Visiting mum - just a duty

[Florentines]

Not seeking advice or anything really but I realised today that it's been so long since I got any enjoyment at all from seeing my mum. She has carers so I'm very lucky that I don't have to do the everyday care. But even with that, every visit involves medical stuff (appointments, calls, discussions that she doesn't understand but that I feel I have to have with her), or household stuff, or sorting out bills or whatever things she's got wrong. She's had dementia for years but won't accept it and so I have to pretend she's fine and leave her 'jobs' to do otherwise she gets upset. Then the 'jobs' all have to be re-done. Having a conversation is exhausting as I have to guess half the time what she's trying to say. I have to be cheerful otherwise she acts like a martyr about what a 'nuisance' she is. It's like having a young child but without any of the good moments. I can't now remember the last time I came away from a visit or phonecall having enjoyed it. Years I think.
I've done everything I can in terms of keeping her life as pleasant and normal as possible and there are no solutions to any of this. But I'm just so sad and tired and the reality is that I will be relieved when she dies. She has literally become a job I have to do. It's a crap life for her and a crap life for me.

I think the emotional problem with doing your duty is that it brings home what you're not doing, which is feeling love and kind of showering that person with love. I cry for my mum because it's unbearable to know that I don't love her as I wish I could. It's horrible of me and it's cruel of fate and I wish I was a different person because even though when she dies I will be glad to have tried my best, there's something so hard hearted about 'duty' and really my best is not good enough.

@Florentines I'm used to helping/contributing on threads where people are at an earlier stage of dealing with dementia. So I assumed that's where you were.

We just all do our best by our loved ones. Try and take some solace from that

I’m blown away by the raw honesty on this thread. Thank you to everyone. I’ve had different parent stuff to deal with over the last 6 months, and reading this has sort of helped with some of that.

You sound like an awesome daughter, OP.

Mean, thank you. Made me cry. Again. I'm honestly so hard and bitter and sick of it.
Thank goodness something went wrong and my last post didn't upload. Possibly too raw and too honest.
I won't bother putting it up again but it was just about the constant 'need' to do stuff and buy stuff and make stuff 'accessible'. And mum hates everything that is bought and everything that is done. Except I have to buy and do all this stuff because otherwise her home isn't 'safe' and she would have to go into a care home. So she's desperate to stay at home but hates me for everything I do to keep her there.

My mam would punch me, slap me, throw things at me, pull my hair, swear at me, accuse me of having sex with my dad and even tried to grab me between my legs. She said she wished she had the strength to kick me in my face. It was horrible and I ended up retaliating and hitting her back. She had to go into a care home after that. But it wasn't any better because she'd cry all the time during my visits and beg me to take her home. So on top of the abuse I had the rotten sense of guilt. She's dead now but I still have days when I think I didn't do enough.

Sorry to hijack but I think I'll be you OP in maybe a years time. And I'm terrified. I'm sorry you are going through this and that it's been for so long.
You sound like you really care and that you are doing the best for your mum.
My mum is at the stage where her dementia is getting obvious but she refuses to see a doctor about it and gets angry when we suggest it.
Sometimes having a conversation with her is so exhausting and the idea of supporting her for the next ten years is so scary for me.
I think you are doing a great job and it's healthy to offload from time to time.
Sending you

I take no pleasure in doing my “duty” and would hate to think my DCs ever felt they had to do the same for me. It’s a horrible word weighted with false expectations of saintly devotion and guilt at not being able to achieve it all with a beatific smile on your faces. Duty means really fuck all when you are being spat at, called a “cunt”, threatened with the police because you have been accused of stealing a CD. And as for not thinking about the person they used to be, we are GRIEVING for the person they used to be and we are constantly reminded of that person because their body is still there, albeit with a stranger living inside it.

OP, I wonder if it is time to step back a bit? To either arrange a residential care home for your mother, or leave her in her own home with professional carers, who will not find it so emotionally draining and upsetting as you naturally do?
Does she even remember that you have visited? Would she notice if you didn’t, or came less often?
Do you have medical POA? Could you discuss with her GP stopping active treatment and simply aiming to keep her comfortable, rather than stressing her with appointments and medication changes?
At the least, I think you need to step back emotionally. Remember your DM as she used to be, and think of this current version of her as a patient needing some care input, but without engaging your feelings too much and upsetting yourself.

Babdoc. Thank you. Under different user names I've given very much that advice to people over the years and I've done everything: she has full time care and her dementia is a slow moving one so she remembers visits still. It's not at the level some other PPs have had to deal with. I really can't step back any more than I have. I tried to set things up so that all 'care' was paid for and I would just be a daughter, friend, companion. But it doesn't work out like that.
Sinister, I feel your anger. Over the course of the evening, I've moved from feeling miserable to angry and just waiting for the dread that will come with waking tomorrow morning when I have to start all over again.
Wallowing a bit really.
But so grateful to everyone for opening up with your own stories. I hope it's helping a bit just to vent and maybe say the unsayable.

kennel and other PPs. You've gone through way more than I'm having to. So sorry.

Would you consider a nursing home?

My grandmother spent the last 3 years of her life in one and while she was reluctant at first she did settle in and experience a much better quality of life than she had at home with my grandad. It meant my mum could visit and chat/do puzzles/go for a walk without having to worry about caring duties. It also meant when things progressed she was somewhere with instant access to medical professionals and with a team who knew what to expect and how long she had.

Meant to say, I'm so sorry you're going through this. I saw what it did to my mum and it's awful.

@Florentines one thing stood out to me from your post - the medical visits.

I spend a good deal of my working life telling people they don't have to go to medical appointments if they don't want to, and discussing with families of patients of dementia that they could cut down on all the appointments.

A vicious circle sometimes builds up where a well meaning doctor makes a referral, or something goes wrong and you get referred, and before you know it you are under 5 departments, 20 medications and this is all life is about.

From what you are saying your mum doesn't have capacity to make decisons about her health and it is all falling on you.

I'd suggest a chat with her GP would be useful to decide what is the aim of her care, what are all these different appointments and services for and which ones frankly are just upsetting and pointless.

Thank you again.
Anna you're right about the medical visits. Again they're cut down to a minimum but because she has live in care, the agency is duty bound to 'review' and eventually I gave in and that's led to the current couple of months of stress. Hopefully it will settle down. I think yesterday I couldn't see the wood for the trees. But years ago I did allow her the freedom to refuse medical care. I tried to get home visits but no one would because she wouldn't consent. She lied so much no one, even me, knew how badly she was coping and she ended up in hospital on the vulnerable persons register. It was awful and it felt like everyone blamed me when I'd been beside myself trying to get help from the GP, the community nurses, social care, Age Concern. And health PAs are really quite difficult to use as it turns out. There is a very low level of 'capacity' which doctors accept and they considered she had it.
It would be a lot easier if she was in a care home but she would be devastated and because we are so lucky to be able to afford live in care, I feel that's what I have to do. God what a misery I am. I'm sorry. And actually I do realise that some are probably reading this thinking I'm complaining about my diamond shoes being too tight. With being able to afford live-in care. I don't know. It just seems endless and I've done literally everything, including doing nothing. And nothing works. No one's happy. Well I guess shes content enough in her own way. But the cost of that feels too high and I'll probably be in my 60s by the time she dies and my daughter will have left home and I'll have spent too much of her childhood being miserable and exhausted and broken.

And thank you everyone for the space to vent. I know there is no 'solution' . Perhaps that's one of the things which makes dementia so difficult. So sorry for everything everyone else has gone through or is going through.

I understand not wanting to use a nursing hone when you can afford the home care. My grandparents could have afforded it too, and grandad was very reluctant to move her because he knew it's not what she would have wanted. My mum convinced him and they both got a bit of freedom from the relentlessness of dementia.

We told her she was going there while she got better (she had a hospital stay leading up to it) and for a few weeks she would always be sitting with a bag packed asking to go home, but eventually it became her familiar and she didn't ask about hole any more.

It's not a decision you have to make immediately, I just wanted to share our experience as I know how daunting the decision is.

Thank you. It would be lovely for me. I've got brochures and I look at them wistfully.
I think what this thread shows is that we are not alone and there is no right or wrong.

This must be so hard and you sound like a great daughter. Is there anywhere you could go - a cafe or somewhere for a walk - that would might work as a circult break before you head home.

It's made me think about Care Homes - they are obliged to care (inspected very regularly) which is fine. But it means residents sit about for ever and a day, lose muscle tone, which can lead to aches and pains, and eventually slowly fade away.
They can't do anything with the patients or allow the patients any freedom in case the patient has a fall or something which would result in them being sued or similar.
So the residents live on and on with this empty life. Ditto if carers do everything for them in their homes.
Is it the best option - perhaps the elderly people should be allowed some freedom, and if it results in a fall that hastens their death it's a risk worth taking. It's a more normal life.

@Quincie this wasn't our experience at all. The care home did lots of things with the residents. They had crafts/singers/dances/walks round the garden/parties for special events (they even made my grandparents an anniversary romantic meal). This was all pre Covid of course.

I think you do have to choose carefully though.

Quincie That's so true. We have no idea as a society of what we're trying to achieve. Touched on upthread too. It's as if longevity is always the best thing. My mum would have died years ago if I hadn't been constantly looking in on her...as you say, falls (and of course refusing to use a fall alarm). The last time it happened I did have a moment when I wondered whether to go round because I knew what I'd find. If I'd left it another 5 or 6 hours she would most likely have died. Just a momentary thought which you then dismiss as evil and monstrous.

notanaturalmum
Advice is always pointless really because everyone's so different but I would say that ideally you should keep pressing for her to accept help. You can't keep quality of life going forever unless you're really lucky and have a sudden death in your sleep or whatever. But I'm still sure that if mum had accepted help before it was forced on her she would have had another couple of years of being OK and being able to have a bit of life. As it is, she basically made everything worse.

Good luck with it and I really hope it goes better for you than it has for me.

My heart goes out to all struggling with this no-win situation. Just wanted to say thank you for your honesty and give you some recognition for what you do for your families, to bear this and to keep showing up, despite all the urges to run the other way. That is love. Ok, so love right now doesn't look like it does in the good times, hugs and laughter, it's the way love looks in the hard times, graft and thankless giving. I see you, over there doing that, and wish to cheer you on though it would be better if I could gift you taking some of the strain just for once instead. My offering is humble, and a crumb of what you really need and deserve. Thank you though, for this reminder because I'm not in this boat but I am trying to do what I can to support 2 friends in this situation, one early days and one further on and this thread prompted me to send them some support.
For those in this and those supporting, let's not stay silent let's bring people along with us, for understanding is what it takes to get us through sanity intact in all tough times.

Hope that didn't sound too sanctimonious, was intended as supportive. 😬