DS feels trapped... but I don't think she is

[MorePressureMoreRelease]

Our DP is in their early 90's and lives with DSis. I live 80 miles away and DP comes to live with me for a 'holiday' of max a month or so 2-3 times a year.

The problem is that DP refuses to accept professional care so DSis feels like she can't leave them for more than 24 hours. DP is continent and sentient and just needs someone around to make sure they eat and drink something.

My view is that if DP refuses care then it is their call. DSis shouldn't feel obliged and that she should employ the care if it makes her life easier. Money is not the issue. Am I wrong? I think that sometimes the needs of DP should be secondary to DSis. I'm very conscious that I don't do as much or as consistently as she does but she is sometimes a bit of a martyr.

What's the right approach?

So many elderly people refuse outside care and only want their child to do it, no matter the cost to their DC. It's horrible. DSis should definitely tell her mother that she needs to accept outside care because she can't do it all.

It's very easy for you to come out and say all this when your 80 miles away and not looking after them 24 hours a day.

This may sound like an obvious question, but can your sister not move out? If she's ever going to be able to do that, then surely the time is when your mum is still mentally capable. Could she live nearby instead, and you could jointly arrange daily carer visits?

Not really. DP lives in a part of the house, DSis lives in another part - with her family. Issue is that DP does need some sort of
companion/ support but does not really want anyone other than us. I think we should just arrange it to give DSis a break. As someone has suggested upthread I should try and organise and take the blame so it doesn't affect DSis.

On a practical basis, would your sister be open to having someone come in and clean (or clean and change beds and iron or whatever) in the first instance

I think this - alongside you being the one to organise it and strong-arm it through, taking both the initiative and the ‘blame’ - is the key. Someone who comes week in, week out, more than once if possible, who your mum can get familiar with on a friendly basis. Then it can transition to this person ‘popping in a bit more while Sarah’s away’ more naturally. I think older people who resist the idea they need outside help are often doing it from fear of being vulnerable around a stranger. You need to make a carer/extra support for your sister not a stranger.

It’s not much fun being one who is blamed though, even if you are doing it for the right reasons. It might backfire and your DP might refuse to come and stay with you anymore, and make it difficult for you to go to their house to visit.

I feel for you, it’s so tricky.

Not really. DP lives in a part of the house, DSis lives in another part - with her family. Issue is that DP does need some sort of
companion/ support but does not really want anyone other than us

Could the issue be your DP sees part of the deal of your DSis living in part of her house is that she would never then require any "outside care"?
I think the idea of just organising it and blaming you is the best idea

Even if house = obligation to provide care I don't think it should be totally binding. Am I wrong? DSis has a life too, works, has DC etc.

All the ideas on here have been really helpful. Thank you to everyone. I will do what I can to help DSis feel less guilty and help organise support. NB I'm happy to have DP more but staying with me is less comfortable as the public spaces and bathroom in the house need to be shared with teenage DC so it is more like a change of scene than a long term solution. Also, I too have a busy life and I would organise unpopular help to make my life easier.

Even if house = obligation to provide care I don't think it should be totally binding. Am I wrong? DSis has a life too, works, has DC etc.

I agree with you @MorePressureMoreRelease
But part of the issue may be your DP may feel that she has already made arrangements to have people around to help her when she needs it. I suspect she is now underestimating her care needs now, which is very common.

Your sister should be able to talk to your parent, tell them how much stress she's under and say she needs a break from caring for them. If your parent is kind, they should understand that and want to help your sister.

I agree - hire in care as needed.

Your DS is under such pressure here, it is absolutely unfair to her and your DP is being very selfish. It isn’t unusual for seniors to underestimate their care needs or to become fixed in their ideas about who should deliver care, though.

I think you need to present a united front here and insist that DP accept some care, for the good of your DS and her family. If it helps to paint you as the “bad cop”, so be it - hopefully not so much that your DP refuses to come to you in future though.

We are buying in as much care as we can. Firstly we got cleaners and “companion care”- someone to drive DP to the shop once or twice a week. We framed it as help for us, rather than help for them. DP ended up more than happy once they got to know them as it was social interaction as well as help. It’s been one step at a time, the personal care person came round and had a cup of tea and a chat for a month before they were allowed to help with washing etc

you do say though that your sister feels your DP can’t be left for more than 24 hours? So it’s not like she can’t be left at all, and your sister can still go on breaks and holiday as she can stay with you? Does your DP actually need the help? I’m not quite seeing the problem unless your sister likes spontaneous nights away? She can still live relatively normally except for having to arrange care with you if she wants to go away?

@Thisismynewusername1 the issue has arisen because DSis and I need to go away together but it does go beyond shunting DP between our houses as a long term solution.

Ah ok.

we were advised by social services to start with care before it’s needed. So DP were used to people popping in to help. It’s proved valuable advice- like I said we started with a cleaner “for us”, then help with shopping, again so DH could work. Personal care took a lot longer but once they got to know the carers they started allowing help with hair washing then slowly progressed from there.

perhaps phrase it like that? Start now so when she does need help it’s an easier transition.

if she’s relatively independent would it be more arranging someone to pop in and make sure she eats and is generally ok? We found a companion lady who is fab for that. They are more friends than carer/client.

I think your idea of organizing some help and being willing to “take the blame” if necessary is a good one. I’ve done that with my elderly Dad-I told him that he needs someone to help with cleaning/light housekeeping , for example, and quietly arranged for them to come over and meet him-once he met them, he was happy to go along with the plan.

Now the battle is preventing him from cancelling and letting his flat get into a state-he cancelled last week as he was “too busy” ( he really wasn’t) and things are getting messy!

One question here is who's paying for the care? It's very expensive. It's hard to 'insist' on something if you're not paying for it. I speak from experience. We're trying hard to get DMIL to get care in to help her look after DFIL (to try to stop her complaining about how much pressure she's under - which is true - and wanting her family to do more). She can easily afford it, but she doesn't like having outside carers. It's ultimately not possible to insist someone has something if they've got capacity and they're paying.

Yes, @tobyj , the financial aspect is tricky. As @Photio speculated, does your Mum view their current setup differently to your sister, I.e., she is providing your sister’s family with a home (presumably rent-free?) in return for their care ( and only care from them) as she ages?

You may need to have a diplomatic conversation with your sister about this. The other tricky aspect, which you may have already discussed, is what happens if your Mum does need residential care and her house needs to be sold to fund it? Your sister’s family could be homeless.

'We later discovered she had tens of thousands in the bank while she was crying poor to anyone who would listen.'
Dementia also causes people to lose all understanding of the concept of money and just before diagnosis my DM regressed to her childhood in the 2WW believing herself to be short of money when she had in fact never been wealthier!

Your sister needs to go away and have a break. Your mother has mental capacity and it is her decision when and whether she eats. She must explain to mother that she is going away for a couple of weeks and that she is happy to organise care during that time and involve her in setting this up. Tell her that you worry she might fall on her own and would feel happier if some care was in situ. If she refuses that is her decision.

@loveclipbook I work in the dementia sphere so I am definitely keeping an eye on this as it’s a noticeable change in behaviour.

You really think it’s fine to leave a vulnerable adult alone for a prolonged period when they are a fall risk and won’t eat?

they may have capacity but that’s neglect. They have moved in because they need care, you can’t agree to that then not do it because you want a holiday. Anything happens and social services will be on your door asking for an explanation.

if you can’t care for them they need to find a carer, assisted living or a care home.

our dp can’t be left for more than an hour or so. They have capacity but need a lot of physical help. They don’t want help but there’s no option, it’s finding a way for them to accept it. We don’t go away as currently they won’t accept respite. So we’re working on carers coming in for short periods until they’re
comfortable with that.

@Thisismynewusername1 i think you’re comparing apples with oranges. So your parent can’t be left for more than an hour. My 80 year old parent lives alone and copes fine. Nowhere has the OP said that their parent can’t be left. Who are you to decide this elderly person can’t cope alone? Surely if she refuses to book care that is her look out?

The dsis had said she can’t be left more than 24 hours as she won’t eat.

o/p said

Yes she doesn't really have care needs but there is the fear if she falls etc (she has osteoporosis) and she's pretty much given up on feeding and watering herself. NB brain still 💯

doesn’t sound like someone who can be safely left while their family member disappears for a
week to me.

She has also said she is sentient, so at the end of the day it is her choice.

The definition of sentient is no more than 'being conscious with one's five senses in working order'.