Literally no one understands my reluctance to do personal care

I'd do it for my mum, absolutely. Hell would freeze over before I allowed my children to do it for me.

I understand. When my mam was doubly incontinent, there was no way I could have done her personal care. I just couldn’t.

Unfortunately if she retains mental capacity no-one can force her to accept care or enter residential facilities. In my experience the way cases like this end is with a bad fall or other accident and hospital admission, which in most cases forces the issue.

That was a line I never crossed with my parents, in laws, or aunts and uncles. Once you start, it never stops. Much better to be the brain behind all the scheduling needed to provide good personal care. And to continue to be the child/niece whatever. There is so much else needed besides that you can do.

My ex partner's grandfather refused any help from female carers, in the days when there were fewer male care assistants. His son and son-in-law had to help him shower and deal with accidents. So I suppose there are some men who have to step up.
What I don't get are the pps whose parents 'refuse to go into homes', insisting on staying in their own home while their offspring deal with the most intimate aspects of their care. Please don't be guilted like this. People live for years. It is an awful prospect which will destroy your own health and sanity, and spoil your memories of that person forever.

This mirrors my own experience. I have a physical disability and couldn’t cope with mum’s care on my own. We couldn’t afford to go completely private so a mix of private and LA care worked well for me, and I agree - there is a huge difference in the continuity and quality of care given. Mum was self funding for LA care and I funded the bits of private care I needed to be able to cope. The private carer was more or less the same person every day - the agency paid a lot of attention to continuity of care wherever possible - and she built up a rapport with mum, which was good all round.

The LA carers were different virtually every day, most of them were youngsters who really weren’t interested - clearly using the job as a stepping stone to get where they wanted to be, and I had to be on top of them to make sure they were following the care plan. Despite cutting every corner possible they were critical of the private care. As you say, probably sour grapes for the loss of business, but they failed to grasp that mum was on the maximum care package the LA would provide, so for me, the extra care provided was central to me keeping mum out of full time care for as long as possible.

But if you refuse to engage with this she will be forced to go into residential because she won’t be able to manage at home.

I got roped in, in place of dh.

I work in healthcare. You really aren't unusual OP, lots of family don't want to do personal care, and lots of patients don't want them to. And you absolutely shouldn't feel you should do it - it's a personal decision that shouldn't need justifying. When we are arranging discharges we talk to people about what they want, and make a plan accordingly.

Social work, who are usually trying to find the cheapest option do sometimes try to pressure families which I don't think is right. But once you have a package of care set up, there will be a care plan that includes personal care, and this is what the carers should stick to. If the carers aren't following the plan you will be paying a lot for, contact the agency every time, and consider changing agency.

A big issue is that when the time comes, many elderly people stubbornly refuse to leave their home - even if it’s quite clear they are long past being able to cope.

My mother is 82 and adamant that she will stay in her own home, which is all well and good for now as she is still mentally with it, with just some mobility issues, but if the time comes that she can’t look after herself, and carers aren’t sufficient what other choice is there? If someone is deemed to have capacity and decides point blank that they don’t want to go into a home, there’s not much the family can do.

I will add, my mother is extremely stubborn, demanding, and reluctant to pay for any kind of help. She would absolutely expect me to step in when the time comes and become a default carer, which will not be happening.

Thankfully we live somewhere with good publicly funded home care services but even that may not be enough in the next few years.

You can still ask the LA to do a care assessment. If she has eligible needs but not the funding they will do a financial assessment - care is means tested but not having funds is not a barrier to receiving it.

I don’t think there is any need for you to feel guilt at all. Having looked after my mum at home I completely agree with everything you’ve said here. Good professional carers can indeed maintain that detachment and professionalism without impacting the person receiving the care. That was something I found very difficult to do at the beginning with mum. You do get used to it, and my input was minimal as I had a mix of private and LA care - but I can well identify with posters who are saying that it’s different when it’s a parent. It definitely is.

Totally with you on this OP. We are almost at this point with my mother who has dementia.

I had to take her to the bathroom recently on a rare visit out because nobody else could or would (which completely throws her) and I will never do it again.

I had a toxic upbringing and feel no love or affection for her, which perhaps doesn’t help. I have no feeling that I want to care for her.

Unfortunately she doesn’t have the funds for the kind of residential care she probably needs.

You're definitely not unreasonable. It's a very personal thing and not even the same for every person/relationship.

I did some personal care for my dad over a year or so - we had carers twice daily but bowels and bladders don't have timers unfortunately! Obviously it's not something I'd have chosen but needs must, we had a good relationship and were both comfortable with me doing it.

My mum is 87 and although our relationship is fine and she's currently independent, I cannot begin to imagine doing the same for her and I really don't know why - the idea of makes me feel deeply uncomfortable.

Sorry OP, I’m new to the thread so just reading through your updates. It seems your mum has Alzheimer’s - is that correct ? My mum had vascular dementia and the carers used to try the same thing with me. She was doubly incontinent in the later stages and wore disposable pull up pads. On the occasions she was soiled/wet when the carers visited they would tell her she needed to shower. If she refused they would then try to clean her up with wet wipes in the bedroom. Same with getting washed in the morning. - if she refused out came the wet wipes.

The excuse was that if she refuses they can’t force her. I found this unacceptable and after it had happened a few times I mentioned it to the private carer. She contacted the care company to ask why they weren’t trained in how to coax a reluctant client into the shower or at least into the bathroom for proper clean up. It never happened again.

The biggest problem I found with LA care is that there was no continuity. There were different carers virtually every day and some of them were nothing more than young kids - many of them working their way through uni - who made it plain that they had no interest in the job and it was just a stepping stone to somewhere else. That’s why I get so annoyed with MN threads on unemployment or benefits when inevitably an expressed inability to find work is met with ‘well they could always do care work’. In my opinion the lack of importance attached to this kind of work is why the care sector is in such dire straits now.

I will add that when my mum's care needs became too much for her visiting carers, we moved her to residential care. My sister and I both work full time - and we can't afford not to - what else were we to do? Our priority has always been to keep her 1. safe and 2. comfortable. She no longer has any vestige of mental capacity. She simply is not safe if she is not with competent people who can look after her.

Our dad is also gradually losing capacity and barely able to look after himself adequately (but he is adamant that he does not want any support whatsoever, so we have trouble to come down the line without a doubt as his condition progresses).

The whole thing is an ongoing nightmare, quite frankly, and we have no idea when it will end.

The last thing anyone needs who is dealing with this, whatever stage their parents are at, is criticism or "advice" from people who think you are doing it wrong. There is no instruction manual for this. You have to do the best you can with the knowledge and resources you have.

Of course OP, nobody should have to do personal care if they don’t want to. I don’t know anybody who would want their children to do this for them. You are right that the expectations of men’s are different.

I am also 100% with you on this. Doing these things isn’t just distaste for bodily fluids, every action reminds us that our mum is on the way out. Sorry to be blunt but there’s a layer of pain which this sort of thing makes too real for many people to cope. Professionals can do care with professional detachment while still being warm and supportive but children providing this care is painful. I also feel huge guilt because I assume the world is judging me but there are plenty of people who feel like this. Those who manage to provide intimate care for their parent - well done, I salute you but I am not you. Removing myself from pain is what I need for self preservation. Allowing professionals to look after my mum is not neglect or unkind.

@Rosscameasdoody I’ll put it kindly - they seemed keen find fault [with private carer]

Well they would, it is lost business for the local agency. At least that was my assumption when this nonsense started after we moved to private carers. My response was very simple and direct - the quality of care provided by the agency directly caused a re-admittance to hospital and I would not be repeating that. My experience of private carers has been that they tend to be local, they do longer visits for the money, the continuity and quality of care was on a different level. The agency carers were constantly changing, quite a few had significant communication issues, timing of visits was utterly random and they failed to properly record changes which if alerted in a timely manner could have prevented a return to hospital in very poor state.

They blithered a bit but didn't raise the subject again. However we were funding which gave us choices. I'm aware most families are stuck with what the LA will provide.

It’s not weird at all. It makes perfect sense that you have clear boundaries with the things you’re happy to do, and that things that make you feel a bit ‘off brand’.

You do not have to put up with this. Stop facilitating your mother.

I live in a very expendive part of the country so would rapidly eat through her funds. In the town she is in she has local roots and friends. Ironically my bother and his wife would probably eagerly accommodate her in exchange for the proceeds from her house (whichbI would agree to with alacrity) but they live in France and she wouldn’t be allowed to live there for more than 90/180 Days.

I'm a bit weird when it comes to personal care ( dmum ) Washing her after an accident was ok , dealing with her stoma bag when she had to have it , again ok .
Washing feet / trying to cut nails , no . Cleaning false teeth , no .
Dealing with bed sheets after an accident , no .

OP I’ve been through exactly the same. But the questions they are asking, as you’ve related them here, are a matter of safeguarding. The carers will be working to a care plan and as such their duty to your mum and not you. It’s very difficult to get your head around and the questioning might sound intrusive but it’s part of what they do.

That said, they shouldn’t be questioning the need for care. If your mum has had a care assessment and been found to have eligible needs then that’s the end of it - that’s what they are there to do. The fact that you are present when they are attending to your mum is totally irrelevant and if there are any ‘lazy mare’ vibes that you can articulate I would be reporting it to the care company.

I have a physical disability so the need for carers was evident in my case, but I can imagine how frustrating it is for you to be judged like this when your difficulties may not be as evident. You don’t owe them an explanation. And similarly to yourself I had a mix of private and agency carers provided by the LA - mum was a self funder. I found that this caused problems with the agency carers - they knew a private carer was involved (she was excellent and went far and above what I expected of her) and - I’ll put it kindly - they seemed keen find fault !! As did the district nurses - they questioned the need for private care in addition to what the LA were providing without the slightest nod to my own difficulties and in the end I actually had a word with my GP who in turn had a word with the nursing manager and set them straight.

As with your own mum, mine was also desperate not to go into a home. I think my need to fulfil that wish for her was driven by the fact that I was disabled from birth and she was instrumental in enabling me to have as ‘normal’ and as equal opportunity a life as possible - a lot of the time to her own detriment. It seemed to me to be a good opportunity to pay something forward. But looking back I can now see that the concerns of some family and friends that I was setting myself on fire to keep my mum warm was a valid one. You need to make sure there’s a balance and the best way you can do that is set your boundaries and stick to them. Unless people are prepared to step in and help they really don’t have an opinion.

She might like to be in residential care near you so you can visit regularly.