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.

We had MIL stay with us and she became immobile and it nearly broke both of us. I watched my wife go from daughter to carer to a shell of herself. In the end she had to go into a home and the guilt was bad but we couldn’t continue. Think long and hard before you do this.

I really feel for you. The hospital are doing the right things with the rehab and you should talk to them about next steps. It's not all or nothing - discharge with a care package would be one possibility.

OP, honestly, this is a horrible situation for you but do not be pressured into having your mum home if you are having doubts. It sounds as though you have enough on your plate already and your home would need adaptations.
If your mum goes into residential care you will be able to visit regularly and maintain your mother daughter relationship. Maybe a period of residential rehab might give you time and space to assess the options?
Sending hugs

@Smileyoriley has a good suggestion about the residential care to assess impact.

It sounds like you have a lot on your plate even without this, and you've been an angel to have her with you for six years already. You are a person too - don't be frightened to tell your family this. It's not being selfish, it's no good to your DM if you bring her back and are unable to deliver the significant level of care she needs.

I think your family are very very selfish to put pressure on you when you dedicated 6 years to her in your own home & you have a son who is very unwell and a dh who suits himself

put your foot down ! You can be really nice about it but I would actually block their texts and calls if you need to until they get the hint. Only unblock for an hour a day to keep them updated. A nice care home would be the ideal option even though you might feel guilty I wouldn’t - she would get the right care and support and professional attention

you sound like a lovely lady but sometimes enough is enough

Absolutely do both and her home. It will break you. Stand firm and be insistent that she be offered residential care . Even a care package would mean most of the work would fall on you.
I am in a similar situation though not as bad. My 86 year old mother has fallen and broken her arm. My sister is at the other end of the country and has work and children to look after. My brother is selfish and would possibly be there the odd weekend, that’s all. I am expected to pick up all the care . The waiting list for carers is months long so no care package for her. Private caring organisations also have long waiting lists and are eye wateringly expensive.
My children urging me or have her stay with me but our house is not really practical and we are due to be away for three weeks in May. I would have gladly done it but we have a very difficult relationship and I find her very challenging.
OP you have done enough. You already have enough on your plate. Stand firm.

I think it's all very well your family saying she would do better at home but they are not the ones the work will fall on are they. Also I can't imagine she would get daily physio at home either. Try and talk to social worker at the hospital about the next steps. In my area a residential rehab place for a few week would be an option

Do not have her home I meant to say.

You should not be taking this on, she has deteriorated. For her sake she needs care in a place that is set up for her needs.
‘Just say no.

Interesting to note that those family members urging me to have her home are not the ones offering care.

Indeed. It would be very convenient to everyone if you somehow managed to absorb the level of care she needs alongside all your other considerable responsibilities but it is way too much. You have done a lot for your mum bringing her to live with you but if nearly full time care is what she will need now it’s not something you can provide.

OP it would be irresponsible to bring your mum home when you simply don't have the resources - emotional and practical - to look after her. You are in a demanding situation doing the best you can. Don't be pressurised into putting yourself into something you can't manage. It will be worse for everyone, your mum included. Credit to you for looking after her and the rest of the family as you do.

No to this. Someone's needs at the end of their long life don't trump everyone else's in the prime of theirs. Especially when there is an alternative.
Surely your DM won't allow you to make all these sacrifices anyway. Would she?!

What is your financial situation and that of your mothers? Can you afford more help?

I think this for me depends on the situation.
How did she end up living with you? Did she sell her own house and does she still have that money?
The bottom line for me would be night needs. That is not reasonable for a carer unless it is very short-term. But could she be padded or fitted with an external catheter that drains into a night bag so she can stay in bed.
I think you need to decide what you're limits are.
She may need carers 3 to 4 x daily to manage her washing and dressing and toileting or pad change. She could have a hot meal delivered or even regularly attend a local day centre of you needed a break during the day. She could have regular respite status in a local care home to allow you to get away or just have a break.
My advice is to be very honest with the Occupational Therapist on the rehab ward about what you feel able to do.
If you own the home, you can say you are not prepared to have mum home again but they will want to know if she owned a house and what happened to that money when they consider care needs.
Good luck.

If you feel this is a line for you, assistance with personal care and everyday mobility, then you need to make that clear. Perhaps she could go into temporary care for a rehabilitation period for now?

Hi speakout
You really can't have her at home. Forgive me, but you sound a bit like me - you wonder why others seem to cope?

I think we have to separate ourselves and realise we are not those people.

My mum had a small stroke in November and had to go into respite care because I would not be able to cope. How would I have lifted her etc. the care home was excellent and there's a team of people for back up.

If you are feeling guilty - I know, sort of. I had someone ask me, in horror, "your mum isn't living alone, is she?"

Actually, mum was out having lunch with her mates at the moment I was asked! But I lied and said a family member is always there. I don't like people to know mum lives alone - it was a local contact, I like them to think mum someone living there.

So, is this about what others think as well as your mum? I'm not impressed with your OH. Looking after someone like this is exhausting for a couple of hours!

You must hold firm. They tried to discharge mum before the respite care was sorted, I told them - through tears - they'd have me occupying the hospital bed if they tried to discharge her to me.

I'm really sorry you are going through this. But it's absolutely no.

Oh, and if your OH, his sister and his daughter, feel your mum would recover better at home, she can go to one of their homes. I'm sorry you have to battle your own family, but battle you do.

I am so sorry that you have been put in this position OP, and sorry for your mum too.

Both my parents had strokes sadly. I will be BRUTALLY honest here so feel free not to read on!

Your mother absolutely will NOT do better in your home.

At 89 years of age (89!! That’s nearly 90!!) and post-stroke, realistically she probably does not have a lot of her life left (sorry).

Post-stroke she will be much more vulnerable physically, and at higher risk from colds, flu etc. Plus she will be at high risk of further strokes. As a minimum she is going to need someone available 24/7 either just to check on her (best case scenario) or to care for her fully (worst case scenario).

She may have continence issues. She will have mobility and cognitive issues even if the extent of these is not fully apparent yet. Her memory and speech will probably be affected in some way even if not apparent yet. She will be DIFFERENT in many ways and these will become apparent over time. The impacts of a stroke are felt over a lifetime. Your mum may be shorter-tempered, confused, scared, even violent at times.

She needs to live in a dedicated care facility where she will receive care from trained, qualified personnel with access to equipment (hoists, wheelchairs, physio equipment etc) and with adequate space, grab handles, alarm pulls, night time staff and all the other essential stuff and staff to help keep her comfortable and safe.

This is not a job for one woman.

How would you lift her if she fell? How are you going to function on little sleep? How are you going to retain your mother-daughter relationship with her if you are caring for her intimate needs 24/7? She could stumble or fall while you are physically supporting her and take you down with her, injuring both of you, and then where would you be?

Your mum needs to be in a care home / nursing home where you can visit her regularly, enjoy being mother and daughter, and cherish the remaining time you have together.

I wish you and your mum all the best; it is a horrible position to be in, but your family are being selfish and unsupportive in putting this all on you. Put your own oxygen mask on first!

Your sister hasn’t seen your mum for 8 years, her opinion is based on out of date facts.

You cannot do this, you will break and then everyone will be worse off

Since you are the one who would need to do the care, it is your decision to make, not your relatives'.

It sounds like this is not something you want to do so you need to be firm and say that this is not a possibility and communicate this to the healthcare professionals who are looking after your mum so that an alternate solution can be found.

It is very easy for your relatives to pressure you when they have no intention of offering care themselves...

What does your mum think? Has the hospital/team discussed discharge yet?

Your mum may actually be miserable coming back to your home. She will be stuck upstairs, isolated apart from your quick check ins, worried about getting to the loo when she needs to, worried about falling all the time, worried about burdening you, worried about getting drinks and food when she is thirsty/hungry outside of meal times, worried about showering and falling etc etc

Sometimes a residential community is better - more social interaction, safer facilities for daily living so the residents can do more themselves and a building they can move around and get outside when they want.

It is easier to get her into a home from a hospital than it is to take her home and then try and get her in a home. You've done your best so far - I don't think too many people without the extra stress you have could cope in this situation so anyone in your family trying to tell you to suck it up needs to have their head wobbled.

Hi. Sorry to hear about your Mum's stroke. I think it is probably too early yet to know how much your Mum will recover. My Mum is currently in a stroke unit and people who are making progress have been here for several months while OT and PT help them to regain their independence whatever age they are. I was watching a lady in her 80s tackling stairs with her PTs the other day. So I think you need to speak to the therapists on the ward. They will ( if it is like where Mum is) be very reluctant to discharge anyone who they still feel can make progress with them So you may yet find that given time things are not as bad as you fear. There will also be advice and probably some funding for adaptations to your home and necessary care packages offered. Having said all that please don't let anyone guilt you into taking on a caring role you don't feel is right for you or your Mum. I wish you well as you navigate all of this.

The hospital will discuss her discharge with you. At this point you say she can no longer live with you as you are unable to provide the 24/7 care that she will need. This would be an unsafe discharge.
As PP has said it will be easier to get her a nursing home place direct from the hospital... if she comes to you it WILL be months before she gets to the top of the waiting list...and you will be on your knees.
Since she has lived with you so long I assume you have had a good relationship so far. Your Mum would not want you to be broken looking after her.. because once you start giving personal care to someone your relationship changes forever. Physically and mentally.
The family members saying that you can do this... you will be fine... know nothing.
They are twats.
Stay firm on this. It will be best for Mum and yourself.
Take care of you.