MIL Refusing to have FIL home

[sosadforhim]

FIL has prostate cancer &secondary bone cancer - diagnosed 5 yrs ago. He's been doing very well until the last few months -several holidays abroad... a fairly normal life. Last month he suddenly lost use of his legs as he now had growth on spine. A few days later he also became incontinent. The first I've seen him NOT being optimistic about the future. When this happened he was put in hosptial where he received intensive radiotherapy/medication. Since then he's undergoing physio and can walk across room with high zimmer and nurses help...albeit VERY slowly and pained. TBH I can't see him walking again.

He moved from hospital to hospice (for a week) and now to the local community hospital. Again he is feeling very positive, has had his morphine reduced significantly (he's on about 60% less with no top ups) as he is not feeling much pain now. He was on the higher dose prior to this for months. He mainly spends his time in his chair at the hospital all day (apart from physio for an hour). The nurses move him from bed to chair.

MIL is not the caring type. She has complained constantly to the nurses about washing FIL dirty pants as she says they're just shoving them in a bag. The complaints have been made in front of FIL and visitors in to see him. FIL snapped at her and she wasn't pleased. He ended up phoning her from the hospice crying and apologising. She had stated to my DH that it was ok for FIL saying how nice the hospice was, like it was a hotel...but it wasn't him that had to go home and clean dirty pants.

• She told FIL she couldn't understand how carers do that work. When he said it's because she's never done it, she stated angrily "I have, with you, and I hated every minute of it". She said this in front of visitors again. I can think of once she's had to clean him up. *Now the hospital have told MIL they want him home and she is very unhappy with this. *An OT has been out and analysed the 3 bed bungalow to see how suitable it would be for FIL. They have stated the shower room isn't accesible for him, but the cupboard in the bedroom could perhaps be turned into a wet room. *He wouldn't be able to get out in the garden due to access, so would be confined to the living room and bedrom. *She's been told they would get carers a couple of times a day. *She said the next step is for an environmental OT to go out to the house? *She has told us and the OT that if FIL is in nappies then he's not coming home. She said she couldn't manage to deal with it and he wouldn't like it either. Also, that if he still has a couple of years to live, then what kind of life is this for her and him, with him living in nappies... he'd be better off away.
• Because of her disgust about the nappies, I had asked her about a full time carer. I doubted she would get one but wanted to see how she felt about it. When she pointed out she never had the room and I pointed out she had a dining room. Her response was that if he had only a couple of years to live then she had a life too and didn't want to turn her house and life upside down. She is also fed up with the healthcare professionals asking how she is. She said she'd be fine if they all left her alone.
• In casual conversation I asked FIL where he wanted to be. He said he wanted to be home, but would have to be able to go to the toilet because MIL wouldn't be able to cope. Just to be clear, it's very unlikely he'll ever be able to go to the toilet again.

Oh I have been writing forever, I am so sorry! My questions are:

• For anyone in the know, is it likely the health professionals will insist his home is fit for purpose? (3 bed bungalow, non accessible shower room, not able to access garden, possible wet room).
• Would MIL be ABLE to refuse to have him?
• If he cannot go home, what other options would usually be available for him?
• Would MIL lose all of his benefits (inc his mobility car) if he gets put in long term care somewhere? *Can those of you who are carers empathise with my MIL? I just can't at all and i feel bad that I'm starting to resent her. I think if she said she was not wanting him home because of her fear of him getting very ill again and her not coping with that, then i would understand that completely...she hasn't mentioned anything like that.

I'm actually hoping the OT's say the house isn't suitable. I would rather that than have him think she doesn't want him because he's in nappies. I cannot stop thinking of him. He is usually so positive and happy and i don't want him to lose his spirits and his hope.

Even if nobody replies I'm actually just glad to get this off my chest. I can't talk to DH about any of this.

Oh my! I cannot belive how long the above post was...so sorry for going on forever

Sorry no knowledge and no advice but wanted to say you are lovely for caring.
Your MIL is honest about her feigns but SO unkind!
Poor FiL,

Poor man

Whilst I sympathise with your MIL and imagine it's fear and grief that are partly responsible for her reaction, I think she needs to be given a wake-up call.

No advice, sorry.

what a horrible time for fil. I'd like to try to understand mil position but she sounds quite horrible from what you've written. is she horrible or do you think she's cracked under the strain?
i don't think she's really thought it through tbh, do they have the savings to pay for a carehome? because I can't see him getting one for free while they've got assets eg a house. but maybe this is something to look into - the practical implications. might make mil think twice

I can empathise with your MIL to a point and although she doesn't particularly nice about it, there is a lot to be said for a carer to be admitting they won't cope. That said, surely he would come home with a full care package, so MIL wouldn't be responsible for much. Chances of getting a 24 hr carer is probably mimimal, but care package in some areas could be 6 times per 24hrs.

No one can insist on the home being changed to accomodate, if FIL has capacity to makr decisions. Also care package could start as long as their home is safe for carers to meet his care needs wrt moving and handling etc.

Don't know anything much about benefits, but if it's your.FIL who claims them, then that would probably be expected to go towards hia care needs, rather than supporting your.MIL.

Also - how would you feel if he wanted to come and live with you? Could you manage with people you don't know.coming into your house 6 times a day plus district nurses, ot, physio, social worker.

I'm not saying.your MIL is right, but it is better she thinks about it now and objects rather than when your FIL is at home. Although if.the house is in both names, i'm not sure she can refuse him if he wants to move back home.

iliketea I agree it's far better mil is upfront about it now than have him home and then not cope. I also think that because she's not good at hiding her emotions, fil would feel terrible every time she had to clean him up.

I have thought about having him to live with us. However we stay 2.5 hrs away and that would mean he'd hardly see any of his many siblings and close friends.

There is no way he will insist on going home. He'll do what mil wants. Oh, that would actually be awful if he insisted and she was against it. Won't happen... so looks like it'll end up being hospital or care home then.

sorry, never read your post merci. mil will not part with any money. The ot had suggested them selling their home and moving somewhere suitable. She refused. I can see her point, what if poor fil only lives a few more weeks. They don't have savings that I am aware of, however she has said they are skint for as long as I remember but have managed a month in florida every year until last year. I am sure she thinks the state will pay for his old folks home or l/t hospital stay. I can say with all certainty she won't pay for anything because she is always worried about money.

Has she always been like this? This will sound awful, but I've never thought there was a lot of love there. She always made fun of him and belittled him in front of everyone. In the 12 years I've known her we've always got on well. I've never liked her much tbh, I've always found her a bit selfish and she always gets everything her way.

If FIL really wants to go home, would your MIL agree to a few days trial? The hospice may be able to arrange a home trial, but keep your FIL bed for him in case it didn't work.

Also if his prognosis is only a few weeks, he wouls potentially be eligible for continuing care funding which could mean more care would be provided, and your MIL wouldn't actually have to do any personal care, just preparation.of meals

I have known people go home with carer support that includes the carers sorting out the patients laundry / bedding when family thought they couldn't manage too.

Or does your MIL just not want the inconvenience of a dying person the house? Because it's easier to get much more support at home (social care, hospice at home and voluntary sector) to facilitate someone coming home for a few weeks if our FILs prognosis is short, so what MIL would have to do is minimal.

Thanks for your info iliketea, really helpful because I'm clueless about all of this. really believe nobody knows how long he'll live. oncologist had a long care plan for him, his own gp can't see him lasting until christmas, he thinks he's going to be here for years. I did wonder if the OT had notes stating a longer prognosis, given that she was talking about conveying the cupboard to a wet room.

Mil doesn't want her home or life changed around or disrupted for what may only be for a short time. When I asked about care at home, she had pointed out that they won't be there every time he does the toilet and she'd have to do that. That is her main problem... dealing with poo. She would also hate people going in and out the house all day. she just doesn't want him home at all tbh.

No problem. Hope you get a good outcome for your FIL.

OT here. Can't say for sure, of course, but from your description of the house, it sounds like the OT might well conclude it is do-able. Inaccessible shower is not necessarily a bar; a bath or shower is, these days, highly desirable but it is not absolutely essential. There are other ways of getting washed. As for converting the cupboard, I'm not so sure. It would have to be big enough to get whatever permissions are required, then funding has to be agreed. These things can, in my experience, take time. That said, if he could last until Christmas, it might be achievable. The system varies in different parts of the country. Ditto not being able to get into the garden. It's desirable but not a fundamental necessity.

I would see her reluctance as more of an issue than anything else, tbh. If she really does not want him home, I'm not sure she could forced. Avoiding parting with money might be more difficult for her, though. If he goes into a care home, I think there would be a financial assessment and she'd have to disclose their resources. They'd have to contribute if they were deemed able to afford to.

I'm more used to families being quite unrealistic in their determination to have someone home when their illness is terminal so it's sad to hear about a situation like this. I hope your FIL is able to spend his last days/months in peace and comfort.

I'm a carer and a student social worker. I do not sympathise with your MIL. I sympathise with family that make the effort to make their loved ones most comfortable in their final years and struggle with the responsibilities of doing so, but she isn't bothered about him at all! Most of the people I care for do not need any personal care from their loved ones, carers can go in and do all of this. He can have a strip wash instead of shower as your mil won't want a wet room. Your MIL will either have to fork out for a care home or let him come home. The only loophole I can think of in order to get free care whilst owning a home is if they are tenants in common rather then joint tenants (think I have that the right way round?). I feel very very sorry for your FIL, what an awful way to be treated.

If your FIL owns half this house then he has a legal entitlement to return there if that is his choice. He could be discharged with a comprehensive care package that required no input from MIL.

Your poor fil, this story sounds so sad
My brother had bone cancer of which he died from in his teens, it was very painful for him & he was very scared.
My mum wanted him to die at home where he was most comfortable, it was hard work and she never gave up on him.
Caring for a cancer patient is very hard and entales alot of things they never mention on tv: ie keeping them clean by washing them including their private areas, emptying their comode, helping them to & from the bed, nursing them through a very difficult time but i believe a person that is dying from this bastard disease deserves to die in dignity in their own home!
Your mil is being unreasonable and uncaring - i know it must be hard for her but she must think of what her husband is suffering and what pain he must be in.
My sympathys go out to you op, ive been there and seeing someone dying of such a painful slow death is heartbreaking.
I hope your mil sees sense

oh pumpkin, to see your brother and your family go through that when he was so young... I'm very sad for you

I really don't think my MIL realises she'll be out of pocket if FIL goes into care. If that is the case, she may well get used to the idea of him coming home. She already talks about how poor they are (as mentioned above) so this may well be the deciding factor. But then if she does have him home, poor FIL will know he's not really wanted.

The day they found out FIL had cancer, not knowing what the prognosis was, MIL was on the phone to DH talking about they can't afford a funeral

This could become difficult in other ways too. Myself and dh very rarely argue. The only recurring arguments we've had over the years, have been about his parents finances. They've always pleaded poverty (way before FIL got ill) and dh has given them lots of money through the years that we either didn't have or were trying to save. I know all of our lives will be difficult when poor FIL has gone, especially with MIL and money, but I've pushed that aside in my thoughts. That's a whole other thread.

The house won't have to be sold in order for your FIL to go into a care home, it's classed as a joint asset and is still your MIL's home, so they can't turf her out to sell it. They will only count his assets, not hers. That said, she sounds very hard-hearted and selfish, and isn't taking the poor man's feelings and wishes into consideration at all.
If FIL's assets are over £23,500 (sorry if that's gone up in the last year, I'm retired from social work now!) then he will be classed as self funding, but the house will still be disregarded in the calculations because it's MIL's home. He can also claim the top rate of Attendance Allowance to go towards the home fees, and the nursing element will be funded by the NHS. In fact, since he has such high medical needs, he may be fully funded by the NHS, especially if he doesn't have long to live.
Poor bloke, he doesn't need this rotten behaviour in his last months.

columbia, funny you should say that about the house. She seems to often act naive, as if she has no idea of her rights but she was very adamant about the house stating that it's her house and they definitely can't take it. I think she knows how this will all pan out much more than she lets on.

The community hospital where he's been for a week has moved him from a huge private room with dvd/cd etc, to a less comfortable room shared with one other person. They told him (very old man who sleeps all the time). They said they needed rooms for women but then moved a man in. I'm actually wondering if a. they are trying to appeal to mil's sensitivities by places him in less comfortable room with someone else, or, b.this might be where he'll end up forever.