Literally no one understands my reluctance to do personal care

When my mum was in hospital she needed personal care I was clear with staff my mum would have been mortified at me doing it so I wouldn’t be.

I could write a long post about my experience with Mum but in a nutshell I am with you on this. Mum’s carers would come in look at her and say ah she is asleep leave her. So I did some however they were supposed to do it as part of their job. Sadly it was only for a few weeks as she died but she didn’t want us to do it either.

I completely understand your perspective. I feel the same way. My mum wouldn’t want me to do her personal care either.

I refused, you are right no one thinks male relatives should get involved-m if you are paying for carers where is the problem, why would you pay them and do the work yourself?

At the end with my DF, I had no choice but to wipe his bum and clean up when he wet the floor. He was toileting multiple times a day. We had carers in 4 times a day, but he needed care between, and refused a home. It was awful and I became resentful. It was like having a baby, in one end and out the other. Not a way I want to remember him.

Im sure many people will understand you feelings ,some won't, thats OK because people are different in their capacity to cope with such personal matters.
The crux of this seems to be how you feel about doing intimate care for your DM in that you find it really difficult and uncomfortable ,although you do it if theres no alternative and the carers comments to you that make you feel pressured and uncomfortable.
Im wondering also,how your DM feels about this, who does she prefer to have intimate care from?
I cared for my father and husband when they were dying (they preferred care from me and although difficult it was my privilege to care for them.
My mother preferred professional care and i was relieved (like you i did help when no alternative)
If i need care i would prefer professional care too and wouldn't want my DD or DS to do my intimate care if at all possible. For full disclosure ,im a trained nurse. Ive had people say to me,please dont let my son or daughter or partner see me in mess and those who said id prefer my relative to do my care rather than a professional for a variety of valid reasons.
What i am saying is people both doing the care and being cared for have different feelings for complex reasons and thats ok.
Could you have a conversation with the carers perhaps explaining how difficult you find the intimate care and perhaps explaining your DM preferences.
I can see you care for your DM and you have additional health issues that affect your practical ability and psychological affects too. Tbh you sound burnt out.
I hope you can get the support you DM needs and stop feeling guilty.

It seems that the problem that these people are not capable of living independently and should be in residential care. Would be vastly more efficient to have careers in situ rather than the time wasted travelling between houses.
They do not have ‘capacity’ if they don’t have the capacity to do personal care for themselves.
My mother is now 85- does live by herself and fully capable of looking after herself. I live 2 hours away (so four hours round trip) and visit weekly but no more than that. She has hinted about moving near to me (pointless as she would beaway from her friends and hobbies (and gentleman friends who lives opposite😃)
In theory I could accommodate her in my house but don’t want to as would definitely end up in the impossible situation the OP and others have described. I intend to live a really full and busy life for the remaining time I have and not be guilted into being s carer.
My mother could sell her house and move into residential care when she needs it.

I understand your response and position but I guess it doesn’t strictly help me understand why those that love their parents don’t feel obligated to do it out of love, on the basis that you don’t love yours.

I’m not critiquing those that don’t as as I said I can’t imagine ever having to do it, but similarly can’t imagine I’d ever find a way to rationalise not doing it for someone I love. So the lesser of two evils in some way.

I hope you find a way forward with your parents

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

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.

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 .

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.

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

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’.

@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.

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.

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 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.

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.

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.

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.

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.

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.

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.

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.