Is it time for Care?

[lemontart]

My husband has frontotemporal dementia (probably). His memory isn't the main problem, but his cognition. He simply can't do anything. He can no longer draw and paint or do all the jobs he used to do. He can't get himself anything to eat and drink. He can't shower or wash his hands or dress himself. He can't wipe his bottom. He is sometimes incontinent, and wears pulllups. He sits in front of the TV, but rarely actually watches anything. He struggles to understand what is going on around him, but he does remember things.

He has 2 days a week in daycare, but I am still exhausted and getting depressed in spite of taking antidepressants. Am I justified in looking for residential care? I just don't know if I am just being selfish.

 

[sapphire turner]

Blimey of course you are not being selfish! Sounds like a lot of hard work and it is getting you down. I am not there yet on looking for a care home but I gather that most people leave it late and then a crisis forces the decision with less choice to suit you and your husband. No harm looking into it, maybe planning a respite stay to give yourself a break and see how it goes.
Sending love ❤️

 

[canary]

Hello @lemontart

Apart from the incontinence you could be describing my OH.
OH has been into respite a couple of times and I will be looking into getting him in again sometime this month. Hes not yet at the stage of needing residential care because I am still coping, although I can see it emerging over the horizon.........

No its not selfish - its a question of whether you are able to meet his needs. If you are struggling, even with support, and it is affecting your health, then his needs have got too much for you to be able to meet them and he needs to move somewhere where they can be met. When you get to this stage, it is actually selfish to try and keep him at home.

 

[Ellie2018]

It’s not selfish, it’s important to look after you as well and I don’t know about you, but I’m not getting any younger! I’m also not there yet but I’m very logical so I think will be able to recognise when I am and if I’m honest I think at the point you are I’d think it’s time to look. My plan as we speak is to go from two days day centre to more as I seem to be able to cope better as they entertain him so he’s more settled in the evening, would that help. I do think that sometimes our loved one feels comfortable in care once they have settled in, they have more stimulation than a 1-1 at home and can feel safer although I’m going off two relatives in care due to physical issues. Good luck with it.

 

[sunshine chrissy]

My husband has frontotemporal dementia (probably). His memory isn't the main problem, but his cognition. He simply can't do anything. He can no longer draw and paint or do all the jobs he used to do. He can't get himself anything to eat and drink. He can't shower or wash his hands or dress himself. He can't wipe his bottom. He is sometimes incontinent, and wears pulllups. He sits in front of the TV, but rarely actually watches anything. He struggles to understand what is going on around him, but he does remember things.

He has 2 days a week in daycare, but I am still exhausted and getting depressed in spite of taking antidepressants. Am I justified in looking for residential care? I just don't know if I am just being selfish.

My husband has FTD too,he had 1 day a week in daycare,you're describing my life exactly until I got the help I desperately needed,an outstanding mental health nurse who pushed me to stand my ground with social services.The turning point came when he was out on one of his dozen or so walks every day,he only walked 100 yards or so up and down the road,he saw someone he knew and stepped out into traffic,I told her this and she took social services on,he went into permanent care on 1st Dec,it's not a happy ending by any means,he had a few weeks in respite care in Oct but he finally seems content.I've had a peaceful Christmas at least after a year of hell and still can't believe my struggle is over,I feel lucky to have had someone to fight my corner,I never got to experience some of the worst things that a lot of you have to cope with.I hope you get the help that I had,many people on here have told me time and again to speak up for myself when social services are involved and it's wise advice,you're on your own in this,find the strength to finally say you can't cope anymore,it took me 2 years but I got there!!!❤️x

 

[Kevinl]

If you can't cope then remember you count too, threaten to leave, harsh as it may sound you're playing a game of your mental health versus your partners.
For me it ended when I caught a viral infection of the brain, put me in hospital for over 2 years, meantime she died, I got better.
I have no issue, when the health care services when they kick in they can do an excellent job said as both a patient and over 10 years on here as a carer.
I've pretty much recovered but my "girlfriend" as my neighbour jokingly calls my care/case worker still comes round to check on me, be here Wednesday I think, does a man alone get more attention than a woman alone? Or indeed just a person alone as I'd like to hope.
K

 

[sunshine chrissy]

If you can't cope then remember you count too, threaten to leave, harsh as it may sound you're playing a game of your mental health versus your partners.
For me it ended when I caught a viral infection of the brain, put me in hospital for over 2 years, meantime she died, I got better.
I have no issue, when the health care services when they kick in they can do an excellent job said as both a patient and over 10 years on here as a carer.
I've pretty much recovered but my "girlfriend" as my neighbour jokingly calls my care/case worker still comes round to check on me, be here Wednesday I think, does a man alone get more attention than a woman alone? Or indeed just a person alone as I'd like to hope.
K

❤️

 

[lemontart]

Thank you for your replies. It seems we have the long journey with the actual dementia, and then we have to deal with the long journey of care. It's all very complicated and exhausting. I am lucky I have a lot of family support. I don't know how anyone could do this alone.

 

[SMBeach]

My husband has frontotemporal dementia (probably). His memory isn't the main problem, but his cognition. He simply can't do anything. He can no longer draw and paint or do all the jobs he used to do. He can't get himself anything to eat and drink. He can't shower or wash his hands or dress himself. He can't wipe his bottom. He is sometimes incontinent, and wears pulllups. He sits in front of the TV, but rarely actually watches anything. He struggles to understand what is going on around him, but he does remember things.

He has 2 days a week in daycare, but I am still exhausted and getting depressed in spite of taking antidepressants. Am I justified in looking for residential care? I just don't know if I am just being selfish.

I struggled with these thoughts. I suggested to dad about residential care and he said he really didn’t envisage the rest of his life would be spent in a place like that and although he was accepting that time might come, he didn’t feel it was then. I did. But felt I had to wait tuk it got to a stage where I couldn’t cope and not could dad. Bearing in mind I am 500 miles away and handled every part of dad’s life, finances, appointments, home maintenance ….. etc etc. it eventually got to a stage whereby dad himself was saying he’d like to go to a care home. Until that stage, I always felt that had I placed dad into care, that I’d be doing it for my own reasons and that was selfish. Understandable but selfish. I knew I shouldn’t feel that way. But I did. So I was very relieved when he said he wanted this. Once he decided though, he was insistent on chasing me every day to find out if I had a home yet. He’s almost done 4 weeks now. It’s taken time for him to settle. Sometimes he moans. Sometimes he doesn’t. He does lots of activities and I see these on social media and the activities team send me messages and photos via messenger. It’s taken time for me to iron out the creases so to speak. Especially with the technology for keeping in touch. I can’t just nip in and do these things but I will do a bit more when I next visit. I was very unsure initially if I’d done the right thing, even though it was dads request. I knew a care home would not be as he imagined, and it is a beautiful home. He’s been out to the pub. Joined in lots a dancing and excercise and creative stuff. He’s had far more of a life there than he had at home. Sadly he doesn’t always remember it. He doesn’t even remember we having had carers at hime 4 times a day for the past 2 years. That really frightened him to hear that and he’d only left home just 2 weeks earlier. He also told my brother in the phine that he’d been there several months. I think if you feel it’s time then you should start the conversations.

 

[lemontart]

I have so much admiration for the people on this forum. The hard work, the weight of responsibility and the resilience to carry on. I know now that I can't carry on any more. My family are currently helping me to set up respite care, but I am going to look to moving forward to permanent residential care. Otherwise I think this will kill me. I am beyond tired.

 

[canary]

Respite is a good way of trying somewhere out and giving you space to take stock and work out the future. My OH has regular respite and we have carers coming in to get him washed and dressed, so Im just about coping.
The biggest problem with going into permanent residential care is getting the funding if you would be reliant on Local Authority help. While he is in respite, though, is one of the easiest times to get it made permanent, because then people can see what it is like and the true extent of his needs. Once he has just gone into respite contact Social Services.

 

[Bevvywevvy]

Respite is a good way of trying somewhere out and giving you space to take stock and work out the future. My OH has regular respite and we have carers coming in to get him washed and dressed, so Im just about coping.
The biggest problem with going into permanent residential care is getting the funding if you would be reliant on Local Authority help. While he is in respite, though, is one of the easiest times to get it made permanent, because then people can see what it is like and the true extent of his needs. Once he has just gone into respite contact Social Services.

 

[Bevvywevvy]

Hello Canary
I hope i am doing it right, i saw your reply about going onto to respitethen arranging residential care? If this is the right way to do it, I'd love ask more and explain my situation. It seems that I may be in the same stage. Thank you.

 

[canary]

Hello Canary
I hope i am doing it right, i saw your reply about going onto to respitethen arranging residential care? If this is the right way to do it, I'd love ask more and explain my situation. It seems that I may be in the same stage. Thank you.

Hi @Bevvywevvy
There are several ways to get someone into residential care, but none of them are very easy, especially if the person with dementia refuses to go.

If you are going to be reliant on SS funding (from the Local Authority) it can be particularly difficult. You will need to request a needs assessment from SS. SS usually want 3 or 4 carer slots a day to have been tried and shown to be insufficient before they will consider residential care, but assuming you have tried that then the SW will ask the person with dementia if they are willing to go. Usually they will say no. It they are deemed to have capacity then there is nothing you can do as you cannot force someone with capacity to move into residential care. If they have lost capacity and they still say no then SS will not push it further and override their wishes unless they are considered to be "at risk of harm". This is a somewhat woolly phrase and can have different interpretations. If you can get them into respite, though - and carer burnout is a common reason - then the care home will see the true extent of their dementia behaviour and it is then easier to persuade SS to extend the respite and then make it permanent.

I dont know if this makes it clearer

 

[lemontart]

Thank you @canary. We are going to be self-funding for a few months, until the money reaches the SS limit. Which won't be long, because my OH has been assessed as high dependency, and his care will cost a minimum of £1540 a week. We will be relying on SS help after that. Any other illness is covered by the NHS, yet we are expected to pay out so much money. I would be happy to pay a contribution, but care costs are crippling.

 

[Chizz]

@lemontart said "I am beyond tired"
I think this is a fairly normal state for v many full time sole carers!
Alerts should be flashing, but it's v easy just to carry on, and on, and on...

 

[sunshine chrissy]

I have so much admiration for the people on this forum. The hard work, the weight of responsibility and the resilience to carry on. I know now that I can't carry on any more. My family are currently helping me to set up respite care, but I am going to look to moving forward to permanent residential care. Otherwise I think this will kill me. I am beyond tired.

❤️

 

[Bevvywevvy]

Hi @Bevvywevvy
There are several ways to get someone into residential care, but none of them are very easy, especially if the person with dementia refuses to go.

If you are going to be reliant on SS funding (from the Local Authority) it can be particularly difficult. You will need to request a needs assessment from SS. SS usually want 3 or 4 carer slots a day to have been tried and shown to be insufficient before they will consider residential care, but assuming you have tried that then the SW will ask the person with dementia if they are willing to go. Usually they will say no. It they are deemed to have capacity then there is nothing you can do as you cannot force someone with capacity to move into residential care. If they have lost capacity and they still say no then SS will not push it further and override their wishes unless they are considered to be "at risk of harm". This is a somewhat woolly phrase and can have different interpretations. If you can get them into respite, though - and carer burnout is a common reason - then the care home will see the true extent of their dementia behaviour and it is then easier to persuade SS to extend the respite and then make it permanent.

I dont know if this makes it clearer

 

[Bevvywevvy]

Canary
Thank you so much for the information, and time you've taken . I am going spare with angst for her and for myself. It's a nightmare. I am utterly in awe of so many people on here who have such a lot going on.

 

[Kevinl]

First 10 years are the worst, after that you just kinda get used to it, trick is keep smiling and keep posting, always someone's here to listen.
K