Literally no one understands my reluctance to do personal care

[bringincrazyback]

I just want to put that there for now, really, because this board has been just about the only place where people haven't made me feel like a strange/cruel person for saying that emergencies aside I want my DM's carers to handle her personal care (she lives with me) and I can only really get involved if it's needed at times outside of carer visits. Just been through it yet again with one of the carers this afternoon, and yet again I've been met with looks of incomprehension. It makes me feel so annoyed (especially as this never happens to men) but also ashamed that this is how petty and grudging I seem to be over some things. But feeling ashamed doesn't change the way I feel, unfortunately.

Is it reasonable for me to have this boundary (taking into account that I'd never leave my mum without personal care if she needed it), or do I just need to get over myself as a lot of people seem to think?

Sorry, just a quick vent for now as I need to see to DM now the carer's gone, but just needed to put this somewhere, just as a request for some empathy I guess, as I know some on here do understand it. (The only person who understands is DH, but of course if this ever happens to him with his mum he'll never be expected to do it anyway, being a man!) I'll add context later. Thanks for reading.

Can you pop out when the carers are there?

I'm sure that OP makes compromises every day as she has taken her mother in to live in her home. She is also paying for carers to provide intimate care for her mum. I don't judge anyone who doesn't want to deal with toileting and cleaning up their elderly parents.f

I certainly judge you for the personal attack on OP. Calling her a selfish cow is definitely against Mumsnet's posting guidelines.

I did it, including catheter care. It really wasn't too bad, you get used to it. I lived with my parent though and we were very close. I don't think less of people who can't or won't do it though. I totally understand why they make that choice.

It does shift your relationship a bit though. I was pleased to return to 'just' being a daughter when my parent had to move into a nursing home though.

I really miss them now they are no longer here. Whatever you decide to do, make the most of the time you have with them.

It’s because you’re a woman. How many men would be expected to do their father’s personal care ?!

Carers provide personal care, where this is provided for by the local authority it is what the LA pays them to do. When private carers are employed they are likewise paid to provide this. The elderly person’s needs are met. Caring children like the OP have ensured that care is in place they cannot be there 24/7 have ensured that their parent has support, when they are there they provide emotional support as the personal care is already provided. Organising care is a nightmare and I think the OP is doing a great job.

I'm sorry for your loss but until you experience the whole package of physical and emotional drain you absolutely don't know what caring for an elderly parent is like.
No-one should have to feel any obligation because of love or guilt or whatever else to do it.
it is completely unreasonable to be expected to sacrifice your own life and needs to provide care that can go on for years.
the care I provide for my mother will not include personal care and neither will I ever want or expect the same from my own kids should I need it.

They're paid carers, right? You don't need them to "understand", any more than you would need a paid gardener to understand why you're not doing your own gardening. Act like you don't notice the looks, tell them in a brisk and factual way that you're not going to do that, and leave them to it.

I worked in a nursing home and know the process. You get used to it but it is totally different with someone you know. Surely anyone can understand that?! I guess the confusing thing is she lives with you and needs that level of care.

I imagine the op has to compromise an awful lot having her mother living with her.
we are all made differently and some of us just can't give personal care to another adult , parent or not and shouldn't have to defend themselves about it.

Yeah that sounds more like skiving frankly.

You have one good self employed carer - can she recommend another from her local network? My experience also was that-self employed independents were much better and more reliable than agency carers whose quality varied wildly. I've never had an independent carer challenge my requirements or expect the nearest female relative to do their job for them. Good carers will often make suggestions but not guilt trip the women in the family to do key aspects of their job.

Speak to the agency and point out you are paying them for a service and their carers seem reluctant to provide that service. Look at other agencies as well.

You do not have to justify a carer just because you are in the house. Most adults in this situation do prefer a professional for the more intimate aspects of care.

As for "you changed a baby's nappy" nonsense. If people really cannot differentiate between changing the nappy of a wanted child in happy anticipation of them growing up and doing the same for an ageing parent as part of their dying process then I can only assume they are particularly stupid.

I did 3 1/2 years of caring for my father including at times personal care. It nearly killed me.
He had carers booked but they didn't turn up until late (11am for a breakfast call) and I found out those with resident family get pushed to the back). It is the most difficult job I've ever done. I nursed my mother through bowel cancer (with stoma) and I would never want to do it again.

My husband nursed me through series illness last year and it included at times personal care. He insisted along with my adult children.
My DH has had some medical training ,ditto my DD.

Personally I think if you have the money for carers you should hire them. People who gilt trip their family are being unreasonable.
Good luck OP

My in-laws always said the line for them was personal care. For them and for their children caring for them. Terribly sad as one of them has now gone into a home. It was something they spoke about long before it would need to be considered. They are respecting their own wishes.

When I was 19 I suffered from a medical episode, it meant I needed additional personal care while recovering- my own Mum was amazing but it made me always say if it happened again when older I’m not so sure I would want a family memeber to need to care for me in that way.

There is no way I would do personal care for either of my parents. They don't require assistance now, they are in their late eighties, but I do worry about what may happen in the future.

OP ignore the naysayers, and the sanctimonious martyrs. This is not an uncommon feeling, and as you said, men wouldn’t even be asked about this.

You know what you are able for and where your boundaries lie, and I also feel like you do when it cones to my mother.

I did help to care for my father when he had dementia, and it nearly broke me, and did have to help clean him up a few times after accidents, which thankfully were rare.

Eventually he went into a nursing home, and the carer told me one day they would find it hard to do care (toileting, washing etc.) for their own parent - she said it’s so different at work because they’re trained for it, paid to do it, and not emotionally involved with the person, so can leave it behind at the end of the day.

I have a very different relationship with my mother, as she is a totally different personality, very demanding and difficult. She is currently at home and has carers in twice a day. So far she is still continent, but a few months ago she had a bad UTI and a few accidents, so I helped out with that, and I was surprised at how hard I found it.

At the time I felt you do, and I don’t think she understood how difficult it was to step into that role with her. I don’t want to bathe and dress her, I want to be her daughter.
Maybe it’s because we have a difficult relationship at the best of times, I don’t know. But I will be putting boundaries in place for the future.

I just wanted you to know you are not alone in feeling like this.

Totally with you here. I am a registered nurse and cared for both of my parents through terminal illness at home, did no personal care at all and my parents wouldn't have wanted me too, they would have been mortified.

I would point blank refuse to do it. Firstly, paid carers are there to do personal care. Secondly, both my parents have made explicitly clear that they do not WANT me to do personal care for them (my dad has a terminal illness so despite only being in their late fifties/early sixties sadly we have discussed wishes at length), and they feel very very strongly about that.

In an emergency, of course I would rather than leave either of them soiled, but it is against their wishes and I will respect that. We’d like to preserve our relationship dynamic as long as possible. My parents are lucky enough to be well off and can pay for any care they may need so this is something that we are privileged enough to be able to do.

Full respect to any full time carers out there, I cannot imagine the mental and physical toll.

I'm totally with you OP.

People like a certain poster trying to make out that we should do it "Out of love" have obviously had different childhoods to some of us.

My mother never showed my sister and me much love. Frankly I don't know why she had kids. We didn't love her and certainly wouldn't have done any personal care for her.

You reap what you sow.

Sympathies op. So many women put in the position of having to provide personal care. I was a nurse, have changed nappies and loved my Mum dearly. But I really struggled doing personal care for her in her final months. There is no comparison between caring for infants or strangers and caring for a parent. Some people show empathy while others literally do need to "walk a mile in another (wo)man's moccasins" before they understand fully.xx

I had to do this for my mum a few times…..she had a care package but on occasion had little accidents and I wasn’t leaving her soiled or wet until the next carer came. After the very first time of changing her she looked at me and gently said ‘this isn’t your job but thank you and I’m sorry ‘ and then burst into tears. I cried too. Giving personal care to a relative is poles apart from caring for a client on a work rota and I have done plenty of the latter. At least with a virtual stranger the client does retain a fraction of dignity 💐

You should not feel guilty about this. I am elderly and would absolutely not want my family to provide personal care.

Full sympathy I was mocked by sil for not wanting to help mil get dressed for bed, I honestly found it so very hard, mil would not allow dh in the room, I felt I was being unreasonable saying no. In the end I avoided visiting. My mum used to wait till I arrived in the care home to ask if I could help her with the loo - I used to ask one of the carers to come and help - my mum said I was no daughter of hers. I just can’t.

There’s no compromise to be had here, if the OP is ultimately guilted into providing personal care; even if it takes the long way round to reach that point.

Th OP matters too. She shouldn’t have to sacrifice her quality of life for her mum, and her mum is incredibly selfish to still make her daughter do it, knowing full well that her daughter doesn’t want to.
Bless the OP, the discomfort must be etched on her face, when she does these jobs, but still puts on a brave face and does it anyway.

Did your sil also help your mil get ready for bed?
And did you get roped into it, as your husband’s proxy, since he wasn’t allowed in the room?

OP I was in this situation with mum - she passed away in March. She was very dependent on care at the end (vascular dementia) and it was becoming increasingly difficult so I understand where you’re coming from.

Can I ask how old your mum is and specifically what type of personal care you’re talking about ? Given that she has carers I would assume washing/bathing is taken care of daily and that toileting is attended to on each visit.

Mum had accidents and needed changing and washing in between carer visits which was unavoidable. I have to say I found it very difficult at first, because, as you say, she was a parent, and it’s definitely different. But you do get used to it and in the end I managed to do it without thinking because it’s a necessary part of care - you can’t leave someone in need until the next care visit.

This is the part of your post I’m having trouble with - But, obviously, these things are likely to come up in the future. What I was trying to convey was that I am here to do what's needed in the absence of the carers, and will do what is needed, but that not wanting to commit to being the default person to do my mother's personal care is my boundary. Surely my post explained it clearly enough?

To my mind if you have taken on the responsibility of looking after your mum in your own home, then you are the default carer. The care package she has is designed to take some of the pressure off you - it’s not there to absolve you of all responsibility. If I’m reading it right then the carers are asking you to take part in her care while they’re there. That’s not on and you need to set a firm boundary - with the care agency if it’s an ongoing problem - that you expect them to take full responsibility while they are there, regardless of your presence.

However - and before I get jumped on, this is just a question and absolutely not an accusation - at any point have they arrived and found your mum has been left in a mess for them to deal with ? Because equally that’s not on either and I would expect them to report that back to the agency as it suggests neglect. I only ask because you said in your OP Just been through it yet again with one of the carers this afternoon, and yet again I've been met with looks of incomprehension but you don’t specify what exactly it was that you went through with them. If they’re happy with the care you’re giving in between visits, what exactly is it that they’re expecting from you ?

From experience, as things deteriorate care plans have to be adjusted along with the number and types of visits, and at some point, if you really don’t want to be the ‘default’ carer, full time residential care will need to be considered. Obviously I don’t know your circumstances as regards funding but it does sound as though it will be necessary at some point because unfortunately the nature of this is that things will get worse, not better. I’m so sorry you’re having to deal with this, and kudos to you for opting to look after your mum at home - a very difficult choice.

No it shouldn’t