How much longer will this go on?

PammyT

Registered User
Oct 25, 2019
18
0
My mum was officially diagnosed in 2011. She’s been in a care home almost 6 years.

Despite several instances where we thought it was the end, she still keeps going. She’s 85 years old and sleeps all the time apart from meals - she’s fed food which is puréed and eats well, although she is underweight.

How long can she keep going for - I visit but she’s totally unaware who I am - I go out of a sense of duty more than anything else?
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,332
0
Nottinghamshire
I’m sorry to read about your mum @PammyT it must be awful for you as well as her. I don’t think anyone can answer your question although I know other members have been through the rollercoaster you describe.

Has something happened recently which makes you think the end may be near?
 

PammyT

Registered User
Oct 25, 2019
18
0
Not particularly no, she seems to have episodes of being very agitated, she looks tormented in her face. Her pain relief is under control. There’s no communication, no interaction, nothing ?
 

PammyT

Registered User
Oct 25, 2019
18
0
I feel for you? This is exactly how my mum is and how I feel about it. It’s the most cruel disease I have ever known and the worst thing is there’s no end point.
 

Sheelagh7

Registered User
Feb 25, 2022
56
0
I sympathise with you @PammyT, my mum was exactly the same. She nearly died in May 2021 but somehow she pulled through but that meant she spent the last year in a nursing home with zero quality of life stuck in a bed on liquidised food. She didn't recognise us and had no stimulation at all, mainly sleeping but being woken up to reposition her and eat. My brother & I used to dread going to see her. I used to hold her hand and we would chat away to each other and tell old stories of family life in the hope that she could hear our voices. She died a couple of weeks ago and to be honest we are so relieved that her suffering is finally over. It was so cruel to make her suffer for an extra year longer than she needed to, but that's what the medical profession have to do sadly. We're just organising the funeral and will be able to look to the future soon, knowing that we did all we could for mum.
Take care, we're all with you.
 

Lynmax

Registered User
Nov 1, 2016
1,045
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Having my mum live for months or years in a semi conscious state was something I dreaded. My mum stopped eating or drinking after getting Covid for the second time this year and after two awful hospital admissions for IV fluids, we agreed with the care home and her GP that she would not longer go to hospital but would receive palliative care at the care home with support from district nurses.

This is exactly what happened, she began to decline suddenly one morning, the GP saw her at mid day and prescribed EOL medication but she died very peacefully two hours later with all her children by her side - no need for any medication. We were a bit shocked at the speed of her death but so relieved that she did not have to endure a protracted period of time immobile in bed being fed puréed food and heavily medicated.

I have every sympathy for those of you with loved ones in such circumstances having supported a friend whose mother was in the same care home as my mum and spent six years bed bound and unable to eat or drink without assistance. My friend had to stop visiting her as it was too stressful and was making her ill, her husband also had dementia, and just phoned or called in to talk to carers once a month.
 

JHA

Registered User
Aug 7, 2021
716
0
What a lot of you describe is what I hope does not happen to my mom. She has LWD and is currently in a care home, prefers her own company does not mix easily, is relatively self sufficient but has no real understanding of her care needs and how to keep herself safe. Present day and the past gets muddled up and at times she talks to me about me, both my boys have been cloned and I appear to have developed a third child.

I can see a very gradual decline in that last week she gave me some biscuits back that I had taken her in as she said they were too dry to swallow and this week she put her cardigan on but only did one arm, her walking is also more of a shuffle but she is still getting around. I honestly dread her future part of me keeps thinking can I bring her to my house but I already know the answer to that one (I managed six days over Christmas before I admitted defeat - she had begun to wander at night so respite was organised with a view to permanent care).
 

PammyT

Registered User
Oct 25, 2019
18
0
Thank you everyone for your kind comments. It’s a comfort knowing that there are others who feel the same as I do.
 

Sazpeas36

New member
May 24, 2022
1
0
my mil was diagnosed dementia, aged 57. In 2005 she went into a home and 1st year we were told to complete 'DNR' forms as survival was 12months to 2/3 years. She has been bedridden since 2007, fed, bathed, dressed, weighs 6 stone, needs help to swallow, contorted arms and legs. Over the years we have been told to prepare ourselves, last time march 2022 but out of hours doctor who had never seen her before panicked and sent her to hospital against everyones wishes. I got her back in the home 24 hours later. She bounces back each time. All these years family members have said you wouldn't let an animal live this way. She spent 15 yrs looking after her mother at home and always said she never wanted to live like that. It's heart breaking knowing she is no longer the person her grandkids knew or her own kids, that she doted on. Worst and most cruel disease ever.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,248
0
High Peak
my mil was diagnosed dementia, aged 57. In 2005 she went into a home and 1st year we were told to complete 'DNR' forms as survival was 12months to 2/3 years. She has been bedridden since 2007, fed, bathed, dressed, weighs 6 stone, needs help to swallow, contorted arms and legs. Over the years we have been told to prepare ourselves, last time march 2022 but out of hours doctor who had never seen her before panicked and sent her to hospital against everyones wishes. I got her back in the home 24 hours later. She bounces back each time. All these years family members have said you wouldn't let an animal live this way. She spent 15 yrs looking after her mother at home and always said she never wanted to live like that. It's heart breaking knowing she is no longer the person her grandkids knew or her own kids, that she doted on. Worst and most cruel disease ever.
This is just heartbreaking. I am so sorry you and your family are going through this.
 

Duggies-girl

Registered User
Sep 6, 2017
3,618
0
my mil was diagnosed dementia, aged 57. In 2005 she went into a home and 1st year we were told to complete 'DNR' forms as survival was 12months to 2/3 years. She has been bedridden since 2007, fed, bathed, dressed, weighs 6 stone, needs help to swallow, contorted arms and legs. Over the years we have been told to prepare ourselves, last time march 2022 but out of hours doctor who had never seen her before panicked and sent her to hospital against everyones wishes. I got her back in the home 24 hours later. She bounces back each time. All these years family members have said you wouldn't let an animal live this way. She spent 15 yrs looking after her mother at home and always said she never wanted to live like that. It's heart breaking knowing she is no longer the person her grandkids knew or her own kids, that she doted on. Worst and most cruel disease ever.
That sounds absolutely dreadful @Sazpeas36 I really can't imagine how you and your family have coped all these years. That is far far too long to exist like that and I am very sorry that it has happened.
 

PammyT

Registered User
Oct 25, 2019
18
0
This is absolutely heartbreaking ?. It seems there is no “standard” course for this disease to take, single person follows a different pathway ?.
 

Duggies-girl

Registered User
Sep 6, 2017
3,618
0
I will always say the difference between dementia care and pallitive cancer care is so far apart . its Cruel and I would use the word barbaric
My dad had alzhiemers and terminal cancer. The cancer wasn't really a problem, we could deal with that most of the time but the dementia just made everything so much harder.
 

Frank24

Registered User
Feb 13, 2018
420
0
my mil was diagnosed dementia, aged 57. In 2005 she went into a home and 1st year we were told to complete 'DNR' forms as survival was 12months to 2/3 years. She has been bedridden since 2007, fed, bathed, dressed, weighs 6 stone, needs help to swallow, contorted arms and legs. Over the years we have been told to prepare ourselves, last time march 2022 but out of hours doctor who had never seen her before panicked and sent her to hospital against everyones wishes. I got her back in the home 24 hours later. She bounces back each time. All these years family members have said you wouldn't let an animal live this way. She spent 15 yrs looking after her mother at home and always said she never wanted to live like that. It's heart breaking knowing she is no longer the person her grandkids knew or her own kids, that she doted on. Worst and most cruel disease ever.
So sad I am so sorry
 

Firecatcher

Registered User
Jan 6, 2020
574
0
Unlike other terminal illnesses there’s no set pattern for dementia. My impression is that people are living longer because they have everything medicine has to offer thrown at them. My advice to people is to make an advanced directive saying that you don’t want treatment for any conditions that might hasten your death and definitely no tube feeding or intravenous fluids. I absolutely dread the the thought of my Mum living for years with this awful disease and I know she wouldn’t want this.
 
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Lulu51

Registered User
Oct 30, 2022
28
0
my mil was diagnosed dementia, aged 57. In 2005 she went into a home and 1st year we were told to complete 'DNR' forms as survival was 12months to 2/3 years. She has been bedridden since 2007, fed, bathed, dressed, weighs 6 stone, needs help to swallow, contorted arms and legs. Over the years we have been told to prepare ourselves, last time march 2022 but out of hours doctor who had never seen her before panicked and sent her to hospital against everyones wishes. I got her back in the home 24 hours later. She bounces back each time. All these years family members have said you wouldn't let an animal live this way. She spent 15 yrs looking after her mother at home and always said she never wanted to live like that. It's heart breaking knowing she is no longer the person her grandkids knew or her own kids, that she doted on. Worst and most cruel disease ever.
Im so sorry agree with you its totally cruel so so wrong . The laws wrong of the governing nursing body the stress it must have caused you, Im scared for what the future holds for my own mom. Its sounds awful but its beyond me- if a loved one can no longer talk or recognise you as family member or know your name or get out of bed or feed themselves- it is cruelty for that patient with Dementia and cruelty on the visiting carer family - - they allow "DNR" but dont allow youthenasia? .
No one wants a loved one to die - no one wants to see their loved one being kept alive in a vegative state.
The law needs to change its undignified to watch just a vessel lie in a bed if the brain is no longer functioning - if someones in a coma they turn of life support when deemed dead . Bless you and again so sorry to read your post one of many sad stories totally un-dignified.