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.

Excellent news @speakout!

It sounds as though a live in carer would possibly be inappropriate for your mother’s needs as they sound a bit more complex - so even more reason for you not to take it on either as you’re already supporting your son. I’m sure no employed live in carer would be expected, or even allowed, to look after two vulnerable people - so nor should you!

Keep us posted and updated as we’re all on your side. Xx

Thanks everyone.
Although the situation is not settled yet my mind feels a lot clearer.
I feel more able to explore my limits, and that setting those limits is not being unkind.

Great news @speakout !

Nope nope nope nope!!
(Saying this as a RN!)
What she needs is a step down bed or a rehab bed to get her back to as near baseline as possible, sometimes these are in nursing homes or other specialist units. They will keep an intervention chart to see what nursing/care needs she has over a 24hr basis. You also will need and should have access to a social worker to help organise a care package, a occupational therapist assessment to see what equipment/adaptations she needs at home. Do not take too much on OP, or you will burn out.

There is one thing you need to do OP - actually one thing you have to do. Say no. Point blank NO, she absolutely cannot come and live with you. Tell them you cannot and will not look after her under any circumstances.

I agree you need to say to her living with you, and no to doing any caring at all.

Obviously you will visit her and will support and help but do not tell them this is the case.

I think you need to spell this out to your daughter and husband too. Just tell them so they know. Don’t beat about the bush.

Good news speakout
I'm really pleased to hear of these developments.

Read this whole thread just now! I'm really glad that you are getting assessed next week. Please please stand your ground and don't be afraid to speak up with what you can and cannot do. I'm an RN on an acute ward (not in stroke/neuro though). I see this sort of thing happen loads, and I always tell family to make sure that they're very clear on what they can/can't do (and to not let anyone guilt trip them).

You need to put the oxygen mask on yourself first, otherwise you'll end up running yourself into the ground. There's absolutely no shame in doing that.

"special chairs" indeed! I'm shocked at your OH. "Just needing a little help up and down the stairs". Don't do ANYTHING that will risk your own health. It's easy in a hospital/rehab facility/care home setting - there are trained staff, with the correct equipment, and the set up is easier to work within. Please look after yourself. You already do enough!!

TicTac80 Thanks. I am feeling much stronger now, and this thread has helped a lot. My mother is improving a lot, can walk unaided although she still needs some to walk alongside her. She has started on a few stairs too, she is expecting a full recovery and coming home.
It seems cruel to rob her of such a motvation, but it remains to be seen what level of recovery she will eventually achieve.
If she makes 100% recovery she is welcome back home, but I don't want to suggest or offer any additional support that I can give.

I have been thinking a lot about my own boundaries and where I draw my lines.
I won't do any personal care, and I can't aid my mother's mobility. Stairs in our house are trecherous, I have no training in manual handling others, I am in my 60s supporting another adult physically is dangerous for us both.
I can't give any night time support. I already have my DS who often wakes me at night when he becomes overwhelmed. I work full time and currently having treatment for my own MH issues- I need good sleep to maintain my own health.
I am sure there are lots of other areas too- hopefully these will be explored during my own assessement

Well done, Speakout. This is difficult stuff to navigate and I am really happy the thread is helpful to you. I am glad to hear you have a carer's assessment in the pipeline - you have a legal right to this as a carer. I am sure your local carer's organisation has given you some information in advance of this, but there is useful information on this page as well.

Thanks FloozingThePlot that link is very useful.
I am mentally making a list, thinking about my situation and my needs.

I will probably write some notes to take into the assessement in case I forget anything.
I have had a long chat with my case worker by phone, and she sounds very supportive of me, and totally understands my situation.

And yes the support on this thread has been humbling, but also a game changer.
Seven days ago I thought I was in a desperate situation, terrified about the future, feeling I was about to have my life sacrificed.

But now I feel Ok for having my own boudaries, it isn't cruel or unkind to want more from my life rather than simply looking after other people.
Practically nothing has changed from last week, but this thread has shown me I do have choices, my life is important. Reframing my situation shows me I do have choices, and no one can force me to do anything.
No- one has a say in how I live my life- that is my right alone.
This thread has restored my faith in others- so many of you with profound wisdom and empathy- many of you speaking from lived experience or in an area that gives you a great understanding. and insight.
When I look at the road ahead it is no longer a tangled mess of thorny branches and bleakness,
I know there will be challenges yet to come, but the road ahead is clearer, I see blue sky and sunlight peeping through the branches.
And I have options, the road ahead is for me to decide, it is my road, not anyone else's.

If my daughter were in my situation I would be advising her not to be my carer.
In fact I have discussed this with both my children- I would not want my kids to put their own life, their own needs in a secondary position.

I would want to go into a residential facility if needed-but I have made sure they will smuggle me in plenty gin.

That’s a great update @speakout , I’m glad the thread has helped you. You had all that strength and courage within yourself already , you were just so used to putting others first all the time, it was hard to even start thinking of yourself.

can I make a practical suggestion about the assessment ? I had to do something similar and I made a rough guess about how much time I spent each week caring for someone . I them went back and checked my (appointment) diaries and I was shocked to see how wrong my estimate was.

I had forgotten to account for the time we spent going to medical and heath care appointments and all the routine activities that we did outside the house.

These were so much part of our lives for years, they had just become normal to me.

Also if I Managed to get sone time for myself out of it, somehow it didn’t count in my head. So if I spent an hour getting them ready and out to their club, then sat for an hour reading a book waiting for them in the car / reception area / centre cafe , then spent another hour getting getting home and then settled again , that should have been three hours caring . But because I got a break for an hour, it didn’t feel like it.

Id not allowed anything ( time or money ) for shopping for special foods and cooking meals for them. In my head I suppose I was thinking “ Oh I’d cook a meal for myself anyway “ but in fact I’d probably not do that all the time. If it was just me I’d probably have eg a sandwich or some soup a lot of the time and watch a TV programme . Not make the very limited types of meals that the person I was caring for would eat, then sit at the table and persuade them to eat etc.

I also starting keeping a note of what I did each day going forward, and again I had massively underestimated all the small things I do several times an hour.

Of course it feels bad writing it all down because we do it for love and when it’s our own child we always hope that they are getting better / coping better / learning new skills. But for assessments like this you REALLY need to write it down to get an accurate picture.

Just my experience .

When you have sorted the situation with your mother

it might be an idea to start thinking seriously about your marriage. You don’t seem to like your husband let alone love him. It seeps through this post.

Good grief OP. I was in the quotes from narcissistic mother - and your other sounds nothing short of vile. The way she has treated you all your life is venomous.

Bamboozleme - you are perceptive, although my previous rant isn't entirely a complete snapshot of our relationship. Many parts are supportive and functional, but yes life is taking us in different directions.

You are downplaying it. Your disdain for your husband is very evident and for years

and as for your mother…. Given her abuse of you over the years, it is unfathomable that your oh and dd want you to live with her a moment longer

TUCKINGFYP0 that's a good point- thankyou.
I am thinking about last week- my DS is being financially abused, and I have been trying to prevent too many losses and work things out with the bank.
The bank has been helpful, but last week it took several phone calls and three physical meetings with the bank. So in all, including phone time in a queue, driving to town, parking, meetings, took 9-10 hours. I have to deal with his benefit agencies, GP, MH team, crisis team etc on a regular basis.

And yes shopping and cooking food too takes time.
My mother has an "old fashioned" taste in food, likes roasts, meat and two veg, mash- food she has eaten all her life. If I cater for myself it is always something fast, I eat a lot of salad, roast veg thrown in the air fryer, nuts, tofu, fruit, noodles, fish and seafood, all cooked with lots of chilli, garlic, spices, ginger.

Not stuff my mother enjoys- so I generally cook her something different. That all takes time too.

Yes that's true, but she is a vulnerable frightened old woman, with no one else to fight her corner.
I don't dismiss the way she has parented me, but I still feel compassion.

That’s great

but doesn’t explain your daughter and husband’s stance. What they must have witnessed over the years op

I think it is time for me to step away from this thread for a few days.

The support has been amazing, but I have enough on my plate at the moment without a critique of my life choices.

I am in tears again, but I will give myself a moment or two and roll out my yoga mat- a very safe place for me.

You know it sounds like you don't believe you deserve to be treated better by your DH and DC. You think your needs and wants should come last. Your mother trained you well!

Please find a good therapist to help you in the midst of everyone putting demands on you. Find your inner voice and then make it a boundary.

You can have compassion for your Mum and advocate to have the care and treatment she needs without that being you providing it at home.

I hope things for DS are resolved, caring for him is a priority over your Mum.

I had a stroke and the care that all the elderly patients on my ward needed was very high indeed. She will have been at her best when you visited and took her out but the exhaustion that comes with recovery will have wiped her out afterwards.

Please find a good therapist to help you in the midst of everyone putting demands on you. Find your inner voice and then make it a boundary.

this

and then… a solicitor

Please don’t take it as criticism, it comes from a place of concern

We’re only just learning what a husband should be, as opposed to the shite that’s peddled in magazines and romantic films and novels

Your OH is being ridiculous. Ask him how he fancies taking over her care if you became ill.

You need to make it clear to the hospital and social services that you simply cannot be your mother's carer and she is not coming back to your house - because they will put a lot of pressure on you. You are entitled to make it clear that you have more than enough on your plate already and you cannot do this safely for you, your mother or your son. They will have to look into a care home.

While you're at it, ask for a formal care assessment for your son under the Care Act 2014, and push for respite care for him.