How many of us are caring for a PWD over 90?

[Pollytickle]

Mum will be 93 in October but my cousin was in her early seventies when she passed two weeks ago. We were only told of her Alz diagnosis eighteen months ago, had a nasty fall after Christmas & they found cancer while operating to repair her hip

Guess the moral of the story is, you just will not know when your - or anyone else's - time is up.

 

[Witzend]

My mother showed the first signs of dementia in her early 80s. She went into her care home at 89 - she was pretty bad by then, zero short term memory, etc., and lived till a month after her 97th birthday, despite a broken hip at 91 or 2. Her general health was very robust, but for the last couple of years she was in a pitiful state - not bed bound and still just about mobile, but not knowing any of her family, no clue about anything, and incontinent on top. She was no longer able to enjoy any activities, hardly spoke, and if she ever did it was more or less gobbledegook.

I often wished she could just slip away in her sleep, since her former self would have been so appalled at what she'd become. I had almost begun to think she'd see me out, and I'm sure the care home staff had begun to think she'd go on for ever, but when it did finally come the decline was very rapid - it was all over within 36 hours.

I will never feel bad for wishing she'd slipped away sooner - it was a pitiful apology for an existence, and she'd been getting no fun or enjoyment out of life for years.

 

[Pear trees]

My mum was 90 in April and was diagnosed 5 years ago, and is very fit from her head downwards. A clairvoyant told me she would die aged 93 after a short illness.
She has absolutely no quality of life and needs assistance with everything, and could stay in this living death for 3 or more years.
I can only hope she dies peacefully in her sleep long before then.

 

[doodle1]

It's a sad time isn't it these end stages. Mum is at the same stage more or less as your mum was, Witzend , altho we do have the odd day where there is a rational moment. I hope my daughters would care for me as I have for mum but I tell them to find a nice home and get on with their lives. It is this limbo land that is so hard...caring for someone who only responds in ten second bursts if you are lucky.
Would I do it again? Yes and no ....I read on another thread that Lavender wished she had been firmer in the beginning taking on the parent role earlier...I really get that. I too have been and occasionally still am a near basket case.
Yet do I believe in euthanasia? No and mum who altho all of her life could be an extremely difficult cow, to put it politely, had such character and life force would have wanted life at all costs....
Roll on the heart attack.....

 

[Witzend]

It's a sad time isn't it these end stages. Mum is at the same stage more or less as your mum was, Witzend , altho we do have the odd day where there is a rational moment. I hope my daughters would care for me as I have for mum but I tell them to find a nice home and get on with their lives. It is this limbo land that is so hard...caring for someone who only responds in ten second bursts if you are lucky.
Would I do it again? Yes and no ....I read on another thread that Lavender wished she had been firmer in the beginning taking on the parent role earlier...I really get that. I too have been and occasionally still am a near basket case.
Yet do I believe in euthanasia? No and mum who altho all of her life could be an extremely difficult cow, to put it politely, had such character and life force would have wanted life at all costs....
Roll on the heart attack.....

There was a man in my mother's CH who was still physically fit, who was obviously in torment with anger and frustration. He had been there only a very short time when he became aggressive - would shout and sweep all his food and drink off the table, and throw chairs about. I felt so sorry for his wife, who was often there and had obviously done her best to look after him at home, until it just became too much.

But I used to wonder how long they could keep him there, since he was frightening the other residents, and could easily have injured someone. One day he wasn't there any more, and I assumed that he'd had to be moved. But no, he'd had a fatal heart attack, and I don't mind admitting that my first thought was that it was a blessing, both for him and his wife and family who'd had to witness his terrible torment.

 

[PollyP.]

Hi Doodle1

My Mum will be 101 in August this year. She was diagnosed with Alzheimers in 2009. when she was only a "spring chicken" !.

When my Dad died in 2008 we brought her to live with us (in a purpose built bungalow next to our house) She was great for a few years (on Aricept at the time) but things got so that she needed 24/7 care.

She is now in a wonderful care home (not private one) and the staff are amazing. But I had no idea that she would survive so long and now it's so sad seeing her, although she can walk around and eats very well, is not on any medication (after lots of trials with different meds which she couldn't cope with) , there is no enjoyment in life for her. I am just hoping and praying that she will pass away peacefully in her sleep, but sometimes I think she could outlive me (I'm 72)

Pauline
xx

 

[Primrose19]

Mum's 90th birthday was last month, she has been in a CH since last October. She is very well physically now with proper meals and care but of course, isn't very happy about things! There doesn't seem to have been much change in the AD over the last year (apart from the crisis that got her into the home), just different imaginary stories.

 

[SnowWhite]

My mum is 93 and was only diagnosed with Alzheimer's last autumn. She's been in a care home since Xmas. Social workers tell me she really isn't that bad yet but her legs keep giving way so she would never cope in her own house.

We have an odd good day but a lot of days when she's very low and depressed. In her mind she still thinks she could live at home, do her garden etc.

I feel enormous guilt because she's not as happy as she was but I do try my best and visit every other day and also have her at my house most Sundays for the day.

If my mum was happy and mobile I would want her to go on to 100 but I am hoping she doesn't go on for too many more years. She is forever telling me that she wishes she could walk up straight and unaided or go for a walk by herself and I feel sad for her because I can't help with that.

As part of his work my hubby has to go into the homes of many elderly people, many of whom have dementia now but who were fine when he visited them over the years. He finds it very sad to see people deteriorate. Some of them are living in filthy conditions with mouldy food, flies everywhere and they stink of urine. At least all of us on here are involved with our family members with dementia so we can assure they are as well looked after as possible. A lot of people have no one to look out for them.

 

[Marnie63]

My mum is 93 and was only diagnosed with Alzheimer's last autumn. She's been in a care home since Xmas. Social workers tell me she really isn't that bad yet but her legs keep giving way so she would never cope in her own house.

We have an odd good day but a lot of days when she's very low and depressed. In her mind she still thinks she could live at home, do her garden etc.

I feel enormous guilt because she's not as happy as she was but I do try my best and visit every other day and also have her at my house most Sundays for the day.

If my mum was happy and mobile I would want her to go on to 100 but I am hoping she doesn't go on for too many more years. She is forever telling me that she wishes she could walk up straight and unaided or go for a walk by herself and I feel sad for her because I can't help with that.

As part of his work my hubby has to go into the homes of many elderly people, many of whom have dementia now but who were fine when he visited them over the years. He finds it very sad to see people deteriorate. Some of them are living in filthy conditions with mouldy food, flies everywhere and they stink of urine. At least all of us on here are involved with our family members with dementia so we can assure they are as well looked after as possible. A lot of people have no one to look out for them.

How very sad SnowWhite for those people who your husband visits. You know, it's hard enough keeping a PWD clean, fed, toileted, etc., when you care for them 24/7, so I can well imagine what a terrible state people must get into if they, as you say, have no one to look out for them. Presumably if your husband were to see someone in a very bad state, then he would let Social Services know? At least someone who has mental capacity could ask someone for help, but I wonder how many poor souls there are out there who (like my mum) are oblivious to there being any problems, but existing alone in a terrible state. If I left mum alone for a few days I dread to think what state she and the house would be in when I returned.

This disease is truly dreadful.

 

[BJS]

My dad is 94. Along with AD and vascular dementia, he is registered blind and cannot now walk. He lives at home with 24/7 care. I live 250 miles away. The stress is unbearable. He does have some quality of life as he loves being taken out in his wheelchair and listening to talking books but his world has shrunk to that. He improved in donepizil but that could be temporary respite. Still, better that MIL, who spent last 2 years of her life in nappies in a bed hardly talking or being awake. A living death and awful for her family. As a society and with medical care we are very good at keeping people alive but I don't believe that is right. I hope my dad passes peacefully in his sleep and sooner rather than later when he will get even worse. Am I bad for thinking/feeling that? I don't think so

 

[Marnie63]

It's a tough one BJS - I think most of us would agree that in certain stages of dementia we would all like to see some way of 'releasing' our loved ones from the torture, but how do we have the right to take away someone's life before a natural death does? I struggle with that one - if and when mum gets to an even more horrific stage of this disease, if someone were to come to me with a pill or a drink to give her to end her misery, I'm not sure I would be able to administer it.

I think currently perhaps the only way to achieve this is to 'adjust' the medical care - it is now so good at keeping alive, as you say, when years ago these same people would not have survived beyond some of their ailments. But, again, is it right to withhold something which gives someone more life, whatever their suffering (especially if they lack capacity to have a say)? Maybe it is, but I still would not want the responsibility!

You're not bad for having those thoughts - I'm sure we all have them. I certainly do. I would much rather mum passed away peacefully in her sleep one day before she becomes immobile, bedridden, and is unable to communicate.

 

[doodle1]

I don't think BJS was suggesting anything other than a gentle passing away in her sleep which is what I to be honest pray for too.
What I find so sad reading this thread is how the body still goes on for so long when the mind has sort of said I've had enough.
When I started this thread I thought that perhaps there would be relatively few people in their nineties or beyond - that perhaps other ailments had taken over and people had died earlier. I find this completely depressing to be honest. I have been caring for mum (and dad) on and off , more on than off for the last ten years and the prospect of her lasting till she is 100 is quite frankly horrific. Of course I still love her and have managed to keep her in her own home but and it is a big BUT it has been at the cost of my own independence...
As it is for all of us in this situation".........big hugs and thanks to all who have replied ..my heart goes out to you all

 

[LilyJ]

My M-in-L lives with us and has just had her 96th birthday. It sure is tough! But as the gerantologist has said she's got a Rolls Royce engine in the body of a more inferior car - she has restricted mobility as well as the dementia. She takes no medication other than calcium. I'm the one popping the blood pressure pills!

 

[Caroleca]

My M-in-L lives with us and has just had her 96th birthday. It sure is tough! But as the gerantologist has said she's got a Rolls Royce engine in the body of a more inferior car - she has restricted mobility as well as the dementia. She takes no medication other than calcium. I'm the one popping the blood pressure pills!

Oy my...that is amazing! I hear you on the caregivers popping the pills !

 

[Witzend]

I don't know about anybody else, but I was once asked to make the decision.
An aunt of mine, late 80s with advanced dementia (she had no children) was in a very nice care home. She had recurrent UTIs - she had always been prone to such things - and each time it would take a long time for them to get her back to some sort of 'normal'.

One day I had a call to say she was refusing food and drink after the umpteenth UTI. I was asked whether we wanted her taken to hospital and put on a drip, or given palliative care where she was - without the drip she was certainly going to die. It was an awful decision - all the rest of the family were away or otherwise out of contact. I was put in touch with her GP, who was lovely. I could only ask what he would do if it were his much-loved aunt.

He said he'd leave her where she was, where they'd keep her comfortable, rather than send her to a noisy hospital to be poked about by strangers - especially given that at her stage of dementia she wouldn't have a clue what was going on, or why. He said that given her history it was only going to happen again in a few weeks or months.

It took a lot of heart searching, but I did think this was what she'd have wanted for herself, if she'd been able to understand. She hadn't been getting any enjoyment out of life for quite a while.

A cousin who was back in contact, or I, sat with her for much of the time. She was nearly always asleep, and did not seem to be in any discomfort. Staff continued to offer fluids and things like yoghurt, but she would invariably close her mouth and turn her head away.

The CH staff were lovely, and everything possible was done to keep her comfortable. She slipped away quite peacefully after about a week.
Although it was such an awful decision at the time, I never regretted it afterwards. I'm quite sure the person she was before, would have said, 'For heaven's sake, just let me go.'

I would have made the same decision for my mother, if the situation had ever arisen, but thankfully it never did. And given that she was that much older than my aunt, with even more advanced dementia, I'm not sure anyone would have thought it at all kind to try to keep her going just because it was possible to do so.

 

[BJS]

I don't know about anybody else, but I was once asked to make the decision.
An aunt of mine, late 80s with advanced dementia (she had no children) was in a very nice care home. She had recurrent UTIs - she had always been prone to such things - and each time it would take a long time for them to get her back to some sort of 'normal'.

One day I had a call to say she was refusing food and drink after the umpteenth UTI. I was asked whether we wanted her taken to hospital and put on a drip, or given palliative care where she was - without the drip she was certainly going to die. It was an awful decision - all the rest of the family were away or otherwise out of contact. I was put in touch with her GP, who was lovely. I could only ask what he would do if it were his much-loved aunt.

He said he'd leave her where she was, where they'd keep her comfortable, rather than send her to a noisy hospital to be poked about by strangers - especially given that at her stage of dementia she wouldn't have a clue what was going on, or why. He said that given her history it was only going to happen again in a few weeks or months.

It took a lot of heart searching, but I did think this was what she'd have wanted for herself, if she'd been able to understand. She hadn't been getting any enjoyment out of life for quite a while.

A cousin who was back in contact, or I, sat with her for much of the time. She was nearly always asleep, and did not seem to be in any discomfort. Staff continued to offer fluids and things like yoghurt, but she would invariably close her mouth and turn her head away.

The CH staff were lovely, and everything possible was done to keep her comfortable. She slipped away quite peacefully after about a week.
Although it was such an awful decision at the time, I never regretted it afterwards. I'm quite sure the person she was before, would have said, 'For heaven's sake, just let me go.'

I would have made the same decision for my mother, if the situation had ever arisen, but thankfully it never did. And given that she was that much older than my aunt, with even more advanced dementia, I'm not sure anyone would have thought it at all kind to try to keep her going just because it was possible to do so.

I admire you for your decision. Totally right in my opinion. We had asked for MIL not to be taken to hospital but several times when the CH called an ambulance they took her in. Very distressing for everyone. My father has a DNR - the idea of someone trying to restart his heart for example with paddles etc is awful. He often feels he has had enough and I think would hate the situation he (and his family) are in if he was the man he used to be. It just seems to get worse and worse and I am very low. My heart goes out to everyone else in this dreadful situation

 

[Wozzie]

Mums nearly 89, diagnosed last July with Alzheimer's and vascular dementia, she's now in a care home and has good days and bad days
My honest opinion ...... I wish she'd "gone" before this horrendous disease took hold.
Mum would absolutely hate the person she's becoming,
I feel so desperately sorry for everyone suffering from this disease and also for all you wonderful carers xxx
Anne

 

[Selinacroft]

BJS - I totally respect your decision to. I was in a similar situation with Dad in as much that he had gone into acute kidney failure and was unresponsive. D/N was here and asked if I wanted him admitted to hospital or left at home. I chose hospital-perhaps the wrong decison- 6 weeks in ward mostly on AB drips, sepsis and returned home to 3 weeks of bedbound with double up care 4 x a day. Has he picked up-well yes but still highly confused and frustrated at lack of mobility, grumbling at everything, unable to sleep-quality of life? I don't think so, DNR now in place but ABs still come evey week or so. I'm not sure I'd make the same decision again.