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Strange things and more confusion... time for care home getting ever nearer?

Brother47

Registered User
Jan 18, 2020
62
Hello all, me again. Re my brother of 73 with late stage FTD, lives alone and he's now doing some odd things. The carer arrived Sunday to find the bath full of breakfast cereal... also, the day before that he'd taken all the bedclothes off his bed and rearranged them but put the duvet under the bottom sheet. He is also saying odd things but I think that may be down to his lack of control over his speech now. From being fiercely independent and not wanting company, he now occasionally asks one of the carers to stay a bit longer. We've all noticed how much more frail he's become and a bit wobbly on his feet too. We thought it was just a result of a suspected kidney infection but tests proved negative on that. The doctor thinks he's just 'moved' on to another stage. Along with his sundowning, incredible lack of sleep, he now doesn't recognise everyday household objects in his home such as the fridge, microwave etc. I think it's for him to go into care. He's getting more frequent ailments and is clearly not happy at the way he is. Social Services maintain that he'd be better off at home but I'm not so sure. He's getting twice daily care visits and two outings a week with a carer for a car ride. I don't think more care visits will benefit him. I know I've said this before but selfishly, I feel he'd be much safer in a care home with help and company on hand. Any advice appreciated.
 

MrsChristmas

Registered User
Jun 1, 2015
178
Hi there,

I can’t offer any advice as I’m in the same position as you with my Mum who has undiagnosed dementia, 94 and refusing any sort of care and I’m moving away and there be no one to look out for her. I’ve given up.

At least your brother is accepting Carers which is a small comfort.

All can say I know exactly how you feel - if it’s anything like me - worry, frustration and despair. I’m so sorry you are having to deal with this and so far away from him.

Im sure you’ll get lots of advice, support and kindness here.

Hang in there.

Mrs C
 

Cazzita

Registered User
May 12, 2018
591
Hi there, I agree, it's definitely looking like time for a care home. Can you ask for another adult social care assessment? So much less to worry about when they are in a home and I never, ever thought I would be saying this! Good luck.
 

Brother47

Registered User
Jan 18, 2020
62
Hi there,

I can’t offer any advice as I’m in the same position as you with my Mum who has undiagnosed dementia, 94 and refusing any sort of care and I’m moving away and there be no one to look out for her. I’ve given up.

At least your brother is accepting Carers which is a small comfort.

All can say I know exactly how you feel - if it’s anything like me - worry, frustration and despair. I’m so sorry you are having to deal with this and so far away from him.

Im sure you’ll get lots of advice, support and kindness here.

Hang in there.

Mrs C
Thanks Mrs C, it’s comforting to know I’m not alone. Yes this site is so good for releasing pent up frustrations.
 

Brother47

Registered User
Jan 18, 2020
62
Hi there, I agree, it's definitely looking like time for a care home. Can you ask for another adult social care assessment? So much less to worry about when they are in a home and I never, ever thought I would be saying this! Good luck.
Thanks Cazzita, it’s not going to be easy but the sooner I get this journey going, the better for him and as you say, I can be released from this constant fear of something awful happening to him 🙏🏼
 

lemonbalm

Registered User
May 21, 2018
563
I don't think there is anything selfish about wanting your brother to be safe, with people around him now @Brother47 . You obviously care a great deal about him and it sounds as though he is becoming rather lonely and needs more care than home visits can provide. If it were my brother, I wouldn't want him left alone like that either.
 

Jaded'n'faded

Registered User
Jan 23, 2019
885
High Peak
Unfortunately SS tend to take that attitude because it is cheaper to have him at home with 2 carers than move him to a care home. They will usually increase to 4 visits per day before they admit a CH is needed.

But you are absolutely right! The time has come and particularly because he is needing company for reassurance now. Even if he had the max 4 carers per day he'd still be alone all night and that's not good. I would keep contacting SS with details of his increasingly bizarre behaviour and repeat that he is vulnerable and they have duty of care.

(Had to smile at the cereal in the bath though!)
 

Rosettastone57

Registered User
Oct 27, 2016
1,349
Hello all, me again. Re my brother of 73 with late stage FTD, lives alone and he's now doing some odd things. The carer arrived Sunday to find the bath full of breakfast cereal... also, the day before that he'd taken all the bedclothes off his bed and rearranged them but put the duvet under the bottom sheet. He is also saying odd things but I think that may be down to his lack of control over his speech now. From being fiercely independent and not wanting company, he now occasionally asks one of the carers to stay a bit longer. We've all noticed how much more frail he's become and a bit wobbly on his feet too. We thought it was just a result of a suspected kidney infection but tests proved negative on that. The doctor thinks he's just 'moved' on to another stage. Along with his sundowning, incredible lack of sleep, he now doesn't recognise everyday household objects in his home such as the fridge, microwave etc. I think it's for him to go into care. He's getting more frequent ailments and is clearly not happy at the way he is. Social Services maintain that he'd be better off at home but I'm not so sure. He's getting twice daily care visits and two outings a week with a carer for a car ride. I don't think more care visits will benefit him. I know I've said this before but selfishly, I feel he'd be much safer in a care home with help and company on hand. Any advice appreciated.
I agree with other posters, it's time for full time care. But also as others have said, social services will want to try the 4 times a day care package before anything else. If he is self funding, then this is something you can progress yourself, but from what you have already said, its back to SS
 

Brother47

Registered User
Jan 18, 2020
62
I don't think there is anything selfish about wanting your brother to be safe, with people around him now @Brother47 . You obviously care a great deal about him and it sounds as though he is becoming rather lonely and needs more care than home visits can provide. If it were my brother, I wouldn't want him left alone like that either.
The thank you Lemonbalm, that reassuring. It’s a tough decision but I think it’s the right one. Had a long conversation with the doctor this evening and he’s concerned that the frailty is going to be a problem in my brother staying at home. Thank you for your comments
 

Brother47

Registered User
Jan 18, 2020
62
I agree with other posters, it's time for full time care. But also as others have said, social services will want to try the 4 times a day care package before anything else. If he is self funding, then this is something you can progress yourself, but from what you have already said, its back to SS
Yes I agree Rosettastone. He is self funding and whereas SS have been helpful it does feel like they are trying to put me off organising a Care home for him. He will refuse this if asked just like he refits have care at home last October. I only want him to be safe and secure. Thank you for your support .
 

Brother47

Registered User
Jan 18, 2020
62
Thanks Cazzita, it’s not going to be easy but the sooner I get this journey going, the better for him and as you say, I can be released from this constant fear of something awful happening to him 🙏🏼
Yes I have had a long conversation with his doctor this evening and he is going to arrange for an updated appointment with my brother to see for himself how the condition is accelerating. My brother is having an abdominal CT scan on Tuesday just to see if there is another underlying condition that could be causing the recent changes in his behaviour.
 

Cazzita

Registered User
May 12, 2018
591
Yes I have had a long conversation with his doctor this evening and he is going to arrange for an updated appointment with my brother to see for himself how the condition is accelerating. My brother is having an abdominal CT scan on Tuesday just to see if there is another underlying condition that could be causing the recent changes in his behaviour.
That's good. You are doing everything you can and it's time for the next stage. It is good that ASS (haha) try to keep people at home but there comes a point when it is simply dangerous and they are no longer safe. Keep us posted :) x
 

Brother47

Registered User
Jan 18, 2020
62
That's good. You are doing everything you can and it's time for the next stage. It is good that ASS (haha) try to keep people at home but there comes a point when it is simply dangerous and they are no longer safe. Keep us posted :) x
Thanks Cazzita, I will keep you posted. Today the carer told me that my brother is forgetting that he has a plate of food in front of him. She had to keep reminding him that it was there. I spoke to him this afternoon and he was remarkably sharp except for asking me why I was calling so let as he was going to bed because it was dark. It was 5pm. When he’s this alert on the phone I do wonder if a care home is right for him yet. He still likes his solitude. Thanks for your support.
 

Banjomansmate

Registered User
Jan 13, 2019
2,089
Dorset
The Banjoman could appear totally logical when his brother phoned him then it was realised that he only talked about things they had done together in the past. When the conversation got too difficult for him he would suddenly need to be doing something else and end the call.
 

Cazzita

Registered User
May 12, 2018
591
Thanks Cazzita, I will keep you posted. Today the carer told me that my brother is forgetting that he has a plate of food in front of him. She had to keep reminding him that it was there. I spoke to him this afternoon and he was remarkably sharp except for asking me why I was calling so let as he was going to bed because it was dark. It was 5pm. When he’s this alert on the phone I do wonder if a care home is right for him yet. He still likes his solitude. Thanks for your support.
Anytime :)
 

Brother47

Registered User
Jan 18, 2020
62
The Banjoman could appear totally logical when his brother phoned him then it was realised that he only talked about things they had done together in the past. When the conversation got too difficult for him he would suddenly need to be doing something else and end the call.
Yes, I think I know what you mean. When I talk to him on the phone, the subject revolves around the weather, the time of day and his constant repetition of 'life is chaos'. I have to initiate a change in subject but I find that if I make a sentence too long, he just goes quiet and then asks what the weather is like. I have to say that sometimes when I come off the phone, I do think he's really ok to be at home alone but then I look at the Checking System and see that he's been incredibly active, pacing in and out of rooms. Although I don't want to fall out with Social Services, I don't think they have a clue what it's like to be in my shoes, worrying all the time. Thanks for you comments Banjomansmate.
 

Brother47

Registered User
Jan 18, 2020
62
Unfortunately SS tend to take that attitude because it is cheaper to have him at home with 2 carers than move him to a care home. They will usually increase to 4 visits per day before they admit a CH is needed.

But you are absolutely right! The time has come and particularly because he is needing company for reassurance now. Even if he had the max 4 carers per day he'd still be alone all night and that's not good. I would keep contacting SS with details of his increasingly bizarre behaviour and repeat that he is vulnerable and they have duty of care.

(Had to smile at the cereal in the bath though!)
ThanksJaded nFaded, yes the cereal Beth thing was odd. I am having quite a battle with SS who keep reminding me about the Deprivation of Liberty act. Trouble is, they don’t se the whole scenario. I took him for a CT scan this week and he did not have the strength to get onto the scanner bed and lay on his front. The carer also reported today that when they tried to bath him, he admitted that he could no longer get into the bath. He got quite upset about that. The SS lady appointed to him is going to ring me on Monday to discybut I guess, as you quite rightly mention, that they’ll just suggest I up the number of care visits. We’ll see! Thank you for your response!
 

Brother47

Registered User
Jan 18, 2020
62
The Banjoman could appear totally logical when his brother phoned him then it was realised that he only talked about things they had done together in the past. When the conversation got too difficult for him he would suddenly need to be doing something else and end the call.
That sounds familiar. Looking back on my conversations with him, he never talks about anything except the weather or the time of day.
 

Brother47

Registered User
Jan 18, 2020
62
That sounds familiar. Looking back on my conversations with him, he never talks about anything except the weather or the time of day.
Yes it’s strange that they seem to be obsessed with that. A friend of mine in Australia has a sister with dementia and it’s the same with her when he rings, all she talks about is the time of day and the weather. Perhaps it’s their way of dealing with memory loss?
 

Ruth1974

Registered User
Dec 26, 2018
108
Hello all, me again. Re my brother of 73 with late stage FTD, lives alone and he's now doing some odd things. The carer arrived Sunday to find the bath full of breakfast cereal... also, the day before that he'd taken all the bedclothes off his bed and rearranged them but put the duvet under the bottom sheet. He is also saying odd things but I think that may be down to his lack of control over his speech now. From being fiercely independent and not wanting company, he now occasionally asks one of the carers to stay a bit longer. We've all noticed how much more frail he's become and a bit wobbly on his feet too. We thought it was just a result of a suspected kidney infection but tests proved negative on that. The doctor thinks he's just 'moved' on to another stage. Along with his sundowning, incredible lack of sleep, he now doesn't recognise everyday household objects in his home such as the fridge, microwave etc. I think it's for him to go into care. He's getting more frequent ailments and is clearly not happy at the way he is. Social Services maintain that he'd be better off at home but I'm not so sure. He's getting twice daily care visits and two outings a week with a carer for a car ride. I don't think more care visits will benefit him. I know I've said this before but selfishly, I feel he'd be much safer in a care home with help and company on hand. Any advice appreciated.
Wobbly isn't necessarily unsafe though ? My husband has started putting shovel fulls of gravel in cupboards which is driving me nuts but its not unsafe for him to be at home (although the climbing out of windows during the night is a worry!)