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.

You wouldn't have to pay for your mother's care home, don't let anyone tell you otherwise.

If your daughter thinks it would be so lovely having granny home, tell her she can move back and become her full time carer.

DD and OH are still expecting a full recovery, home and back to normal.

I remember thinking this when my mother had a stroke, and someone on here told me that it just wouldn't and I should expect things to continue deteriorating. Depressing as that was, she was absolutely right. Strokes, particularly in the elderly, don't just magically go away, they leave lasting damage and very frequently lead on to vascular dementia. This picture your DD and OH have of your mother being the same as ever but just a little bit weaker is just pie in the sky..

I think there’s a lot of people out there that think caring for a frail elderly person just means making them a cup of tea and serving a slice of cake. They have this storybook image of a sweet old lady with a knitted patchwork blanket over her knees, reminiscing about the past, happily surrounded by adoring grandchildren.

The reality is very often far more brutal. It’s often like looking after a newborn, except you know it will eventually get better with a newborn. With geriatric care, it only gets worse. Disturbed nights, endless washing, incontinence, unreasonable demands, sometimes even being physically attacked. Staff that work in care homes should be paid 4x what they are. It’s a very hard job, but at least if you’re employed, you can walk away at the end of your shift. If you’re living with the patient, there is absolutely no escape - even respite care is very hard and expensive to organise.

Agree with this. My 80 year old relative is dealing with all of this caring for her partner with dementia. She gets to escape upstairs to sleep, leaving him in a room, safe but unattended. He has no mobility issues but needs assistance with everything else like a two year old would.

If you need to step away from the thread for a bit, speakout, please do. We'll be here waiting to give you support when you're ready to come back. Look how far you have come, in terms of being able to speak up for yourself and maintain your compassion towards your Mum, in just a week. Take good care.

It’s often like looking after a newborn, but a newborn who can speak, and who is sure that only they know what’s going on in the world, and all around them are fools

If your mother doesn’t own her own home and has below a certain level in savings herself, she will be entitled to free care. I would find out from social services exactly what the situation is.
You and your husband are not liable for the costs of her care.
I agree with others that it would absolutely be the wrong call for you to have her home. You’ve had her living with you for six years. That is a Herculean task for anyone, let alone someone who is also caring for a son with mental health issues who is unable to work. Your OH is away a lot and you are left to pick up all these demands alone most of the time. Enough is enough.
You sound completely depleted and in need of a complete break. Can your OH take a week off work and let you go away for some recuperation? It sounds like you badly need it. Leave your mother in the capable hands of nursing staff , let your daughter and OH visit her. Focus on yourself and gather your strength to stand form when you return.

You don’t sound like you’re receiving much help and support from your nearest and dearest. It’s time they stepped up and realise you are human.

Hi speakoutJust posting for when you might return to the thread

The stroke my mum had was very small - but the immediate impact was big.

I mention this because it sounds like your mum is doing well, especially as I think her stroke was major? My mum is not back to where she was, she never will be... but she can live alone. In that respect, her recovery was a lot better than I expected.

So, as your mum is doing well, you might find yourself needing to make decisions based on borderline things. I agree with you that if she can't manage stairs she shouldn't be there, but I don't know how the local authority will see it. There are posters around whose parents sort of crawl upstairs or shuffle on their bum - this confuses me a bit as I think that takes quite a bit of strength, but apparently some feel more secure doing stairs that way.

If she can do stairs and go to the bathroom unaided, I think they will not want to find a place for her, and you might have to really argue hard for carer visits. You will need to emphasise your own health in that case. There's a big gap between not needing any help, and just borderline managing the essentials of personal care.

Mum has had a few support rails put in the house by social services. If your mum returns to you, those adaptations might be needed, I don't know how you feel about that. We have steps into the house, so a railing there, one for the loo and one inside the shower cubicle. She really wanted a shower chair but the shower is very small. We have a stairlift too but we paid for that. The hospital were of the view they could discharge her to me and didn't care about stairs because we have a downstairs loo.

Just some things to be aware of anyway. Hope things go smoothly, big hugs if wanted.

How are you doing @speakout ?

Hi, so just an update.
My mother has recovered remarkably well, despite the fact she is 89. She is fully mobile and can climb a few stairs unaided.
She is still in hospital but the medical team are moving towards discharge soon, and yes she will be coming home to me.
I continue to communicate with the medical team, and I have a meeting this week to discuss my mothers needs and limitations, and she is being assessed as living alone which will mean a greater level of support.
She won't qualify for any type of residential care, so no funding is avalable. but can explore sheltered accommodation if that is the best way forward but waiting lifts are lengthy. If I don't want her back here then I will have to make her homeless, and of course the council have an obligation to home her- but I have no idea where she may end up living.
I am standing firm on the level of care that I am prepared to give and have had amazing support and advice from a local carer's support organisation. The hospital are suggesting 3 visits a day from a LA carer, and two days a week at an elderly day centre, which includes transport door to door, and has regular trips to theatre, local attractions, lunch at a hotel or afternoon tea at a restaurant.I am also tacking on another two days at a charity run day centre after her care package is decided. I have also been offered a volunteer to take my mother shopping once a week and she attends church once a week, a long service usually followed by bible study and lunch- the church isn't far, but members of the congrgation are organising transport for lifts. So potentially my mother will be out for long periods most days. She probably won't want such a high level of activity, because at 89 she tires easily and needs rest days.

Things I won't do include any type of personal care- we have a walk in shower and the council will provide a chair for safety. She doesn't need help- at the moment anyway- she is washing, changing. dressing without supervision in the hospital, and is doing regular circuits walking around the hospital, walking for up to two hours a day.
I won't cook or make meals for her unless I am cooking anyway, so I will get her signed up for Wiltshire Foods or similar and give her designated space in the freezer to store the meals.
I won't do night time support, we are swapping over her bedroom so she can access a toilet at night.
I won't be there for much socialising because I work.

I know many or you may think I have copped out, despite the many suggestions on this thread, but the situation has changed somewhat as her level of recovery has surprised me and the staff at the stroke unit,

I will protect my bounaries especially if her/my needs change.
Despite the fact she will be returning home this thread has been really useful, both in helping me be an advocate for my own needs, giving me information, which may be helpful both now and in the future.

Thankyou wise women.

Great news, she's done brilliantly.

I don't think you've copped out at all! Despite my earlier posts I really hope the setup works for you all 💐

Well done OP

You've definitely not copped out, I think it's great it's worked out for you and you've finally got the boundaries and support on place you need

PermanentTemporary SheilaFentiman Gcsunnyside23

Thankyou for your kind words.
This thread has been so helpful in recognising my own needs and prioritising my own well being. X

It's very ery good of you to update the thread🙏
I wish you all the best@speakout 🌬️🏖️

Glad to hear there is a plan that you feel can work for you.

Take care of yourself x

It sounds as though you found your voice and your needs have been listened to.

Thanks everyone.

I have had my carers assessement, and have a meeting at the hospital on Wednesday to talk about a care package on my mum's return home.
While I am not entirely clear of my Mums' needs, I want to be prepared and have some notes to take to the meeting.

I won't be doing any of Mum's personal care. While she is mobile, able to dress, shower and toilet alone, I think she stiill has supervision in hospital, a nurse behind an unlocked bathroom door, help to get tights on etc.
I won't do that.

Staff have mentioned some cognitive impairment, but my mum can hide that from a casual observer, she is chatty, sounds unimpaired, but perhaps needs prompting to do tasks.
I won't be available to support her with that.

I am also thinking about my nmother's social needs, day care provision, transport etc.

I won't be on hand to give her lifts because I work full time.

I am sure there may be more areas to consider that I haven't thought of.

Any points to consider, links or suggestions would be gratefully received.

My concern would be that they offer a care package with xyz but carers don't turn up or are late (due to lack of carers) so she doesn't get the help at appropriate times or isn't ready to go when being picked up.

Also how are they going to support her overnight?

I would put her on the waiting list for any suitable accommodation, then if/when a place becomes available it's an option to consider.

RandomMess thanks, that is helpful to consider.

My dh had a stroke. He is now physically impaired and brain damaged and is at home. The local authority give me no help whatsoever. Neither does any of my family. In two years I have never had more than an hour away from him, and that hour is very rare.

My dh is continent - just - but I have to get up 4 or 5 times a night to help him pee or he doesn't get to the loo in time. I hold a bottle for him. He has to have meals cut up; his understanding is hugely limited and conversation is at a very simple level. He is partially blind and partially deaf.

If you have your dm home, get a commode to go in her bedroom. Personally I don't think you should even try and cope. I am a 24/7 carer and you already have so much on your plate.

Don't be guilty, you will be visiting her, you love her and there are some things that we just can't do. This is one of them.

From what I know of the help available (with BIL) the maximum you can get is 4 visits a day because any more than that and it's cheaper to be in a group home. He lived alone though so they might not be prepared to offer you that many (I don't know). He couldn't go to the toilet without help but had no help overnight (too expensive I assume). I don't think it will be possible to say what times you would like the visits to be as it will depend when the carers get round to you in between whoever else they are caring for. I don't know that they will be doing anything for her social needs, BIL barely left his bedroom, they definitely never took him anywhere.

Just be prepared that the carers might turn up at random times, there won't be any help at night, they might do very little and rush off to their next place very quickly and might not really be very interested. On the other hand they might be lovely and helpful but still only have a very short window of time to do anything.

You have done so much OP, I'm sorry you're in this very difficult situation. Just don't have too high expectations with the carers.

Hi @speakout , can I ask about a few things you have said, because I’m not sure how they will work in practice.

You say you won’t help your mother dress, although the nurses help her put on her tights. So if you stick to that and your mother can’t get her tights on in the morning , what will happen when the driver comes to pick her up for the day centre / church etc? If your mother is not dressed she will probably refuse to go. Once she has done this a few times they will stop coming for her. They will give the place and the transport to someone who does want it.

So you will end up having to do it, otherwise she will be at home all day alone while you are at work. And no doubt your partner, sister and mother will all complain to you about it.

I know this is only a small detail, but it’s supposedly small things like this that make care plans fall apart . Lots of elderly people say they “ don’t want to go out “. When in fact they mean they are scared of falling / embarrassed because they can’t hear the conversation / are worried about stress incontinence / don’t want to go out without their hair or make up done the way they like it / are scared to eat or drink in public as their dentures don’t fit well / are worried they will have a dizzy turn etc

But often they don’t tell anyone because they are embarrassed . And then it become a vicious circle because they don’t go out, they lose physical strength, social skills, confidence , mental agility etc . They become more dependent , carers need to provide more care and both parties resent it .

I understand that you are resolved that you won’t do / can’t do certain things. But what happens when your mother needs these things done - if you refuse will someone else in your family step up to do it? It’s not much help having the carers who come it at lunchtime help her dress if her transport to the day centre comes at 9am . It’s not as of the local authority will send the carers at a different time than agreed.

Im not trying to be difficult BTW or pick holes in your plan, I’m trying to be helpful.

FlipFlops4Me I am sorry to hear life is so hard. X

I don't know the full extent of my mother's care needs. I know she can use the toilet unaided, can manage some stairs, and has been working with OT at the hospital making tea and toast, a sandwich etc.
She does not meet the criteria for residential care, because her needs are not great enough.
She can apply for sheltered housing, but waiting lists are very long, I will still make sure she is on the list.
I could make her homeless, but she wouldn't have any greater need then for residential care, she may move up the list for sheltered housing, but won't magic a place for her, she may end up elsewhere.
I can appreciate that carer's visits may be sporadic, but my choices are limited.
I will speak to my carer's support worker and ask whether my mother may qualify for a faster way to sheltered housing if I make her homeless.

OP

They will promise you the sun moon and the stars, just to get her back in with you.
Then any deficiency gap etc etc (see above) will fall on you. You will be the default carer.
I doubt that you're unfamiliar with the phenomenon re small children - where the mother is the "default parent" and the father does whatever he likes. There's plenty of threads on MN from women broken by it.
The only way to avoid it is to make her homeless. Otherwise it will fall on you till you're really broken and then what. What will you have gained. There will still be family strife towards you when you finally break and ask to put her in a nursing home.
Please think about this lucidly OP.
You are a person too.