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.

Well done on getting the day done. It's been therapeutic to hear other people are going through it too isn't it.

Thank you. 'getting it done' is exactly it. Yes it is therapeutic and I'm so glad that although I've been a complete misery it seems to have been therapeutic for others too. I'm going to disappear into a glass of wine and try to pretend it's not happening.
Thank you again so much to every PP who has shared their own story or offered kindness and support.

I just want to reach out and offer some support. My situation is so similar, both parents at home with different dementia and demands. They're both only in their early seventies, but my God I'm emotionally and physically drained and know I have years and years of it.

I have such a resentment to my dad, he was always selfish, but his dementia means he lacks empathy, particularly to my mother and he is so lazy and demanding. I also feel sick leading to the days I see him. I feel like I've lost my free will, I don't want to be in his company, but now I'm caring for him when he did so little to care for me. I'll never ever do this to my kids.

I hear all of you.
I told my mum (80, not dementia, alcoholic mental illness and increasing numbers of hospitalisations) that I wouldn't be her carer any more today.

It's not that I don't love her. But the more casual care I undertake, the more I "just take her bin out" and "just change her bed" and "just have a look at her washing machine", the more I mask that she is actually not able to cope at home. She can't do those things any more.

She says she's ashamed to ask for the help and that makes me so sad.

OP, I am so glad that today wasn't as awful as expected and that you can enjoy the next 2days.
I wanted to ask about your relationship with your mum before she became unwell; the reason I ask is because what do you think your mum would say if she really knew the way you are feeling and all that you are doing?

What would you want your daughter to do if you ever became unwell to the extent that your mum is?
The fact that it's eating into every area of your life and making you unwell is not something that any mother would want for their child.

You are lucky to be in a position to afford live in care so there is absolutely no need not to take full advantage of that, you're not helping anyone else by not utilising this option fully.
I hope you will reconsider moving your mum into residential home or at least reducing your visits even if only for a while.
As horrible as it probably sounds you have to put your needs first now, especially because of what you are showing your own daughter.

Very sad to say it but your mum now is not the mum you knew and I just can't believe she would want this for you if she truly knew what was happening.

Nestlyn
escape, invent an illness, anything, dont just submit to this awful fate!

@Florentines

Realistic It was a beautiful post. Thank you. A friend of mine randomly sent me flowers a few months back to say that she thought I was doing a great job. It was so mind-blowingly touching. You sound like a great friend.

That's so lovely, what a great friend. And thanks.

dear Florentines, i understand the kind of situation that you are in.
and looking back on it, i wish i had done some things differently.
i well recognise the trying to explain things, and it becoming a pointless argument.
and i found dealing with the various agencies who are meant to help just as draining, as they are meant to be working together for the good of the client, they are professionals, and don't have dementia.
they almost drove me round the bend at times.
in the old days, when respite vouchers existed, one social worker said he wanted me to consider them. i was run ragged, and yet the possibility of some respite had not been shared with me.
so i told him, politely, clearly, that i did not need to think about respite vouchers, please would he send me some.
his response was that he'd really like me to think about them.
and he represented me back at HQ as being un-cooperative.
it was like some kind of unfunny farce.

if i may suggest to you OP, could you try not discussing appts etc with your mum. you will still have to deal with them, but just as you would not discuss in detail the medical facts with a 3 year old.
no disrespect, but this is an error i made for too long.
in trying to keep my relative informed, i caused extra stress, on me.
i wish you all the very best. feel free to PM me if you wish. slainte.

Nestlyn, I hear you. My mum isn't that bad, but she wasn't the most loving mum it has to be said. Very hard and disapproving. She had an awful childhood herself which damaged her and I tried very hard as a child to kind of 'protect' her from life by trying to be perfect and not do anything that might upset or disappoint her. It's harder I think to be sympathetic when she never had sympathy for anyone else.
Your parents are so young. If you can try to start getting as much in place as possible to try and mitigate the inevitable crises, that will make things easier in a practical sense. But I know that doesn't help a jot.

MrsRussell that's really insightful.
I've had years of experience of this. I have no idea how you can make this happen (as I failed totally) but please try to get outside help. The masking makes everything worse in the long run and is quite fundamental to the position I'm now in. Because I'm still kind of allowing a bit of a pretence. I wish you so much luck in managing the situation better than I have.

I find this thread very sad but thought provoking
I hope I don't come across as lacking sympathy because that's not my intention but I do have a different perspective

My background is
I lost my mum to cancer at a young age
My dad is currently fit and well but obviously now alone. His parents lived to a great age but had dementia. He always said how much he would hate his children to have to care for him but really how can he avoid that?
I work with people with dementia in a professional capacity.

As for allowing people to die younger the problem is that no-one ever wants to die whilst they are fit and well and enjoying life. At that point they always want the life saving operation, the cancer treatment etc
Drs are only doing what people want when they save people from dying at a young age. Would I have wanted my mum to survive another 10 years even if she then got dementia? I think I would have done yes.
Also many things don't kill you they just make your life more shit. Very few people would actually die of having a fall at home. In fact they would more likely just lose their mobility and be worse off.
People have prophylactic blood thinners to avoid strokes not to avoid death but to avoid major disability.
The ideal of a completely healthy life and then you die is not most people's fate and can only realistically be achieved by legalising euthanasia
We need to face that truth in our society and start talking about this stuff and planning for it.
I was on another recent thread about people not wanting to move to more suitable housing in their 70s. People don't want to face the prospect of getting ill and needing care but in your 80s it is a pretty likely prospect.

It is definitely possible though to turn down unnecessary life prolonging drugs and interventions for someone with dementia. Especially if they are able to state a view that this is what they want. If the vitamin appt seemed pointless and distressing I would definitely encourage you to turn stuff like that down and only take her to stuff that is of benefit to her in the here and now. I got both my parents to make advanced directives, PoAs and we talked about this difficult stuff so that I knew their views confidently. Many people I talk to in my professional capacity say they never discussed it and don't know eg their parents resus wishes.

I know my view is maybe not realistic because a) I haven't got personal experience of caring for someone with dementia yet b) I fondly imagine my professional experience will make it easier and c) I am still smarting from my mums death and I honestly do feel I'd like to have as many years with my dad as I can whatever state he is in. I feel kind of ready to step into that role for him when the time comes (Maybe I will live to eat those words) but the problem is he doesn't want it. He can refuse life prolonging stuff, get a DNAR but the fact is that if he doesn't die of something before he gets frail he cannot avoid it. When we talk about it he just says 'that will not happen. I won't be here' but I cannot imagine that he would end his life if it came down to it so how can he avoid it?

I don't know how possible it is on a personal level but professionally the advice is definitely just to try to live in the moment with the person with dementia and not compare to the past or worry about the future but see if there is any small joy you could still share together eg reminiscing or something sensory like a hand massage are often winners or something you used to like to do together long ago and try to bin off any conflict inducing stuff to someone professional who cares less.
I know that with live in care there is still a lot of managing to do of the care arrangements, finances, house etc but I would definitely recommend reducing what you tell your mum about or involve her in if you know she hasn't got capacity to cope and gets distressed. Sometimes people get stuck on what a person would have wanted rather than what is best for them now. Like I said I have no idea if I could actually do it but if I found myself dreading visits as much as you do then I think I would try to cut to a minimum anything 'business' and try to just have a short visit where it's only focused on trying to see if you can find some small thing to properly enjoy. My mum was only very ill for a short time but there was as a lot to organise care and equipment and appts and that was overwhelming and stressful but I would try to connect with her by doing her hair and nails and reading to her and I found meaning in that even when she wasn't responsive. I know it isn't the same as keeping it up over years but it's those moments I remember now she has gone and I would genuinely wish that you can somehow find some small moments that can still be happy

to each and every one of you.
But reading this thread I began to wonder.
And the op said about her mum being difficult before her illness.
So I now think there is some FOG (fear, obligation and guilt ) involved.
You really need to step back.
I used to think how sad it was so many old people ended alone with no visitors in care Homes.
But as I aged I realised there was a reason was this.

Dad went in a home and had tons of visitors. He felt safe there. Some care workers came to his funeral - because they loved him (in the short time they knew him)
He never complained and he had every right too.
Please op started looking after you.
The happier you are the more you have ti give. Your daughter needs you. She needs a happy mom.
Get yourself in to a good head space is best fir everyone including your mum.
Don't let this take over and if that mean care home so be it.
A friend put mil in a home under protest.
Mil had so much company there she then told family off for not letting her go in sooner ..,,,...

I feel so much for all of you who have told your heartfelt stories here. Some of my cousins went through this with my auntie, a long slow death over ten years. The last two years she was as good as dead anyway. It was heartbreaking. My best friend from uni is going through it with her mum now. It's been six years now, and her mum no longer recognises her, and had become aggressive, occasionally violent and abusive. My friend feels a lot of guilt because she has always had a tricky relationship with her mum, who openly favoured her brothers (who now do fuck all to help, despite living five minutes away, whereas my friend is 200 miles away), and I know that it is really taking its toll on her.
It seems really selfish to actually feel grateful that my own parents' deaths were comparatively quick - mum dying of cancer two months after diagnosis, and dad dying two days after collapsing with pneumonia. (And in my dad's case, he'd just been at a Christmas party so at least had been enjoying himself up until the end!)
I also agree that there is far too much emphasis on longevity rather than quality of life. Different disease, obviously, but I read a very interesting article by an oncologist who said that if he had a aggressive cancer diagnosis over the age of 70/75 (can't remember the exact age,)he would refuse treatment and just have palliative care.
My heart goes out to all of you who are dealing with this dreadful disease.

she has always had a tricky relationship with her mum, who openly favoured her brothers (who now do fuck all to help, despite living five minutes away, whereas my friend is 200 miles away
This seems to be such a common dynamic!

@Miasicarisatia Yes it is! In our case with my in-laws it was me and my husband who did the vast majority, despite living sixty miles away, and his younger sister did virtually nothing - she lived two miles away! (She did manage to put on an Oscar winning performance of grief at the funerals though, despite never giving a damn about them when they were actually alive!)

As soon as one person steps up everyone else who might have been in the line of fire steps back several paces
The lesson is 'do not step up'...surely?

You're right. The one who steps up invariably has the full caring load. In my case I have two siblings. One who lives in another country and one disabled one who I look after too. Not been any opportunity for me to share the load sadly. I should have emigrated when my sister did..

It’s so hard to set boundaries isn’t it? However, it’s essential. My very frail father has heart and lung issues and anxiety but also ostrich syndrome when it comes to my mother (Alzheimer’s). He refuses help from SS then expects me to sort out any fallout when he has to go to hospital and she’s home alone - I get a panicky call from him. This has happened six times since since October and he always says how sorry he is to burden me but nothing changes when he leaves hospital, he’s quite irresponsible imo. He’s always been a drama queen and a bit self-centred and I’ve made a rod for my own back by indulging it. Most recently I was enjoying dinner with friends who I haven’t seen since December 2019 when the call came but I genuinely didn’t hear it. As lockdown eases I will be less available- I’ve made some plans for the summer and my father has been made aware of this. And my kids 100% come first, followed by my partner.

Well done Green. Boundaries. That's what is needed.

I think "boundaries" is the most important word ever for this whole relationship. And doing things on my terms.

Lots of sympathy for everyone posting on this thread. It is a duty and I have also had the dread in anticipation of dutiful phone calls (less so actual visits but I live a long way away). I can't call more than 3 times a week because I won't have my every waking day tied to The Phone Call. It doesn't make a difference that the calls are often OK, it's the anticipation.

My DM is getting a type of cognitive impairment (which will become a type of dementia, slowly) which goes with Parkinson's and frankly it is better than when she was fighting me and criticising and just expecting me to solve everything without doing anything herself. Now she is more likely to listen but only because she's much less independent. I appreciate others are hit hard by mental decline of parents.

I don't think duty is a bad way to look at it. I find it a useful way to think of what I'm doing because I know people who are still trying to get care or validation from elderly and demented / sunk into themselves parents and I don't think that works. Duty and caring aren't incompatible - it's a different kind of caring than the impulsive and emotional type for me.

Thank you for this thread and everyone's honesty.

My eldest son died aged 18 after a gruelling two and a half years of brain cancer where I looked after him 24 hours a day. The year later my mum died after a gruelling year of cancer and strokes. As soon as my mum died my dad started showing signs of dementia. His natural verbal aggression to me ramped up to physical aggression and finally after nearly killing me he went into a care home where he has been for nearly 3 years. It's been exhausting. Especially caring fir a parent where the relationship is complicated.

My dad is now bedbound after contracting Covid. He has grade 4 pressure sores. He doesn't know who I am or remember anything about his life - not even my mum who he was married to for 50 years. He cannot do anything fir himself. He has no quality of life and pays £5000 a month to lie ina bed. He'd hate to be like this and would end his life if he had the mental or physical capacity. I know this. After my son died we all had very frank discussions about quality of life versus death.

I am able to visit him now but I see him not really as my dad but a vulnerable old man who has no one else in his life to look out for him.

The care home are good but when they say to me oh he's eating and drinking well you must be pleased all I can think of is that it just elongates his life, of which there is no quality. It will be a blessing to him and a relief to me when he does die. It sounds harsh and cruel but that is the reality.

Not many places where you have the freedom to say it as it is. Thank you.

My youngest son has had to see all this. I have told him that he should never put his life on hold if I get dementia. He must not have any guilt and must put me in a home if I show signs. He's had to live with so much I can't bear to add the pressure of caring for me on to him.

He has no quality of life and pays £5000 a month to lie in a bed Yes, this. I dread this happening to me, but don't know whether I have the courage to avoid it.

An. Elderly aunty in law, widowed, no children was admitted to hospital aged 90 and refused food and water and died in a couple of weeks.
I don't like to hear 'how well their eating' as it won't be salad and meat, probably some soft easily fed stuff, and just means more nappy changes (assuming they're bed bound or wheelchair bound). I'm not sure that adds much to the quality of their life.