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.

Apart from the fact that many people are hoisted by one carer if that is manageable and some patients even hoist themselves without carers needed if they have the right hoist, OP does not say her mum is hoisted,but "lifted" by 2 carers. At this stage she might manage a Return/ Sara Steady type standaid. It may just be her bed is too low. Sometimes simple changes can make a huge difference and that is why am OT assessment world be good if not yet happened.

TBH the chances of finding a care home that can take both of them together immediately is slim. But what social services have a much greater ability to do is get proper home care sorted with an agency that can cover holidays while somewhere suitable is found.

OP states that her mum fights against being cared for due to her advanced confusion. No way on God's earth can you hoist with one carer if the person being hoisted does not cooperate.

It’s a no win situation OP - ask SS to include all siblings on emails to try and spread the responsibility.
it’s usual ime for one female family member to be landed with responsibility - but you are in a no win situation. DF won’t be happy, your DM won’t be happy due to her dementia, the siblings won’t thank you as it demonstrates that they haven’t pulled thrleir weight, the SS will struggle due to the lack of carers - if your siblings are cruelly ignoring them could your parents be partly to blame, they are their children after all.
This is an opportunity for you to step right back without guilt.

It actually says she is aware when it is her family providing the care and fights against that. I agree it is unlikely she will be single handed care but it all needs to be properly assessed .

How rude! Perhaps because I am new to the site and getting used to it! Have a nice day

Hi CocoFifi
I am grateful for all comments agreeable or not - they all help me. I am also clunking around on here inexperienced at how it all works e.g. I've replied to a few of the suggestions/questions I've been asked but my reply has disappeared into the ether. It does seem to work when I use "Quote" though.

Thank you everyone for your replies at this busy time. Your comments and suggestions are invaluable and have helped me to see the situation more clearly. I will post the outcome as soon as there is one.

Thank you all wonderful people. ❤

If your siblings are refusing to push through with getting your parents into residential care, then you need to back away. Call social services now, tell them pretty much everything you've said here, and leave it to them.

With all due respect, having health and financial POA, the fact your parents want to stay in their own home is neither here nor there. From everything you've said, it sounds like residential care would be in their own best interests, and I don't think any doctor would disagree with you. The whole point of POA is to give you the power to act in someones best interests, even if they don't agree.

If there are no available care homes locally, you can look further afield. Perhaps closer to where you live? That's what my dad did with his mum. She ended up in a care home about an hour and a half from where she originally lived, but just 20 minutes drive from my dads house.

I'm sorry, this is such a horrible situation for you AND your parents. It sounds like you've gone above and beyond for them. But people can only go so far.

Did you say earlier that your dm is immobile? How does she get cleaned up if she's had a bowel accident?

My mil managed at home with a live in carer until this point. Then she needed 2 people to move her in a hoist, one wasn't enough to do it safely. So she had to sit in her own mess until the second carer came in and that could be several hours.

Live in care is great, it worked well for us for a long time, but only when mil could move safely with one helper.

I hope you get this crisis period covered and then can think about what to do next.

It's a horrible time, for you and your parents.

I agree.

Your parents need to be in a hone by the sounds of it.

You have been a very dutiful daughter, ably supported by your husband. Your husband's family emergency has made you both realise that things cannot continue as they are. Live-in carers would be horrendously expensive, it's doubtful that your siblings have looked into this. Your parents are really on the cusp of having to move into a nursing home, which will also be horrendously expensive, probably £10,000 pm, necessitating the sale of their house (if they own it). Health emergencies, when the families are 100km away must be a continual worry for you. Hopefully Social Services will be able to provide advice & support to you, your siblings and your parents. I really don't see this situation containing for longer than 6 months..

Hello. I’m going through a similar situation. It helps me to read posts like yours as it’s very isolating being in this position so I hope you don’t mind me sharing here. I am not coping. I tried to get mum into a home but relatives (non-contact with my sibling - mental problems and unreasonable behaviour) have told her she will hate a home. They do not support mum at all with anything. My sibling even says it’s my fault I have to do it all! I think jealousies come up at this time in a parent’s life. She would never help anyway, she hasn’t visited mum for years.

This year, the money thing has come up. I’m not surprised you felt upset you didn’t know about money spent on these unhelpful siblings. I’d be furious myself. It’s very hard to detach yourself. There’s an elderly person who needs help in front of you. In your case, two people. Only a very heartless person would walk away. You sound like a good person. But nobody tells you this, because generally, it’s a crap situation to be in. My main anxiety is how often we use the hospital. I have to fight once we’re in that system. I don’t even feed my kids when this happens, my partner has to step up hugely.

But the worse thing is is how lonely it is. It has fractured my feelings towards my family even further, and it’s draining having to fight for proper care. The best way to do it is to choose a nursing home near you and you get on waiting list now. Then you can start ball rolling with selling their home to pay for it all. There are bridging plans where you pay after you’ve sold up. I had it all in place, mum was in agreement and then she changed her mind. We rely on carers. You have to fight to get a social worker here, they have a list as long as your arm but fight you must. They will come for an assessment and refer your parents but it’ll be a home near them unless you get involved and find a good one for them and do it privately. Good luck.

Did you pay for live in care from money you had? Or was it done via social services?

We paid around £900 a week for the live in carer from pils own funds. Which at the time was much cheaper than both of them being in a care home. But obviously you need to have enough cash and a spare bedroom.

@Windleberry I wish you every bit of luck in getting something sorted out. We're in a similar situation and it is exhausting, frustrating and heartbreaking. Because there are private carers coming in (supplemented by family) social services - who are under a massive strain - are managing to absolve themselves of responsibility. We're told they can't get funded help without an assessment and they have no-one available to do an assessment. Like you the GP seems to think the situation is acceptable when clearly it is not - how much of a crisis needs to happen before anyone will actually do something? We are desperately trying to get some care arranged to avoid a crisis but it seems increasingly unlikely. We're in the midst of a mini-crisis at the moment (2nd fall in a week) but because no bones were broken - thankfully - a phone call from the GP advised bed-rest. The less frail parent (with dementia) can't make a cup of tea without supervision and is not safe on their own in the kitchen. That all gets masked by frail but switched on parent being there for contstant guidance - which they can't do from their bed. Cue, family in attendance 24/7 dealing with toiletting needs of frail and fallen parent.

Other siblings help with managing finances and online shopping (thank goodness) but also seem to have rose-tinted spectacles on when it comes to the level of care needs (current and potential). I'm being pushed towards looking at live-in carers, so that parent with dementia does not have to move from familiar surroundings (although they no longer know where the fridge is). However the other parent is very frail and almost bed bound, so I doubt the situation with one live-in carer would last for very long. It also would cost about £1,500 per week (because of dementia needs and immobility). There's not enough money in the bank / savings to cover that for a year.

I am also starting to look at care homes (and trying to find one near to us rather than a 2 hour drive away where parents live). Other siblings are a bit naive about how this might work, they imagine both parents would be cared for together. However they have very different care needs and it is proving very difficult to find one place that could manage both. And the costs are eye-watering!! But at least the house would be sold to pay for some of it, and the level of worry would be massively reduced.

Sorry, I haven't offered any constructive help. But you're not alone.

For social workers to help in my situation it took a major incident and me basically telling them
my sibling and I are doing absolutely no more caring. Even after that it dragged on about 11 more weeks and eventually my parent was sectioned.

I do so sympathise with the posters seeking a handhold. We know how you feel as we have recently been spared from further crises by DMIL passing away. It's not the happiest solution, but it was inevitable. I wish you well with finding good care solutions and wrangling your siblings into line.

This is way too much for any of you to do. They need to go in a home to receive that level of care. And you and your siblings are entitled to have a life free of caring for parents.

I have been the primary caretake for my mother since covid shutdown when I moved in with her because she had mild cognitive impairment and was having trouble with anxiety. The demands of my situation are not nearly as much as you're - my mom is 99 and still walks everyday and takes care of herself for the most part - I have to wash her hair and help her with dressing but what you and your husband have been doing for your mom is nothing short of heroic, albeit, it is also not ideal for your mom because she needs professional care. I have had the same problem getting caregivers, also because my mother is adamant against it. I was able to get help for her while I had my first trip for the past 3 years, even though before covid, I travelled several times a year for work. My siblings are also fairly useless - and my brother lives in the same house as my mother. The house is very large and for the past 20 years, he has gone 3-5 days without seeing her!!! Before I moved in, I would come three times a week and set up her food and meds, take her out, etc. He did nothing. He says he is too busy. This made me sick for years and there was not even a chance of a conversation about it because he is so not interested. ( She bought the house for him and babysat his children while he and his wife worked for years, and she's paid for taxes and house repairs over the years.) The reason I'm telling you my story is that I've learned from professionals and other carers, that this always happens in families - there is one sibling who takes on all the burden and the others disappear. ( My sisters live far away and although they make an effort, it is far below what they're capable of doing.) The reasons behind the siblings lack of responsibility can be described as personality issues, but the main reason for there behavior is that they simply are not capable. The reason we are capable is because of resilience. People who don't have resilience truly cannot care for the elderly, so even if your siblings forced themselves to get to your parents or make the calls, they would most likely screw up everything - they are simply not capable. But, as others have said, your parents are beyond your help - you could injure them and yourself. ( Statistically, family caregivers die before the elderly they are caring for because of the physical and emotional strain.) Try contacting a local church or community group to see if there is someone who would care for your parents over the holidays - many times there are people who are alone and would be happy to have a responsibility. Likely, you will need at least 2 people because one person cannot handle both your parents all day and night. Finally, the stubbornness is part of dementia. My mother has the same. They are not capable of deciding what's best for themselves. I know this sounds horrible, and you want your parents to have autonomy and freedom of choice, but the fact is that elderly people fall and die at home, or get UTI or pneumonia and die at home. Your mom will probably not be fully aware of being in a new place, your Dad would be better at home as long as he knows what's going on but that may not be possible without your mom. A good nursing staff knows how to handle their stubbornness. It is not an ideal solution - I hope my mother can stay at home until she dies, but I know that I can't sacrifice my health and life so she can stay at home. We all face end of life and I'm sure that if you're parents didn't have dementia, they would not want you to sacrifice your life and health. With dementia, they get very demanding, even my mother is demanding from me, when pre-dementia, she would never want me giving up anything to help her. This stage of life is so difficult, but you cannot solve this problem for your parents. They are at the end of life, and you have done more than you can because you are capable, but you and your parents, and husband don't want you to die taking care of them. Best of luck on the weekend.

I strongly suspect your siblings reluctance for a care home is fueled by seeing their inheritance eaten up in care home fees. Your father will have to accept the inevitable, he can't care for his wife, even if he is still able to look after himself for now. In regards to all the financial benefits they have had from your parents, I would be very unhappy, time to pass this to social services, you have already done more that they deserve by the sounds of it.

It's true that children are not mandated to care for elders. Also true that it's overwhelming at best. Perhaps, though, we all need to remember that unless they were hideous parents that it is a part of life and can be both rewarding and taxing but neglect of a parent is far worse than we hear about. In fact, elder abuse is a hidden epidemic. If your siblings received money, the least they could do is give you respite days to recharge. If you can't find a carer, try hiring a housekeeper so at least that part is taken care of. You can bill their estate for costs. Likewise, any outside work, deliveries, transportation and other tasks can be delighted if your parents can afford it. Conversely parents are not obligated to leave kids one penny. And this is especially true for kids who, as adults, come with entitlement issues, have behavioral issues or who are simply leeches taking but never reciprocating after being indulged. I've been where this poster is. It's very hard but speaks to your character. And it's a very good one.

delegated (not delighted)

What in the name of God wrong with some people

Saying that they're under no obligation to care about the parents is DISGUSTING AND UNCIVILIZED
I see why this world 🌎🌍 is going to hell when people say that they're under no moral obligation to care about their parents . God help us 🥺