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Elderly parents

How do dementia patients eventually die?

119 replies

stirling · 08/10/2022 15:54

Its on my mind a lot. DM is in her fourth year and at the stage where she's drenched in urine, cannot speak a single coherent sentence, cries, depressed, but her blood tests are fine.

I'm wondering if you have any experience to share.
Thank you

OP posts:
UrslaB · 08/10/2022 17:32

Grandmother died of dementia. 96. In the end she lost the ability to swallow so when we would be trying to get her drinking or eating (even with thickening agents in drinks) she would aspirate (some of the food or drink would go into her lungs) and so she got repeated infections which took their toll. In the end the infection just accumulated damage and finished her, her lungs were too badly damaged. Three day coma and then passed.

Sympathies OP. I hated that final year where we looked after granny, there was nothing left of who she was.

Butitsnotfunnyisititsserious · 08/10/2022 17:26

But my nan essentially wasted away. She was always a large woman but when she died she was terribly thin. She lost muscle because she was either in bed or a chair. She lost the ability to chew and swallow, the last months it was soup or fluids via IV.

This is the same as mine. It's an awful disease. Mine couldn't talk at the end, it's really hard to see your family member like that. I remember seeing her be fed water via a syringe.

PurpleWisteria1 · 08/10/2022 17:25

I often wonder this also.
I have a close relation who is early 70’s. Had Alzheimer’s for around 7 years. Now in full time care home but is not that old really. Still physically ok.
But, doesn’t know who anyone is. Doubly incontenant, needs help with feeding and drinking. Walks around fine. Sits and stands all fine. Mind almost totally gone. Can’t really talk in a whole coherent sentence.
Not sure how long life goes on like this but it’s not much quality of life is it. Living for many years like this.

IthinkIsawahairbrushbackthere · 08/10/2022 17:19

This has been a hard read. My mum is in a care home - she is immobile and incontinent. Somedays she knows me, some days she doesn't. She talks about my dad a lot and doesn't seem to remember that he died 10 years ago so I don't remind her.

Mum mostly feeds herself, still drinks from a normal cup. Can't hold a conversation but is physically well on the drugs she takes for her blood pressure, arthritis, gout and ulcer. I can see she is losing weight and all I care about now is that she is comfortable.

AppleTreeOwner · 08/10/2022 17:16

Being prepared can sometimes help to ensure care and compassion at the end of their life. The Alzheimer’s society has some information which may be useful
www.alzheimers.org.uk/get-support/help-dementia-care/end-life-care-dementia#content-start

ParkheadParadise · 08/10/2022 17:14

My mum stopped eating and got weaker.
She ended up in bed the last 2 months of her life.
She got weaker and weaker and passed away peacefully with her 6 children at her bedside.

Alanisthebestdog · 08/10/2022 17:14

I’m also in the same boat, elderly mum has been in a nursing home over 5 years now. She doesn’t recognise any of us now and has been bed bound for 2 years or so. She makes noises but not meaningful nowadays. It’s really sad. She was always a big woman, size 18 to 20 for many years but is now only about 7 stone and only managed purée and liquid foods. How she is surviving I just don’t know. She got covid earlier this year but it barely affected her. I feel like she died a few years ago, I find myself talking of her in the past tense person isn’t my mum any more. I so wish we could help her to go peacefully.

LondonJax · 08/10/2022 17:11

Oh, and mum was 8 years from diagnosis to death.

LondonJax · 08/10/2022 17:10

My DM was 'lucky' (if that's the right word around dementia). She had a couple of years where she began to drift and we'd be running around propping her up. For example, she'd forget to eat. We'd discover she still had food in the freezer from the last shop.

Luckily she lived in an assisted living sheltered housing scheme so we got Wiltshire Farm Foods and one of the carers or us would come in to do a sandwich and, later in the day, to microwave her dinner.

Then she got wise to the cooking and would cook dinner at 10am - as a diabetic that led to hypos. So we moved to Wiltshire Farm Foods equivalent of Meals on Wheels. The only food in the flat then was sandwich stuff and breakfast. Her meal would come at lunch time and they'd make sure she was eating before they left (can't recommend them enough). Then the carer would do the sandwiches for the evening meal if we weren't there for the day (can't thank them enough either).

Eventually, after a major fall she was assessed in hospital and moved to a respite, then to a care home.

She liked her care home - food was excellent and, apart from incontinent knickers, you never know there was a problem.

The care home worked wonders. They even took her off of using a Zimmer frame (which respite had put her on) to using a walking stick to keep her walking. She only used the knickers for occasional urine incontinence even though the respite home said she was double incontinent. The care home doubted the double incontinence diagnosis and spent a lot of time with her paying attention to the signs and 're-potty trained her'. Apart from the odd accident (dodgy tummy) she always used the toilet right up to the end even in hospital.

I can't praise them enough as we were told at her hospital assessment that the swallowing mechanism was going. The care home always had people sitting with the residents in the dining room and noticed that she would reach for toast at the end of the meal and manage to eat it. So they gradually added 'normal' food - by the end she was enjoying unbattered fish and chips, sausage and mash and a full Christmas dinner the Christmas before she died. They thought she was misdiagnosed with a dry throat in the hospital which made it hard to swallow!

She finally died in hospital having got a chest infection that wouldn't clear. Often the way with the elderly. So I suppose old age rather than dementia got her in the end at the age of 90.

Compared to many, as I said, she was lucky. My friend's MIL ended up dying in her 'care' home, weighing next to nothing and smearing poo on the walls . Ironically hers was an expensive care home. Shocking.

Autumflower · 08/10/2022 17:09

Sadly op ,my mum is not far behind.
we also are in the 4 th year ,now in a nursing home ,on numerous meds to stop her being aggressive .following with interest because I’ve wondered the same

Hitatiks · 08/10/2022 17:02

According to the care home my mum is in, its because they stop being able to swallow.

dementedma · 08/10/2022 17:00

Dad stopped eating,got thinner and just wasted away. He slept most of the last few days,occasionally muttering to himself, then gave a few gasps and was gone

Mammed · 08/10/2022 17:00

My grandma died of covid, she almost died of flu the year before so we knew if she did catch anything then she was unlikely to survive as her immune system was severely compromised by that point.
She was fine the first week she tested positive (it was very early on in the pandemic so we had no idea what to expect) then the second week she just stopped eating, then couldn't get out of bed, then she just went to sleep and eventually her breathing stopped.

She was 84 & had been battling Alzheimer's for 10 years, by the time she died was still mobile but very unsteady on her feet & could only talk "gibberish".
It's absolutely the worst illness in the world and I'm so sorry you & your family are going through this. Flowers

Cattenberg · 08/10/2022 16:58

Both of my grandmas had dementia. One had Alzheimer’s and I’m not sure what type my other grandma had, but her memory gradually declined over decades. Both spent their final years in residential care before dying peacefully from UTIs.

EspressoPatronum · 08/10/2022 16:57

My mil had a fall, broke her hip and suffered with pneumonia twice. This caused a decline in her (already late stage) mixed dementia and she lost the ability to eat. She ended up with her softened / puréed food in her lung after not being able to swallow properly and passed away soon after.

This was roughly 6 years after diagnosis with mixed dementia. She also had diabetes and ended up with epilepsy towards the end.

It’s a horrific, heartbreaking disease.

Georgeskitchen · 08/10/2022 16:54

My mums decline took about 7 years, from mild confusion to full on dementia. She had a heart complaint for which she had declined treatment in previous years. She was in a care home for about 6 months. We were asked what treatment we wished for as she neared the end. We just said oxygen if needed. She contacted pneumonia and passed away peacefully within about 24 hours. Please don't subject your frail elderly loved one to having a peg feed procedure I have seen this in elderly people who I have cared for and how it prolonged the agony for weeks/months. Losing the ability to swallow is one of nature's ways of saying its time to go x

momonpurpose · 08/10/2022 16:53

I am so sorry. Dementia is the most horrible thing. My father lasted a year. Once he stopped swallowing on his own I'd give him ensure in a syringe. That lasted about a week and a half.

PeloFondo · 08/10/2022 16:53

Should say my mum was 72, it was 5 years after early onset diagnosis

PeloFondo · 08/10/2022 16:51

Pneumonia/sepsis for my mum. She stopped eating and drinking (I think she wanted to die)
We stopped treatment for the pneumonia, it wasn't responding to antibiotics

KickAssAngel · 08/10/2022 16:50

I nursed my father at a hospice just last year. He had dementia, then caught Covid. the staff at the hospice centre told us that eventually the brain function closes down so that even breathing stops. If nothing else happens, then yes, they lose bodily functions such as toilet and eating etc, then they will often keep missing a breath, then they go to sleep and don't wake up. My mother was in a bed next to my dad at the hospice, and I was in a room down the hallway. We were both sitting with him, chatting, then went to bed. Less than an hour later, a nurse woke us up as he'd simply stopped breathing. As someone else said, Covid was a blessing in disguise. Until he got Covid, he was able to walk around at home, although he didn't eat much, and he knew who his closest family and friends were. Getting Covid meant that the part of his life where he was stuck in a bed and not very aware was only a few weeks. It would have been terrible to see that extended over months.

oakleaffy · 08/10/2022 16:46

NancyDrooo · 08/10/2022 16:33

My grandad died weighing under 6 stone and wearing nappies, no clue who anyone was. He’d have been utterly horrified to see what became of this big, strong, proud man. The sooner euthanasia is legal, the better; it is true we wouldn’t let an animal suffer like that.

Spot on.
It's absolutely inhumane.

Care home owners grow rich on the funds of sold houses, while staff are worked to the bone on minimum wage.

I have witnessed beloved animals with terminal illness or conditions be euthanised, and it looks peaceful and humane.
But I expect to do this for humans will be a legal nightmare.

One wouldn't want someone euthanised while they still have quality of life, and certainly one would have to be wary of greedy relatives if there is property or valuable objects owned by the person.

BigWoollyJumpers · 08/10/2022 16:41

It's a terrible thing to say, but I think Covid was actually a blessing for many of us. It's the unspeakable truth, only shared with those who have had the same experience.

GLB1980 · 08/10/2022 16:36

It is hard to predict but old age and related illnesses.
End stage is a term used for the latter phase and typically includes a reluctance to eat/drink.
However a frank discussion with GP would help you.
You would probably benefit from contacting Alzheimer's society for illness plus ask GP or community mental health team for referral to an Admiral Nurse.

NancyDrooo · 08/10/2022 16:33

My grandad died weighing under 6 stone and wearing nappies, no clue who anyone was. He’d have been utterly horrified to see what became of this big, strong, proud man. The sooner euthanasia is legal, the better; it is true we wouldn’t let an animal suffer like that.

oakleaffy · 08/10/2022 16:33

stirling · 08/10/2022 15:54

Its on my mind a lot. DM is in her fourth year and at the stage where she's drenched in urine, cannot speak a single coherent sentence, cries, depressed, but her blood tests are fine.

I'm wondering if you have any experience to share.
Thank you

Hopefully, one day by elective Euthanasia as with a much loved pet if agreed to while 'Compos mentis''
None of our family want to end up dementing as you describe and all of us want euthanasia if push comes to shove.

When the ''Baby Boomers'' hit dementia age, there simply won't be the carers about to care for people who are unable to feed themselves or change themselves or care for basic hygiene.

It's awful to keep people alive with no dignity.
Who would wish that for themselves?

Not many.

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