Thoughts on Moving In, or not, with Mother

[MsJinks]

Hi - I’ve posted a couple of times re caring for my parents. Unfortunately, they both ended up in hospital and then were intended to go to rehab together for assessment. Sadly my Dad passed away, but my Mum is now being discharged from her rehab. I have dealt with the funeral, am sorting the house and my Dad’s estate, as best I can - my Mum just said for me to see to it all. That’s fine, however I have just found she thinks I will be living with her, and when I have to work my kids will be with her, alternatively she told her friend I’m retiring soon - I’m not! The care home knows I can’t provide her care and are putting a package in place around that - but this is just 4 calls a day, and possibly a night one. Unfortunately my mum is not independently mobile - despite telling therapists she was walking around she had been in bed for months - so she will be moved from bed to chair on the re-turn as part of the care but effectively stuck wherever left. She also has never been on her own and was very well looked after - everything she wanted - provided by my dad.
She was told re the package yesterday and needs me to call her - tried and phone off so far - I expect this is the conversation re me being there for her. I had planned to visit every other day and obviously have to run the home etc but now wondering if that’s just not enough and unfair. I could stay with her - I’m single and my youngest adult daughter lives with me and my fat cat. I work and need to continue working but don’t do anything amazing outside work that is more important than helping others. On the other hand we don’t have the best relationship- I just watch what she wants and agree with her etc - she’s old and I’m not resolving early differences now. she tends to need more when I’m there, so I was getting up 5-6 times a night to do her toilet which I literally can’t do and would fit my evening and weekend around her needs. If it were short term then obviously no question but it could be years which sounds awful of me but wondering how long I can do it without resentment. If I refuse it will really really upset her and she may well just refuse to see me/take any help - and why would I leave someone in a pickle really? Anyway this is a big decision that either way I might regret and more importantly either way will impact on someone else’s life - an elderly vulnerable person’s.
Just wondered if anyone had done this? Been in this situation? I’m 55 by the way and won’t be retiring yet - neither can kids help as they have jobs/kids/live at a distance - they will visit but can’t care.

I sympathise. I'd say get the care package in place and see how it goes. There will be tears and recriminations, you will feel like the worse person in the world so be prepared, it's hard.

Don't do it. You need to protect yourself. It's great to support, but on no account move in with your mum or stay overnight even for one night. This is the time to put in boundaries, before she's discharged.

It sounds like she needs to be in a residential home for full time care rather than a few visits a day.

Is there any option to sell her home and purchase a retirement home or fund a residential home or downsize and purchase a greater level of hike care privately.

In your shoes I would not agree to any period living with her and would make that clear to her, social care and the hospital. They need to know what support is properly available ongoing to plan appropriately and it doesn’t sound like you are able or wanting to be living there doing daily care.

Sorry for your loss.
Please be really careful about what you commit to,and for how long.
Is live in care an option?
This could be a v long time.

I would just stick to the I'm working and I can't stay overnight or help much because of that. I need to work and don't deviate from that. Do what you can to organise help for her but dont be the only help. No one will help you once you are in there doing it all and you are entitled to a life yourself never forget that. You are working, that's the reality

Sadly it sounds like she needs the best care home you can find for her. She will get worse not better.

What age is your mum?

I think sadly it has to be tried and fail before some people will accept the reality of a situation. I knew my Mum wouldn’t cope with the live in carers my Brother organised and a huge argument ensued with social services threading to take him to the court of protection.

Once it had been tried and failed it was much easier for everyone to move forward. Stick to your limits, however hard it is, if both any chance it works then great. If not sadly she will need to go into a home. So sorry for your loss and the difficult situation you are in 💐

@AIMD

It sounds like she needs to be in a residential home for full time care rather than a few visits a day.

Is there any option to sell her home and purchase a retirement home or fund a residential home or downsize and purchase a greater level of hike care privately.

In your shoes I would not agree to any period living with her and would make that clear to her, social care and the hospital. They need to know what support is properly available ongoing to plan appropriately and it doesn’t sound like you are able or wanting to be living there doing daily care.

Every word of this.

My mum is 87, they were struggling as a couple but refused most help despite trying to get them to accept care that was a final resort to ensure my mum could be dressed/undressed in bed and even then they cut the 4x to 2x as a couple. They’ve been advised for years by a friend apparently to downsize - not happening they, and now she, love the house and stuff in it - sadly as they can’t even see let alone use most of it. I suggested changes to front and some moving of stuff in but it’s a no, no, no.
My mum is keen to be home with her things and however that can happen is what must happen in her view. She says my dad was wonderful but he’s gone so now to get home and get on. She is unrealistic about capabilities and costs - guess she assumed when I said not to worry I meant I’d move in and do all my dad previously did so it’s hard to break that illusion. I think she needs to see and be in her home to an extent as she lost my dad whilst in the home, so a big thing not to be able to see her home where she last saw him - I’d have taken her to visit if it weren’t for covid - and the mobility issue may have hampered it but I’d have tried. However I see how much healthier she looks in the care home and believes for a long time they, and definitely now she, (though my dad could have managed solo) could only be properly cared for in residential - just showers even help. But she hates it there - she says half her life has gone so she needs the other half. It seems so harsh to deny her that and leave her in a totally different life in every way to what she had including natural fear of being vulnerable without mobility but realistically I can’t do it.
Everyone is aware I’m not caring -as whatever my decision I needed the fullest care available and ready and I know if you offer one meal that easily turns into 21! I say everyone - not my mum apparently - though my care would be good, changing tv and toilet outside calls rather than washing etc - toilet being a she wee not commode as she needs 2 to move her.
The Max care is 4x calls a day and I’m not comfortable that she’s left in between and overnight- smacks of leaving a toddler to me with her limited capability- but I know that’s what is done
Thank you for all your replies - they’re really helpful and I feel more confident in my approach to try and say I’m working but will visit every other day - well before I have that conversation at least!

Not ‘good’ - food 🤦🏻‍♀️
I should add they say she could only be in residential self funding - which she could but equally won’t and also indicates she is not considered to need it.
She has finances but they could go very quickly on care costs so if I get extra I have to be sure that’s financially sustainable

I think it's the broken record approach, you are working, you will help her to get help in but you can't do it as you are working. It's far too easy to agree to things and then in the full light of day you regret it.

She sounds as if she has capacity to make her own decisions, so if she wishes to go home she should. With capacity comes the responsibility for the results of those decisions. She won't be happy to go to a care home until she has established for herself that the alternative is untenable, so she probably does need "to get in a pickle".

If she has carers in 4 times a day, her story about how mobile she is will be blown. Carers have to write down a summary of what care they have given on each visit.

Don't get sucked into more than you are happy to provide.Remember what you commit to will be every week - you won't be able to go on holiday you won't be able to have a week off because you have flu.

Has she tried getting attendance allowance? It's not means tested. Do get advice on filling in the forms it helps if they use the correct phrasing. I think it's about £55 at the low rate.

Funding - if she goes into a care home, her ownership of the house (which could be sold) will mean she has more than £23000 in savings and will have to fund herself until such time as her savings run down to £23000. While she is at home, the house is taken out of the equation so she may not have to pay all care costs herself.

It may seem harsh to "deny her the other of her life", but for her to live as she wishes would deny you a large chunk of your life.

I did it - I moved in with my 87 year old Dad and lived away from my husband (we live in Ireland, Dad was in the UK) - initially to help Dad recover from a hip replacement, but then he had a fall, had a leg amputated, was diagnosed with dementia and prostate cancer - and I ended up living there full time - eventually not being able to go out at all (for the last 2 years of Dad's life, he died when he was 91), because Dad couldn't be left alone. This was with a 4 x a day carer regime - he needed two people to operate a hoist to move him for toileting and to prevent pressure sores etc.

If I had known - going in to this - how things would progress, then I personally would still have chosen to be there - but that doesn't mean it would be the right decision for you - and I'm telling you this because I just want you to be aware of how the situation could develop, and what a profound effect it could have on your life.

There is/was no respite care available - I was more or less left to get on with it. There was no consideration of my mental health (luckily I'm fairly resilient) nor physical health (I got an exercise bike as I couldn't leave Dad's flat without arranging for a 'dadsitter' - far and few between). You start to feel totally insignificant, and it's difficult not to begin to resent your loved one for the position you find yourself in. It wasn't Dad's fault though, and I managed to keep that at the front of my mind throughout - which was a struggle at times, in all honesty.

Your future may differ from my past, of course - but don't go into this thinking that there will be support available for you - there won't be. Having said that, those years with Dad are precious to me - I am proud to have enabled his desire to stay at home, we had some laughs, we got to know each other (even with his dementia, he was still very much Dad), and I felt I'd given back in some way for all the support he'd given me over the years. My husband was amazingly supportive - and I think our relationship has deepened as a result.

So, that's my story, anyway - I'm not giving you advice, just a bit of insight into how it could be. I wish you all the best with your decision - I know it's not easy.

Please stand firm OP, my MIL had 4x carers a day and it wasnt enough but then she needed a short stint in hospital, i never thought she would come home, assumed care home as she is bed bound in her front room. However between my DH and SIL they seem to have agreed to overnight care, now MIL still has 4x day carers and they are splitting overnights between them. Its what they want to do but I dont know how either of them think its going to be sustainable long term. MIL refuses to move into a care home and loves having 'her kids around'. It feels like emotional blackmail to me.
Please dont get yourself into this situation.

My dM ended up on BP medication and anti depressants running round after my GM, and she didn't even live with her.
Don't do it. I can't believe your DM would let you?! I can't believe any parent would let their adult DC do it and indeed, your language suggests you've been brainwashed or guilt tripped somewhere into prioritising her needs. Not good parenting.Your DD is your priority.
Now the time to spend what they've scrimped and saved for all their lives and use it to ensure she is safe and cared for inner old age. And chosen to not downsize, the consequences of that will play out accordingly.
She doesn't need the other half of her life coming to the end of it, more than you need yours with many years to go. To deny you that would be even harsher.

I am 57 and mum is 88. At the moment her solution to all her problems is for me to move in to her spare room. I love her but this won't be happening. I might put my life on hold for a year or two but what I would be committing to is possibly ten years of 24/7 care. I'm still young enough and fit enough to have some fun and I'm not giving that up. From her point of view it would be fun but my role would be carer rather than daughter and it's not a job I want.

With capacity comes the responsibility for the results of those decisions. She won't be happy to go to a care home until she has established for herself that the alternative is untenable, so she probably does need "to get in a pickle".
^^What dint said. My mum (and yours) can choose where they live and what support they pay for but they can't choose what we do with our lives. She's seen life in a care home, she has no idea what life at home on her own will be like. It's not going to be like it was, there's a whole lot of stuff that changes radically when you are widowed and nothing is like it was before. I think she will have to experience it to believe it and maybe then she can think about whether it is the best choice for her.

Your line (practice in front of a mirror) is "No mum, I don't want to do that" or "No mum, that won't be happening"

I totally agree with what dint has said too.

Like others have said, whatever you agree to you won't get a break from and Social Services will only be too happy to let you do it.

I personally wouldn't even agree to every other day. I'd just say something more vague like "maybe a couple of times a week*.

A DF had her northern cone and stay with her family. My DF friend worked and her DM had carers come in 4 times a day but her DM's ticketing and falls in the night, combined with working and looking after her family nearly broke her.

If going home is what she wants then I think you have to respect that but make it clear there will be extremely little input from you.

She'll probably need to pay fir a cleaner as well as the carers and does she need a gardener?

Your reasons for not getting more involved are valid. Please stick to them. Do not give up your life for a scenario which can only get worse.

As for your mums care - if she has capacity and it sounds like she does - then she will will just have to buy in more care. Would a live in carer be an option? Whatever package she opts for will be expensive. Even if it’s carers plus a cleaner and gardener etc.

The other option is to let the current suggested package be implemented and hope it works well or wait until something happens which means your mum bounces back to hospital and then insist it’s a care home or increased care package paid for by her.

It’s a very very hard place to find yourself in. You have my sympathies.

She'll probably need to pay fir a cleaner as well as the carers and does she need a gardener? All the ancillary people are useful to alert you in an emergency - we were called by the window cleaner because my father still had his curtains closed at midday and the window cleaner would have alerted us too.

All the ancillary people are useful to alert you in an emergency - we were called by the window cleaner because my father still had his curtains closed at midday and the window cleaner would have alerted us too.

That's Avery good point. A very similar thing happened to a work colleague. His DM had a fall an the window cleaner alerted him.

Don’t do it, you have to say now what your prepared to do. My mum is 90 I’m 63 I’m still working part time and looking after grandchildren, so know I couldn’t commit to more than 2 or 3 times a week. She has carers 4 times a day, but she can manage to get on to the commode through the night.
If your mum can’t get up she’ll have to wear in continence pads through the night and wait to be changed, is she going to be happy doing this ? She would be much better off in a nursing home. But she doesn’t realise this until she sees how hard it all is.
I’m sorry your in this predicament, it’s the hardest thing to do, I’m constantly on edge and not sleeping, but know I can’t do more without making myself ill besides making my dh miserable too. Good luck

How did you get on OP? Have you have the talk with your mum?

It’s been a very changeable week - I did tell my mum I was going every other day and after a few checks on this she did not argue and then I felt I’d built it up too much in my head. She then was quite positive talking about organising the house, how she wanted the front room and she was looking forward to being busy at home with house sorting and being on top of finances as my dad never let her be involved -I heard him tell her stuff she brushed off. She’s obviously not able to sort a house herself and To be fair I find these jobs she’s thinking about overwhelming so must be worrying at 87. I obviously said not to worry and i was helping.
Within 18 hours care manager called and apparently I’m only going once a week for shopping - not that my mum moaned about it to her though had hoped I could WFH at her house but now I couldn’t- I tried before but impossible and it’s not long term anyway just some days through lockdown. otherwise she’s exceptionally anxious about being home and not having her things on hand or stuff she needs between calls and toiletting concerns. She’s not eating or drinking enough now - well she is as care home ensures it but it’s a worry, though she was not great with water before. It was discussed she could afford to pay for a care home - apparently though you have to be tried at home first and self funding- not sure why the self funding - apart from house itself it’s expensive to pay for home care, so the LA don’t get the money care in house or in home if you’re not funding anyway.
I feel I got in too much of a panic - but I think it will be hard when I visit - i half feel worse that she hasn’t kicked off as it is so awful to lose husband of 65 years and your care when immobile - she’s always been so clear she despises being in a care home that it’s sad she is asking about it.
Thank you for all your responses - they really helped - I still feel very guilty but not stuck in a bad position for us both - I will be back with other panics about this and other stuff when she’s home I expect - or even later if it’s all changed again! this is a lovely board and I appreciate everyone’s time.

msjinks this is uncharted territory for everyone- and this is a lovely board where there is so much knowledge and experience.
Look after yourself and try and build up your reserves before your dm is discharged. And commit to nothing.... we’ll see is a useful phrase....