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.

FloozingThePlot thank you, and yes we have a really good local carer's support organisation, with lots of expertise in different areas. I have been assigned a case worker,-she also works with hospital discharge cases and social work dept. I am waiting for her to call. Her colleague was knowlegeable and when I told her my situation told me to insist on an assessement before my mother leaves hospital, because if I take my mother back home first everything will move at a snails pace. But they will help me through the process- they understand the process, agencies best approachess etc.
I have spoken to the hospital OT, again explained and she said that my mother would be "assessed as if living alone at home", because the situation is complex.
Yes I am a people pleaser- many of us are, in my case complicated by early parentification and childhood trauma, which has left me feeling responsible for everything and everyone.
But I don't think stepping back is the best way to deal with this. The OT has given me her direct number to talk further as treatment and my mother progresses.

Thanks, all these tips are so helpful.

Quote: "I have spoken to the hospital OT, again explained and she said that my mother would be "assessed as if living alone at home", because the situation is complex."

You are going to have to put your foot down. Tell them she should be assessed as living alone as she will be living alone. I think the idea of an advocate for you as suggested by a previous poster is excellent.

Tell them that your mother cannot return to your house. If their assessment finds that she can live alone (with 4 care visits etc) then they should find sheltered accommodation that can accommodate that.

You have been waking up crying and wanting to run away from your life. It will be you who will be suicidal if more is piled onto you.

What you are supporting your son through is a lot for both of you to bear. You have no more to give. There are others such as sheltered accommodation, care teams and residential homes very well placed to meet your mum's needs.

I'm cross that your husband isn't fighting for you tooth and nail. Can you show him this thread?

Winter2020 I am leaving OH out of it at the moment.

This thread has been amazing. Thank you. My tears have stopped and I am having a peppermint tea then an early night
Interestingly it has been my son who has been most concerned about me, he seems to have a clarity about the situation- offered to speak to social services or hospital teams to help support me.

I’m glad you feel a bit better and that your son is in your corner

that doesn't surprise me

apologies if you hadn't thought of it this way - but he's going to lose your time and attention so is likely to be pissed off about it.

I would certainly use that support, but just be aware he's got his reasons for wanting to help.

Bless your son for thinking of you.

OP, I am sorry you are in this situation. A great number of posters have written brilliant advice and hopefully given you ideas about how to ensure that your mother receives great care in a Home.

But the most powerful words on this thread are yours. You are here because you know that you are being manipulated and pressured by family members and your own OH. I find that shocking.

Best of luck, OP. I’m pretty sure that you are going to do what’s best for you and your mum: full time care outside your home. We are cheering you on.

@speakout I was in a similar situation with three totally hands off siblings who had very robust opinions about how I could facilitate my DMs palliative care and my demented DFs return home after DM died. I told them, very firmly, that if they weren't offering their own time and effort, they weren't to volunteer mine. Amazing how quickly being expected to step up shut them up... Best of luck 🤞

Are you kids - in particular your high needs DS your OHs kids...

yes, both children have the same parents- me & OH.

Your home doesn't sound suitable for her

Speak to the social worker at the hospital

Explain the situation

Mum can go to a 'cottage hospital ' (rehab) when she leaves the acute ward and then further rehab/respite at a nursing home

After that, the natural progression will be for her to stay at the nursing home because she will be happy there, with her new friends

This will be very difficult
If your son and your mum both need your attention at the same time, how would you manage.
I totally understand how you feel.
When my mum needed care there was 3 daughters to share and my dad but it was still tiring on everyone. She absolutely hated having to be looked after she used to say she was a burden on us all.
Your oh and your dd need to be more supportive and if they want her home so badly leave them to look after both your son and mum to see how they manage.

She appears to be in a stroke unit. Therefore there should be no need for 'cottage hospitals' etc. The stroke rehab pathway is very different. There is a criteria for nursing homes which as the lady in question is already mobile with a frame it doesn't sound like she will be suitable for nursing home care, residential maybe.

It's unclear OP if she has any investment in your / her home, or what her capacity is. But like I say 3 weeks post stroke is early days. Don't get me wrong, I don't judge you at all for not wishing to be her carer, and perhaps the home environment isn't suitable. But let the OT and social worker deal with it once she has completed her rehabilitation. I would certainly be very honest about what you are / aren't willing to do. It sounds like you have a lot on even without bringing your mum into the equation.

My dear OP, I’m glad to hear you are sounding a little more resolved.

I wanted to comment on these words from your very first post -

It all feels so hard, I feel very alone, and guilty for just not wanting to suck it up

I need to warn you that whatever you decide , you will feel alone and guilty. Even if your mother is found a residential placement in which she is very happy and is well looked after, you will feel guilty because she is “ not at home “.

I’d love to think that your daughter and husband will change their work patterns to visits your mother most days - but I doubt it. I suspect you will have to deal with most of this alone too while your husband and daughter try to control you.

But your mother will be happy and well cared for and your own physical and mental health will be safeguarded.

If you have your mother home and are unable to care properly for her, you will be a lot more alone and guilty. You are at great risk of a mental and emotional breakdown as well as a back injury from trying to lift her.

I’m afraid there’s no guilt free option for us as women / mothers / daughters /carers 😥. So you might as well make the choice that’s best for you.

Tucking "I’m afraid there’s no guilt free option for us as women / mothers / daughters /carers "

Everyone's experience is different. I was looking at putting dad in a care home before he died and I didn't feel guilty at all. He would have been much better in a place equipped to care for him. Also, he was already very ill and unhappy. Me being more unhappy wasn't going to help anyone. I see now I was very lucky that he was determined not to be a burden. I will always be grateful to him for that - for realising, for saying it, for apologising nearly every day in the last three weeks before he couldn't speak.

I think it's important to avoid a narrative where all outcomes are misery. That situation does happen of course, but I don't think it has to be the case here. I hope speakout that you don't wind up thinking "it's all miserable so I'll do what people are asking". It doesn't have to be like that.

Totally agree with @EmmaEmerald . Not many of us are lucky enough to have parents as thoughtful as hers.
But OP, your mum is 89 and has had a good long life. If you now don't want to, or don't feel able to have her living with you, then that is absolutely OK but you need to tell your family that and don't let them guilt trip you . Good luck

Some excellent advice here - I would also add, from bitter experience, the willing horse always gets flogged hardest! If you agree to anything, there is a collective sigh of relief from everyone else - hospital, family, authorities, whoever - because you’ve taken the burden of responsibility off them and they can stand on the sidelines offering advice whilst you crumple under the strain. All sorts of promises will be made about support etc, but once you’ve assumed the role, the pressure is off others to deal with the day to day issues. I think we feel guilt because years ago elderly people were looked after within the family group, but dynamics have changed, we live in smaller groups and there is no longer a collective responsibility to share the caring.

For your own mental and physical health, and that of your son’s, a decent care home is definitely the best option with appropriate facilities and staff trained to deal with your mother’s day to day needs. Don’t forget, care home staff work in shifts - you’ll be on duty 24/7!

PS Forgot to add, as we know, being the child of a Narc parent even more predisposes us to guilt and people pleasing. I understand completely the mental dilemma and turmoil you are in, but stand strong! We’re all here giving you a hand hold.xx

I think we feel guilt because years ago elderly people were looked after within the family group, but dynamics have changed, we live in smaller groups and there is no longer a collective responsibility to share the caring
So many other things have changed which make it impossible for elderly people to be properly cared for, eg....
-women have children later in life so they are still bringing up children at the time when their parents become unable to care for themselves
-instead of dying in the mid 70s after a short illness many more people live into their 80s and 90s, spending years unable to care for themselves
-instead of just a few elderly people reaching a great age with lots of younger people available to help them we have large numbers of elderly people and far fewer young people available to help them.

In addition, women over 60 would be retired and have some free time to help. With the pension age of 66 (67 soon) many are still working while having very elderly parents.
I know people over 70 looking after very elderly parents. I don't think anyone should really expect people becoming elderly themselves to be carers to the very elderly.

Yesterday was very busy, so just getting round to an update.
DD and I visited my mother yesterday, took her out in a wheelchair around hospital grounds, and a couple of shops. My mother's impairments were a bit more obvious yesterday, cognitive and functional- she became confused in the shops etc, needed a lot of help to choose and make purchases.
A couple of other patients in the ward are being moved to rehabilitation facilities, and one going into sheltered accommodation.
I chatted about how there are specialist centres for physio and recovery, time and support to continue her healing for another set while.
My DD asked " will gran be going there" and I truthfully answered that I didn't know yet, and no decisions have been made by medical staff.
I spoke to the OT assigned to my mother's case and a note has been added to her file to say if coming home is an option then she will be assessed as living alone.
I have an Adult Carer's Assessement next week - my local carer's support agency is doing that assessement. I didn't know there was such a thing, but I can insist it is considered during my mother's discharge plans. I need to phone hopital OT again to let them know, and they have to wait until that comes too before any decisions are made.
My assessement looks at my situation and what care I am willing and able to give.
So the fact I work full time, have issues with my own MH at times, I am in my 60s, already care for another adult who lives with me, how much time I spend at home, my needs for socialising and activities, my sleep needs.
Apparently a carer at home should not be expected to have 3 or more night time wakenings while caring for someone in their home, and most nights I have one or two times awake with my DS already if he is distressed, or needs something. LA is usually unable to provide much if any visiting carers to a home overnight, so that apparently is a weighted factor in deciding whether residential care is more appropriate.
But we will discuss that at my meeting next week- once I have phoned the OT today my care worker has suggested I take a week off from worrying, that we will take one step at a time after that.

This thread has been unimaginably helpful to me, the support, practical and emotional is incredible.
Thank you- you are such an amazing bunch of strong wise women.

great update op, you sound strong and focussed. KOKO

I'm pleased to hear that things seem to be improving for you. Stick to your guns!

I know of someone 'J' now early 60s losing mobility and developing some cognitive issues because of lifelong alcoholism, moved in with parents 15yr ago after relationship breakdown because of alcoholism. Both parents now have dementia with mobility issues, J is their carer.
Talk about the blind leading the blind 😟