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.

OP, I agree with this completely.

She needs specialised care and a team. Not a middle-aged layperson who is working full time, is already looking after another adult with special needs full time, and has no support herself for any of that.

OP, tell anyone who criticises your decision and right to say 'no' to having her come back to your home that they are welcome to step up and become her fulltime carer. Because that is what she requires now.

Tell the people looking after your mum in hospital NOW that you can no longer look after her in your home. That they will need to sort carers and a place for her. Do not feel guilty about this.

You have provided 6 years of care for her and saved the NHS thousands of pounds on her care. It's their turn to step up now. Stand firm.

In your situation I would not let your elderly mother return home. Sadly her needs have greatly increased and it is going to be very demanding to look after her well at home. And she may not regain much mobility etc and is certainly not going to recover to the same stage she was at before the stroke. So push back against family pressure and push back against the hospital who need to assess her carefully before discharge and advise you on how to find appropriate care for her.

Do not let her come home.

She will go to the bottom of the waiting lists if you do.

Caring for a mentally ill son and an elderly mother with mobility issues on your own a lot of the time whilst trying to run a business is just not possible. It will break you. Don’t feel guilty.

I have just come back to this thread, and really overwhelmed by the support, information and validation. Thank you.

I can see now that coming home may not be the best option for any of us.
My mother's safety may be compromised, she would become isolated, I may be unable to provide the best care she needs ( no shade on me-I am only human).
My mother is a very chatty type of person, in the past couple of years attending a day centre for elderly, and she loved it. Even in hospital she has created friendships with other patients. She thrives on chit chat.

I will speak to thhe hospital and have some discussions.
No my mother has never owned her home, she came from a council LA rented property before coming to live with me, so no property or signifiant assets.

You are amazing 💐
I think your son is going to be your priority and I think you are right about your mum thriving in the nursing home environment

@MsEmmelinePankhurst - a really good comment. Both my parents died of strokes - in the case of my dad it was a series of small strokes. My mum had a stroke and then another (much bigger) 4 months later. I worked with the hospital who were very supportive and more or less took the decision out of my hands (but that was a number of years ago). I think it is important for you to remember and for your family to realise that a stroke at 89 changes everything. Sadly your mum will be 'different' - my mum became very cold and angry, my dad lost his short term memory and fell quickly into confusion. Stand firm - it would not be good for you or your mum to come back home to you.

3 weeks is nothing. My mum had a much milder stroke 2 weeks ago and every conversation we've had with the hospital suggests it will be a number of weeks before we are thinking about next steps.

I honestly think social services would become involved in their role protecting vulnerable adults if you tried to take her home at this stage.

helpfulperson having her home at this stage is not a situation I would contemplate. My Mum's safety and recovery are of great importance.

I agree that the effect of strokes can vary hugely.
A woman in my mother's ward had a stroke- a slight impairment to her arm and was discharged after 7 days.

Just say no. You need to refuse any attempt to discharge her to your house. It would not be safe for you or her. Hopefully she can be moved to a rehab facility which can then become a permanent care home arrangement.

She does sound like the sort of personality that would do well in a nice care home, however, if her care needs could be met at home, without your input, with a package of care, you will have to be very firm with Social workers, as they will often not want to fund care for someone without trialing home with a package of care.

This. We looked after my mum and one day I was sitting with tears dripping off my chin and my husband said ‘it is me or your mother’.
We sorted out a residential home and she was quite happy there.

I must be honest, I'm still cross at the comment your OH made about a "special chair". How special is it?!

Have you informed Adult Social Care that she'll need to go in a home? It's handy to have them informed early. Even if the hospital are doing it, speak to them too.

Also, if you have any health issues, you need to mention those. A categorical "no" should be fine alone, but me saying I had a previous spinal injury probably made it less of them pressuring me.

In terms of other family members - who I will happily talk sense to if you can't face it - you need to point out her life will be lonely and boring in one room. A care home would be much better.

EmmaEmerald · Today 15:41
I must be honest, I'm still cross at the comment your OH made about a "special chair". How special is it?!

Yes it made me cross and upset too, but I have reminded OH about the "special chair" comment several times today and he knows it was a thoughtless thing to say.
I can only imagine such a chair, a combined relaxer, able to make meals, do laundry, keep company, shower and attend to toilet needs.

My OH had a talent for talking shite.
I started a business 6 years ago from home, while caring for my mother, adult DS with needs, and an older teenager going through exams at school. Again with my OH away a huge amount with work.
Within 4 years profits fom my business were double his salary, but I was working like a dog- I would ( and still do) work almost every day, getting up at 5.30am before the rest of the family were up and needed attending to.

A couple of months ago my OH was watching me work and said " You have been so lucky- that business just fell into your lap, didn't it".
I am not a violent person, but if I was I would have smacked him square in the jaw at that moment.

That sounds absolutely exhausting @speakout . Maybe it’s time to look at your whole work life balance and take your foot off the pedal a bit. If you work nearly every day, what time do you have for yourself when you have such heavy responsibilities? Do you go out with friends, go on holiday, take time off with your husband? Caring for a son with mental health issues coupled with an elderly mother would be crucifying for anyone. Let alone working most days too.

speakout I know how hard you worked on that business - not much use from an online stranger but just wanted to acknowledge that.

You have helped me out so many times with kind words, I don't forget it.

Touch wood, mum's stroke was small and I even anticipated a battle getting her to stop driving, but she knows her limits. She actually had a hard time in respite care because she didn't want to socialise, so your mum may be pleased to have lots of people to chat to.

EmmaEmerald you are beyond kind, and of course I remember our past conversations.
You are a strong wise woman, and your support means a lot. Thank you for your kind words- they are magical.

It is so incredible to hear words like these- even though this is the internet, we are all real people here.
I do try to take as much support as I can and give myself care. I understand the importance of this, and I do prioritise sleep and nurturing activities.

Your words gve me hope and I am glad things worked out - I am so sorry you had to endure such a difficult time. The older I get the more I appreciate and understand the challenges of others - the thought of you sitting with tears is so poignant.
It does seem apparent that it is more often women who find themselves in caring roles.
I have a lot of support from a local carers support charity. They have been through a consultation of clients recently- and 86% of carers- of all types are women. Of the carers 25% are caring at home for more than one individual.
Seems it is often a woman's lot.

I am in full support of you having been a patient in a ward with similar conditions. In my experience no one was discharged without a discharge conference, assessment of activities of daily living needs, home adjustments and assurance that caters including family members have the appropriate certified skills.

Many of the patients like your mother need hoisting to wheel chairs from their beds. The only special chair I can think of is one that lifts you right up and discharges you to bed or chair, but these are not liked by therapists as they do not help develop mobility and cognition which are so important post stroke.
I am much younger and it is sheer determination which has got me to me almost fully independent at home with minimal adjustments.

The old Mumsnet phrase 'no is a complete sentence' applies here. Just say no and mean it to your relatives. If they are so keen the 8000 mile away relative can relocate herself and look after your mother 24/7 in her own home. She will undoubtedly not last long doing it. I feel for you and your mother , but without full support your mother will not thrive at home. What does your mother want or think?

Sorry for the late reply, but having looked after your mother already doesn't mean you have to continue, and why is it on your shoulders?

You have to be absolutely honest and immovable when you talk to anyone involved in her care. You absolutely cannot have her back. It's such a hard thing to have to say, and adult social care will do everything it can to change your mind. But the more you say about your life, the more I recognise (and so will they, if you absolutely lay it on the line honestly) that you cannot care for your son, and for your mother, with a DH who works away.

I and my brother had to attend one of these meetings after my mum had her stroke. There are absolutely no way my brother could take her in (he has a tiny house that her wheelchair could barely fit in and my mum hates his wife with a passion).
I live alone 100 miles away, and would not be able to carry out her care alone if she lived with me (and I worked full time back then). We had to be absolutely rigid and not allow ourselves to be sucked in to any of the suggestions that were made about how we could be supported to have her. We knew that in reality it wouldn't come through.

So they caved, and she was found residential care. And she had 2:1 care and a hoist. Neither of which we could have managed.

I am hitting a blank at ever turn.

My OH, daughter and my mother are all of the mindset that she will be home in a few weeks, a little bit of help maybe needed to get her up and down the stairs, and it will be rosy.
Her care needs have not been assessed yet, but I feel shut down, alone and voiceless.
I talked today to my DD ( 22) about possible other options rather than having my mother home but I may as well have suggested to her that the moon is made of cheese.
My OH is staying with the idea of getting her a comfy chair by the window, and everyone will be happy.
I know my mother is also expecting to be coming home too.
I need to broach the subject with my mother but I know I will get no back up from my family.

I have been seriously considering leaving home and buying a small caravan to live alone in the highlands.

Ignore them all OP, they are talking shite! They wouldnt be doing the caring so they don’t get a say

make sure you have the conversation with the discharge team in your own without them there & be very clear you cannot provide safe care for her at your house. She won’t get better at your house in fact she’s highly likely to be lonely & miserable

(and then seriously consider LTB with your OH!)

It is noticeable that your OH is also in the camp of your mother coming home and you doing all the care. After all it will impact him a lot, too. What does he offer to share the load?

Is it maybe so that there is no precedence when his parents become too frail, that they will want to be cared for at your home (by their daughter in law)?
(Please dismiss if not applicable; it is just a thought)

Another aspect is that while it is of course possible your mother will make a recovery with enough physio/training, sometimes people do not want to admit to hospital staff what they can't do anymore. So they'll say they manage "alone", even if the "managing" means many hours of family support. Plus it's normal to want to go home; it is hard to admit to oneself that it might not be possible anymore. Thus, they might paint the situation in a better light than it really is, and the family then has to turn that imagination into reality (and find many more hours per day than are available without breaking down).

So ask your DD and DH which days they will be taking full responsibility for her needs.