What's the right thing to do?

[HelloCheeky]

This is quite a big moral dilemma to post in chat. I have discussed it endlessly with DH and a counsellor. I'm not really looking for the answer from MN as I know it's a big situation morally (and legally) but just wanted to hear different perspectives.

I have sole responsibility for DM (90). She has dementia and mental health problems and has until recently lived alone in a rural area about 5 hours travelling distance from me. For the last three years I have been travelling backwards and forwards to her house to look after her, her house and garden and medical care etc etc. Since Christmas she has had a series of falls. In April she fractured her hip and has been in hospital.

As soon as she went into hospital I decided that I could not facilitate her going home. I felt she was unsafe there not to mention lonely and yes the strain on me was a big factor too. I work, have studies have two children. Looking after her had put a huge strain on us as a family. Both my DS had far less support from me than they needed during this period and my younger DS went off the rails for a period because of this.

DM did have a SW and carers visiting but it wasn't enough to keep her safe and there were so many things carers couldn't do like look after the house and take her to medical appointments etc.

I argued with the social worker that residential care would be better for her. At first SS resisted this but eventually did agree it would meet her needs and they would help with a placement. I spent a long time looking for a nice place for her. The place I found is not really convenient for me but best suits her needs.

DM moved into the home but keeps saying she hopes she will go home. She has been judged to have capacity to decide this. Of course I understand that legally and morally that we should let her go home. However I really think she has little insight into her situation and also it will be incredibly hard for us as a family. The only way I can think of to make it work at home is to give up my job and move in with her. DH has reacted very angrily to this idea as our family life will be irrevocably changed.

DMs SW is visiting DM at the care home tomorrow and I will come too. A final decision has to be made this week whether she stays or goes home. I feel incredibly sad at insisting she does not go home and anyway I do not have the legal right. I feel we could both 'persuade' her but it would probably be coercion. Added to this DM has a friend who thinks she should go home. The friend is a solicitor and I am somewhat scared that she will try to say I have been coercing her.

What is the right thing to do?

Is moving her closer to you an option?
Or having a live in carer? (Sometimes cheaper than a home).

I don't think it's fair on your husband or children for you to move in with her.
If she is aware enough to make the decision to move home, you need to explain this to her.
Explain the impact it's having on your children.

Could she live with you or is this not an option?

It sounds awful but I guess the only other option is to back off and let SS sort everything.

Who judged that she is ok to make her own decisions? If SS agreed to put her in a home initially, they should be pushing for her to stay put.

Awful dilemma.

For me it would be about my being h able to visit as much as possible and that would mean her living the nearest out of her home and the care home.

If your mother was in her right mind she really wouldn't want you to move in with her and abandon your family.

Why can't she move into a home in your town so that you could visit a few times a week?

Why don't you speak to the SW privately and explain that you feel under tremendous pressure? She is a working woman herself; she knows she couldn't abandon her family to live with her mum.

Thanks for your replies.

She has repeatedly said she does not want to live in the large city where we are. She is quite clear about that. I think the care home is a good compromise because it is in her county but easier for me to get to. I can visit more often and I can spend time sitting and talking to her instead of cleaning and gardening and catching up with everything.

I did try to leave everything to SS before when she was at home but that basically meant she was neglected which I found upsetting.

I am planning to speak to SW privately but it just feels sad and underhand.

No-one wants to stay in a care home. They want to go home, where they know and feel safe, have a routine, memories, independence etc To them, a care home is the beginning of the end.

However, they don't realise the danger they are in at home, the stress and pressure it causes.
It sounds like a care home is the best place for her. Your argument above about visiting more, spending more time etc is solid.

Suggest to her solicitor friend she becomes the carer. You have responsibility for a family at home op. Your dc need you - you have already had a scare with one - please don't feel guilty for putting them first.

What difference does it make whether the care home is in the city? It's not as though it'll be a high rise flat. They always have gardens, don't they? I think any move has to be in your interest as well as hers; she has dementia and frankly won't know where her home is. I'm sorry if that sounds brutal but once she's moved out of her own home she could be anywhere.

Do you have power of attorney?

Is she well enough to go into sheltered housing? Do you have any near you? Tbh, harsh as it sounds, once she is in a home it wont matter where she is as she will be unlikely to leave its 4 walls but you could take her to visit your home, sit in your garden...

If it were my mum, i would move her closer to me. Keep your family intact. Sod the solicitor /friend... Once dementia starts to creep in, you will probably find nothing is right anyway. So you have the airplane analgy, put your own oxygen mask on, look after yourself, before you can take care of her.

Its a tough one but she is going to need more care as time goes on, not less.

If your mum has capacity to decide you will have to let her.

You need to help. manage her expectations on what you are able to capable to offer in terms of support.

Once the home visits are in place perhaps your mum could hire a cleaner ?
Pay someone to iron clothes ? ( my nan is house bound and can’t move without assistance, we do have the benefit of being a large family and local ... but we are all busy working family so we out source this in many cases to her careers as they want additional Funds so when we see her it’s quality time )
If she is capable Of opening a door could you arrange home delivery for food?
Delivery of milk if needed with milkman?

If she is happy with this type of arrangement... and it’s possible for then maybe it will help
Take the strain off you a little? And perhaps a visit every other weeks is viable.

If your mum is able to make choices then you must let her, if she is capable then if something hasn’t come or been done she should Be capable to tell you over the phone and you can deal with it remotely.

It’s no easy task but I feel like the expectation on visits is a little too high.

Assisted living may be an idea but I imagine it’s the not wanting to leave what is familiar issue too x x

I would have her live with me and I say this as someone who has done it for my mother father and grandfather for many years. They looked after you when you was born and imo they should have the same. I had to have my father put into a nursing home at 56years old (him not me) and it hurt me alot that I couldn't help him, there was no other option he had very complex medical needs which I could no longer keep up with and I was looking after my disabled grandfather too. So from my view I would move heaven and earth to have her live with me.

@stillawakeat4amagain, did you see the part where the OP says her son went off the rails due to her having to spend so much time with her mum?

She insists she does not want to live in London. On top of that our house is not accessible because of her mobility needs. It would require major changes. Also I am at work during the day. She would be alone and would wander into the street. Finally, she does not sleep properly at night and wanders into other people's rooms and wakes them up. I need to sleep in order to work as do DH and my kids.

I did move heaven and earth to care for her as she wanted, at home.

I requested SS found a placement in London but her local authority budget did not cover any homes close to us and we cannot afford top up money.

We have very little money and DM has no savings whatsoever. We could not afford a cleaner, gardener etc. Her care at home was totally dependent on me apart from carer visits of 30 mins at s time maximum which was just to prepare snacks and do personal care.

Do not move in with her. I'm with your Dh on that. It would be absolulty ridiculous for you to give up work and move 5 hours away, leaving your family. I would not agree to her moving home and if it was a thing that SW insists she's capable (which, with dementia, I would question) then take your details off any contact list they have and tell them you are no longer going to be part of her care team. As harsh as it sounds, you cannot be held responsible for her if she goes home. Inevitably she will have a fall and then how will you feel? My father was in a home and while he wasn't overjoyed about it, he wouldn't have expected any of us to put our lives on hold to travel regularly to visit, maintain the house/garden, be there for medical appointments etc if he'd stayed at home. Each of us has family so it was never going to be an option. End of the day, you have a Dh and kids, you don't live near enough to be a regular carer so you need to take a step back and not agree to her going home. Let it be very clear and noted on her file that you are against it. If she does go home don't be there to facilitate it. Let her friend take over her care and see how well she thinks your mother can manage then.

And don't feel guilted by the bullshit 'they cared for you when you were born' comments. Of course they did, they chose to have kids. Parents don't raise kids in order to have someone to care for them in old age, and those who expect it are extremely selfish.

The right thing to do isn't to sacrifice your marriage and dc.....

Do not move in with her, it will harm your kids and ruin your marriage. I spent last year driving 8 hours to look after mum and leaving my family for a week at a time every third week. The only way we got through it was because her illness was terminal and it was only a few months.

You are absolutely not unreasonable to put her in a care home or somewhere she can be properly looked after. No matter how much she's unhappy about it, I can't see another option.

I would tell the social worker they need to re asses her capacity to decide for herself.

Your not local enough to police her wandering and that makes her a danger to herself.

Your a tough place but all you can do is fight for what you believe is the right thing for your mum.

Could you write a letter of complaint to ss listing with dates ( rough if need be ) of your mums wandering Andrew other events that show incapacity to be alone /how far dementia is progressing?

I would lay the facts out to your mum also ( provided she has some capacity left.

Your not coercing if you are simply stating the facts and concerns as you see them.

If financially no one is particularly well off it would be foolish to quit your job and move in with your mum financially and that’s before taking into account the emotional side as a family.

I imagine you are feeling trapped and at a loss but all you can do is be frank and factual with your mum.

Make note / keep a diary of instances to add to your concern about capacity and speak to the social services team as often as possible.

They are over stretched I know my mum used to work for them part time and had close to 100 people to look after ... the work loaf is crazy so stay vocal but calm to keep at the forefront of their mind.

Your a lovely daughter to put so much care and thought into your mum but you can only do so much x xx

Sorry typing one handed which has resulted in a fair few typos ... hope you can read through them 😬🤞 x xx

I have been keeping a really detailed record of her wandering and other issues that were making her vulnerable for the last three years and have persistently told SS that she is not safe. They are not in the least concerned. They used to ask her if she felt ok and safe she would say yes and then they would tell me everything was just fine. It was awful. It sounds awful but when she fell and had to go into hospital it was a relief because she was finally safe and I was able to say I would not facilitate her discharge. However if she insists on going home now there is nothing I can do. It is extremely painful. I of course want her to be happy but she is really not aware of her situation. She will be unsafe at home and our family will once again be under huge strain.

Next time any of your rush to judge when someone 'puts their parent in a home' take a minute to really think about it. First of all the days when any relative was allowed to 'put' their relative in a home are very long gone because of the 'care in the community' mantra ie lonely neglect and secondly SS just do not have the places or funds to do it.

Not my mum, but we had a similar situation with a family member. I have a chronic condition and in the end I had to say I could not provide any care and put it onto social work. It felt really cruel and horrible, but it was only after I refused to care or visit every day that they suddenly changed their minds about her being able to be at home.

Thanks so much for all the replies yesterday. All perspectives help me think this through.

I am inclined to back off and ask that my mum and SW come to a solution together without my input because I don't want to decision on my conscience. Inevitably though this will impact on me because her care at home is much more complex than just having personal care visits, which is all SS will fund. I think that people with high care needs will sometimes be allocated a live in carer but this is also quite a big thing to organise and has pitfalls which will draw me in as I have financial power of attorney. Mum is also likely to say she is fine with minimal care as she has little insight into what it needs to keep her at home. If I back off is it likely SS really will step in? I don't want things to break down again. It took so much time and effort to find her this good care home. This is so hard.