Literally no one understands my reluctance to do personal care

I can relate to this. My mum had dementia and by the time she needed my input with her care she wasn’t aware of what was happening. It made it easier somehow - for both of us.

No. Absolutely not. I was single minded about mums’ care and it was only after she passed away that I had the time to reflect.

OP I was lucky in the fact that when mum started to need care I was retired and and could give my time. I have a disability so I can’t imagine providing even minimal care and having to work too. Mum was a self funder and the LA care did what was necessary but I couldn’t have managed without private care in the mix too. You cannot - CANNOT - set yourself on fire to keep your mum warm. You do the best you can with what you have at the time, and you need to learn to shut out the detractors. Anyone who is not offering help is a hindrance.

I can relate to this too. I remember pouring my heart out the to the visiting dementia specialist about how difficult mum had become and how she would try to manipulate me with painful memories from childhood. He told me that dementia magnifies a person’s less attractive traits and brings them to the fore. It was the single most important piece of information I had for her ongoing care. It allowed me to rise above the horrible comments and the lashing out (both physical and mental) she did on a regular basis. I just told myself it wasn’t mum. It was the disease

It was probably the hardest thing I’ve ever done because your brain tells you that if it walks like a duck and quacks like a duck, it is a duck. The vitriol was coming from the mouth of someone I loved dearly and had always thought of as my mum, who had my best interests at heart. It takes every fibre of your being to realise that the person your mum truly is, is buried by this terrible disease. I’m so sorry. It’s so hard.

Interesting /sorry off topic but this is what worries me about if I develop dementia and say hurtful things to my own DC.
My OH lost his parents early, when he was 22 and 34. But in some ways I think he was spared seeing them decline. Hehas lovely memories of them.

I had to do it towards the end of my mother life on a few occasions and it was grim but there was nobody else there at those times. She was a fastidious woman who always looked immaculate and it was tough on us both.

This topic resonates with me. Our late mother started to decline, having falls, etc. My brother and I decided to get carers for her (3 x day). Organised through Social Services. After another fall, she was assessed as being unable to look after herself. Social worker asked us both if we could take care of her. Answer was no, we're not medically trained and our homes not suitable. She spent 10 months in a care home. We both found it difficult at first as we were handing her care to people we didn't know.

May seem hardhearted but no way could we have done the personal stuff, although one family member considered we should. We all react differently, sometimes through a sense of duty or being practical. It's difficult but don't jeopardize your own health "doing the right thing" .

I was a carer and did personal care all the time, and while I did help my mum when she was ill I refuse to clean my step dad, I love him very much and I’m all he has but I DO NOT want to see him naked at any point.

I'm disabled myself and need personal care for certain things and while my eldest son would help if needed in an emergency, my youngest always said absolutely not and I don’t have an issue with that at all.

you’re definitely allowed to say no and don’t let anyone bully into saying otherwise.

Yanbu at all, it can totally change the child/parent dynamic, you risk becoming more carer and less daughter, totally understandable that you wouldn't want to do it. When my Df was nursed at home in his final weeks we left the room when carers did personal care, to give him his dignity

Not a cat in hell's chance I'll be caring for either of my parents. They wouldn't have done it for their parents under any circumstances and I won't be doing it for them. I also won't be expecting my kids to do it for me. I think elderly people who won't go into care homes or refuse carers are selfish. I know I'll get roasted but that's how I feel. I think you're going above and beyond OP by having your mum live with you, I could never.

⬆️⬆️ this!

Personal care for your mum (and even worse for your dad) is very hard to do.

What are you paying them for? It's their job.

I couldn’t even bring myself to cut mum’s toenails. My sister did it but made it clear that was the extent she could do. Mum didn’t want us to do any personal care anyway and as it happens, she managed that side on her own until she died but I know, we would have had to arrange carers if she needed that kind of care as we both knew we wouldn’t be able to do it.
We did everything else - housework, shopping, doctors appointments etc
I do think I would be able to do it for my husband though 🤷‍♀️

And did that very generous (with your time) relative offer to care for your Mum, or were they just happy to polish their halo and criticise you??

I’ve just gone through this with my mum, and the carers and nurses told me that I was her daughter. Not her carer. I would have done anything for my parents, but not personal care.
Don’t be made to feel bad/guilty.

I think there's a huge difference between personal care like toileting needs and other types of support for someone you love. My late Mum had periods of illness from my childhood onwards and I was happy to cook, clean, and help her a little bit with bathing (she just needed an arm to lean on when getting in and out) and I washed her hair sometimes too. She would then improve and not need help for a while.

It's funny, because I didn't see myself as a carer when I did those things, she was my Mum and sometimes she need help. Perhaps if you've had unwell parents from a young age, you see things differently? I think toileting needs would have been too much though.

No, but sometimes mouth is opened without engaging brain first. Let's just say in their generation it was the done thing to care for elderly relatives to the end. Regardless of your own life. I remember someone saying during COVID that many women had given up having a life of their own to care for elderly/infirm parents. End result their health failed long before it should....

I would have done intimate personal care for my late mum if I had had to, but I would have been horrified. I loved and adored her but I was so guilt ridden because I saw other daughters coping stoically and I knew I wouldn't be able to. Similarly, if the time comes I would let a stranger off the street help me before friends or family.

I feel exactly the same as you OP and I've had the dirty looks and nasty comments before too. Just because we're women 😕.
I was more than happy to pay a carer and my mother totally understood, in fact admitted that she wouldn't have wanted to do this for someone else.

I completely understand your reluctance to do personal care and it absolutely shouldn’t be forced upon you. However if your mums care needs are such that her carers visits are not adequately able to manage her personal care then her living with you isn’t sustainable. If she’s double incontinent and unable to manage that herself it is unacceptable that she remains soiled for hours until her next carer visits for example. If the situation is like this then 24 hour care in a care home would be more suitable.

100% behind you on this! I’m not quite there yet with my Mum but I’ve already informed her that I’m more than happy to help her with finance, cleaning, household issues, shopping etc BUT I will not deal with her personal care. Had to do it once with my MIL…scarred me for life and is a memory I wish I never had of her.

Like a lot of people here, I would have been horrified at the idea of providing personal care for my parents. But sometimes things happen and you end up in that situation and what are you supposed to do, leave them to fester? My dad had dementia and Parkinson's, and my mum and I were caring for him but he was still able to use the toilet and wash himself. He got an infection and over 48 hours lost all mobility in his arms, to the point he couldn't feed or dress himself or hold anything, not even a teaspoon.

Suddenly we found ourselves having to care for him in the most intimate ways. This all came on so suddenly, we had no carers at that point, and desperately tried to get something sorted. Couldn't get anything with the NHS/council as self-funders, and all the agencies we contacted couldn't get anyone suitable with us for weeks, it was three weeks before they could even come round and do an initial assessment. In the end it was six months we ended up doing this for, because even when we eventually got some help they only came certain times a day and not overnight, which we couldn't afford. I spent every night for months sleeping with one eye open listening to my dad stir, knowing that if I didn't get in the room within 2 minutes, he'd fall out of bed and wet himself.

Sorry if this is TMI but it's the reality: I had to accompany him to the toilet multiple times a night, pull down his pyjama bottoms with one hand while holding him up with the other, grab a urine bottle or plastic jug and place it under his genitals as quick as I could before it went everywhere, which it often did, so I'd clean all that up too. He also had terrible constipation so my mum had to insert his pessaries. Even though he had dementia he still knew some of what was happening. He would sometimes cry and say he felt 'so degraded'. It was the worst time of my life. But we were left with no choice, we tried to get immediate care but we couldn't. So I think it's very easy to say you'd never do this (that's certainly what I thought) but if you find yourself in that situation you just cope. However, it probably helped that I loved my dad and we were close.

My one bit of advice that I tell all my friends now who are going through similar: if you think you will need a carer later down the line, don't wait. My parents insisted on no carers and to be fair, they were just about coping until my dad's swift decline, but when it's an emergency and you don't have anything in place, it's a nightmare. Get it set up before you think you need it.

I've not read anything beyond the first post, as I didn't want to be influenced by the opinions of others.

I'm saying this as a 59 year old woman who started care work at the age of 17. I have work in care, mainly for the elderly for a large portion of my life. I loved the job. Absolutely, whole heartedly adored it!

However, I would NEVER, want to do personal care for my own mother! She is my mum, that's our relationship. I'm her daughter.

I totally understand you not wanting to do this unless you have to. Stick to it. Obviously unless stinking to it means she is neglected, then it's different.

I remember being at work on a night shift and a lovely new resident had her son and daughter in law visiting. The DIL asked how "Mum" was a night. I said "Oh she's not too bad, she wakes at around 1-2am and around 4am and I pop her to the toilet, remind her it's night time and tuck her in again and she goes back to sleep".

The DIL was sooo upset saying "How come you can cope and I couldnt".

I reminded her that I did my 11 hour night shift, then got to go home, do the morning school run, then sleep, totally undisturbed for a number of hours. She got to wake in the night, settle her MIL back, THEN deal with her all day. Very different to deal with! Much harder for her than for me. Don't lose sight of this.

As a side point you should be able to get some advice from the local NHS Continence Service and/or local dementia nurses re how to maintain her continence for as long as possible (may involve things like a red toilet seat / open bathroom doors (so she can see the toilet)/ dementia friendly signs on the door / easy to adjust clothing) and advice on how to contain the mess if/when it's needed (replacing carpets with easier to clean floors, waterproof pads for seats, waterproof bed sheets, pads to insert in standard pants / disposable pants etc)