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.

Yes it's rubbish. My mum won't believe I am me now. I'm the only person she doesn't recognise anymore. She's polite to me, but that's it.

This is so heartbreaking. I saw this happen with my mum (only child) and her parents. It was like a role reversal. My parents are late 70s and I know I will also go through this. So sorry for you both, OP and PP.

So sorry, it sounds so hard. Could you manage to visit a bit less often? It doesn’t sound like your mum is actually alone.

With my own mum, visits got rather lonely towards the end of her life. She could, at her best, be lively funny and interested in the world. She could also be absorbed in the past to the extent it was obviously all that mattered and my visits were a way for her to have an audience to tell me the same things thousands of times over - the tone never varied and it was almost word for word each time. I think it was trauma rather than dementia in her case, but I just felt irrelevant and she used to complain bitterly about her wasted life. There is something particularly sad about having to accept you have a very tenuous and superficial link with someone so central to your life.

Thank you for being kind. And really sorry about others' experiences too. I visit minimum of once a week but don't think I can visit less because if I stopped I feel like I may never go back. I feel sick on the day I visit and lose the whole day waiting for the visit, being there then 'recovering'. I snap at my daughter, I'm impatient with my husband and now I'm just sitting crying because for various reasons I have to visit 3 times this week and I've done 2 but Ive still got to get through tomorrow. This is a right self-pitying misery fest but I'm just so drained and it's the fact that I've put as much as possible in place to make life OK and still it's just horrible. I guess it's just the acceptance now that it's horrible until she dies and that might not be for years. Thank you again for answering.

You are not alone so many people feel like this. I’ve always felt that we can keep people alive, but fail to know what to do with those suffering from all forms of dementia. Privately, I think we made a grave error in managing to cure and vaccinate pneumonia in the elderly.
I admit to feeling like throwing a party when the last parent died. - all four had a form of dementia (in laws and mine). 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.

Dementia is a cruel disease. I always hope my mum's body will pack up before her mind gets any worse, but it's out of our hands isn't it. You are not alone.

I get you. I have spent the day with my mum, I feel like an actor preparing for a role. I put on a cheery smile and talk all kinds of wistful rubbish. I sort all the problems I can without POA, but it’s like trying to complete a jigsaw in handcuffs. With alarming regularity after a relatively good day together, into which I have poured all my energy and am left exhausted, I get a call or a text demand help or accusing me and my husband of stealing. Then I get told how all the people who do relatively fuck all for her are wonderful.

Both my parents are alive but they are not the parents I knew most of my life, they are strangers. I grieved for my parents years ago but they are still here. It’s a horrible thing to say but I envy my friends whose parents died of short merciful illnesses. I remember my Nans death of cancer, she was still the same person up until a few days before she died and the whole thing was so bloody peaceful in comparison to what I am going through now. My Dad got ill in his 50s and is now in a care home. My mum is early 60s. I know I probably will go the same way and I hope my experience will mean I don’t do this fucking denial bollocks with my son’s and really on them and let’s face it, there partners for care and blissfully ruin their lives.

Bargebill Not a monster at all or if you are, I am too. She has had so many medical appointments the last month or so and it just seems like this mad effort to keep her alive when actually it ruins her quality of life because she hates leaving the house, she hates speaking to doctors, she gets upset because she's stressed and doesn't really know what's going on. And for what? Why can't we accept death and not obsess over trying to make people live longer and longer.
Sorry. I've derailed my own thread. It just seems so 'big'. On a personal level it's takon over so much of my life for so long. And then I see the societal level, with every doctors visit involving tweaking this or changing that. One of the med appts recently was about her multivitamins. I just can't believe it when I write that. And really I think all she wants is to have a normal fun conversation with me but I can't because there's so much to do and to explain and it goes on and on. Not that she can hold a conversation. Just going round in circles. So miserable

Sinister
Thank you for sharing that too. That's way worse than I've got.
All of you are being so kind. Thank you for all your messages.
There are so many of us I know.

Sending you some virtual Florentines, my DM is no longer with us but I could have written your post a couple of years ago. She wasn't the mum I knew at the end, but I try not to beat myself up as I did what I had to do and was with her at the end.

God I hope I don't go the same way. I genuinely do think about Dignitas and putting a living will in place before I get old and while I'm living with this experience.

Sitting next to my mum in her dementia home right now and it's heartbreaking. We were so close but she's a stranger now although she looks the same ! I come once a week and bring flowers that's all I can do. I do get miffed that I'm the only one that visits, my brother can't handle it anymore and my niece used to visit but she doesn't any more. I think lockdown gave people the perfect excuse not to bother and it's carried on now lockdown is nearly over. Bloody dementia

I think that if we can’t cure it, can’t put the money into research for what is the biggest killer, can’t define the care we get for a physical, medical illness but social care that is charged for and forced families to sell their homes fund it, then we should legalise euthanasia and allow ourselves the choice for the dignity of not going through enforced indignity on enduring a long pointless expensive illness that no one wants to treat and everyone wants to ignore.

After my dad died my mum was very clingy and had lots of health issues. I lived 200 miles away so visiting every month was a chore (her every month, OHs parents every fortnight) I resented all that travelling especially when I wasn't that well myself. And it showed and then I felt like a complete bitch and the cycle continued.

Two years later she died, after us being up and down between home and hospitals, it was a rotten time for everyone, not least her.

I dont think I've quite got over it tbh. At the time I thought it would be a huge relief but it doesn''t really feel that way.

It affects women twice as much as men, it’s no coincidence that the medical profession remain so unbothered.

I know exactly how you feel. I am envious of people whose parents have died. My mum is in a care home now and although she remembers us, she just talks nonsense and thinks everyone is trying to murder her. Recently she has been asleep. All that would be ok if it wasn’t for dad who I have to take with me. He has dementia and forgets that she is in a home and what her condition is so get every upset. He rings me up all the time to ask me if we can visit. I drop by to see him briefly every day ( and I mean briefly). We have him for dinner once a week and I sometimes take him for a little walk. All of it is duty driven. There is no pleasure in it for anyone. When people say oh he lived until he was 100 I think please God no.

Lollipop Thank you. Lockdown made everything so much worse. I didn't visit during the first one, before bubbles, and she went so downhill. I've ignored them since. But even that was extra stressful in case some horrible neighbour shouted at me for breaking the rules. It's like we're so desperate to keep people alive that we have become thoughtless and cruel about quality of life. I know I'm doing my best but my heart does tell me that I'm not being as kind and jolly as I should be and not acting the part enough because it is just a duty. I love her because she's my mum but I don't really like her and I don't enjoy being with her. I hope she doesn't know that but I think perhaps I don't hide it well enough. Just makes me cry that she's kind of done her best as a mum, though it wasn't a very good best, and now she's completely alone and even I can't cope with her.
Thank you all for sharing your stories and your sympathy. I'm so sorry for everyone who has been or is going through this stuff.

It is hard OP

But, really, you've got to work on your attitude and acceptance. You still seem to be in a place of "Oh it's so awful that she isn't like she used to be!!". This is exhausting.

In my experience, with two close relations who developed dementia, you must deal with the here and now, not the what you wish.

Your mum is a new person now. Deal with that person, not who you wish she was. This will make things must less exhausting for you, and you will dread your interactions less.

I keep cross posting. Just to say that I'm reading everything you have all written and I am so grateful for the understanding and kindness.
I agree Sinister that as a society we certainly need to have proper thoughtful conversations about end of life care. Because what my mum and so many others' parents are going through brings no joy to anyone and causes so much misery.

And yes, we don't get much "pleasure" from the actual visits. 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.

That is what you can take pleasure from.

Thursday, I know. I've been 'working' on this for almost 12 years now, including paying for years of therapy, changing my behaviours, using anti-depressants, relying on the patience of my husband and daughter, looking at religion. If I could change and not feel so broken of course I would.

I'm sorry, I did sound patronising.

It's so, so hard. My Dad has advanced dementia and I can't go without crying when I see him. He doesn't know who I am. It breaks my heart. The impact on my husband and kids has been immense. I cope by knowing I can still go and hold his hand. It's the only way I can deal with it.
I've been lucky. I have a friend whose parents had dementia. It was so valuable having someone who knows what it's like and doesn't think you are a monster for some of the thoughts and feelings I've had.

It’s a long goodbye to the person you knew, yet the shell of them is still there, inhabited by an increasingly unknown personality. It’s both grief and torture.
Can you take pleasure in knowing you ‘did your duty’? . I can’t. So much given up just to keep safe, someone who I didn’t know anymore, because ‘they’ weren’t ‘there’ anymore,

Thursday thank you for apologising. I was too defensive as well.
That's the thing about the effort it takes to deal with dementia. Its effects on your own abilities to deal with anything without feeling flayed.
EeeBye, so sorry. It's so crap.