What do I do????

[Lady M]

Seeking advice, help and reassurance!
OH in a CH for temporary placement......following on from 5weeks in hospital. This was agreed for respite for me and with the promised of daily physio to try to get him back to previous (before hospital admission )’base line’ of transferring with a rotaunder and two carers.After a week the physios are still not attending!!!
To cut an exceptionally long story he is now having to be hoisted ( he has no mobility), The CH is well staffed...all staff appear caring, ...he is clean and well presented BUT he is hoisted into a chair in a room full of much older, much more physically challenged and with advanced dementia. The TV is on but frequently anyone would be unable to follow due to the noise etc.This environment is damaging his ment.al state I am sure. An activities lady works Monday to Friday for a few hours but it’s usually a sing song then Bingo!
I feel he would be better off in his room, with his own TV but that’s not really what it should be!
It appears there are different areas in the CH and the more ‘with it’ residents shy away from the area where OH is put. When I requested he be elsewhere It was tried one afternoon but not since...appears each has their own seat! Are all CH like this!
I dread visiting as he is despairing....I am unhappy...... stressed and really don’t know what to do....the prospect was originally to seek permanent position.
As this was arranged via hospital, what and where do we go !
Never thought I would feel like this!! And this is suppose to be respite!

 

[Pete1]

Hi @Lady M, sorry to hear about your situation, it is so difficult to deal with. What I can say is that you are able to direct the care home, and outline your expectations. If you feel he would be better in his own room (you know better than anyone else) then tell them. I would suggest meeting with the management and expressing your concerns and expectations....it really doesn't matter if it's a permanent placement or respite. If it helps, pretty much everyone would dread visiting in those uncertain and new circumstances...and every time you go to visit a loved one with dementia there is a feeling of trepidation.

If this isn't the right place then do look for alternatives (if you are a self funder that is a bit easier). It does sound like you have everything against you at the moment, but (cliche time) take each day as it comes, I think that helps.

 

[Grannie G]

Hello @LadyM

It`s awful for you to see your husband in an unsuitable environment and I can just imagine what is going through your mind.

I would check one thing. If your husband will eventually be a permanent resident in this home, will he be in the same area or in the one you prefer?

I wasn`t in agreement for my husband to be in isolation in his own room but the communal sitting room was appropriate for his needs. Had it not been I may have thought differently.

Perhaps your husband being in respite care means his accommodation is temporary and once he is in permanent residence his accommodation may be more suitable.

Can you have a word with the manager.

 

[jenniferjean]

Hi @Lady M , your situation sounds awful. Do speak to the manager and voice your concerns, whether it's temporary or not. What is your OH's reaction to this environment? Is he showing signs of distress? If so, surely the staff can see this. Yes, I'd definitely speak to the manager.

 

[RosettaT]

I had something similar from rehab with OH. He went into a 'cottage hospital' for 6 weeks of physio. I said he had to be weight bearing before I could have him home. After 3 weeks of doing very, very little with him I spat my dummy. I was basically told he couldn't stand or walk. I asked why that was when he managed to shuffle on to the hospital trolley when he was transferred to them. They looked very sly. I insisted they try the next day with me present and after leaving him struggling fof 15 mins trying to stand, I stepped in and helped him to his feet he then walked 30 mtrs. By the end of the week he was walking 100mtrs. I'm sad to say he was basically written off because of his diagnosis and it was a struggle getting him a place to begin with. It was superb support from the SW that managed it. Long story short he lost his mobility again after another infection and 4 weeks more in hospital. I was told he would never walk again, yet here we are 7mths down the line and after 3 mths of private physio once a week he walked by himself with a frame for about 25mtrs last Wednesday.
@Lady M you know your OH, stick to what you believe is right for him, please don't let them fob you off. I'm no push over but I wish I had stood my ground earlier.

 

[Lady M]

Thank you to all for answers , suggestions and advice!
Situation has not improved!!! Manager aware of probs.....said Oh is always asked where he wants to sit!!! She says When other have spoken to him , he turns away!
However, a downturn...he now has UTI(mild at the Moment) so oral antibiotics but also extremely sore around the catheter entry and the scrotum .....has been in bed for two days.as insulin dependent diabetic the infection/antibiotics effect sugar levels....and worse still , his confusion.....As his room is on top floor.( 1 of 4 bedrooms , that all on that floor) ) he is ..away from all people, staff etc...obviously, staff are taking up meals etc
Worse visit today by far.
Long chat with Manager...she feels that respite should become permanent....BUT maybe not in this CH.
She feels that as no mobility....OHs reoccurring UTIs/ infections , three times daily insulin injection (done at present by DN under protest at three visits daily )and general pain levels he really requires Nursing Home. However said it’s very hard to get!!
I am so confused.....and distressed.......I am wondering where we go from here.................so much for respite!
Does anyone have any info regarding Nursing Home Care vis Social Services..This respite was arranged via the hospital before OH discharge....Who would agree to a permanent placement? Who would decide about Nursing Care??? All advice most welcomed.

 

[Shedrech]

hi @Lady M
contact your Local Authority Adult Services as they will need to assess your OH .... let them know that this is a recommendation from the manager of the current care home, and get the manager to back you up, and be quite clear that you are unable to have your OH back home as his level of need is now much greater than you can provide for on your own, even with home care visits
let your OH 's GP know exactly what is happening too and ask if they can contact Adult Services also

 

[marionq]

Thank you to all for answers , suggestions and advice!
Situation has not improved!!! Manager aware of probs.....said Oh is always asked where he wants to sit!!! She says When other have spoken to him , he turns away!
However, a downturn...he now has UTI(mild at the Moment) so oral antibiotics but also extremely sore around the catheter entry and the scrotum .....has been in bed for two days.as insulin dependent diabetic the infection/antibiotics effect sugar levels....and worse still , his confusion.....As his room is on top floor.( 1 of 4 bedrooms , that all on that floor) ) he is ..away from all people, staff etc...obviously, staff are taking up meals etc
Worse visit today by far.
Long chat with Manager...she feels that respite should become permanent....BUT maybe not in this CH.
She feels that as no mobility....OHs reoccurring UTIs/ infections , three times daily insulin injection (done at present by DN under protest at three visits daily )and general pain levels he really requires Nursing Home. However said it’s very hard to get!!
I am so confused.....and distressed.......I am wondering where we go from here.................so much for respite!
Does anyone have any info regarding Nursing Home Care vis Social Services..This respite was arranged via the hospital before OH discharge....Who would agree to a permanent placement? Who would decide about Nursing Care??? All advice most welcomed.

My husband went straight to s nursing home from hospital just over a week ago / I think - I’m losing track! He fell on his first day of respite and broke his hip and spent 3 weeks in hospital after hip replacement surgery. Once I agreed with SW and hospital where he should go they did everything else, prepared, packed and transported him. He is there for 4 weeks assessment to see if it is right for him. He has very little mobility, eats only a few teaspoons full of puréed food at each meal and his speech is reduced to an occasional whisper. I think he is slowly dying. I have never seen him so thin. I have been told I will be charged £139.50 a week until a decision is made as to what happens next. It is hard to judge how good they are as he demands so little of them but I cannot fault them either.

 

[canary]

You havent been very happy with this home right from the beginning, have you? It does not sound to me as though this care home can meet his needs and I think this us what the manager is telling you.. Because of his diabetes he needs somewhere where there is always a nurse on duty. In other words you are looking at a nursing home, rather than a care home, which will be more suitable.

As you are seeking a permanant position, contact Adult Social Services who will be able to assess him

 

[Lady M]

Once again thanks for answering.
At the weekend our three sons and I had a ‘meet up’......we all visit OH separately so this was a great idea and chance to all discuss how OH is with each and also our own feelings......and was extremely helpful to me, putting into perspective so much!
I realise now that my emotions have been very heightened, not surprisingly!
As Canary said, I hadn’t been happy with the CH..in truth I probably would have felt like that about anywhere...
II realise that OH s probably never going to say ‘its lovely here’ but he is more settled.
Time will tell where we go from here......

 

[Lady M]

Well here I am, after a three week break! The reason being I suffered a heart attack......was hospitalised....discovered I have and am now treated for heart failure. And oh yes, of course must carry on taking the newly prescribed pills and not get stressed!! And pace myself!
Well after a rocky start OH has adjusted to being in the CH..( been there 5weeks now! ....he is certainly well looked after........eating well ...his blood glucose levels are stable.....etc......BUt he is very emotional....has been for a year or so.. the CH have called in the dementia crisis team , they are to visit next week! ...the dementia is progressing rapidly......he is totally immobile and is hoisted etc. Physio cancelled as he kept refusing , !
We’re at the end of the temporary placement ...he has been assessed as ‘having capacity ‘ and of course his wish is to come home( he doesn’t know where home is...he just want to be with me) the temporary placement has been extended BUT only to allow time for OT to do a home visit and draw up a care plan then things to be arranged....
I am in shock!
I would be totally unable to continue as before.....the four carer visits a day still left 21 hours a day when I was unsupported!
OH is unaware of my heart attack, he was told I had the flu....sons have been advised to explain to him that I would not be able to do as I used to for him... and perhaps sway him that he would be better cared for where he is! ..but the SW is adamant that OH wishes are paramount!
What about me!
I just don’t know what to do,
The saga continues!!!!! On and on and on....

 

[TNJJ]

I know SW are only their job but it puts so much pressure on you.It is not fair.
21hours on your own unsupported is a lot.
Don't you just love it with the "capacity" saga.o



What about your health and ability to cope?Plus your wishes.?
It seems people who care for PWD get no choice or say in the matter.
I would make a strong point of not being able to manage.

Sending (((hugs)))

 

[love.dad.but..]

I am so sorry to hear about your health which must have been very scary for you. You must be firm and say to everyone who needs to be told 'I cannot have him home as I am unable to care for him and meet his needs as I need to take care of myself as a priority'. Whether or not the SW feels he has capacity to go home he now requires 24/7 care and you are not the person to give it, no one can be forced to care for another. Sounds harsh as he is your OH but I think you have to be assertive and spell it out so the SW has to think again.

My mum looked after my declining dad although his needs at that stage were not physical but mentally and emotionally it had become more difficult...I will never know but can guess if this resulted in a sudden catastrophic stroke for mum and we found her when we arrived for her birthday lunch, she had died the day before and we found dad sitting in their car.

Your OH is being well cared for, now it is your turn...I do not want the same thing to happen to you as happened to my mum and your heart attack is a warning. Please take care of yourself.

 

[Lady M]

I know SW are only their job but it puts so much pressure on you.It is not fair.
21hours on your own unsupported is a lot.
Don't you just love it with the "capacity" saga.o



What about your health and ability to cope?Plus your wishes.?
It seems people who care for PWD get no choice or say in the matter.
I would make a strong point of not being able to manage.

Sending (((hugs)))

Thank you. Hugs are few and far between and gratefully received !

 

[Lady M]

I am so sorry to hear about your health which must have been very scary for you. You must be firm and say to everyone who needs to be told 'I cannot have him home as I am unable to care for him and meet his needs as I need to take care of myself as a priority'. Whether or not the SW feels he has capacity to go home he now requires 24/7 care and you are not the person to give it, no one can be forced to care for another. Sounds harsh as he is your OH but I think you have to be assertive and spell it out so the SW has to think again.

My mum looked after my declining dad although his needs at that stage were not physical but mentally and emotionally it had become more difficult...I will never know but can guess if this resulted in a sudden catastrophic stroke for mum and we found her when we arrived for her birthday lunch, she had died the day before and we found dad sitting in their car.

Your OH is being well cared for, now it is your turn...I do not want the same thing to happen to you as happened to my mum and your heart attack is a warning. Please take care of yourself.

Thank you so much...how absolutely tragic about your Mum....my condolences.....
Thank you also for your wise words, which when I have on my sensible head, I know your perfectly correct......I am fortunate in that our three sons are adamant that they will take this over and deal with, as they’re aware of all the factors.....
It’s just everything seems to be a fight for what is best for everyone.....
Thank you so much for your reply! x

 

[Woo2]

I too am sorry to hear about your time in hospital and your health . Absolutely right @love.dad.but.. you cannot be expected to take this on now and ss needs to be told. Can your gp help with this ? Glad to hear your sons are willing to take this on . More hugs sent and I wish you well .

 

[sausagedog]

You can well do without this ongoing pressure and especially as you’ve been so ill yourself recently. You must emphasise to the social worker that you cannot any longer care for your OH and that you refuse to do so (I know this sounds harsh) but you must if they have plans to discharge him back home. You CANNOT be forced to be a carer for your OH plus it’s the LA who have the responsibility for his care. I hope you manage this and I’m sure your family will support you. I empathise and wish you well.

 

[jenniferjean]

You must emphasise to the social worker that you cannot any longer care for your OH and that you refuse to do so

Absolutely @Lady M , you must REFUSE to do so

 

[jugglingmum]

I'm so sorry to hear of your heart attack, and hope you are recovering well.

I do often wonder how 'capacity' is tested and defined.

You have to REFUSE to care for your husband as others said, you are his wife, and your marriage vows didn't mean to grind yourself into the ground but to ensure he receives good care.

Can you stay at one of your son's if your OH returns home, if this is a possibility , please inform SS that this is what you intend to do, as they are clearly assuming you will shoulder some of the burden of care. I'm not saying it is what you should do, just if you say it with enough conviction so that SS believe you, your OH won't be safe if you do this, and they legally have a duty of care to ensure he is safe.

 

[Bunpoots]

I hope you are recovering @Lady M .

It should be obvious to everyone that you are no longer fit enough to look after your husband. When my dad was going to be sent home after 4weeks assessment in a care home, in spite of the fact that he was totally confused and couldn’t even stand without falling over, I did exactly what @jugglingmum has suggested (except I didn’t live with my dad anyway) and said I was not willing to provide the level of extra care my dad needed and I would hold them responsible for whatever happened...fortunately they believed my bluff!