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Slipping away with little quality of life - different feedback from care home

15moterbike

Registered User
Jan 17, 2022
131
0
My mother's last 3 years were horrendous and she wasn't considered 'end of life' even when she was!

In that time she was constantly anxious, unhappy, agitated, sometimes aggressive, subject to hallucinations, incontinent and completely bewildered. She wasn't on any meds at all.

I watched her go through this until she acquired a 'slight infection' which was never identified and she died a week later. It has left me severely traumatised. At no time in those last 3 years did she have any quality of life, in fact she was living out her previously expressed worst nightmare.

Did anyone benefit from her being alive for those last 3 years? No. Unless you count the care home share holders - it cost mum £150,000 to pay for the privilege of that dementia life sentence.
As with alora this is so sad and for me a true reflection on what my mum is going through atm . It is awful visiting i try and visit every fortnight as live away but im thinking i will wait abit longer as mum was so distressed last time and she has no idea who we are . I did ask the nurse to give her some medication to help settle her and she did but they are always reluctant as they say it will make her to sleepy 😪 and then she won’t eat . She eats very little now swallow is poor chest often wet. We were called to see her 2 months ago when she aspirated and I really hoped she would slip away but she cleared it and still needs suction at times . It’s living hell as you say a constant nightmare . I pray each day for a phone call to say she is at peace . It’s heartbreaking and beyond cruel
 

15moterbike

Registered User
Jan 17, 2022
131
0
Been at thus stage for 2 years its the swallow going now . Before this sectioned residential to.nursing home hallucinations falls etc etc . If mum had cancer she would have beenEol a long time ago
 

Unicorn1

Registered User
Feb 1, 2022
13
0
Bangor Northern Ireland
Hi all, I’ve not posted for a while but was on here a lot prior to my brother going into a care home and this site was immensely helpful in pointing me in the right direction, thank you all for that. My brother has been in a lovely care home for a year now receiving nursing care. Initially for the first 6 weeks he seemed to improve and almost enjoy being there despite how much he said he wanted to stay in his home. After living alone for some 25 years I think he actually enjoyed seeing people around him. However since those early weeks he has deteriorated at a rapid pace. He hardly talks now and has very limited vocabulary, is doubly incontinent and has to have help with literally everything and in the last 2 months he sleeps for most of the day. When I visit he just stares out the window and no longer recognises the family members in the memory album and I don’t see any recognition in his eyes when he sees me.. Due to a catalogue of Covid cases at his care home, I have only been able to visit once since Christmas. Last Monday the care home nurse rang to say my brother had tested positive for Covid but had no symptoms but two days on from there, they said he started sleeping a lot more, and refusing food and drink. My query is this: since the Covid diagnosis I get daily calls from the home updating me on his condition which i appreciate but it seems to be that each staff member gives me a different perspective. The medical staff who call say he’s ‘comfortable’, the careers say ‘he’s absolutely fine’ until I ask if he’s eating/drinking and they then say ‘no, but we’re doing our best to with his favourite milkshakes but he only takes a few mouthfuls then falls asleep’. Am I right in thinking that they are holding back on how he really is? I know it’s probably impossible for them to be certain of exactly how he is but I sense that they’re just keeping the worst from me? In general the home is lovely, as are the staff and he’s definitely in the best place. I wonder if anyone else on here has felt the same?
My father in law is 92 and in a specialist hospital dementia unit - he's been there over five months after being diagnosed with Alzheimers and has deteriorated rapidly during that time. Like you we get very mixed messages from the staff alternating between he's fine and settled to he's violent and aggressive. I don't necessarily think they are holding back but it depends on who you speak to and how busy they are- that's what I find anyway. I always tie myself in knots over thinking have I asked the right questions so now as thoughts pop into my head I write them down to ask the staff next time I'm speaking to them on the phone. With covid restrictions we aren't allowed to visit except once a week so I understand your frustrations. Alzheimers is such a horrible disease and the person can have moments when they are OK but they are few and far between as the disease progresses. My own opinion is that it is the feeling of being powerless and that you 'should or could do more' are overwhelming at times but I have learned that's OK. You can't do any more that you have been and unfortunately we all have to come to a level of acceptance that it's out of our control and certainly not what we wish for our loved ones. Your brother is still there albeit locked in his own world, it's very sad for you but try to focus on the good memories you shared in the past. Take care of yourself and try to live your life well in memory of you brother - I am sure that would be what he would wish for you. I send my kindest regards for being on this emotional roller coaster which seems unending - it's not in anyone's control unfortunately and it's totally natural to feel the way you do. Big hugs to you!
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,208
0
High Peak
As with alora this is so sad and for me a true reflection on what my mum is going through atm . It is awful visiting i try and visit every fortnight as live away but im thinking i will wait abit longer as mum was so distressed last time and she has no idea who we are . I did ask the nurse to give her some medication to help settle her and she did but they are always reluctant as they say it will make her to sleepy 😪 and then she won’t eat . She eats very little now swallow is poor chest often wet. We were called to see her 2 months ago when she aspirated and I really hoped she would slip away but she cleared it and still needs suction at times . It’s living hell as you say a constant nightmare . I pray each day for a phone call to say she is at peace . It’s heartbreaking and beyond cruel
@15moterbike and @Alora thank you for your posts. Yes, it was awful but my mum's experience of dementia was 'fairly normal' and others go through far worse.

My point really was about quality of life. Often, if I told anyone about mum they'd say, 'Well, at least she's still with you.' But I'd think, 'Yes - but to what end? She may be alive but it's not an existence anyone would choose.' If she'd been the smiley contented lady from the dementia posters, the one who is basically happy but forgets your name sometimes and can't find her glasses, if that was mum it would have been different. As it was, it just seemed incredibly cruel to 'make her' endure those last three years. It's not as if she was going to get better.

There's an old thread of mine on here somewhere, titled, 'It's Monday and I don't want to go.' That's how it was. I felt as though the Powers That Be had decided it wasn't enough for mum to go through that hell, they wanted me to go and watch it happening every week too, because.... well, just because she was my mum I suppose - it's not as if my visits served any purpose.
 

15moterbike

Registered User
Jan 17, 2022
131
0
Unfortunately, with dementia everything happens so slowly in the later stages, because its the brain that is deteriorating, not the body.
Her body is a skeleton she gets fed she chockes every few days they suction the food out . She can't control her own saliva. She has skin tears where her skin is like paper. Her head is permantly in one position. She has parkinsons as well. 2 years of bed care her body is as exhausted as her brain
 

15moterbike

Registered User
Jan 17, 2022
131
0
@15moterbike and @Alora thank you for your posts. Yes, it was awful but my mum's experience of dementia was 'fairly normal' and others go through far worse.

My point really was about quality of life. Often, if I told anyone about mum they'd say, 'Well, at least she's still with you.' But I'd think, 'Yes - but to what end? She may be alive but it's not an existence anyone would choose.' If she'd been the smiley contented lady from the dementia posters, the one who is basically happy but forgets your name sometimes and can't find her glasses, if that was mum it would have been different. As it was, it just seemed incredibly cruel to 'make her' endure those last three years. It's not as if she was going to get better.

There's an old thread of mine on here somewhere, titled, 'It's Monday and I don't want to go.' That's how it was. I felt as though the Powers That Be had decided it wasn't enough for mum to go through that hell, they wanted me to go and watch it happening every week too, because.... well, just because she was my mum I suppose - it's not as if my visits served any purpose.
Its a living death
 

canary

Registered User
Feb 25, 2014
18,483
0
South coast
Her body is a skeleton she gets fed she chockes every few days they suction the food out . She can't control her own saliva. She has skin tears where her skin is like paper. Her head is permantly in one position. She has parkinsons as well. 2 years of bed care her body is as exhausted as her brain
Im sorry to hear all of this. I probably didnt express myself very well, but although there is undeniable effects on the body, the place that it all starts in is the brain - the brain regulates all movements and functions, so as the brain cells die mobility is lost along with everything else (like swallowing), Even Parkinsons is regulated by the brain, due to neurones in the brain that produce dopamine dying. Cancer is terrible and I am not minimising it, but IMO it rarely causes the ravages that dementia does.
 

15moterbike

Registered User
Jan 17, 2022
131
0
Im sorry to hear all of this. I probably didnt express myself very well, but although there is undeniable effects on the body, the place that it all starts in is the brain - the brain regulates all movements and functions, so as the brain cells die mobility is lost along with everything else (like swallowing), Even Parkinsons is regulated by the brain, due to neurones in the brain that produce dopamine dying. Cancer is terrible and I am not minimising it, but IMO it rarely causes the ravages that dementia does.
I’m a cancer nurse I see how it ravages the body but cancer patients get excellent palliative care , my mum is in living hell and has no dignity no qol she will be fed to she chokes and aspirates again it’s torture and hell and inhumane , I will continue to pray she goes to see my dad her brothers and sisters mum and dad etc etc , I will have a break from here as I think I’m upsetting people , my mum is a living dying skeleton she is in hell I wish her and everyone else peace
 

GillP

Registered User
Aug 11, 2021
1,450
0
I’m a cancer nurse I see how it ravages the body but cancer patients get excellent palliative care , my mum is in living hell and has no dignity no qol she will be fed to she chokes and aspirates again it’s torture and hell and inhumane , I will continue to pray she goes to see my dad her brothers and sisters mum and dad etc etc , I will have a break from here as I think I’m upsetting people , my mum is a living dying skeleton she is in hell I wish her and everyone else peace
I hope that you will continue to use the forum if it helps you. I believe it is a place where we can be honest and share our feelings. We all need support and an outlet during the difficult times we face. I agree with so much that you have written.

I too get frustrated by some of the images used to promote dementia charities and services, although I am sure that they do reflect the very early stages. Similarly I feel frustrated when I see the different ways that dementia and cancer are treated and funded.

I wish you well. Do look after yourself x
 

Sheelagh7

Registered User
Feb 25, 2022
60
0
@15moterbike @canary please stay on the forum, I agree with everything you both say. It is a living hell that we all wish will end soon. I find it really helps to read other people's posts, it makes me realise I'm not the only one going through this horror.

I've just received a call from mum's nursing home to say this afternoon's visit is cancelled due to another covid outbreak. I'm sad that it will be at least another week before I get to see her again, but in many respects it is also a relief not to visit. I usually visit with my brother and we tend to get a feeling of doom whenever we enter the home, not that it's a bad nursing home, just the reality of the seemingly never ending situation we are in and the fact mum is having to sell her little bungalow to pay for the privilege of this living hell.

I'm meeting up for coffee with a friend shortly, her mum is about 2 years behind mine. We tend to have a good moan about the system and the trials and tribulations. Also, I've been able to give her some advice on how the system works, which helps me as well as her. Hey ho, onwards and upwards as they say! :)
 

karenbow

Registered User
May 24, 2021
85
0
My mother's last 3 years were horrendous and she wasn't considered 'end of life' even when she was!

In that time she was constantly anxious, unhappy, agitated, sometimes aggressive, subject to hallucinations, incontinent and completely bewildered. She wasn't on any meds at all.

I watched her go through this until she acquired a 'slight infection' which was never identified and she died a week later. It has left me severely traumatised. At no time in those last 3 years did she have any quality of life, in fact she was living out her previously expressed worst nightmare.

Did anyone benefit from her being alive for those last 3 years? No. Unless you count the care home share holders - it cost mum £150,000 to pay for the privilege of that dementia life sentence.
dear jaded really sorry you and your mum went through such a terrible time- i can fully understand that you feel traumatised- my mum died in october and watching mum deteriorate just as you did with your mum shocked me - although id read up on alzheimers the actual passage of the disease was far worse than i imagined - i always thought that death would be peaceful if nursing care was available i was so wrong and this comes into my thoughts every day and i cannot seem to accept that this is how mums life ended- i feel really bitter about it , and i am probably trying to blame something, anything, rather than face up to the fact that our lives dont always end gently- best wishes jaded,i hope that eventually you,ll start to feel a bit better x
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,208
0
High Peak
Thank you @karenbow

I'm not sure if I feel bitter or angry or what really :(
I'd read everything I could find on dementia but couldn't relate it to a real person somehow. What I wasn't prepared for was the fact that before she finally faded to that shadow-like state, dementia caused my mother to go stark staring mad. I used to visit her in the care home where she'd be kicking off, hallucinating, shouting or full of delusions and the carers, bless 'em, just took it in their stride. Whereas I'd be thinking, 'This woman is completely crazy - why doesn't someone DO something?!'

There was also the feeling that I was supposed to behave like it wasn't happening too and I found that really difficult. Maybe I'm just a bit of a wuss but there were times I was scared to go in the care home - always several really dodgy people on the loose, one of them being my mother. Sometimes when I arrived she'd see me and her face would change. She would bare her teeth and make a beeline for me. If she spotted me and had that feral look I felt like turning round and running for it. Sorry, but no one has trained me to deal with madness.
 

Alora

Registered User
Oct 16, 2021
390
0
Hi Jaded

You were so helpful to me with my struggles with my mum I wish I could help you more, say the right things to you. it must have been awful to see this person you knew and loved turn into this other creature.

Hopefully, with time, you will just remember your Mum as she used to be.

The carers were probably just as upset as you were but had to be professional.

I’m so sorry.
 
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Scarlet Lady

Registered User
Apr 6, 2021
213
0
[

There was also the feeling that I was supposed to behave like it wasn't happening too and I found that really difficult. Maybe I'm just a bit of a wuss but there were times I was scared to go in the care home - always several really dodgy people on the loose, one of them being my mother. Sometimes when I arrived she'd see me and her face would change. She would bare her teeth and make a beeline for me. If she spotted me and had that feral look I felt like turning round and running for it. Sorry, but no one has trained me to deal with madness.
[/QUOTE

This really hit home for me, @Jaded'n'faded . I haven’t experienced anything like that with my PWD, but it does bring home the realisation that some dementia behaviour is indeed ‘madness’ and wouldn’t be out of place in a Dickens novel. Thank goodness we don’t treat this as we would have done then, but it surely is as difficult to cope with as it ever was. We may have more compassionate places to ‘put’ them, so to speak, but we aren’t much further forward in treating the very disturbed in our dementia community.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,208
0
High Peak
It is the human condition I suppose. Some of us die in accidents, some of us get heart failure, some of us die of cancer. And some of us go insane and lose our minds. But nobody ever says that!
 

15moterbike

Registered User
Jan 17, 2022
131
0
Thank you @karenbow

I'm not sure if I feel bitter or angry or what really :(
I'd read everything I could find on dementia but couldn't relate it to a real person somehow. What I wasn't prepared for was the fact that before she finally faded to that shadow-like state, dementia caused my mother to go stark staring mad. I used to visit her in the care home where she'd be kicking off, hallucinating, shouting or full of delusions and the carers, bless 'em, just took it in their stride. Whereas I'd be thinking, 'This woman is completely crazy - why doesn't someone DO something?!'

There was also the feeling that I was supposed to behave like it wasn't happening too and I found that really difficult. Maybe I'm just a bit of a wuss but there were times I was scared to go in the care home - always several really dodgy people on the loose, one of them being my mother. Sometimes when I arrived she'd see me and her face would change. She would bare her teeth and make a beeline for me. If she spotted me and had that feral look I felt like turning round and running for it. Sorry, but no one has trained me to deal with madness.
I feel I have to answer to this . Mum was sectioned about 5 years ago went to a mental institution for a while , we would visit she would be screaming the place down shouting at us she hated us for putting her in their , she then went to residential care where she wandered around constantly hallucinating seeing men with swords coming for her , I was apparently sat by her the whole time , she couldn’t have male staff look after her she accused them all of wanting to marry her , she saw my dad and babies everywhere , people selling drugs and letting dogs lose . Very occasionally there was a moment of joy of dancing and singing . She had to go to a nursing home then as Parkinson’s deteriated this soon snow balled into falls doubly incontience and bed rest for at least 2 years . Until about 9 months ago she would kick and bite staff during any personal care but no longer has the strengh . She can still shout and shake and need lorazepam to settle ,her face is screwed uo I believe she is pain , sores on hands from contractions from where the staff put mitts on they rubbed. She is about 6 stone I finely won my argument to stop weighing her a while ago as it was cruel on a scale hoisted up in air, I agree no one trains you for this madness there are memories from the real mental times they don’t fade , no it’s just living hell or living death .