Having mother home- I feel guilty.

[speakout]

My 89 year old mother has lived with us for 6 years, but had a stroke 3 weeks ago, she is still in hospital on a stroke ward, it could have been worse, but looks like she has lost a lot of mobility and strength in one leg. The care is great ( NHS), she as daily physio and taken to a specialised "gym" in the hospital. Her mobility is improving, but slowly and she can't yet walk without a frame and staff, needs help to get to the toilet etc.
I am terrified about the next steps. My family is pressuring me to have her home now as soon as possible but I can't sacrifice my life like this. We have narrow winding stairs and could move her into a room with a toilet next door, but am guessing she will still need supervision including during the night. I will be having to cook, bring trays of food, and I feel afraid of the impact this will have on my life.
I work full time from home, and I also care for my adult son who has severe mental health problems, situautions with him can often mean night wakenings for me ( he is at times at risk of suicide).
My OH sister and daughter feel my mother would recuperate faster at home- and that may be true, but I would worry about her safety, I would need to learn how to handle her, how to help her shower and toilet etc.
Interesting to note that those family members urging me to have her home are not the ones offering care.
My sister lives abroad- long haul fight- and last visited home eight years ago. My OH works full time- long hours and travels a lot, so is gone two weeks out of every four. My daughter lives in her flat 40 minutes away but also works full time, and has a part time job too ( which feels more like a paid hobby than work) but nnot a lot of spare time.
I tried to have a conversation with my OH last night about the situation, but after listening to me said " I think you can get special chairs, you would manage somehow" I was just in despair that he wasn't listening to me at all, and took myself off to bed early where I lay crying for an hour.
It all feels so hard, I feel very alone, and guilty for just not wanting to suck it up.
Any words of wisdom would be appreciated.

Cross post
can your DD start a capacity assessment for her brother and take this off your plate? If she says "not my fault or my problem" - well, your mum isn't your falut or your problem.

I feel so bad for you being put in this situation by everyone. I would tell your daughter and husband if they are adamant your mum comes home then a rota will be needed between all 3 of you and they need to be available. It's such a big ask and you've been her carer for years already. Please stay strong and speak with your mum

I should add, if my DH stopped speaking to me because I was unable to care for my mother due to increasing medical and care needs I would probably divorce him. He wouldn't though, luckily. He went through it too some years ago, knows what it is like and is supportive.

Winter2020
How tired and wrung out you sound makes me think you might have already had too much on your plate and too little help before the stroke.

I think that is very true. My mother has had several falls already, some at home, some out at the supermarket with a pensioner pick up bus, most have involved an ambulance. And my son has had several suicide attempts in the past year.
I feel as thin as lace.

I work on a stroke unit.

If I could I would post you a card. On it I'm would write two sentences. They say 'Mum needs more care than I can give now' and the other says 'Where do you think would be best for Mum now that she can't live with me any more?'

Write it yourself, put it in your pocket, and read out those sentences in every conversation you have about your Mum over the next weeks and months.

When you're with your Mum, forget the sentences, relax and enjoy your time with her. Be her daughter, not her carer. And don't even THINK about taking a severely disabled EIGHTY NINE YEAR OLD home to a house with stairs where there is quite obviously only one person who is in any way aware of what it takes to care for someone physically. People who bounce back from disabling strokes to their previous level are very rarely this age or previously needing care, take it from me.

Come back to this when people try to guilt you. I'll snarl at them for you.

OP

Please please go away for a week. When your Oh is home. Let him take care of your son.

Oh OP, I really feel for you. We are out the other side now as MIL passed away recently, but caring for someone with such a high level of need nearly broke us.

Perhaps what is really needed is for you to go and talk to the care team at the hospital. Tell them what you have told us. Tell them that it will be impossible for you to care for her at home, and explain about your son's needs. Ideally, what needs to happen is that the hospital discharge team, together will social services, will decide that the best place for her will be a care home, and that way the 'decision' to put her in a home is taken out of your hands, and your uncaring family will have to lump it.

If she didn't own a home of her own and has negligible assets, then the state will pay for residential care. You do not have to pay anything at all - and whatever you do, don't sign anything resembling a document saying that you will.

In this scenario, you really need to put yourself first. It's not just your mum you would be looking after, it's your son too, by the sound of it. What will happen if you become unwell with the stress of it all? You'll be no good to anyone. You have already gone above and beyond for the last 6 years. Time to put your foot down and put YOU first. Your mum sounds like she will need a level of care that will take too huge a toll on you. I would explore residential options. And remember to take care of you!!

But it's not putting herself first. It would be totally unsuitable for her Mum's needs to come back to her house. This should barely be a discussion!

You don't want and feel unable to be her carer going forward.

It's as simple as that. Your daughter and husband don't get a say because they're not proposing to care for her, they're proposing that YOU care for her.

They don't get to put this on your shoulders or dictate what you do with your life.

And you are not selfish to want to make your own decisions and live some part of your life for yourself, not other people. Don't let anyone tell you this is selfish.

The first thing I'd start saying to them is "Do you own me? What gives YOU the right to make decisions on MY BEHALF about what I can or cannot manage, and how I should spend MY time?"

PermanentTemporary thanks for that idea. I will do that.
I need to remind myself too that my mother's needs may not be best served at home- no matter what she or my family thinks, an added layer to my needs vs her needs.
I am not trained in handing her, she may be unsafe or fall, I am not always at home. I fear she may become isolated- even living at home, I can't give her the social community she needs.

Normally I have a fierce snarl, but seems to be more of a whimper at the moment,

Please, please, please don’t allow yourself to be emotionally ‘bullied’ into taking on this caring role.

We had a very similar situation with my MIL. TBF, she lived independently until her mid 80s and we were literally 10 minutes away from her by car, but she started having falls, deteriorating mobility and toileting issues. She ended up in hospital and it was decided by OT that she would be discharged as there was nothing more they could do to treat her. There was no care plan in place but because she had some savings, we were given contact details of a private care company and told she was just going to be discharged and it was up to us to arrange everything.

MIL ended up with a live in carer from this company (costing nearly £7k a month) and it was a disaster! It wasn’t the carer’s fault, but MIL’s needs were too complex. She wasn’t sleeping, so kept the carer up all night so she was too exhausted to do her job. Because of the toilet issues, her sheets needed to be changed 2-3 times some nights and it was impossible to clean MIL properly in a standard bathroom because of her mobility. We ended up doing a lot of the extra work because the carer was struggling. Sadly, MIL couldn’t see this, she wanted to stay in her home and the social workers all said, if that’s what she wants, she has to remain in her home whatever! It was madness because MIL was having a poorer quality of life struggling in a totally inappropriate environment.

Eventually, we encouraged her to try a lovely care home for some respite care, and the transformation was incredible. She had others to chat to, there were activities and things going on every day and organised trips. Things that a single carer couldn’t possibly do plus appropriate facilities for her physical needs. During all this, the original care company - probably because they were losing MIL’s business, ‘reported’ us for putting her in a care home against her wishes to ‘protect their inheritance’ so we had to battle social workers too who believed we were manipulating her.It was dreadful on top of the stress of trying to do the right thing.

We finally succeeded and my conscience is clear that MIL’s final years were in a place of safety, care and dignity. She was far better looked after than ever we or a single carer could have done. The time spent with her was quality time too because it wasn’t about us attending to her needs, we could just sit and chat and I’m glad we had those precious moments.

Yes I bet you can hardly get the words out. You shouldn't have to- there's no way this should be seriously under consideration. That's what the card would be for - to give you a script when you an barely speak for strain and distress.

💐

tailinthejam Ideally, what needs to happen is that the hospital discharge team, together will social services, will decide that the best place for her will be a care home, and that way the 'decision' to put her in a home is taken out of your hands, and your uncaring family will have to lump it.

That is what I am hoping for- the team to decide that my home would be unsuitable- I have stairs like hogwarts, not so grand, but badly planned extension work left the staircase with five landings, five flights of stairs ( five steps in each) and five turns. Technically she could live on the ground floor if I turned over the living room to her, but I have no bath or shower downstairs.

@speakout Ive just realised, we have read and supported each other on the Narcissistic Mothers thread too. That is yet another facet in this scenario that you need to think about. This isn’t a sweet old lady who just needs some TLC in her dotage, this is someone who has made life very, very hard and unpleasant for you in the past. You must feel absolutely no guilt or feel that your judgement is clouded by her history as a mother. You need to look after yourself first. Xx
(Please PM me if you want to chat. Been there, got the T shirt with an elderly, needy parent)

In theory, before she is discharged, they should send out an assessor to check things out and measure doorways and whatnot, so hopefully they will take one look and say that your home is unsuitable.

Be warned - their job is to discharge the patient from hospital to free up a bed. The quickest, easiest (and cheapest) way for them to do that is to send her home to your house. You may have to be very assertive. Can you get your/your son's GP onside, as someone like that telling them that you will be unable to cope, either physically or mentally, with looking after her as well as your son.

I'm crying for you. I've been reading the thread for the first time just now and thinking, 'OP will be the one having a stroke soon, never mind her mum!' because of the amount of work you do and the pressure upon you. Have you had your blood pressure checked? I'd get that done if I were you.

Your GP might be a good port of call at this stage. You're waking up crying. You cannot take any more. You really can't. Get an appointment and say so, get it on record.

I am in my 60s maybe it is unrealistic to expect much more for my future.
Just do as I am asked, take care of my mother and quit moaning.

I was in this position in 2021, but with only my dad to care for. I sucked it up, did what I could - and still do what I can. I didn't have a mentally ill son, a selfish husband and an unaware daughter and my own business to contend with! I learned to think 'I don't exist, it doesn't matter what happens to me.' Don't let that happen to you.

Two years later I'm not as unhappy as I was. For now, it's ok. But I repeat, I have nowhere near the pressure in my present life that you have in yours.

I'm thinking of you, OP. Say no, firmly. Your mother, no matter how much you love her, cannot come home.

Yes, another messy layer. If I tell my mother we may be considering a care home it wouldn't be an angry response, it would be a " just tell the nurses to slip something into my tea, I know I am no use to anyone now".

Covert narc.

I am so sorry you find yourself in this situation with your Mum and your family.
I think you're feeling doubly effected because of the lack of support from your family in what would be a very worrying time anyway.

Johnprescottspyjamas explains the situation very well.

I'm not sure of the legally of your DM living in your home. I'm pretty sure she won't have had a tenancy agreement but she may have been contributing to household expenses, so I'm not sure what would happen if she wanted to return and you didn't want her to. It may be worth checking this out (Aged UK website is a brilliant source of information on housing and care). What i do know is you have the absolute right to say you are unable to provide care for her.

I'm sorry but I think you need to be prepared to play hard ball on this. It may be a while before your DM is ready for discharge however it is totally appropriate for you to be saying to the hospital staff and social services that you will not be able to support & care for your DM in your home. Say it loud, say it often. I like the pp suggestion to say to the staff they are not to discuss discharge arrangements with anyone but you. I also think you need to gently brooch the subject with your Mum. I know your DD is bigging up the going home, but you need to prepare her for the inevitable. "Mum I'm not going to be able to help you at home; can't take you to the loo, bath you etc. There are times when I am out of the house" etc etc.

What you say is "I can't provide a safe environment for my Mum at home". Don't get drawn into the how's and the why for's. I can't provide a safe environment for my Mum at home.

StopStartStop thanks for your kind words. x

Both you and your house sound unsuitable to look after a very frail woman post stroke. You cannot install a stair lift with those stairs so your mother would have to live upstairs in a room near a bathroom, so no interaction in family life.
You are in your 60s so likely to be not strong enough to lift your mother if she falls. You already have caring responsibilities and have a job.
How could anyone think you could have your mother home? Surely if the O.T. did a home visit they would report that your mother could not return there.

Social worker (although academic rather than practising now) here OP.

Please talk to the discharge co-ordinator and / or allocated social worker about how you are feeling. You have explained yourself very clearly on this thread. Take some of what you've written into your conversation with them.

It is in no one's interest for your Mum to be discharged to your home / care, in the short-term at least, from what you are saying - this is the point of 'discharge to assess' in care home settings. It may not be what your Mum wants but it doesn't sound like she has any legal right to return to your property and / or require you to make the adaptations (temporary or permanent) that might be required for her / carers' safety so, put simply, what she wants is not on offer.

I am sorry your wider family are not listening to you. Unfortunately if you have been a bit of a pleaser / coper it can be hard for people to really grasp what you are saying and that no means no.

If you don't mind me saying, it sounds like you need an advocate - even the best of up need help to speak up for ourselves at times! Is this something the carers' organisation you are linked in with able to offer?

Oh, and categorically do not say this "Technically she could live on the ground floor if I turned over the living room to her, but I have no bath or shower downstairs"! You are jumping to solving a problem in a way that is going to have a significant impact on your home and family life, which already has stresses and strains in it, for an unspecified period. Don't be the person who suggests it! 🖐

Ask yourself if you would expect any child of yours to do what your DM is expecting of you?
It's not reasonable and it's not fair.
My DM ended up on antidepressants and BP medication looking after my GM who lived to a fine old 89. My DM, who then had her life back, was killed in an accident in her z60's a few months later.
One life OP. Time to put yourself first. This is the turning point. If you don't overcome this hurdle and stand firm it will be downhill all the way.

Stay strong, OP. If it helps, think of it as putting your son first, you cannot do everything and your mum is better able to be in a care home than him.

the advice about repeating phrases is really good