Respite Care for those with only moderate dementia

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Does anyone else have this problem?

I am looking for dignified respite care for my partner who has 2 types of dementia. He is only at the moderate stage as yet, but also has medical issues. I am his only carer and have no respite,because I cannot find what I am looking for.

He cannot be left to look after himself, he needs daily help BUT he is not ready for a care/nursing home and does not want the knitting/jigsaw. colouring sort of activities or to join groups of people being jollied along. He has visited a local facility a couple of times and decided he is 'not like them' and won't join in. For the same reason he will not go to the local memory cafe :dry:

I just wonder if there is anywhere in the country that offers something for those who are, as yet, not drastically affected but whose carers need a break... perhaps there is a need for such a facility, like a caring hotel .....

Do other people think this?
Mary
I've heard of a company called helping hands. I don't know much about them except they offer respite care. Maybe Google it and see if there is something near you .
Mary, if he requires 'someone else there' 24x7, that is difficult indeed. Does he accept that he needs someone else there all the time?

Don't know if this is any use, but you could sound out the Abbeyfield organisation - they are not-for-profit and run a variety of places, from general supported living places to full on dementia homes. There are definitely quite a lot in Devon.

My MIL was in one near me for nearly a year, and it worked very well until her dementia advanced. For me the key benefit was that it was on a month's notice only, so very flexible. I don't know whether they officially do respite, but they might if they have empty rooms for a while???

MIL paid £1600 a month 'all found' (ie, two cooked meals a day, a 'DIY' breakfast, electricity/heating, onsite manager etc etc). All she paid extra for was a morning carer to help her up and with breakfast/bathing.

Sorry if this is way beyond your means however. Which might mean, brutally, that your own real option is for you to 'wash your hands' of your partner, and 'hand him over' to social services, to be moved into a council funded care home. IF you do - and it's effectively 'free' (ie, to him and to you), could you consider having him back with you for 'weekend sleepovers' maybe, so it's not a complete wrench for either of you????
As always, Jenny, the fount of all wisdom on here!

He does not see that he has any problems - that is the main problem - he won't go to the acknowledged nursing/care homes for respite or the memory cafe to give me a break. He won't have carers staying in the house ( we couldn't afford them anyway) whilst I go away. I have almost talked him into going for a day out with our regular enabler - but he isn't keen, and doesn't have any interest in doing anything - even though we live in such a beautiful part of the country where people pay to come on holiday. I just wish someone would offer to take me out for the day every couple of weeks!!

I had a letter yesterday from social services increasing our direct payments - but its no good if I can'[t work out a way to spend it, and then they will take it off us.

I will work it out in the end, but very difficult to get my mind around - a bit like I am finding this newly designed website !!!! :-) :-)


thanks so much Jenny (())
Oh, Lord, Mary, that reminds me of my MIL in the early days!!! She just used to 'sit there' and wait for me to do everything, because she was blithely unconcerned with anything at all - hadn't a clue, no idea how much looking after she required. She just sat there 'like a lump' (sorry, I know that sounds cruel ,but that's what it felt like to me. It made me want to scream my head off. She just 'waited for me to do things for her'......)

I think with the direct payments aren't they best used for hiring care-workers to come in and sit with him - even, maybe, stay overnight if the payments stretch to that? My key message, Mary, is that you must completely give up on any idea that he will 'agree' to anything that takes the burden off you. To him, he isn't a burden, as there isn't a problem.....

It's come to the stage now where you don't wait for 'agreement' - it won't happen - so you simply TELL him what is going to happen.

'Darling, I'm going out now, I'l lbe away overnight. This nice lady will look after you till I come back'.

Just tell him. Don't expect him to say 'Oh, of course, you've been doing so much for me -' - he won't even have noticed! ANd if he kicks up about it, you just say 'It has to be this way' and that's that. Same as you would a small toddler.

But you know, I don't think this current situation can last - I would make plans for 'after Xmas'....and I think those plans have to be that he moves out, and into residential care. As I say, the best now you can hope for is him coming 'home' for the weekends. His 'opinion' on the matter is, sadly, now completely irrelevant......

Oh it's just horrible, isn't it? So, so horrible ....
I so agree with you Jenny, and you have been such a wonderful support to me....

I wish this had just dropped on us more gradually - it all happened more or less overnight, with his intense life threatening illness at Christmas and we often talk about 'last year' when we did so many things - he more or less remembers.

What I have done, is contact Counselling for Carers and I am on their waiting list with an expected appt in about 2/3 weeks. I am sure that will help me 'get my head' around what has happened and look at things more more objectively.

I agree with what the plans are that you suggest I follow. One of the problems is finding a carer while I go away. It needs to be someone who can deal with the stoma as well as dementia. The agency that social services pay for in the mornings charge £17.75 per hour so it would be very expensive, and even our Direct Payments won't cover that.

The Social Worker last week said they would not even consider putting him in a home at the moment.

All this is channelling its way to me walking out isn't it?

Even that is fraught with difficulties. You are so right, it is horrible, very horrible.
But thank you for what you are saying to me, you are so honest and I appreciate that.

best wishes
Mary
Have you said to the Social Worker ' what will happen when I leave him?' THAT is the key question they have to address!!!!

I know it's brutal, but of course SS will try any kind of 'blackmail' to 'make you stay looking after him', as it saves them money. You have to call their bluff.

I guess you could phrase it as 'what if I go under a bus'.......
Devon Carers are sorting me a Carers Alert card, and asked that question

and they want a contingency plan drawn up - when I said there was no one available to call if I fell under a bus, she said she was going on holiday, but this needed some serious thought when she got back !!

On a happy note..

I have been a bit lazy to day and only went for my morning shower at 10.00am - I had already unlocked the door to the conservatory - himself was in bed. And when I came back THE CAKE FAIRY had been, and two lovely large pieces of home made cake were left on the counter!!! How kind. There are a couple of people who might have done that, and I think one of them is ringing the church bells as I type - makes life so much better, these little kindnesses :) :)