Month's respite nearly over and I will not cope

[annieka 56]

After several increasingly tough years of caring for my husband, he has had nearly a month of respite care in a nearby care home but it is soon coming to an end.
He is a very difficult person to manage physically and is ridiculously strong but the care home has pulled out al! the stops to make it work (initially it took 3 staff - probably half their staff as it's a 26 room place) but somehow they have managed safely whereas at home, I was not managing at all.
I have visited 3 x a week and it is lovely to see him looking well cared for.
I'm dreading the end of his respite place now.
It took me a full 2 weeks to feel even a bit normal after years of sleep deprivation and stress.
A big factor for me is - I have rheumatoid arthritis and for several years it was in remission (constant medication though) then it became flagged up as mildly active via routine blood tests.
On the day he went to his respite placement, my blood tests came back as showing the R A was highly active - and I could tell as my fingers, wrists, elbows, toes were very painful plus feeling flu like symptoms
He's due back next week but I don't think I will cope. I don't feel strong yet.
I have spoken three times over a week to the Social Worker who makes the placements who has referred it on to the team....
What has anyone done in a similar situation?

 

[Jaded'n'faded]

it depends who is paying. If your husband is self funding and agrees to the placement you can just go ahead and book him in full time. If social services are funding, they will want to try up to 4 care visits per day at home before they will consider a care home. Has he had a care needs assessment and have you requested a carer's assessment?

 

[annieka 56]

Thanks for your reply.
My husband is not self funding. We have no savings. But based on his state and work pension he is financially assessed as contributing £198 a week towards care at home.
He had a needs assessment a year ago and I have asked over the past 2 weeks for a new one.as his needs have changed dramatically.
A year ago he was fully continent and could manage stairs, he lived fully in our home really, he could go out in the car with me and even go to a park for a little walk. (He was in a phase of hallucinations and mildly smashing things up though which is when Social Care and Older Persons Mental Health Team got newly involved. Thankfully that phase ended.)
He's now doubly incontinent, he can't manage stairs, he was upstairs for 2 months having had falls backwards while going upstairs - then he went to respite. Yesterday my son asked if they could envisage him staying there longer and they could not, because he's mobile (paces constantly) strong and resistant to touch and handling.
I have a bit of a dread of the 4x a day care package at home as it will be horrible for all involved when (not if) he resists with all his strength being changed/washed etc as he has a vice like grip.
But perhaps we will have to go through it in order for it to fail.
I've had a carers assessment too, a while ago. I guess I need a new one now.
thanks again x

 

[canary]

Keep on at Social Services for a new needs assessment.
He needs a different home that will be able to meet his needs
Be prepared to make a nuisance of yourself - its the squeaky wheel that gets the oil

 

[sdmhred]

Bless you! Keep hassling the SW and say you’re not well enough to have him home. Would your GP support you?

My mum’s home deals with this sort of presentation, so they need to find one that does….one of the chaps paces all day and I hear him shout aggresively “Stop it, stop it’ when they take him in for personal care. He will also lash out and be put on 121.

But …he’s also a sweetie at heart……

 

[Jude48]

After several increasingly tough years of caring for my husband, he has had nearly a month of respite care in a nearby care home but it is soon coming to an end.
He is a very difficult person to manage physically and is ridiculously strong but the care home has pulled out al! the stops to make it work (initially it took 3 staff - probably half their staff as it's a 26 room place) but somehow they have managed safely whereas at home, I was not managing at all.
I have visited 3 x a week and it is lovely to see him looking well cared for.
I'm dreading the end of his respite place now.
It took me a full 2 weeks to feel even a bit normal after years of sleep deprivation and stress.
A big factor for me is - I have rheumatoid arthritis and for several years it was in remission (constant medication though) then it became flagged up as mildly active via routine blood tests.
On the day he went to his respite placement, my blood tests came back as showing the R A was highly active - and I could tell as my fingers, wrists, elbows, toes were very painful plus feeling flu like symptoms
He's due back next week but I don't think I will cope. I don't feel strong yet.
I have spoken three times over a week to the Social Worker who makes the placements who has referred it on to the team....
What has anyone done in a similar situation?

I am in a similar situation so I feel foryou as I know how hard your life is. Unfortunately we, society keep this disease hidden for all sorts of reasons .It needs much more publicity to alert everybody Everyone needs to know the dreadful symptoms and the consequences for the carer whose life is also blighted. Most people think it’s dear old smiley forgetful ladies and gentlemen and the adverts on the tv don’t help. They don’t show exhausted carers lacking sleep piles of washing due to incontinence mood swings defiance the not knowing what is coming next and the lack of any useful care. We don’t need phone calls. Every part of the country has different systems and some people seem to get slightly better care . Care should not depend on your financial situation and from what I can work out you are better off having no money as SS have to sort it out

 

[Izzy]

I'm so sorry to read aboutn your situation @annieka 56. It really does sound as if it would be impossible for you to have your husband back home.

I would write down everything that is concerning you, much as you've done in your first post, and send it the social worker. Let them know that you are now not in a posiiton to accept your husband home as you are a vulnerable person and can no longer meet his needs. As has been suggested if your husband's and also your GP would support you in this I would enlist their help. Perhaps they would be prepared to write a letter to be forwarded to the SW department.

This must e a big worry for you. I hope you can get something sorted out.

 

[Weasell]

This is a bit of a naughty idea!
But if nothing else works!
But if it comes to the point that they say he is coming home Wednesday.

I would say I could not even look after myself due to the level of pain I was in and that my friend in Swindon had offered to look after me while I am so unwell, so very sorry but I would not be there when he returned.
I don’t actually have a friend in Swindon ! but they don’t have the resource to track me down to the travel lodge or wherever else I disappeared to !