confusion reigns..

[KatieO]

I've cared for my husband at home for the past 3 years now. He has chronic heart failure as well as vascular dementia. After his open heart surgery, he wanted to come home although he was still very poorly. It was agreed at the time, with the GP making it clear to him, that he could do so, with all the appropriate support in place, until he either needed further medical intervention or I was unable to care for him any longer. He agreed to that, and we also drew up LPAs for both health and finance, which the GP had also recommended we do.

Over the past 3 years, 'support' has gradually diminished, mainly because of Covid, and I now have just a monthly call from the District Nurses and a support telephone call every few weeks from surgery - the GP has also retired.

I have now reached a point where I feel he ought to be in a more professional care situation - he is completely bed-bound, doubly incontinent (this is a major issue that has been happening since he returned home!), and unable to do anything for himself. I even have to feed him. I am 80 years old myself, and really struggling to carry out all his care both physically and emotionally. At the same time, I am having such a difficult time trying to make that decision. Some days I feel quite positive about the proposed move and other days I feel so guilty. I find it so strange that I am being left to make this decision with no input from any medical support people.

Part of me really wants him to be more professionally cared for, but, at the same time, I am feeling so guilty because he only ever wanted to come home after surgery and never return to hospital again. This has been his home for the past 60 years almost.

I haven't been out of this house for the past 18 months, my life has been on hold for the past 3 years, and even saying that makes me feel so bad about myself. We have no family to offer support, and all I hear from the DNs is them telling me I am doing an amazing job, and he is receiving excellent care! I feel as if I am betraying his trust completely.

His dementia has become much more pronounced of late, and there are days when he doesn't even speak to me at all. Normal conversation is no longer possible. I feel so dishonest, making enquiries with care homes, but I'm also at the same time, frightened of changing the situation here.

Has anyone else gone through such stress? I'm sure there must be many of you out there...

 

[Izzy]

Welcome to the forum @KatieO.

I’m so sorry to read about your situation. It really is heartbreaking. I have no personal experience of this but I know that many members will have. You will receive lots of support and understanding here.

I recently shared a booklet on another thread and I wondered if you would find it of any help -

https://www.alzscot.org/sites/default/files/images/0000/0275/lettinggo.pdf

 

[kindred]

I've cared for my husband at home for the past 3 years now. He has chronic heart failure as well as vascular dementia. After his open heart surgery, he wanted to come home although he was still very poorly. It was agreed at the time, with the GP making it clear to him, that he could do so, with all the appropriate support in place, until he either needed further medical intervention or I was unable to care for him any longer. He agreed to that, and we also drew up LPAs for both health and finance, which the GP had also recommended we do.

Over the past 3 years, 'support' has gradually diminished, mainly because of Covid, and I now have just a monthly call from the District Nurses and a support telephone call every few weeks from surgery - the GP has also retired.

I have now reached a point where I feel he ought to be in a more professional care situation - he is completely bed-bound, doubly incontinent (this is a major issue that has been happening since he returned home!), and unable to do anything for himself. I even have to feed him. I am 80 years old myself, and really struggling to carry out all his care both physically and emotionally. At the same time, I am having such a difficult time trying to make that decision. Some days I feel quite positive about the proposed move and other days I feel so guilty. I find it so strange that I am being left to make this decision with no input from any medical support people.

Part of me really wants him to be more professionally cared for, but, at the same time, I am feeling so guilty because he only ever wanted to come home after surgery and never return to hospital again. This has been his home for the past 60 years almost.

I haven't been out of this house for the past 18 months, my life has been on hold for the past 3 years, and even saying that makes me feel so bad about myself. We have no family to offer support, and all I hear from the DNs is them telling me I am doing an amazing job, and he is receiving excellent care! I feel as if I am betraying his trust completely.

His dementia has become much more pronounced of late, and there are days when he doesn't even speak to me at all. Normal conversation is no longer possible. I feel so dishonest, making enquiries with care homes, but I'm also at the same time, frightened of changing the situation here.

Has anyone else gone through such stress? I'm sure there must be many of you out there...

I have been in this situation. It is so isolating to have to make the decision yourself, I know. In the end it was forced on us because husband had a bad fall, from there into hospital and from there to a nursing home. Same as you, too, all I got was that I was doing an amazing job. You are not alone in this horrible situation.
I so understand your fears. My life was on hold for three years too and I felt like a prisoner.
Please continue to make enquiries of nursing homes. You will find them kind and understanding. You cannot carry on like this, it really really is too much. Please keep on posting and ask me anything you like.

 

[KatieO]

I have been in this situation. It is so isolating to have to make the decision yourself, I know. In the end it was forced on us because husband had a bad fall, from there into hospital and from there to a nursing home. Same as you, too, all I got was that I was doing an amazing job. You are not alone in this horrible situation.
I so understand your fears. My life was on hold for three years too and I felt like a prisoner.
Please continue to make enquiries of nursing homes. You will find them kind and understanding. You cannot carry on like this, it really really is too much. Please keep on posting and ask me anything you like.

Thank you so much for your response...it is so awful - feeling as you said like a prisoner, yet afraid to 'break free' ...

Most of the care homes have either not responded at all or confirmed they're not accepting new clients at the moment. As for care at home, which the DNs keep suggesting I have, this would not alleviate matters, simply give me a half hour break each morning and evening.

Anyway, thank you..just nice to hear that someone else understands what I'm saying...

 

[kindred]

Thank you so much for your response...it is so awful - feeling as you said like a prisoner, yet afraid to 'break free' ...

Most of the care homes have either not responded at all or confirmed they're not accepting new clients at the moment. As for care at home, which the DNs keep suggesting I have, this would not alleviate matters, simply give me a half hour break each morning and evening.

Anyway, thank you..just nice to hear that someone else understands what I'm saying...

Thank you, I so understand. Care at home would not solve much so I suggest you do persist in the care home route. Have you had any social services involvement at all?
You may need to persist with the care homes, putting your name down on as many as you can.
Warmest, all good wishes to you.

 

[canary]

Hello @KatieO
I understand that feeling of being in a cage. If your husband would be self-funding then you can just go ahead, put his name down on the waiting list of the care home you would like and then move him.

If, however, you would (like me) be dependant on Local Authority funding then you would have to get SS to agree that this is what he needs - and this can be tricky. You may know that carers at home will make little difference (although I have found them a godsend and someone to actually talk to) and what he needs is a care home, but the SW has to put forward the request for funding to the Local Authority panel for approval and they will only approve it if everything else has been tried - and the SW knows this. Because of this, the SW will want to try carers coming in first. Its no good you saying that it wont help - you have to show that it wont work by trying it and it failing before the SW will go onto the next step ie a care home.

BTW, you can also get a sitting service from Age UK and Tu Vida where someone will sit with your husband while you can have a break and maybe go out for a couple of hours. You do have to pay, but it is very reasonable (your husband is getting Attendance Allowance, isnt he?) and it gives you more of a break.

 

[KatieO]

Thank you, I so understand. Care at home would not solve much so I suggest you do persist in the care home route. Have you had any social services involvement at all?
You may need to persist with the care homes, putting your name down on as many as you can.
Warmest, all good wishes to you.

 

[KatieO]

Yes, we have Adult Social Care on board now, currently doing a needs assessment and financial assessment. I 'underwent' a CCG meeting in december - remotely, on the phone for nearly 2 hours, with 3 people I didn't know, as they used the DST to come to the conclusion he was not eligible for FULL Continung Care, but he was awarded partial funding. I'm now awaiting the current assessment results. I have got his name down now at one care home. I just hope I can stay positive enought to make the right decision. Thank you for your kind support.

 

[KatieO]

Hello @KatieO
I understand that feeling of being in a cage. If your husband would be self-funding then you can just go ahead, put his name down on the waiting list of the care home you would like and then move him.

If, however, you would (like me) be dependant on Local Authority funding then you would have to get SS to agree that this is what he needs - and this can be tricky. You may know that carers at home will make little difference (although I have found them a godsend and someone to actually talk to) and what he needs is a care home, but the SW has to put forward the request for funding to the Local Authority panel for approval and they will only approve it if everything else has been tried - and the SW knows this. Because of this, the SW will want to try carers coming in first. Its no good you saying that it wont help - you have to show that it wont work by trying it and it failing before the SW will go onto the next step ie a care home.

BTW, you can also get a sitting service from Age UK and Tu Vida where someone will sit with your husband while you can have a break and maybe go out for a couple of hours. You do have to pay, but it is very reasonable (your husband is getting Attendance Allowance, isnt he?) and it gives you more of a break.

 

[KatieO]

Hi!
Thank you so much for your advice. I'm not sure if he will be self-funding. At first, I automatically assumed he would be, but having read all the informationa bout just what is 'counted' and what isn't , I'm not sure anymore. I'm waiting on the Adult Care Service confirming the actual situation. As you say, if he is classed as SF, then I can just go ahead.

I will explore the sitting service. I have already tried one local agency, but their response was 'not servicing your area because of Covid'. We are somewhat isolated when it comes to healthcare services! But, I will try Age UK & Tu Vida. Thank you.
At least then, I might be able to get out to inspect a care home or two.

 

[canary]

Yes, we have Adult Social Care on board now, currently doing a needs assessment and financial assessment. I 'underwent' a CCG meeting in december - remotely, on the phone for nearly 2 hours, with 3 people I didn't know, as they used the DST to come to the conclusion he was not eligible for FULL Continung Care, but he was awarded partial funding. I'm now awaiting the current assessment results.

This sounds like the Funded Nursing Care portion, which is paid directly to a Nursing home, and only a Nursing home. If you get this it is very good evidence that a nursing home (and not a care home) is required.

 

[PippaS]

It sounds as though you are doing amazingly well - in fact doing the job that a 24-7 group of staff do for my Dad at his nursing home and you are long past retirement age! Please don’t feel guilty and do seriously consider the move. You will then be able to visit him and spend quality time with him without all the pressures. If you battle on and make yourself ill then he will be completely on his own. Investing in your own well-being will be better for him too but I know how hard it is.

 

[purpledaffodil]

I’m amazed at everything you are doing, at 80 and on your own. Bed bound, doubly incontinent, dementia. That’s tough both physically and mentally.

Just right right now with Omicron care homes may still have restrictions but that will ease off again in a few weeks so do keep talking to them and finding out options. Perhaps an initial respite stay or trial? It’s tricky because it can take I think 4-6 weeks to really settle. But it might feel less irrevocable and would give YOU a break and a chance to see what difference it made to both of you.