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Care home possibly soon but social services disagree

Brother47

Registered User
Jan 18, 2020
62
Hi all, me again. My 73 brother with late stage FTD is now getting regular health issues as his immune system seems to be failing. Barely a week goes by without some health problem, recent ones in the last month being UTI, Kidney infection, gout and constipation. I spoke with the care agency who supply his daily care and we have upped his care to two visits a day which we started initially because he needed a twice daily antibiotic and we know he won't take meds voluntarily and will throw them away. The care agency think, that as his home is not really well laid out for him ie only bathroom/toilet being upstairs along with the fact that he spends nearly all his time apart downstairs apart from the odd hour in bed once a day and that I should maybe start thinking about a care home for him. It's not drastically urgent but like me they are concerned at how fast his condition is moving. I only have Power of Attorney for his property and finance so I can't just send him into care. They said I should seek a Mental Capacity Assessment from Social Services or the doctor. Doctor told me to talk to Dementia Care Team, who passed me onto Social Services, whose policy, they tell me, is to keep people in their homes and independent for as long as possible. That probably works for some people who have family to care for them but my brother lives alone and won't wear an alarm. Social Services told me on Friday that more can be done to keep him at home before he/I need to consider a care home. Have to say they were very swift to supply a commode and bed bottle Friday which was good but he refuses to use either and still keeps going up the stairs, very slowly. I think he would benefit from being in a home with 24 care and medical help on hand. However I worry that I'm just being selfish and wanting him in a care home because I can't be there to help him? I speak to him daily on the phone (I call him) and it's clear his condition is progressing very swiftly and he is losing control of his speech. Before too long he probably won't be able to use the phone to ring out if he's in trouble. He has stopped using his mobile, and doesn't recognise Doro one I bought him as being his own and ignores it. He has no other relatives and only a friend who visits him every few weeks for an hour or so. I may be wrong in thinking this but I'm sure if Social Service carry out the Mental Capacity Assessment, given what they've said so far, I doubt they'll recommend he goes into care yet. I'm told care homes will carry out the same assessment before admitting anyone in their homes. Interested to know if anyone can advise what to do for the best re a care home?
 

Sarasa

Registered User
Apr 13, 2018
1,699
I think social services will look at all other options before considering a care home. Would your brother be self funding, because if so you could just look for somewhere yourself. A bit tricky as you are so far away and homes aren't having people in anyway at the moment. This site is useful for finding details of homes near your brother that might be suitable. If you are dependent of social services to fund a move I guess you will need to keep on pointing out that there is no one near who can help in an emergency, that his ability to communicate is failing and that he isn't engaging with things, such as a commode, put in place to help him.
You are not being selfish, you are being sensible and pragmatic. I know we all think we'd like to be able to look after our loved ones, but I realised very early on that there was no way I could care for my mother. If I'd tried it would have made things very much worse for both of us.
 

DianeW

Registered User
Sep 10, 2013
737
Lytham St Annes
I think some care homes are now accepting new residents, I know where my husband works they are, prior to admittance people are tested for Covid, and also have to be quarantined in their own rooms for 2 weeks.
 

Sarasa

Registered User
Apr 13, 2018
1,699
Ooops @Brother47 , I didn't make myself clear. What I meant was that you probably wouldn't be able to visit homes to check whether or not they would suit your brother, rather than homes wouldn't be taking new residents.
 

Brother47

Registered User
Jan 18, 2020
62
I think social services will look at all other options before considering a care home. Would your brother be self funding, because if so you could just look for somewhere yourself. A bit tricky as you are so far away and homes aren't having people in anyway at the moment. This site is useful for finding details of homes near your brother that might be suitable. If you are dependent of social services to fund a move I guess you will need to keep on pointing out that there is no one near who can help in an emergency, that his ability to communicate is failing and that he isn't engaging with things, such as a commode, put in place to help him.
You are not being selfish, you are being sensible and pragmatic. I know we all think we'd like to be able to look after our loved ones, but I realised very early on that there was no way I could care for my mother. If I'd tried it would have made things very much worse for both of us.
Thank you Sara’s, yes, he’s self funding. I had to get social services involved at the outset of his problem because he refused to let me help so, I reported him to them as being at risk. They’ve been helpful to date. He’s in Bristol and I’m in N Devon. Thank you for your thoughts.
 

Brother47

Registered User
Jan 18, 2020
62
I think some care homes are now accepting new residents, I know where my husband works they are, prior to admittance people are tested for Covid, and also have to be quarantined in their own rooms for 2 weeks.
Thanks DianeW that’s useful to know.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,047
Bristol
Thank you Sara’s, yes, he’s self funding. I had to get social services involved at the outset of his problem because he refused to let me help so, I reported him to them as being at risk. They’ve been helpful to date. He’s in Bristol and I’m in N Devon. Thank you for your thoughts.
Just a thought, but I live in Bristol and find both the Dementia Wellbeing Service and the Carers support Centre to be very helpful.
https://www.carerssupportcentre.org.uk/ and http://www.bristoldementiawellbeing.org/ will give you the contact numbers.
 

Brother47

Registered User
Jan 18, 2020
62
Just a thought, but I live in Bristol and find both the Dementia Wellbeing Service and the Carers support Centre to be very helpful.
https://www.carerssupportcentre.org.uk/ and http://www.bristoldementiawellbeing.org/ will give you the contact numbers.
Thanks Nae Sporran, yes I’ve had contact from them but they sort of backed off when they realised my brother had already been allocated a social services contact who has been amazingly helpful. Dementia Care navigator visited him twice and sent me a ‘care plan’ but it was really only a status report as to how he was and what his capabilities were. Perhaps if he’d not already been looked after by SS it may have been different. I’d be interested to know if you can recommend any care homes in Bristol.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,047
Bristol
Thanks Nae Sporran, yes I’ve had contact from them but they sort of backed off when they realised my brother had already been allocated a social services contact who has been amazingly helpful. Dementia Care navigator visited him twice and sent me a ‘care plan’ but it was really only a status report as to how he was and what his capabilities were. Perhaps if he’d not already been looked after by SS it may have been different. I’d be interested to know if you can recommend any care homes in Bristol.
I'm pleased to see your brother has a dementia navigator. They have helped my partner and I immensely. Sorry, the rules preclude recommending care homes and as we live in extra care housing anyway would be unable to offer any thing. There is a guide at https://www.alzheimers.org.uk/get-support/help-dementia-care/finding-care-home which you may not have seen. Good luck with it, Brother47.
 

Brother47

Registered User
Jan 18, 2020
62
I'm pleased to see your brother has a dementia navigator. They have helped my partner and I immensely. Sorry, the rules preclude recommending care homes and as we live in extra care housing anyway would be unable to offer any thing. There is a guide at https://www.alzheimers.org.uk/get-support/help-dementia-care/finding-care-home which you may not have seen. Good luck with it, Brother47.
Thanks Nae Sporran, yes, the suggestions from the navigator were helpful to start with but they have diminished now and she/they seem to pass me back to Social Services. I only hear from them/her every 6 months but I do have to say that Social Services have been very helpful. My brother seems to be deteriorating rapidly. Thank you for the link for care homes. Got onto it today and spoke to two in my brothers area. One came up with offering a two week respite option to see how he settles, or not - no commitment, just a pre entry assessment but sadly over the phone which is going to be hard for him as he's losing control of his speech. However I do think that a week or two of respite could be the best way to go initially. I know he'll resist and not want to leave his home but he's getting so frail now. I had to take him to the Hot Clinic at Southmead last week and it was painful to watch him walk. He refused wheelchair help and had to sit down every now and again on the way. Such a cruel condition. Thanks again for your help.
 

MrsChristmas

Registered User
Jun 1, 2015
178
I think social services will look at all other options before considering a care home. Would your brother be self funding, because if so you could just look for somewhere yourself. A bit tricky as you are so far away and homes aren't having people in anyway at the moment. This site is useful for finding details of homes near your brother that might be suitable. If you are dependent of social services to fund a move I guess you will need to keep on pointing out that there is no one near who can help in an emergency, that his ability to communicate is failing and that he isn't engaging with things, such as a commode, put in place to help him.
You are not being selfish, you are being sensible and pragmatic. I know we all think we'd like to be able to look after our loved ones, but I realised very early on that there was no way I could care for my mother. If I'd tried it would have made things very much worse for both of us.
ive felt just like you feel..feeling selfish because you want your loved one to be looked after properly. I realised a while ago that I hadn’t got the patience any more. Dementia is a hard task master, the person you knew is fading it’s so hard. My mum is very easy going when she’s left alone to watch tv and got her food. it’s the unknown...what could happen to her if she has a fall, or the electrics go...like you she only has me for support but it is getting to me. I do so understand
 

Brother47

Registered User
Jan 18, 2020
62
ive felt just like you feel..feeling selfish because you want your loved one to be looked after properly. I realised a while ago that I hadn’t got the patience any more. Dementia is a hard task master, the person you knew is fading it’s so hard. My mum is very easy going when she’s left alone to watch tv and got her food. it’s the unknown...what could happen to her if she has a fall, or the electrics go...like you she only has me for support but it is getting to me. I do so understand
Ah, thanks MrsChristmas it’s exactly that. Yes it is getting to me too. I spend my days and nights worrying about him and ring him a lot to check he’s ok. My brother is stubborn and won’t wear one of those alarms. He is still fighting hard to try to manage but he knows he’s struggling and realises how physically weak he’s becoming. A good while ago not long after he was diagnosed with FTD, he said he wanted to sleep and not wake up. I thought he was suicidal but thankfully i was wrong. when I questioned him he said that he was happiest when he was asleep because he didn’t have to try to remember all the things he’s forgotten and he . It hit home to me back then that if something happened to him at home, I’d feel responsible. It’s about him being safe and looked after 24/7, which I can’t do. Thank you for sharing your thought. So glad I’m not alone, do look after yourself. The worry takes a toll. This forum is so good for times when you need to vent.