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 felt the same about my mother. She died many years ago, but was such a difficult person, wouldn't have carers or cleaners. If I tried to do her cleaning she would just wander round behind me, saying 'I can do that', when she clearly WASN'T doing any cleaning at all, and neglecting herself too. It was so, so hard.
I really didn't like her much , and when I had to get help to break into her flat to find she had died of a heart attack I was SO relieved, for her and for me. DH came to fetch me, (the police were involved because of the sudden death). as we drove home I truly felt a great weight had lifted from my shoulders, and cruel as it sounds I said 'I'm free!' . Seems an awful thing to admit this, but was truly how I felt. The mum I loved had gone long before.

Envious of people whose parents have died
In times gone by on Mumsnet there would have been a very swift response of on long the lines of 'how dare you I'd give my right arm for another 5-minutes with my beloved mother' etc
But now I think more and more people are getting it, it's so cruel of governments to sweep this under the carpet and leave the adult children to absorb all the pain stress and horror of this illness.
They pretend to want to sort out a proper social care system but they never actually do it, they just kick the can further down the road. Too complicated too expensive and too easy to turn a blind eye to the suffering of the people who are too crushed and burnt out to fight for anything better

Fernie Thank you for your honesty. It's not cruel on my view... After all, who does it hurt? And your dh was probably relieved for you. really helps to know that other people have those thoughts and are willing to express them.

@Quincie

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.

Ok, I lived through this with my Dad because he was and still is as much as he can be a care refuser. I suppose fiercely independent Ida nicer way of putting it. So to a certain extent I had to leave him to it until his living situation became to precarious (environmental health officials shutting down his rented house, council flat lost due to unpaid bills and disrepair, not to mention a sewage leak, then sheltered accommodation having to protect all their other residents from my DFs aggression and unhygienic practices). In reality you are constantly playing catch up, the person themselves is wallowing in their own shit (literally), no one has the authority to stop them neglecting themselves and absolutely everyone else in the vicinity suffers. At least in care homes they can enforce cleanliness and have access to support. There is no right ways but ignoring it is awful.

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.

This thread is quite cathartic. My Dad is 89 and crippled by arthritis, so frail, refusing help.
I find it emotionally very hard. He is 13 years old than my mum, so we always thought she would be caring for him, but she died of cancer 8 years ago.
I still love my Dad, but the visits are so draining - not dementia but not really himself anymore either. It’s like a form of prolonged grief when the person is still alive.
It’s such a sad side of life.
Now that I’m here in this place, and I l know how many others are, I find it odd that as a society we are so silent about it. There should be a Ministry for the Elderly.

It does make me question how we are organising ourselves as a society. It worries me because I am an older mother to an only son, and I would never want him to be in this position. The reality of my bottom-wiping life (for son and father) makes me run away and indulge in some pure hedonism, but I don’t even know what hedonism looks like for a woman in her 40s.

💐💐🎖🎖💐💐 for everyone here, walking the walk. As people have said, it’s the walk and not the feelings that matter... and never feel guilty, as sometimes the load is just too much, too much.

Why can't we accept death and not obsess over trying to make people live longer and longer.

Completely agree with you. It's just cruel

Miasica
I'm so glad this thread has remained so kind.

*want to run away!!

I’ve said I will never ever care for anyone again - and it’s something I will stick to, despite many thinking I’m a monster
Lots of people will think this but won't dare to say it, until they do..... there will be a tipping point when everyone will downtools and say 'no we cannot do this anymore'

I'm going to go quiet for a bit in the run up to the third visit of the week as I'll be sorting commodes and baby alarms and god knows what else, but I'm so glad that in the midst of all this crap, some people have found a bit of togetherness/catharsis.

This is how it is with my nana exactly, down to not accepting the dementia and insisting she does all of her cooking and cleaning and household management. My mum, myself and my sister do most of her care with 30 mins a day from carers to check in on her and give tablets in the AM. She usually refuses them entry anyway, and calls the Police.
It's draining and thankless, and it's wearing my mum out and making her feel old before her time. Hard to see. We love her but she's not easy and had a difficult personality before all this anyway.
I feel for you OP 💐💐💐

So sorry you are all going through this. My DF had dementia years ago and died at 78 in a care home. I hope my DC will put me in a care home when i need 24/7 care as i think its the best for everyone concerned.

Hugs to you all

It's hard isn't it. Dementia is a cruel disease. I spend quite a lot of time at work talking to people feeling just the way you do, or feeling guilty for feeling relieved after the funeral. I've been there and done the care in my family (died last year)

My advice is to to remember the good times, get the help you can and never beat yourself up about it

@SinisterBumFacedCat Part of what you've said resonates with me as well, why is it the people who do so little always end up golden!? My uncle does nothing except exacerbate her health issues with bad food and sweets yet my mum spends hours of her life cleaning and gets told she does nothing. It's so frustrating.

I wonder if the ‘golden child/person’ is out in a pedestal BECAUSE they aren’t there; whilst the person actually doing the hard work, can be shouted at etc, because the person being cared for KNOWS deep down, that that person will not stop caring for them.
A bit like a child acting out against their parents, purely because they intrinsically know that parents will always be there for them, whilst friends, school etc can and will walk away from them.

However you can take pleasure from the fact that you are doing your duty by your mum, that you are caring for her really well, and that if she were aware of how you are coping with the situation, she would be very proud of you
Is that really what's happening?
Or is it more the case that the adult child is not coping at all, they will go on to develop health problems because of all the stress.
That the happy and relaxed retirement that they had anticipated has now been stolen from them....golden years ha what a joke, they were just shit years, and now your own old age will be much harder because of this.
Any loving parent surely would be horrified at the burden they were imposing on their adult children?

Such a loving and supportive thread with so many of us experiencing this living grief. I'll be off to see my Mum later this afternoon in her care home. She doesn't know me any more, sometimes recognises family in photos, has little or no interest in the things she once loved so much like flowers and music. It really is a duty visit now and I find that so sad. Virtual hugs and to all of you who have posted, many of whom have had or are having a really hard time with dementia and its awful effects. Thank you to the op for posting. It helps to hear others' stories.

@Bargebill19 That does make sense, and I imagine it would be true for many carers who know they have to keep going through hard times when others can walk away.

If I tried to do her cleaning she would just wander round behind me, saying 'I can do that', when she clearly WASN'T doing any cleaning at all, and neglecting herself too. Yes, Dad was like that. I tried sneaking in while he was at Chapel, on the principle that he wouldn't actually notice the difference but he did, and wasn't pleased.I was embarrassed when SS visited, thought they'd blame me for being a bad daughter, but they took it all in their stride, think they've seen it so much. I found them non-judgemental.

Quincie You're so right.The phrase "keep them safe" sends a shudder through me.

Bargebill I'm sure you're right about Golden Child. It's like young children, isn't it? Able to play up with mum. because they know her love is unconditional, in a way that they wouldn't do with anyone else.

I've spent a bit of time wondering about what it would be like if it were DH I was caring for, not my father. I can't imagine resenting looking after him ... but of course it wouldn't be him, it would be someone else, with just occasional flashes of him. I haven't come to any conclusion. I suspect wiping the bum of your partner is quite as bad as wiping the bum of your parent.

I'm just home from seeing my mum. She was quite on the ball today which was nice. We looked at old photos and she remembered a lot of faces, although not of me! I think a lot of my resentment about the situation comes from having had my children young myself, early twenties, then when they left home and it was finally 'my time' to have nice days out, go on holidays etc, I became carer to mum and my disabled sibling. I wonder if I will ever get to do the nice holidays, or whether by the time I get some control over my life I will be too old.

patienz I'm lucky in that I had a bit of time for me in between children growing up and my father needing care. But in that time I've built up a life volunteering and running several groups, and there's no way I'm going to give all that up! It offers me a social network and my feeling of still contributing to society. I will be in my 70s before he dies, and it's much more difficult to start being involved in things at that age.

T May tried to introduce a social care plan - I think no one would be expected to pay over a £100,000 limit.
It was reported in the papers as a dementia tax and the Cons lost lots of parliamentary seats.
Previously ? Abou 2010 a minister suggested everyone pay ?£37,000 into a fund for care.
It was never adopted.
No one wants to believe it will happen to them. .

M Dad had to go into a care home due to health issues.

He was bright and chirpy with everyone else, but the moment I visited the moans started, for the entire duration of my visit. Hours on end.

It really got me down.

Thank you everyone for sharing. So much sadness and frustration. And interesting stuff about the wider issues. I wish we could work out our attitudes to an ageing population.
Patienz Glad your visit went OK. Mine was alright because I took my daughter with me. That always makes me even more stressed because I'm so scared it will be horrible and boring (she's only 12) but actually she's very sweet to mum and tries to keep conversation going and just ignores the mad bits and the repetition. And she's just not as upset by it as I am. So one positive is that I should try not to give in to the catastrophising I tend to do.
It all comes back to the idea of trying to accept what you can't change I think. I won't feel the same by Monday but I've now got 2 days off and I feel like a different person.
How sad though for my mum. God I hope my daughter never feels that way about me.