Live-in care

granny23, what a ridiculous situation. I’m so sorry . Not that words from me fix anything.

A bit late in the day, but it sounds as if you have grasped the nettle luckygirl
I hope you can stick to your guns and that the DDs can support you and not muddy the water.
Ignore the “I knew you would do this to me” and think of it as “do this for me”
It is for his own good and while he may seem to have mental capacity in isolated instances, you are right that he does not have or understand the full picture.
Stay Strong!

I would willingly pay a top-up if that was the problem, as we will be self funding to begin with anyway. The problem is the stupidest thing you have ever heard. Our chosen home, which is run by the LA is not quite up to the modern standards and it has been decided for financial reasons that it will close and the site will be sold - BUT NOT UNTIL A REPLACEMENT HOME HAS BEEN BUILT on another site. As the replacement is not even off the drawing board yet, this has been estimated to take between 2 and 3 years to complete. However the Social Work Department has a policy of not admitting residents to a home unless it can guarantee to accommodate them and meet their needs for as long as they last because a change of Care Home is seen to be detrimental to their well being.

Although, when the proposal to close and rebuild came before the relevant committee, it was pended to the late June meeting for further information. Meanwhile, an over zealous clerk to the Council having noted that the Home was to close, jumped the gun and implemented another Council Policy, i.e. no new admissions from the 1st April, with a view to running the home down, pending closure. This was not what was intended. The idea was to keep the existing residents and staff (around 40 of each) in the old home until they moved en bloc to the New home.

Apparently this order cannot be rescinded until the meeting at the end of June. Meanwhile we are in limbo, not wanting to consider the homes offered 'far away' until there is a final decision on our favoured home.

Forgive me if I have remembered your circumstances incorrectly.

g23, is it possible to pay a top up for your dh to go into the home you want. I realise that you are in a different area but we could do that when mum needed residential care. I assume the one you want is allowed dementia patients?

So sad for you Granny23
I think the week before my H went into care was one of the worst weeks.
Had I done the wrong thing?
Would I regret it?
How would he react?
I truly think I felt that more than when he died.
I knew then the cancer was so aggressive and advanced that he was going to die,
In the first days it was almost a relief.
Fight SS and get help from Age UK if necessary, they know the system better than us.

I have just been reading through this thread and as we are at the same stage i.e. DH needing full time care 24/7 it has really resonated with me. The decision has been made that DH must move to a care home and he is in agreement as long as it is the Care Home further up the street from our house. That is where the problems start as SS have other ideas and want him to go to a Care Home miles away. I am fighting this with what little strength I have left, with great support and help from our 2DDs.

Live in Care is not a possibility for us. We have neither the room nor the money to fund it. But reading through the terms and conditions for Live in Carers, certainly puts a perspective on the 'work' that we, Spouse Carers are expected to undertake. 24/7 attendance to the needs of our caree, day and night toileting, provision of all meals and innumerable cups of tea, hours spent looking for lost hearing aids, glasses, etc., endless arguments re what time it is or what day it is, Shopping, cooking, 3 loads of laundry daily, bed changing, floor washing, driving, booking and taking to appointments, dressing, dressing again after an accident, all admin work, tax return, form filling, managing banking, cutting toenails, shaving, etc, etc.

All this on top of the usual housework, maintenance, gardening, bill paying, to keep the home ticking over.

NO - 2 hours off per day or long holidays, NO cover if we are ill nor sick leave, NO statutory holidays. We are of course unpaid - NO carer's allowance if you are in receipt of State Pension. If we do decide that we would like/need a break, then we have to find/book/pay through the nose, for respite care, which will cost more than we pay for our own short break.

Sorry to have indulged in my own rant on Lucky Girl's thread. I hope it illustrates how difficult it is to pursue solutions, ways forward, fight the system, etc. when you are at the end of your tether, exhausted and sleep deprived.

That was my point ann, we are nagging because we care and people like you care and have the experience to back it up!

I know I am nagging kitty but only because I have been there and I know exactly what it was like.
*Luckygirl is going out today, I dont know if she has carers in then , but for nearly 2 years I could only go out on my H's respite day.
I did have carers in for 3 hours twice a week for a few weeks but it didnt work for me.I felt I had to go out whether I wanted to or not and was paying £80 for the privilege.

Haven't read all of this so apologies if I'm repeating, but there is a system called Homeshare under which a person lives-in in return for accommodation, as asked about by Alexa (p.1), see

homeshareuk.org/

I have a friend whose elderly parents have a lodger through this and it has worked very well, particularly when the husband died his wife had important continuity with someone she already knew.

I have friends who have made provision for the time when they will need live-in care, large house with enough space for carer and enough finances to be able to pay for this. But I wouldn't like someone here all the time and neither would my husband. We are both very private people, don't socialise and would hate to have to consider someone else living with us. I do worry about the future sometimes, but what's the point in worrying now when we don't know what future we may or may not have? Now there's a cheery note to end on...

We sound as though we are nagging, dont we Lucky. We just care about you.

Lots of us have been lucky enough to 'know' you and have been friends for years. We'd say the same in real life because we are your friends.

I echo Ann and others. Do not let yourself be guilt tripped over the respite. It is you who needs this Lucky.
Hope you enjoyed your class.

Luckygirl
Ask yourself if your H would be doing for you what you are doing for him if the situation was reversed.
I do know without any doubt my H would not have looked after me.
I had to harden my heart with my H when it came to the end, it was not easy, the very opposite but I was coming to the stage where I resented him for what he was doing to me.
That is a hard thing to admit but it is true.
You are prevaricating from doing what in your heart you know must happen.
Don't be a martyr

Oh Luckygirl You are having such a tough time, I feel for you. I think there are degrees of incapacity and your husband would not put you in this situation if he was fully aware. There are times and this is one of them when you have to make a decision which is in the best interests of you both. Don't offer the option of home or respite/ hospice just be firm and make it a fait accompli. Don't feel guilty, its your husband's illness speaking not the man you have loved and shared your life with. I hope things get better for you both soon.

You sound more than stretched lucky, like an elastic band about to snap. I’m so sorry.

Your descriptions of your situation have encouraged discussions here of the ‘what if’ variety. We have each said clearly that no matter where our health goes in the future we would not wish caring to damage the health of the other. We’ve also told the family (currently more than dismissive as their parents will of course never need care) knowing that if the time comes the decision maker will need support to stay strong. So a huge thank you from us both for being so honest about your struggles.

I’m sure charley is right and when well your husband would never countenance putting you through such physical and emotional pressure.

If respite is possible it does seem the least worst option just now for you both. Sending love.

No day care at the moment Grammaretto - only the hospice and they have a long waiting list.

Any other day care would be full of people 10-15 years older than him and he would hate it. That is why I have not looked into it in any detail.

Jj20 - "looking after each other" is the ideal, but one that I am unable to live up to without myself becoming ill. I am trying to be dispassionate and as objective as I can and recognise my limitations, which are many: physical, emotional and mental.

Maw - I do have PofA, as do the DDs; but the decision about his mental capacity is a difficult one. He was treated as not having capacity when he was in hospital as he was delusional and really not with it. But at home he is more on the ball - a bit muddled at times, but certainly not to a degree that he cannot express his wishes. The problem of course is that he is unable to look at it all in the round - to see the whole picture and what it is doing to me. Clearly he cannot help that, but it does make discussion difficult.

I have suggested to him that he might take up the respite vacancy from Monday while I set everything up for a live-in carer, so that this can be in place when he comes home. I have to sort out the spare room which is full of boxes of inco pads, and equipment that needs to go back to the NHS; also work out how to get a TV to work in there and whether the sofa-bed is suitable for the carer's bed etc. etc. Oh - and clean it out!!

I am waiting to see what he says - his first reaction was: "I knew you would do this to me." Guilt trip or what?

I am going out to my stitching group this morning, and that has made him cross as always, so I will see what gives when I get back.

This reminds me of our neighbours years ago. Their DD had Downs Syndrome and at age 40 she had never been out in the world. Her aged parents thought it their duty to care for her at home. They became ill one after the other . Her brother returned home to the difficult situation and almost immediately found a day centre for his sister. She loved it and when the parents died had sufficiently acclimatised to go into full time residential care.
Have you any day care places near you for DH luckygirl

Aww your post made me think back about how things used to be and should be today, looking after each other.

Lucky the offer of respite from Monday would give you the chance to rest and recover a little. I hope your daughters will support you in persuading DH that temporary respite is essential before your current arrangement breaks down completely. It would also give you some space to properly look into live in care and the hospice will be able to guide you about what is needed.
Sending you a hug and

Does DH have full mental capacity, Luckygirl ?
Do you or the DDs have POA ?
I would hesitate to advise going against his wishes, but few people jump at the decision to go into residential care.
But look at it this way.
If he had another fall or developed an infection he would as likely as not have to be hospitalised. No argument.
If you were ill, he would have to go into residential care . Again no argument.
These scenarios are not so far removed from respite care - it may not be possible to persuade him of that, but you do need your doctor and SS onside.
It would be a huge relief for you, a chance to get your breath back and regroup, possibly saving both your mental and physical health.
He must be persuaded that even temporary care must be considered. I wish you the best of luck.

luckygirl- I am well aware that H is terrified at present and cannot think straight but unless something gives you are either going to be in a heap at home or hospitalised. Things cannot continue and I think you are going to have to make the decision that he goes into the hospice or the home.

If he were 30 years younger, when he was not so ill he would not consider putting you through this hell.

Your home arrangements are not working- why not try whichever is closest to your home first? You need a rest to be able to come to a decision. Sometimes one has to be cruel to be kind.

Oh dear. That doesn't give you much choice if he won't even give it a try. Pity about the hospice as that sounds quite a good idea. Perhaps he will change his mind as time goes on, but it doesn't help your situation now when you need some respite yourself before you get to breaking point. Would he try the hospice as a day patient, as an introduction, or can't he bear the upheaval? Do you think he would listen to someone like your GP or hospice staff if they spoke to him and put your case for respite?

We are still not sure what to do about this. It is a big leap in the dark.

OH has been offered respite in a nursing home from Monday, but he says no. Hospice also willing to try and find bed for him - again he says no. I think we will have to look at live-in.

He gets totally muddled when I try and discuss it with him - but the desire to be at home is all he will say.