Literally no one understands my reluctance to do personal care

I got roped in, in place of dh.

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.

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.

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.

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.

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.

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

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

Yes, in theory that’s what will happen.

The reality will probably be far more messy and difficult - I know from the experience with my father that getting a place in a nursing home takes time, and the in between time where her needs get more and more, but aren’t quite bad enough to need full time care is where you feel it.

I just know the guilt and expectation to step in will fall on me, a bit like the OP is saying about her situation. I suppose I’m just dreading what comes next.

And on top if that you get the shaming from people saying things like ‘oh I could never put my parent in a home blah blah’..

When my mum needed help to shower and I expressed that I would do this if I had to I was told by social care staff/social worker that it wasn't appropriate for me to do so. I don't think you should feel bad about feeling reluctant - it changes the relationship completely. My mum would have been mortified to have me helping wash her.

See this is something I don’t understand. I had the same experience when mum was admitted after a fall. There was an expectation that visiting relatives would help with personal care. Why ? Mum was on attendance allowance and after four weeks in hospital it was stopped - the reasoning is that while in hospital all your needs are being attended to so you don’t need AA to pay for care. You can’t have it both ways.

I totally understand OP. I did, when absolutely unavoidable, have to do it occasionally for DM when she was alive but I still have disbelief over the day DF insisted I do same for him a couple of years ago before he passed. It's too upsetting to go further into what happened that day but I had to pop in to say you are not BU at all.

So often (on here) i see poster’s parents saying they don’t need carers, or cleaners, or gardeners, etc, saying they can manage just fine.

But, they’re more than happy to let their daughter run around like a blue arsed fly to do all those things that they know full well they can’t do.
There’s selfish, and then there’s this attitude.

This is the crux of it isn’t it ? The key here is getting them to see that actually they aren’t managing at all if family have to help them. So difficult.

That road is long, and very bumpy. There’s a lot of heartache, too.
My fil has dementia, and i’ve seen the toll that it’s taken on my poor sil.
My mil is perfectly happy to just sub out all the very labour intensive work to her daughter.

Whenever my husband has offered to help with x, y, or z, his mum says ‘oh no, Sarah will do that’.
Without actually asking Sarah if she was able/willing to help. Sarah, by this point, was staring down the barrel of a nervous breakdown, bless her.

I told my husband that along with supporting his Dad, he has to also support Sarah, by not letting his Mum bully his sister into everything.
I said ‘tell your mum, you’ll do x, y, z, and leave Sarah out of it’.

Fil has recently been moved to a different home, for a couple of reasons, and (again!), my mil has just dumped all the responsibility onto Sarah. Including dealing with SS, the new home, the funding, and the physical move of getting fil to the new home.
Mil hasn’t so much as made a phone call to facilitate this.

Absolutely, and the key is also not to be bullied/guilted into doing it anyway, cos their parents are stubborn, and don’t want strangers in the house, blah, blah.

I've asked each private carer over the years why they went independent and without exception its because they want to build relationships with clients and provide continuity and quality of care. That was what I wanted too. It certainly wasn't for big money - most were earning pretty much the same as working for an agency overall. Several described being pushed by agencies to "trim" visits and the tasks whilst there and effectively to find fault if a private carer was on the pitch.

Its interesting that those who described sharp practice had worked with agencies where the owners were doing very nicely thank you with big LA contracts and little oversight of the day to day workers. Rather like those doing nicely out of children's homes whilst providing poor care for sky high prices. One left after multiple incidents with carers who could not communicate effectively in English failed to identify or report key problems - turned out they were also misreporting salaries (migrant staff actually earning less than their stated wages for visa purposes). And of course there are the agencies sponsoring visas for large numbers of workers who have employee numbers below ten. There is a streak of corrupt practice in this sector which sucks money and denudes care.

I suspect that improving pay and conditions and training for carers, making it a more recognised trade/profession and working hard to attract more local staff in each area could actually cut the care bill overall. Every readmittance or unnecessary illness amongst their clients costs us a lot of money.

This is where my family and I are now with our memories of our DF. So adamant was he that he would not go into care that our lives were practically unliveable, 2 jobs were at risk, relationships at breaking point, exhausted didn't even touch it and this was with him having a very full on care plan. He simply needed 24hr care and was repeatedly told he could not have what he really needed to be safe at home. Instead of being able to grieve properly I was left angry with him, because he preferred our lives and livelihoods went to pot instead.

I understand, OP. It is fine, even as a woman, to not want to do the lion's share of the caring. If your DM already lives with you, that's more than most people would do!

I had a much-loved relative who feigned being much better than they were in front of the carers... and would then be exhausted, ill and snappy for days afterwards. This was because it was the family's job to look after them (i.e. the women of the family)... but it's hard to do that for years on end on top of jobs, children, other things in life. I recently had a conversation with my mother about this time period and I said, "I just thought, 'I don't want this life'", and her response was, "I don't blame you". Thankfully, my not-quite-100YO GM (who also did the lion's share of caring for others) insists that her son shares the load of helping her with my mother.

There is still a long way to go in our society before people realise that women do not naturally want to look after everybody else before addressing their own wants and needs.

I think that most carers are on minimum wage or thereabouts and aren't doing your mums personal care because they like it. They've just learned to manage their reactions and overcome most people's natural aversions.
Their job is to help your loved ones with what they need and with care and dignity and they are likely doing it for about £12.75 an hour.

You obviously have every right to not want to do personal care on your own loved ones. Maybe just don't concern yourself with what you think the carers think of you. You don't know if they do think it and you can't stop people having opinions anyway.

I've done care work and I think that people not wanting to clean their family members is extremely common. To the extent I've known of husbands leaving their dying wife in mess overnight for the carers to do in the morning rather than clean her himself. Less common the other way round. That is a bit upsetting when it happens.

Adult children I've rarely known to do personal care on their parents or for it to be expected.
I don't know carers who would give that much thought tbh. Mostly adult children would not even be around while we were helping their loved one. They'd make themselves scarce or get on with other things

How does it come up that they make comments to you?

Are you hovering or trying to talk to them about it? Are you trying to get reassurance from them?

If you don't want to do it then don't do it.
If you feel a bit bad that you can't face any of the more intimate care, then just leave the carers to it and don't make a big thing about it. Some might briefly have an opinion on it, but I can assure you that most won't give it a second thought.

Honestly the amount of comments I get about how awful it must be to do personal care if ever I talk about being a carer, I think it actually makes me feel more degraded than actually just getting on and doing it.

My priority as a carer is the human being in front of me and that I'm doing for them what they would do for themselves if they could, and I'm trying to make sure they don't feel bad or ashamed about being in a vulnerable position that could happen to any of us.

I’m genuinely very sorry to hear that, @LilyBunch25

Particularly when your Dad must have seen the terrible toll it took on you and your brother?
His level of selfishness takes my breath away.

Personal care was the final boundary for me although my DM called me lazy and stupid for enforcing it. This is my lovely DM who had shown me nothing but love and support throughout my life but was so angry by this one boundary.

One of the most difficult times in my life was the day she pressed the emergency button at 5.00 am when she had fallen in her tiny ensuite toilet after slipping in diarrhoea. DH and I were unable to lift her so I called the ambulance and she stayed there for hours waiting for them to come. They actually had to pull her out because they could not get into position to lift her. They placed her on the bed and said that they could not examine her until I had washed her.

I was happy to clean the bathroom because I could imagine it was nothing to do with her but washing my poor naked mum, caked from head to toe in her own mess was traumatic.

Later that morning when the carer arrived she spoke to the surgery and on the GP's insistence she was admitted to hospital. That led to the assessment that sent her to the care home and personal care was no longer an issue for me.

Thank you. I still haven't come to terms with it, to be honest, and it's made grieving extremely difficult. To anyone in this situation I would say, keep all lines of communication open in your family, one other facet to what we dealt with was telling one one thing, the other something else and playing family members off against each other which could have caused lasting damage if we had not got wise to it. Maybe my case is extreme, but the desperation not to go into care can cause behaviour that you can't prepare for. My DF did not have dementia or any mental incapacity, either. It was quite literally a determination to stay put no matter the consequences to multiple others.

Elderly people’s understanding declines over time. He may have been a deeply selfish man, he may not have actually really understood what he was asking.
My father has dementia with very little insight into the amount of care that is being done for him or its cost, although he’s appreciative of what he can see.

In the circumstances you do have to manage the expectations of elderly people people and not just bend to their whims until you collapse.

When my father was more compos mentis I was very clear that that I would go on doing his care as long as as I possibly could, but when it came to the crunch, he may have to go into a care home when I couldn’t do the care that was required.

My aunt didn’t want to go into care, or rather she thought she didn’t. But once she did, she absolutely loved it. So so much of refusal is simply fear of the unknown.

Families really do need to have clear boundaries about this. It doesn’t make you a bad person to refuse unreasonable demands.

This is horrific / really feel for you to have to have that memory.😢😢