colour' one weekend and the doctor was called. He found 'nothing in particular' but mum was clearly not herself. When I last saw her she'd gone very quiet (not her usual feisty self!) and looked really bewildered though not completely vacant. I tried to comfort her and she admitted she didn't feel well.

On the Monday morning she was awake (in bed) when the carer checked on her in the early hours and he had a brief conversation with her. When they checked her about 7am.... she'd died.

So it was unexpected but not unsurprising. I think I expected her to deteriorate further to the silent, bedbound stage (and dreaded that) because she didn't have co-morbidities but dementia decided otherwise.

I've often though that caring would be easier if we had an 'end date'. As it is, it just seems like an endless sentence.

 

[Meero]

Just to add, although thr progression of dementia in the later stages is much the same for most, not many people make it to 'the end'.

My mother was a case in point - she spent her last 3 years in a care home. Her general health was excellent. After a fall she broke her hip but regained mobility and continued to walk with a frame. Her dementia deteriorated but she was still verbal. She lost her appetite but could still eat if she wanted to. She forgot her relationship to me but still showed recognition when I visited. She had a few UTIs whilst there but nothing more. Then she became 'a bit off colour' one weekend and the doctor was called. He found 'nothing in particular' but mum was clearly not herself. When I last saw her she'd gone very quiet (not her usual feisty self!) and looked really bewildered though not completely vacant. I tried to comfort her and she admitted she didn't feel well.

On the Monday morning she was awake (in bed) when the carer checked on her in the early hours and he had a brief conversation with her. When they checked her about 7am.... she'd died.

So it was unexpected but not unsurprising. I think I expected her to deteriorate further to the silent, bedbound stage (and dreaded that) because she didn't have co-morbidities but dementia decided otherwise.

I've often though that caring would be easier if we had an 'end date'. As it is, it just seems like an endless sentence.

Thank you for your insight … very informative and I have learnt something knew .. may I ask .. whats the cause of death .. was it a sudden heart attack .. or sudden failure of any organ ? Hence she was in a generally good health .. thats what I am trying to understand and prepare myself for … thank you

 

[Just a Mumxxx]

Hi have read a few threads comments and sadly this sounds so similar to mine and wanted to join 😊😐
I read an old comment from a "rubbish daughter " don't agree with the name title!
My mum has being diagnosed with rapid vascular dementia and think is called "sundowning" she gets increasingly distressed and depressed.
She is fixated on where she lives does she own the house and missing her family she is very proud staunch Irish Catholic.
My dad has onset Parkinson's mild stages middle 70's my mother is a bit older.
My mother reduces help she has lost her vision we think can't be sure and can't ask for upsetting her.
Is very reluctant for medical assistance doesn't like hospitals.
She can't clean herself properly in all areas .
My father expects me to come over to be "jolly" but that is extremely difficult to do.
Try and advise them over help but get shouted at and I am nearly 50!!
My sibling doesn't have children and lives at little further away I am to my cost which sounds awful live over the road.
I am trying to help my older young adult child with social emotional and mental health difficulties as well as all this don't get me started on EHCP plans a different story and forum.!!
There is only so much I can do and limited.
Worried about the state of the house personal hygiene find soiled stuff around the bedrooms.
More I try to help worse it becomes.
I feel awful that I feel that my father has completely gone over the top refusing help or advice from me and my sibling
But will ring me up complaining about it all.
He is ex services both very religious very set on their ways and I don't think there is anything else I can do to help !?!
It is upsetting my children at home and I'm am getting cross all the time.
Shall I pull back a bit ? Doesn't help that I don't have a job so am more available xx

 

[SeaSwallow]

Hello @Just a Mumxxx and welcome to the Dementia Support Forum. I am so sorry to read about the difficulties that you are having trying to arrange care for your mum and dad. First of all i think that your main priority must be to support your daughter with her health issues, she should be your main concern but of course you want to ensure that your mum and dad are safe.
It is so difficult when people with dementia will not accept outside help but you are probably going to have to step back and insist that they accept some outside help. I would suggest that you contact your local social services to arrange a needs assessment for your parents to see what help they might be entitled to.

 

[Just a Mumxxx]

Hi thank you😊

 

[Woody54321]

Hi have read a few threads comments and sadly this sounds so similar to mine and wanted to join 😊😐
I read an old comment from a "rubbish daughter " don't agree with the name title!
My mum has being diagnosed with rapid vascular dementia and think is called "sundowning" she gets increasingly distressed and depressed.
She is fixated on where she lives does she own the house and missing her family she is very proud staunch Irish Catholic.
My dad has onset Parkinson's mild stages middle 70's my mother is a bit older.
My mother reduces help she has lost her vision we think can't be sure and can't ask for upsetting her.
Is very reluctant for medical assistance doesn't like hospitals.
She can't clean herself properly in all areas .
My father expects me to come over to be "jolly" but that is extremely difficult to do.
Try and advise them over help but get shouted at and I am nearly 50!!
My sibling doesn't have children and lives at little further away I am to my cost which sounds awful live over the road.
I am trying to help my older young adult child with social emotional and mental health difficulties as well as all this don't get me started on EHCP plans a different story and forum.!!
There is only so much I can do and limited.
Worried about the state of the house personal hygiene find soiled stuff around the bedrooms.
More I try to help worse it becomes.
I feel awful that I feel that my father has completely gone over the top refusing help or advice from me and my sibling
But will ring me up complaining about it all.
He is ex services both very religious very set on their ways and I don't think there is anything else I can do to help !?!
It is upsetting my children at home and I'm am getting cross all the time.
Shall I pull back a bit ? Doesn't help that I don't have a job so am more available xx

I am so sorry to hear about your situation and wanted you to know you are not alone, I am going through a similar thing, sadly my father who was very determined to look after my mother at the cost of his own mental and physical health slipped at home last October and passed away from his injuries which meant mum had to go into a home. I had tried to talk to him and suggest that mum needed to go into a care home but it was his decision to keep her at home and I am glad in a way I did not force the issue as our relationship would have suffered and he would not have been able to watch mums decline without blaming me and due to the unexpected accident I would have been crushed if we had disagreed before. The point I am trying to make is support your parents as best you can but be realistic and don't put pressure on yourself, its a hard journey and everyone here is making their own way through it xx