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How much longer will this go on?

PammyT

Registered User
Oct 25, 2019
17
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
6,326
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
17
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 😢
 

15moterbike

Registered User
Jan 17, 2022
131
0
So horrid isn’t it . My mum has been in a NH for years in bed for over 2 . She can’t move her head at all it’s permently in one position , Same with rest of her body apart from involuntary arm flinging . bruises all down one arm , been on puréed diet for years now her care plan says unsafe to swallow . Coughing and chocking face all screwed up needing lorazepam at times as she is so agitated . Obviously has no idea who we are hasn’t for years , makes no eye contact with anyone . Just shouts no words that make sense . we got called in 2 months ago as thought it was the end with secreations but recovered . I know some people disagree but it’s so cruel now there is not 1 second qol . Swallowing is becoming more and more difficult she is skin and bones and I hope each day she will be alloweed to be put out of her misery . X
 

PammyT

Registered User
Oct 25, 2019
17
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
60
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
991
0
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
631
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).
 

15moterbike

Registered User
Jan 17, 2022
131
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.
Hope your okay my mum has been like this over 2 years it's so cruel . Take care
 

PammyT

Registered User
Oct 25, 2019
17
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
3,213
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
3,297
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
17
0
This is absolutely heartbreaking 💔. It seems there is no “standard” course for this disease to take, single person follows a different pathway 😢.
 

15moterbike

Registered User
Jan 17, 2022
131
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.
This is totally horrid . I hope their is a kind end to this soon as I do with my own mum
 

15moterbike

Registered User
Jan 17, 2022
131
0
Hi remember some ladies in the care home I worked in in this sad situation, it's heartbreaking to witness, so sorry x
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
 

Duggies-girl

Registered User
Sep 6, 2017
3,297
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
346
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