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

Brother47

Registered User
Jan 18, 2020
128
0
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?
 

Brother47

Registered User
Jan 18, 2020
128
0
it’s a horrid time , my mum has been bedridden for 2 years needing all care no qol at all . I live away but try and visit every other week .she has deteriated even more since Xmas with swallow issues needing suction at times and hyosine injections aspirated in February but still carrying on . She is awake but gets distressed with Parkinson’s involuntary movements and can’t move her head at all . After 2 years of contractures on her hands the home suddenly put some mitttens which have caused sores in between her fingers and a skin tear to her arm . When I call like today I get told the same she is fine no issues whilst the suction machine sits there by the side . I have decided to take a few weeks out of visiting . The reason is I visited the weekend as mums caregiver as there’s covid there again . She was so distressed shaky and wincing , the carer told me should would calm down in a bit but it wasn’t acceptable and the qualified nurse did give her some medication to calm her down . I always like to feed mum she is on a purée diet very thick fluids . Again the carer said I wasn’t putting enough on the spoon . I believe mum is struggling and suffering but I would hate her to chock . The Food goes cold I have mentioned this in the past it’s revolting. When I mentioned mum had no qol the carer said with dementia you just have to go with it . I do not want to hear these things . If mum gets covid again she Can’t fight it would be a happy release she has been in living hell for years . I’m sure although your brother is stable he will be left weaker with the covid . visit as soon as your alloweed and I’m sure trust your own instincts , I often get told she is fine then they will go on to say she was chesty the day before and needed help . They refuse to say she is nearing end of life to need a driver but feed her suction her ongoing hell and what seems a obsession to feed , offer yes but they are pushing so much . it’s all sad compared with other terminal illnesses . I have no doubt if mum had cancer she would be treated with much more dignity and with palliative care .
Oh dear, that is so sad 15motorbike. Thank you for replying. It’s so difficult to assess what’s best but we all know that the care industry have to do all they can to maintain life even when ‘life’ is just keeping someone fed, watered and hopefully as comfortable as possible. The latter stages are agonising. I’m sure they mean to offer comfort to me but I’d rather know the truth than this ‘everything is fine’ response . When my brother was at home about 2 years into his diagnosis which was over 3 years ago, he tried to take an overdose but took blood pressure meds thinking they were aspirin. From then on, his meds had to be locked away. He knew where the med box was and tried breaking into it but of course failed. He appealed to me to help. So I know he doesn’t want to go on but he’s so ‘out of it’ now that I can only hope he’s pain free. He’s on morphine patches so they know he has pain. It’s so very sad and distressing to see. Totally agree with you. Palliative care would be a blessing to him and your mum by the sounds of it. I’m not sure if this was the right place to air my query. He’s definitely in the latter stages which his doctor confirmed in December. I think he’s nearing EOL but I can’t be sure. My thoughts are with you 🙏
 

Sarasa

Volunteer Host
Apr 13, 2018
4,992
0
Nottinghamshire
Hi @Brother47 , I think different carers have different ideas about what is OK in someone with dementia. My mum is slowly moving towards the last stages, though I think she may be around for a while yet. Some carers talk about how well she is, whereas others tell me how frail she is becoming.
I guess it is only natural to put as positive spin on things as we can. Due to his own ill health my brother hasn't seen mum for three years. Both his wife and I seem to put a much more positive spin on how she is so as not to depress him. Hopefully he'll be able to see her sometime in the next couple of months. He was due to visit at Christmas then covid put paid to that.
 

Brother47

Registered User
Jan 18, 2020
128
0
Hi @Brother47 , I think different carers have different ideas about what is OK in someone with dementia. My mum is slowly moving towards the last stages, though I think she may be around for a while yet. Some carers talk about how well she is, whereas others tell me how frail she is becoming.
I guess it is only natural to put as positive spin on things as we can. Due to his own ill health my brother hasn't seen mum for three years. Both his wife and I seem to put a much more positive spin on how she is so as not to depress him. Hopefully he'll be able to see her sometime in the next couple of months. He was due to visit at Christmas then covid put paid to that.
Thank you Sarasa, I hear what you’re saying and understand the care home has to be as positive as possible and definitely in your circumstances, it’s the right thing to do. Covid has reduced the number of times I’ve been able to visit. They’ve had covid cases off and on since last November but since Christmas they’ve only managed to stay open just over a week. It’s just hard when I rely on their feedback but get mixed messages. I get false hope only to have it dashed. Thanks again for your input 🙏
 

Brother47

Registered User
Jan 18, 2020
128
0
Thankyou my own thoughts may be controversial but at times they don’t know when to stop and look at the bigger picture . when mum aspirated early this year they did call the dr as although we had discussed no oral antibiotics I thought they may offer some help and the dr called me to say if mum was her parent she defiantly would not give her antibiotics. I agree they should offer. Food and fluids but there seems a overwhelming need to percervere at all costs .
Yes That’s true. It’s meant well, but can be cruel trying to extend a life of delirium. Your thoughts aren’t controversial to me. In my brothers case, he ‘passed’’ sometime last year when he stopped talking and became totally reliant on help. I’ve been sort of grieving ever since and I agree, it’s right to offer’ food and drink but there’s no need to use persuasion if the offer is declined.
 

Sheelagh7

Registered User
Feb 25, 2022
56
0
Yes That’s true. It’s meant well, but can be cruel trying to extend a life of delirium. Your thoughts aren’t controversial to me. In my brothers case, he ‘passed’’ sometime last year when he stopped talking and became totally reliant on help. I’ve been sort of grieving ever since and I agree, it’s right to offer’ food and drink but there’s no need to use persuasion if the offer is declined.
It's definitely cruel to prolong the situation in my opinion. It's also difficult to get a realistic opinion of situation from the staff. I think it's true that we are given a positive upbeat synopsis from the staff but personally I would like a reality update. We were told mum was sitting in a chair in a lounge with all the other residents on Sunday as it was mother's day, however, mum is bed bound and can't even lift her head up so we can't believe they managed to get her into a wheelchair using a hoist and then moved onto a chair in the lounge, it's totally unrealistic. Hey ho, hopefully this nightmare will end soon ...
 

Jale

Registered User
Jul 9, 2018
703
0
This illness is so cruel, not only to the PWD but also their loved ones. Before covid hit we had a good relationship with some of mum's carers and we did say to them that we wanted to know how she was doing - warts and all and not to be told everything was fine if it wasn't.
I can understand staff perhaps not wanting to be the barer of bad news but I do want to know, perhaps there is someone at the home that you could have a talk to?
 

imthedaughter

Registered User
Apr 3, 2019
825
0
My dad would have said 'they wouldn't keep an animal alive like this' - but this potentially awaits him. I dread it. I know he'd have preferred to go quickly, and right now his QoL is ok. But it's the future I fear for him....
 

jennifer1967

Registered User
Mar 15, 2020
12,532
0
Southampton
it might be that the carers are being told what to say by management. we werent allowed to say anything specific as we werent qualified medics so it would be assumptions of how they are. we could say the gp has been and they are on a different meds, anti-bios but not specific as thats the role of the gp. there are other times when we dont know. one shift, the resident may not being doing so well but next time we see them, they are walking or more alert so better than the time before which is all that you can go by. serious talks really need to be by the manager or doctor rather than care staff. there are also about 4 different shifts in 24hrs so different staff. what their perceptions are are subjective to them.
 

karenbow

Registered User
May 24, 2021
89
0
i totally understand what everyone is saying- this was how it was with my mum- always saying she was fine- i knew she wasnt , mum was late stage ,all the severe symptoms of alzheimers- i just wanted honesty from someone so that i would know mum was being cared for properly- i visited mum every day to make sure she was being looked after and if i asked a question i was made to feel that because of mums diagnosis she was 'fine' as in what someone at this stage would be like.i constantly worried about pain relief for my mum she could not talk or move or even support her head and the only person who took time to talk to me properly was the emergency gp who i insisted visited when mums breathing deteriorated and he told me mum was end of life- i felt entitled to know exactly how mum was -i didn,t need pacifying i was mums daughter and just because mum needed a nursing home my caring for mum didn,t stop- lack of information or incorrect information just makes you worry more, best wishes to you allx
 

jennifer1967

Registered User
Mar 15, 2020
12,532
0
Southampton
This is so honest and true x visiting mum last week a carer told me when I suggested mum was struggling and had no qol that it was just how it was ! I'm sure she is pain and distress but get told no she isn't . The gp who visited last month when she aspirated said if it was her parent she would want no treatment but unfortunately mum rallied a tiny amount . She can't move her head only involuntary parkinsins thrashing with one arm skin tears bruises coughing chocking but the staff find this all acceptable . It's barbaric
i dont expect the care staff think its acceptable. they are probably sad about the situation and your mum. but its not them that needs to do something about it. they can only carry out the instructions that the doctor gives them or the manager. the skin is very thin and tears and bruises without much pressure. could you speak to the gp and ask what is happening or if there is anything else that can be done to make her more comfortable?
 

Yankeeabroad

Registered User
Oct 24, 2021
88
0
The CH where my mom is have regularly scheduled “care conferences“ with the care coordinator/SW (who’s totally useless), nursing supervisor, therapists/ dieticians and other staff as applicable. Maybe this is an option? Adding in areas that you feel necessary?

For example, my mom uses the “in house” GP. The upside is that she gets a brief check at least once per week and immediate doctor on call attention as needed, but the downside is that we don’t receive regular medical feedback directly. We’ve asked the doctor to join the next conference (and they’ve accepted) as we feel her condition is changing now (physically and mentally) and we want a direct medical discussion.

I agree that the direct care staff see things at different times and have different perceptions of reality. which colours their discussions with you.

We kind of feel like my mom’s care is a team effort and it’s helpful to have all sections of the team giving feedback in the same room and to be on the same page for her care plan going forward.

BTW, my sister and I are very long distance so these conferences take place on Zoom or conference calls.
 

MartinWL

Registered User
Jun 12, 2020
2,026
0
65
London
Hi @Brother47 I had. A bit of the same issue with my mother, different nurses gave slightly different assessments of her condition. The truth is most probably that nobody is really sure. The decline of an end-of-life patient isn't something that can be accurately measured on a scale. Your brother may be declining due to his dementia and age rather than because of covid. If quality of life is rock bottom, sleep is a welcome break from misery, so I would be inclined not to worry about sleeping a lot. It seems the staff are doing their best on nutrition and there isn't much more to be done.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,265
0
Kent
Hello @Brother47

Having a daily phone call is good practice as far as the care home is concerned and a cause to be grateful.

When the medical staff say he is comfortable it means precisely what it is. Your brother is pain free and comfortable. That is their main concern.

When the care staff say your brother is absolutely fine they mean the same as the medical staff only they are using less medical language. Your brother is pain free and comfortable.

We all know how infection can have a more damaging effect on people with dementia than on those without and I for one would be grateful to hear he is sleeping a lot. There are other far worse reactions to covid , especially breathing difficulties which I wouldn`t wish on anyone.

We also all know how appetitive is the first thing to be affected when we are ill.

It`s a very sad state of affairs and much harder when you are unable to visit and see for yourself but it sounds to me as if your brother is being carefully monitored and very well cared for.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,384
0
High Peak
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.
 

Alora

Registered User
Oct 16, 2021
390
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.
hello Jaded

i was so sad when I read post about your poor Mum no wonder you were traumatised. it must have been hell for both of you.

my mum is going to her new care home today.

I’m really, really sorry your Mum had to go through that,
 

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
3,384
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.