Aibu to expect my siblings to help care for our elderly parents

[Windleberry]

What to do? I think I just wanted to vent really and gather opinions, thoughts, advice.

My parents are 88 and 93 - mother has advanced dementia, doubly incontinent, can no longer converse, can no longer walk. Father - memory now pretty bad but physically okay, has phases in denial that mother is as ill as she is.

I have 5 siblings. We all live over 100k away from our parents and in different directions to each other. Only 2 of my siblings drive. Our parents live in countryside, 7k from a railway station with a very scant bus service from the rail station to their village.

During covid my husband and I, completely by chance, ended up living, temporarily, just 30k away from them so we popped in to them once or twice a week and, as their care needs grew, we got more involved in helping them over the next 2 years.

During this time, even after lock down was lifted, my siblings rarely visited them and when they did it was just for lunch and a chat - nothing practical like laundry, cleaning, bill paying - they left that all to me and my husband. However they demanded to know everything that was going on with them so I updated them on everything we did or planned to do.

In March 2022 my husband and I had to return return home, 100k away from my parents, therefore my husband and I arranged a daily carer to help my parents for an hour a day (they refused more than that - accepting care is and was a huge struggle so it was extremely difficult to put in place).

More recently, with mother's condition ever declining and now needing two people to lift, wash and change her we increased care to two carers for 3x1 hour visits a day. Imo my father also now needs help with houshold things as he can no longer drive to the shops for food etc and often forgets to make meals for them both, yet will not allow the carers to prepare meals for them. My husband and I organised delivery of microwaveble meal and deal with their finances. I asked the carers to contact any of us if/when necessary. Me and my siblings have equal health and financial POA but I am the only one who has bothered to use them.

Due to a disability I can no longer drive and am off work long term sick so rely on my husband to drive us when we visit my parents. I have been by train a dew times but it's a difficult journey because of my disability, lack of buses and my finances won't stretch to taxi fares.

Fast forward, since moving away from my parents my siblings have started a visiting rota but still look to me as lead. If something doing is needed by the carer it is either me doing it or it is met with a silence - I've tried to stand down hoping they will take initiative but it doesnt happen and my parents are thr ones who suffer. My siblings pretend to miss the carers' calls, pretend they have no internet, pretend they're suddenly working full time plus late into the night and/or are "too busy", too tired, too everything.

Recently the carers have taken some days off on which some of us took turns to cover them. The care is mainly getting my mother up from bed, her incontinence pants changed and clean up where she's spread faeces around. It's unpleasant having to deal with changing and cleaning mother and age hates it too. Despite her dementia she is aware and doesn't like her children doing it and besides she's physically stronger than me puts up a terrific fight and my husband and I are afraid of hurting her in the process.

The Carers are taking 5 days over Christmas off. Nobody volunteered to cover for them, all kinds of excuses, so eventually my husband (who is an angel) and I said we would cover Christmas eve, Christmas day and Boxing day. Another sibling stepped up for the other 2 days.

However, yesterday, my husband's elderly mother has been rushed into hospital and is in intensive care, reason unknown. My husband's parents live 200k away in the opposite direction to my parents.

Obviously my husband needs to be available for his mother now and, because the rail network is on strike over Christmas, there are no trains running so I find myself unable to get to my parents and can no longer cover for the carers.

I told my siblings that my husbands mother was urgently rushed into hospital in a critical state, cause unknown, and that as there were no trains over Christmas I could no longer cover care of our parents over Christmas.

So far - days later - not one of my siblings has offered to step in to help our parents. One has said she'll phone the carer, so I expect she plans to ask the carers to cancel their holiday!

I am angry and resentful that not one of them has stepped forward to help their parents, parents that have helped them enormously over the years.

What really rankles is that I've found out from doing my parents finances that every single one of them has had huge financial handouts (one was even bought a house, another a new car etc!) from my parents over their lives but, when I asked for help to pay a dental fee, my parents declined. Yes, I am bitter, yes it is an ugly feeling, and yes I feel resentful that my husband has done more for my parents than my siblings have.

I am waiting to see what they come up with to help our parents now that I'm unavailable. Minute by minute it seems increasingly likely that they're happy to let our mother fester in her bed of urine and faeces while they enjoy their Christmases.

What would you do? Respite care in a home is not an option and I've been unable to find respite carers - so it is down to me and my siblings.

What your siblings or you want is really irrelevant. This is about your parents needs and that is clearly (in your mother's case) 24 hr nursing care. Sorry it's reached this point and I completely understand how it has.

Respite care in a home is not an option

Why not?

I am also 100k away from my parents (and my siblings), have my own disability, am on long term sick leave from my job etc etc have my own commitments - the same as my siblings. Unfortunately my parents' brains are beyond considering anything, let alone considering residential care - mother has advanced dementia, father is pretty much senile now so, if not down to us (their children) then who is ultimately responsible for them?

It does sound like your mum in particular needs 24 hour care which, with the best will in the world, you won’t get from carers going into their home unless you pay for live-in ones. Get in touch with Social Services - maybe an emergency/respite placement will crop up to been give you some breathing space over Christmas/New Year.

I'm glad that you are contacting social care. There is no cost for emergency respite care up to six weeks. My MIL had it, and it turned into a permanent placement

You need to absolutely emphasise that they're unsafe and make every single consequence of them being alone for that period absolutely evident.
Also emphasise your distance, every single disability of your own, your MIL's condition, and the physical impossibility of you getting there.

Don't take no for an answer. Obviously they might not be able to magic places straight away, but they HAVE to agree to do something.

Good point. My father hasn't been assessed for capacity - his GP is arranging for him to be tested (as of 3 weeks ago). His mental ability was slowly declining but recently this has sped up.

Excellent advice from @saraclara. It’s gone beyond even a live in carer now, I doubt anyone would take it on. Social services need to sort out a six week placement asap.

We tried live in carers for my parents in an unsuitable house. DF fell over and broke his hip when the carer was helping DM upstairs in the bathroom.

We also had to go every day for two hours while the carer had a break. And when the carer had days off. Why didn't we employ other carers instead of going ourselves you ask?

Parents, who did have capacity, hugely objected and the compromise was they would accept a live in carer and no one else. DH and I (retired) did it for a few months they went into a care home.

Thinking of costs, it was a little cheaper to have a live in carer plus cleaner whilst running a house, shopping (done by us). But not as much bad you might imagine.

The carer began to need to get up in the night to help them. And wanted a night carer too.

They both went into a local care home.

DH and I moved to a large flat a year or two after their deaths.

OP I feel for you 🌹What you have had to put up with is immense, and unremittingly grim. Although my mum has dementia, and Alzheimer's, she is nowhere near at the stage you are at. My sister lives far away so can't do the hands on stuff, but is supportive, and does not do the things your siblings have done. Even though other people are well-meaning, if I get one more link to "things that might help" or told "you need to look after yourself too" I think I will explode. I think there is a board on Mumsnet that is for this sort of problem too and you may get some comfort or help there. I have quoted @saraclara because I think there is something in emphasising to social services they will be completely left alone and it is unsafe and take this step first just to get the immediate problem discussed. I agree with OPs that a care home is probably the answer, and money is now completely irrelevant - write it off. I think there probably does come a point where the wishes of your parents have to be over-ridden for their own safety, and you may have reached it. Try to let go of the feelings you have about your siblings having more money out of your parents than you have, it won't help you now, and you and your husband sound like lovely people - hold on to that, it is really important. The moral high-ground is derisory and bitter comfort in times like these, but it must be better than guilt. I am wishing you good luck for tomorrow, make the call xx

I have very good reasons why I won’t be a carer for my elderly parent, even for a day. Your siblings may have good reasons as well.

the system you have in place is too fragile. Your parents are at the point where you need built in redundancies. A care home would be more appropriate, but if you are going to keep them in the house, you need an agency that will provide care even if the regular person is unavailable.

I presume that you've arranged their present care privately, OP. And that's the problem.

Had you gone through social care at the beginning, they'd have arranged the home care, and though your parents would still have to pay for it, it would be there 365 days a year.

They absolutely need social care assessment at the very least, plus all the benefits that they're entitled to (some are not means tested). So I hope tomorrow's call goes well.

Hi. Thanks, yes their current care was arranged privately - their GP told me that they are not eligible for non-private and that I'd have to arrange care. Their GP even recommended a carer he knew.

When I more recently contacted their Social Services (to find respite carers for another time their regular carer took time off,) Soc Services just referred me to website giving a list of carers in the borough.

That’s what happened when my parents needed care too. If SS aren’t funding it they just wash their hands of you - it goes “Here’s the list of providers, you sort it”. You do need them to sort a temporary placement in a care home though @Windleberry, don’t let them fob you off.

Your siblings have got a bloody cheek insisting their parents stay in their home when they are not willing to do any of the caring. Got their eye on the inheritance no doubt. Do you have children OP? Are you by any chance the only one of your siblings who doesn’t?

OP someone with advanced dementia who is doubly incontinent simply cannot be at home unless there is 24/7 care. Your mother is at risk in so many ways it is actually unconscionable that she is still living like this. This has progressed way beyond the ability of family to ‘help out’ so in that respect YABU to think that your siblings can take on personal care at this level, at short notice and right before Christmas. I think you will have to approach an agency to supply short term care and then throw everything you have into securing them a care home placement.

It is time for a family meeting and some home truths for everyone. It sounds like your parents have significant assets and they need to be utilised for their care. Imagine if your mother was to pass away from an infection caused by lying in her own faeces - this is a genuine possibility. Honestly I am horrified.

I don't have any children, some of my siblings do, but not all, but that's sort of irrelevant now as their children are all well into adulthood. However, they did all enjoy Nanna and Pops helping with childcare when they were young. Some of my siblings are retired, some still working (part-time). I am off work, full time sick leave, and as my condition is incurable and progressive (and often, but thankfully not always, debilitatingly painful but always knackering ) I will not be returning to work so, although I am at home all day I am full time ill with my own (wonderful) nhs hospital team looking out for me.

My parents GP is happy with their regular set up. I am not.

It is an unforseen emergency (my MIL has been rushed into intensive care - see my original post - that has caused me to be unexpectedly unable to cover my mother's carer over Christmas at, yes, very short notice. I stupidly thought my siblings might help their parents, even if only making phone calls to find outside help, in such an emergency especially as it is they who want our parents to be able to stay in their own home. I want them, my mother particularly, in a nursing care home. I do not want to be nor am I capable of being their carer but didn't mind too much covering their carers for a few days over what might well be my parents last Christmas. As it happens I now just can't get there to help.

Sorry the situation just isn't workable. Your parents need to move to a 24/7 care facility, you all live too far away to properly care for them. It's not the old days where everyone lives round the corner It is hard because they live rurally , I would look at moving them to a care home closer to you all. Providing care isn't mandatory for your parents I'm a HCP and I find it very difficult to care for my own family members, it feels different. I would never expect my DD to care for me when I was elderly.

You need to tell your siblings exactly what you've said on this thread, toned down. Why haven't you? What are you afraid of?

Then look into more care, nursing homes etc and then step back.

No way you cannot hoist one person by yourself even HCPs don't do that. It's a double up minimum for her personal care so they will need to fund a live in carer then on top visits 4x per day at a minimum to assist with personal care.

"My parents GP is happy with their regular set up. I am not. "

I think you need to be firmer, when dealing with SS and GP.

Say to GP: would you mind putting that in the notes, that you are insistent that they are ok, whereas I am not. At risk, duty of care.....all the words that will make your case get noticed.

Long and the short of it, your parents need to be in permanent care irrespective of what your siblings or parents want.

my siblings want my parents to stay in their own home

Then they must take on their care

This is an urgent situation for your parents and you-who are at risk of complete carer breakdown.

Please call your parents local adult social service department.

Tell them you can no longer do ANY of this... It s unsustainable.

You've more.tjan done your bit.... (too right I'd be really hurt at the dental bill denial... All the while giving huge amounts to your sibs).

Social services are under a legal obligation to do an urgent assessment.

Given their extreme needs-it is fairly impossible to get what your parents want.

Their needs have gone way way beyond an hours care here and there.

Seriously, sod what your sibs want or don't want - they're not the ones putting their life on hold looking after severely unwell elderly people at a distance.with all the physical, emotional and practical cost this is coming from you.

Of course they've avoided doing anything. (as you know organising consistent reliable home care is fiendishly difficult and time consuming) .... They know you'll pick up the slack..... Just stop 🛑.....

Please do what's best for you!

The next step is the phone call.

The state has an absolute duty to assess and a duty of care towards you.

You are not 'responsible' for your parents.... In the sense you have zero responsibility (legally) to do physical tadks...
Although the attorneys hip means you can step in to make decisions.