Please help, need advice - got respite for dm but need permanent

[ZaZathecat]

Well things seem to have come to a head and I know I should have forced dm to go into a care home when I had the chance. Now she's got to the stage where she's pulling the emergency cord regularly because she's distressed and wants me (happened in the night once and they had to send the paramedics round because I slept through the phone ringing). Today I got a call from them just an hour after I'd left as she couldn't find the toilet, and I found the kitchen floor flooded for the 3rd time in 2 weeks. She's confused (dementia), has trouble seeing anything and she has fractured pubic bone making her mobility very poor. She has 4 carers a day plus me but still, this is it isn't it?

I have been looking at local homes and the most suitable one has no permanent vacancies at the moment but can do respite for a few weeks - which at least would cover my one week holiday in October. I think I'm going to take it and hope a permanent vacancy comes up there in the meantime.
What if it doesn't though? I will get back from holiday the day before her respite finishes. Please tell me what to do, I'm feeling a bit desperate!

Notes made, I'm ready to go into battle tomorrow! I'm a very non - confrontational kind of person so I'm feeling lots of trepidation. I have recently been logging all the emergencies and mini dramas that have gone on with my mum so I'm hoping that will help.

Being non-confrontation is good, showing you are getting to the stage where you cannot cope is good. I found that quite often I did not even have to put on an act as I really was emotionally drained. Good luck, I really hope you get a good outcome tomorrow.

Good luck tomorrow. The assertiveness broken record technique, repeating the same phrase, is powerful- work out some key phrases about not believing she is safe, insufficient care in place etc and repeat..... good luck

TheSandwich always has such good advice. My phrase was, " She is a vulnerable adult, she only has me to fight her corner. I need to know that the package you put in place for her absolutely guarantees her safety.

Thank you sosidges!!fiver on its way😄😄. Great suggested wording from sosidges. Good luck.

That is a really good phrase Sosidges.

Good luck ZaZa

Ask to speak to the OT before they assess her and explain your concerns. I found if they assess the confused patient, they will ask for example, Can you wash yourself? The patient will say oh yes I wash myself and the OT will take that at face value. You need to give them the full picture before they assess your mum.

So, hospital were ready to discharge dm today. I spoke to OT, who was quite sympathetic and then the SS person who was like a brick wall. She didn't want to listen to me and just kept repeating ' the nurses will have to assess her and fill out a checklist'. Her main objective seemed to be to ensure the council don't have to fork out anything for dm's care in 3-4 years when her money runs out.
I'm pretty worried how this assessment is going to go with my mum saying 'oh I'm fine" to all their questions. And watching her behaviour in hospital is a million miles from the chaos when she's at home.

I have emailed the social worker at the LA with a list of concerns and report on recent incidents. I hope this will be taken into account and that dm's carers will also have some input - will they?

I'm feeling drained, and fighting for something that dm doesn't want is gut-wrenching.

Oh ZaZa I am so sorry.You must feel exhausted. You are doing your very best for her interests whether they see it or not.Well done.And Look after yourself.

Apparently the night nurses have to observe dm over 3 nights for the Social Services assessment. I don't know what else they will do or who they will talk to (they're certainly loathe to speak to me). Meanwhile I have found a local home with a space at the moment and they plan to do their own assessment of her on Thursday with a view to possibly admitting her next week.
It seems a nice home but mega-bucks, so we'd have to stay on waiting lists for less expensive places otherwise her money will be gone in no time.
Dm is ok-ish in hospital but I worry so much because unable to read due to her bad eyesight and she can't seem to see the TV either as it's too close to her and small, she's just completely un-stimulated except for my visits. It's the worst thing for her dementia.
Does anyone know how SS will assess my mum, apart from the 3 night observation? There's so much more to see to get the full picture.

Get her into the expensive home asap and then keep the pressure on the homes you're on a waiting list for. Sadly rooms do come up fairly frequently especially in a bigger home - about 15% of over 75s will die every year, 25% of 85+s, so if a home has 50 elderly frail people in it then very roughly speaking a vacancy is going to come up every month. Homes will often have a long waiting list but this will have lots of people who don't want to go into a home yet but want to be sure they're high on the list when the time comes, so even though they are ahead of your mum on the list they will turn down a room that's offered and your mum will leap up the queue.

Also remember when your mum's money runs out the local council will be duty bound to house her. Some homes take both private and council residents, and it might be worth choosing one of these in the hope that when her money runs out she can stay on there with local funding.

Thanks Purple, yes that is the basic plan. I feel we need to get the SS assessment though because it will take a while to sell dm's flat and we'll need to make use of the 'deferred payment' they can offer.

Zaza I am glad you have found somewhere- hope the assessment etc goes ok. Look after yourself.

Latest update - I know you have been on the edge of your seats ;-)
SS are going to tell me tomorrow when assessment is complete but they indicated today that 24 hour care would be recommended, probably in 'assisted living'. However they also said there was no availability at the moment and that she'd probably have to go home in the meantime. If that's the case we'll use the £££ home to bridge the gap. Have to see what tomorrow brings.

I think I'd be asking them 'how will you ensure dms overnight safety if discharging her home'. I'd also question how appropriate assisted living (which I understand is for people that are still pretty independant but just need a bit more help) is as a placement for someone who is falling and has dementia.

But at least they are starting to seem like they'll pay for care - it's just making sure its the right setting!

They won't even be paying for at least 3 years because dm will sell her flat to pay, but the way the social worker talks to me you'd think I was trying to steal the crown jewels.

I wondered how things were- sounds like some movement but stick to your guns. We had brilliant help from an independent financial adviser. Hope you are doing ok. Take no s*

If they say assisted living, and a place comes up in assisted living, will they expect you to move her. I say this because DM moved from hospital to Extra Care (which I assume is the same) and it took a good two months for her to settle and learn new routines. There was sufficient money so SS did not need to be involved in the decisions, but for the first few months she was there she needed quite a lot of additional paid for support, eg the carer used to take her out daily to Tesco so she could learn the route and recognise her new home. The Manager also recommended that she have 24 hours care over the first few weeks, which my mum refused, though instead we had an incident where she woke up confused and called the police.

You may want to avoid two moves. I assume you will want to avoid a situation where she burns through her money in a care home and then for SS to say that they will only pay for assisted living.

I don't know the solution but perhaps worth talking through scenarios.

Good luck. Its really tough making decisions when you really cannot know what will happen next or how a parent will decline.

We're going through this with PIL at the moment. Really sad because you're using your energy fighting, rather than caring for the people who need you.

Hope your Mum settles in to a home quickly, and that you can get a bit of your life back!

Yes ajan and fighting for something dm has always, and continues to say she doesn't want. However from the last 6 months I can see it is what she needs.
Needmore I don't think we'll be able to avoid 2 moves whatever happens. Either she'll go home with a (hopefully) adequate care package until the Extra Care place is available, or she'll go into aforementioned v expensive home until there is a place either in Extra Care or a cheaper care home. Have just heard from expensive care home that they could admit her on Wednesday, which is a bit too late for me really seeing as the hospital are desperate to discharge her. Don't really want her to go home, then be uprooted again for care home, then again later for cheaper home/Extra Care. Can't wait for all this to be over and I can sleep again!

SW said she won't have the final decision on what they plan for dm until Monday, so she's in hospital until then anyway. However, it seems they plan to send her home with the same old care package , until an Extra Care place becomes available. On the basis on that I had to make the decision this afternoon (there was a deadline) whether to put her in the excrutiatingly expensive private care home from Wednesday. In the end I decided to do it, based on the assumption that if I don't, she'll be back in hospital within weeks, possibly with a worse break or more dehydration induced delirium. Hope I've made the right choice. I'm wondering whether our putting her into private care will make Social Services put her down the bottom of the list for the Extra Care housing - does anyone know?
Still shaking. Am probably a wimp. Actually I know I am.

Have you asked if your mum is entitled to the 6 weeeks respite care. We did not have to pay my mums fees for those 6 weeks. It might be worth asking about this. So sorry you are having this hard time. You certainly are not wimp. It is a fight on so many fronts that drains you. Battling for your mum and sometimes against her. Then the hospital and the social workers. On top of that trying to keep home life together. It is like trying to swim through blamange

No I didn't ask about free respite care Sosidges, I didn't know about it. However I did mention I was hoping to get a loan I'd heard about, which I'd heard Social Services will sometimes provide while the property is being sold, and the social worker told me "we wouldn't pay for THAT place anyway!", meaning it's too expensive I guess. She's very hard to talk to and always puts her hand up to stop me speaking and makes me feel, as I said before, like I'm trying to steal money.

When I was a teenager, I spent six months working as a care assistant in a nursing home. Among the criteria for admission to the facility where I was working were being over 65 and not having dementia. We had some residents who did have dementia which had worsened over time whilst they aged in the home which had become theirs.

This was a private home and most of the residents were to my knowledge sufficiently wealthy that their care was paid for by them.

I mention this because, in the face of what you have described, the suggestion of an assisted living space does not sound appropriate. I am far from a professional, but what little experience I do have tells me that the care of people who have dementia is extremely specialist if it they are to live in a way that allows them to retain their dignity. I feel for you and hope that you are able to find a way through this. When I worked as a care assistant I did not get involved in conversations about wishes for the long term involving money and relatives, but I was on the periphery and did see how difficult it was for those who felt abandoned and those who felt as if they had done the abandoning, whichever way around it was.

Sending

I suggest you speak to AGEUK. They gave me lots of good advice.My understanding, although this was 5 years ago, was that the basic contribution for respite, was made even if the home was more expensive. I expect different LAs might have different rules though. This really is the blind leading the blind.

I don't know if you have posted on the other elderly parents thread, but there is so much experience on there.