Carer has given 2 weeks' notice

Lucky I’m sorry but I agree with notanan that DD2 has no right to ‘be against’ her father going into nursing or residential care.
Can she not see that her feelings on the subject are secondary to what is best for your OH, and best for you?
The same, sadly, applies to your OH. Sometimes people say they want something, but it doesn’t necessarily follow that it’s in their best interests.

Good post jane. I'd add that it might not be in the best interests of their carer!

It's clear that a much better hoist is needed, so that he can be lifted without causing him pain.
A tracking hoist attached to the ceiling would be ideal, along with a special moveable armchair.
Costly, of course, but much less than the cost of residential care.

Even that kind of hoist can need two people. They can technically be operated by 1, but it depends in how easily the person can roll into the sling. So it wouldnt necessarily solve the double up issue

But much easier for those two to use, and much easier for Mr Lucky.

Yes, the hoist does need two people to operate it and both need to be trained.

If DD2 can come and take over some nights then that would be helpful. Can she not see, though, that her mother is nearly at breaking point?

Sorry if that sounds rather harsh.

Some ceiling hoists can have one operator but only if the person in the hoist is quite stable and able to help get into the sling

My main point about the hoist is that the current one is causing a lot of pain to Mr Lucky so it is inadequate, however many carers are there.
The situation needs to be re-assessed.

As the wife of a PD sufferer I am following this correspondence with interest (and some dread, though I know everyone’s PD is different). The notion that someone so ill does not qualify for continuing health care is extraordinary, as if neurological illnvess is somehow not real. I sympathise so much with Luckygirl and agree with everyone who says that DD2 needs to stop thinking about her own feelings and look at her mother’s life instead.

GrannySomerset - my main piece of advice to you is to do everything you can to prevent him falling. We were ticking along in a reasonable fashion until he fell and fractured his hip and he has simply taken a nose dive since then.

I have made several more phone calls about hoist and no-one is getting back to me - no doubt taking a long weekend for the bank holiday.

Social worker and a SSD financial bod were here yesterday and it was so depressing. They are going to contribute just under a quarter of the cost of live-in, but will only backdate it to when the social worker came out and did her assessment, in spite of the fact that I have a letter from the finance department stating that he qualified for help 2 weeks earlier when his savings dropped below the threshold. I do not see why we should miss out just because it took 2 weeks for them to allocate a social worker to come out.

And she did a carer's assessment - which is depressing as you have to keep saying how awful things are in answer to the questions; and because any help that flows from that is to be spent on anything at all - except care!!!! So - she says they might fund a carpet cleaner (because he keeps having little - well quite large - accidents on the carpet. But more likely we will get nothing.

Blimey - it is some battle here!!

Carer has been up with him since 3 am; and I took over at 6 am.

Lucky you cannot go on like this both physically and emotionally you are exhausted. Could you not get respite care in one of the homes and then maybe he stay there. If his savings have reached the limit SS should pay.

SS are evil though. I applied for my dad's carers allowance to be increased when he needed 24 hour care. I got a call from a very nice lady in SS asking when he started needing 24 hour care. I was completely honest saying it was a year before I applied but had been too busy caring for both parents practically 24 hours a day. When they awarded the raised amount they would not back date it because I had not applied for it at the time. It started from the day I applied. I had been warned that they would only back date a certain amount of time but of course forgot in the heat of the moment. It cost him nearly £1000.

Luckygirl if the accidents happen often, he needs to be assessed for incontinence provision.
That should be the community nurses' responsibility, I think.
(In Scotland it is, anyway.)

Yes, I quite understand the advice, and we have had several falls so I worry a lot about the next one. The last one involved a three hour wait for an ambulance, 14 stitches in the scalp, and two nights in hospital, so all too real. Perhaps I should just spend the (modest) family fortune!

I’ve just caught up with your current struggle lucky and can hear your exhaustion and frustration. Would/could DD2 stay for a couple of nights and experience the reality of her Dad’s condition? I think it would be oh so helpful on all levels and could help a family decision. It’s actually feels very unfair to have strong views without having experienced the reality. There’s only so much that can be done in anyone’s home. Good luck with the agency. Sending love to you all.

Luckygirl I am so sorry to read of your continuing struggles , we were so fortunate to have the carers coming in and my DD next door to help . I can't understand why they won't fund your carers , I can offer no advice xxx

Thanks for helpful posts.

We do in fact have pads and a conveen - but they do not stop all accidents. The night bags have been known to leak and the bathroom is too small to get his trousers down and pad off, so it has to be done before getting into the room with the result that there is leakage en route. Why they do not put the pot under the commode whilst wheeling him there I do not know! - I have mentioned this.

The assessor from the new care agency is coming tomorrow so I am hoping for a better service from them - fingers crossed.

I think the point here is that they do subsidise carers and respite care but only after income is taken into account.
When the "clients" savings reach a certain level all their income is assessed.
My H had a good private pension and state pension, this is taken into account for charges and when they need residential care AS is stopped, all state pension is taken and half of the private pension,although as I and others have said, they will try to take all that, even though they shouldn't.
You need a financial expert to weave their way through it.
On the other hand some people seem to buck the system and get everything paid.
I know this is true.

That should have been AA, attendance allowance.

Why they do not put the pot under the commode whilst wheeling him there I do not know!

It might be awkward to get the pot out again if the bathroom is so small.
Why can he not use the commode, with pot!, in the bedroom?
Don't just mention - tell carers what you want them to do.
If they don't do it, ask them what the problem is.

I think he feels uncomfortable stinking out his bed/sitting room. All dignity now lost!

That's understandable, but large accidents on the floor are not very dignified and don't do much for the air quality either.

Dear Luckygirl I so wish that I had some 'words of wisdom', I don't so all I can do is to continue to send my kindest thoughts to you and your DH

Really hope that tomorrow's meeting goes well

Have you considered having an extra carer for some of the time only not the whole day? for example for assistance with personal care. My daughter is in receipt of direct payments and we use some of her personal budget to employ a live in carer and the rest for an agency who provide one carer 4 times daily to assist the live in carer with my daughter's transfers and personal care. Getting her up in the morning and assisting her to bed at night. Would something like this work for you?

Am I right in thinking that luckygirl's OH is now in a home receiving end of life care if so is it appropriate to put this post back up. If I'm wrong, apologies

Brightonbelle59 sent you a PM