Can I fight for him again?

[SoAlone]

@SoAlone ...just dropping in to give my (exhausted) support. I too am picking myself up and fighting on, when several times I have dropped and said, I can do no more. Once you and I have our husbands settled where we are happy, let’s raise a virtual glass together. If we have the energy to pick the glass up, that is.

Absolutely Amethyst - Count me in !

 

[SoAlone]

Im sorry you are having so much trouble getting your husband into a home

Do you actually need CHC to be able to get into this place, and has he been assessed for CHC?

Yes Canary I do, we have full CHC funding agreed, but because the home is a specialist area centre, fees are high and the additional funding is also required. I wish I could fund it or top it up but I can't. Not sure how many people could afford to fund it themselves at around £2K per week. I don't want him to go there because it is expensive, I want him to go there because it is the best place, with the staff and expertise he needs to be safe and properly cared for

 

[canary]

Ah, I understand now.
Im not sure how CHC funding works - I didnt think they could ask for top-up fees, though. I thought the point of it was that the fees were paid by the CHC funding and not by the Local Authority.

 

[canary]

It might be worth asking about the funding here @SoAlone
https://forum.alzheimers.org.uk/threads/q-a-paying-for-residential-care-tues-24-july-3-4-pm.110328/

 

[Scriv]

SoAlone, my heart goes out to you, it really does. The battle seems oh,so familar. Our couple were both self funding and we haven't been able to get any extra help other than the Higher Attendance Allowance. Maybe that made it a bit easier for us to stipulate where he was and wasn't going to be going - and also maybe that the care home we wanted was in the county. Who knows?
But we also had similar from the hospital ward... they invited the very home where he had been before and we had all said never again, back on two occasions!!! They were so intent on getting him out. It beggars belief, it really does.
We are all here supporting you in the only we we can... hope it helps. And count me in with the virtual glass too!

 

[SoAlone]

SoAlone, my heart goes out to you, it really does. The battle seems oh,so familar. Our couple were both self funding and we haven't been able to get any extra help other than the Higher Attendance Allowance. Maybe that made it a bit easier for us to stipulate where he was and wasn't going to be going - and also maybe that the care home we wanted was in the county. Who knows?
But we also had similar from the hospital ward... they invited the very home where he had been before and we had all said never again, back on two occasions!!! They were so intent on getting him out. It beggars belief, it really does.
We are all here supporting you in the only we we can... hope it helps. And count me in with the virtual glass too!

Thank you Scriv, the support is a great comfort, and you are definitely invited to the virtual glass raising though I have no idea when if ever that it will happen

It might be worth asking about the funding here @SoAlone
https://forum.alzheimers.org.uk/threads/q-a-paying-for-residential-care-tues-24-july-3-4-pm.110328/

Thank you Canary. I need to find out if the extra funding has been turned down or not, then I can raise an appeal with the CHC. But until someone answers a straight question with a straight answer I am in the dark to a degree.

 

[SoAlone]

My gosh, I didn't realise it was so long since I posted.We have been through endless battles with nameless faceless discharge team (which I have renamed DOSS - Department of Sloping Shoulders). These people are apparently responsible for nothing but in control of everything. We had an offer from Assessment Unit to take OH back to wait for preferred home, only for this to be withdrawn a few days later, something we weren't told until we asked if it was happening on the promised day. The reason was that preferred home had finally said it would not have a place until end Sept/ Oct and Unit could not allow him to return for that long. After being pushed towards a home that I hated, to the degree of asking my daughter to visit it and persuade me to change, then it turned out they had no bed anyway. We did agree to look at one that we hadn't looked at before and found the home, the manager and the care manager and their assertion that they wouldn't take him without 1to1 funding for 1st week quite promising. A wonderful nurse I have been in contact with at the Bed Bureau sorted funding and OH was due to move in on Wednesday afternoon. Because of the late time of transfer we decided not to visit that day. Imagine our exasperation when we rand the home to check how he was and he wasn't there! Hospital had blocked discharge over a medication problem and home thought they had told us.
Transfer arranged again for Thursday and, so far so good. Not soon enough to convince us not to make a formal complaint against Discharge Team for their total lack of care and support for either OH or us. Fingers crossed, we may get that virtual glass of wine in a few weeks

 

[Shedrech]

thanks for the update @SoAlone
but what a mess of pottage
I really hope the transfer works out, your poor dad deserves to be settled and you deserve to know that he is so that you can relax somewhat and begin to work out new visiting routines that suit you

 

[SoAlone]

Hi all, finally found some time to drop in again. Gives me such a lift to re-read all the support you guys give on here. OH has now been at new home for 2 weeks, and, dare I say it, so far so good. I haven't been subject to any tantrums and neither, so they say, have they. Just one bout of frustration, when he kept falling over, and he couldn't understand why and wouldn't take advice to stay sitting. Which brings me to the next question for you wise people. Now I know those who know me would say if I don't have a problem to stress about I look for one but, here goes. OH is one full CHC funding for this placement and I understand this is subject to regular review. General Hospital and Home have said he will be reviewed in 6 weeks and then regularly from there on. Does anyone have any experience of these reviews, and is it likely, because he is behaving well ( I am sure it won't last but in case it does) he will lose the CHC funding and have to go on to Social Care Funding and possibly be moved again. I am just trying to prepare myself if there is another fight on the horizon. Update on our complaint regarding the Discharge Team at the General Hospital, it is under investigation and should be complete by 7th Sept. Take care all and thanks again. Scriv and Amethyst, not yet, but I feel that virtual glass of wine getting closer

 

[AliceA]

My OH moved to a Dementia Nursing Home on Thursday from a hospital Dementia Assessment Unit where he had been for just over 3 months. First couple of days weren't perfect but on the whole he didn't seem to realise he had moved. Yesterdays visit was my worst nightmare. He was very distressed, he was incoherent and salivating heavily, hallucinating and behaving in a way I hadn't seen before. He was sat at one end of the communal room at a table by himself away from everyone else. He couldn't stand on his own. I was greeted by staff member to say he had been aggressive with staff and residents and had a couple of falls although not hurt himself. I had gone to watch the football with him and asked if he could be moved to where the tv area was. Reply was 'don't know if he will let us he has been difficult all morning' and 'you need to keep him away from everyone else because he has been really nasty to them all'. I stayed through the first half but he wasn't able to watch, constantly talking to people he was visualizing. When I left I said to a care worker, I am going now can you keep an eye on George. The response was half-hearted at best. I called in to express my concerns to the Ward Manager, who is very good and has clearly read his file very thoroughly. When I mentioned that I felt his condition was due to medication, she was at pain to say he only been given 0.5 Loz. . . . and it would have worn off by now. I was very open with her and said I had reservations about him going there. It is a lovely place on the whole but I was concerned that they wouldn't be able to handle him. I She reassured me and said new patients often have a blip and she was confident they could manage although she was monitoring, as she said on day 1 with a view to applying for additional CHC funding for 1 to 1 care. Which backs up my point that I don;t think they have enough staff, or enough of the right staff to care for him.
Sorry to ramble on but I am not sure I can battle again, the last 12 months have sucked any energy I had left.

I really feel for you, I am sure you will battle on, but you must be emotionally and psychologically exhausted. It must be terrible leaving him and going home. Have you anyone for you? Please just accept this as a big hug. ❤️❤️

 

[SoAlone]

I really feel for you, I am sure you will battle on, but you must be emotionally and psychologically exhausted. It must be terrible leaving him and going home. Have you anyone for you? Please just accept this as a big hug. ❤️❤️

Thank You for the hug. My daughter and 2 grandchildren are very much onside and continue to visit OH regularly and, my daughter takes up the battle whenever I falter

 

[AliceA]

Thank You for the hug. My daughter and 2 grandchildren are very much onside and continue to visit OH regularly and, my daughter takes up the battle whenever I falter

That's good, so many of families are in denial. Take care of yourself xxx

 

[SoAlone]

That's good, so many of families are in denial. Take care of yourself xxx

You too

 

[AliceA]

You too

Easier to give advice than do!

 

[SoAlone]

Easier to give advice than do!

Absolutely, but that's why we are here to listen to others instead of ourselves

 

[AliceA]

Absolutely, but that's why we are here to listen to others instead of ourselves