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

I'm really surprised at some of the responses. It's clear that @MorePressureMoreRelease is concerned* *about her sister, which is why she would like carers to go in and help her parent, giving sister some respite.
I totally agree that our elders need care, and also that they must have a say in that care. But in giving them choices, we have to watch that they don't end up having them at the expense of the person doing the caring. Some of the responses on here seem to be all about the right of the parent to decline outside help, which then lands the family stuck between doing it all or risking charges of neglect, and that's not right either!

Yes, I think you both need to put your foot down and insist on help, although I think presenting a unified front would be best, personally.

Could you look at Age UK/similar helplines/services that could give your sister somewhere to talk through the situation with her to try to get away from some of the guilt? Cause taking on too much of the situation is bad all round, including for your DP.

So I’m your DS. My elderly parents live with us. My mother refused to have care for certain things and I said tough, there’s only so much I can do.

I get the feeling of not wanting to leave her with carers in case something happens, but that way madness lies. My mother had a fall when I was at home and I didn’t manage to prevent that and she had another when she was out an about, so you just have to just have to be philosophical.

DS needs a good care plan for when she’s home and a FT care including overnights for when she wants to go away.

The OP is not being unkind. Some people are martyrs (I know a few). And ultimately if her sister is doing too much for their DM then it could be to the detriment of DM's health. She is making her reliant when she could be more independent.

If the parent is still in control of all faculties, then the parent still has control of finances. The sister can’t just use the parent’s money to hire care without consent. Are you suggesting your sister should pay for care out of her own pocket?

I can totally understand why your sister is reluctant to leave your DP alone for too long. If DP has a fall it will be your sister who has to pick up the pieces. Calling your sister a martyr is very unkind.

I have been in a position not wholly unlike your sisters. It probably won't help her just to say she should get more help, even though you are right.

As other posters have said, if you want to help her you need to find carers, and you talk to your DP about the need for it.

I say this because that is what I wished my family would do, I know its not easy when you are the distant person, but if you want to help your sister I think it's what you need to do.

If cost isn't an obstacle then get help for your sister. A cleaner would be a good start, particularly with bed changing. Then add in a companion/carer making sure they visit over a mealtime. Personal care might start with a manicure and progress when mum is happy, if necessary. Even just knowing someone else is in the house while she showers might help. If you/DP are paying you have more control and hopefully consistency

Get a lifeline installed,
A daily cleaner/home help
Appetito/meals on wheels, they will bring a hot meal every day.
Is there a key safe?
Perhaps ask for an OT assessment to check your parent has all the aids they need to help them navigate the home safely.

The reality is that your ds is living with your DP 24/7. Meanwhile your taking your DP 2 or 3 times a year for at most a month at a time.
Your not comparing like with like at all. Your D's has to organise her life around your DP needs both physically and mentally. She has to organise and bring dp to doctor and hospital appointments. Your DP is now 90 and your sister could have been managing this for years.
She is probably physically and mentally exhausted. Along with this she has a husband and possibly her own children to consider as well.

I know several older people who don't want career's or go into a nursing home but the reality is that it not fair to expect an adult child to put their life on hold to do this.
At this stage you need to have a face to face chat with your sister and decide what help your sister and mother need now. You may have to tell your mother you decided to get a cleaner ect into the house so X can have break or because your sister needs to leave the house say each Wed.

With looking after an elderly person they get worse physically as they get older. They think they are still able to do things but in reality it's not safe say for them to say drive, deal with a lot of steps ect.
Some people are still very good mentally at 90 but then can begin to become forgetful and can become stubborn along with repeating things or complaining about everything.

The reality is that your sister needs help now on a regular basis with your mother. She is taking the mental and physical load of caring and it's far from easy. How often does she get a proper break away from your mother?
How would you manage if your sister got sick and could not mind your mother?
Could you arrange respite care for your DP and let your sister go away on holidays for a break then.

Do you leave them for long periods when they're with you?

DSis can't just employ care using their money if they don't consent to it or are you planning to pay? Even if care is employed, no one can force DP to accept it.

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

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

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.

@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?

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.

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

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.

'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!

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.

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.

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!

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.

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?