Help me sort out my brain, I can’t talk in RL

[bluechinavase]

A couple of weeks ago my very elderly Mum was whisked into hospital. I’d been preparing myself for the worst and indeed it was the worst. She either had a couple of days left or underwent a huge operation with all the risks attached for a frail 92 year old leaving her with a 20% chance. She took that chance, made it though surgery but then faced with the huge road to recovery ahead of her, kinda lost the will and keep saying she wanted to just go and was in great pain. Eventually the palliative care team were brought in. So for the last couple of weeks I’ve been crying myself to sleep and preparing myself. I started to feel better about it all, notwithstanding being realistic when my siblings were hopeful to keep her going.
Anyway, this week has been a huge turnaround. Mum is in less pain and the doctor said yesterday she didn’t see why Mum wouldn’t make a complete recovery and be living independently like she was before.
Great news but why can’t I feel delighted about that. I feel like an awful person for not being delighted about it. I’m trying to figure out why. Everyone is saying how wonderful that is and how delighted I must be except I feel like I have to put on an act. I can’t help but feel we’re going to have to go through the same arduous process several more times. I have a different relationship with my mother than my siblings do.
Thank you for reading this far. I’m so lost I feel brain dead.

Totally understand, your mind is in utter turmoil. You were preparing to go to the brink but have been unexpectedly pulled back from it and your poor brain is trying to reconfigure but also not become too hopefully. Really understandable xx

Thank you for replying. I truly can’t make sense of the mush. Me and my siblings are taking it in turns to visit the hospital but I don’t think my brother realises the toll it takes. He was visiting yesterday and just presumed I’d go with him so he picked me up on the way. I was due to visit today but then he asked what time as he was wanting to visit too. I’ve had to set him straight that visiting for days in a row is not my preference and we need to share it more evenly. I’m happy to visit extra days if others can’t make it but it makes no sense for us all to visit en mass each day. It’s too exhausting. For me anyway. I still have kids at school albeit teenagers. Siblings fully retired.

I understand OP. You had prepared yourself for the worst but at least the suffering for her would be over. Now at 92, they have managed to keep her alive and going for a bit longer but yes at 92, there’s only one way it’s ultimately going to go and it does mean more suffering for her down the line and as a result, for you too. I don’t really get the keeping old people going whatever. I think it’s kinder to let them earlier without all the medical intervention. I used to think that that maybe I thought that because I hadn’t had a parent in that position and maybe I would think differently if I had. But no. I lost my dad in October last year and he was kept going a bit longer by some pretty horrible procedures but there was no quality of life really and that only got worse. It would have been kinder to keep him comfortable but not have done these procedures and let him die a bit sooner, love him. My mum nursed him so very well but couldn’t cope at the end and he was in hospital and then a care home when he died. The strain on her was indescribable and the guilt. So I understand. to you. So very hard xxx

Yes OP, the hospital visiting is absolutely exhausting. You are so right to pace yourself. It takes a massive toll. You’ve got teens at home, so did I and my sister a preteen. You have to be ok to keep the dc going. Your brother is maybe finding it a little bit easier by what you say so let him take the strain for a wee while.

@ButEmilylovedhim Thankyou. I’m feeling the strain already and feel bad about that coz it’s nothing compared to what others have to deal with

Don’t compare your yourself with others. Your load is only yours, you will deal with this in your own way. But if you need help and support ask those around you. And please talk!! On here, in RL it does help

@ButEmilylovedhim a few years ago I had some counselling which brought a lot of things to the surface, and a lot surrounding the relationship I have with my Mum. I’ve felt pretty invisible over the years but I was the one who dutifully took my Mum out to lunch each week. My brother visited and she ran around after him until eventually my SIL pointed out that he was letting me carry the can. He started doing more. My other sibling just visited and never took her out. The mental load is heavy

It’s complicated too by the sounds of it, if your relationship with your DM is different to that of your siblings, I’m presuming more difficult, less close? There were elements of that with my dad too and I was angry with him at times for past stuff and things that happened when he was ill. Which is guilt inducing and conflicting when they are so ill! And he was a smashing father at other times, a real head fuck of crap to get your brain round. Now I just miss him. And I think some of the latter behaviour was down to illness before we knew he was ill. My mum suffered especially so I was angry on her behalf too.

Don’t for heaven’s sake blame yourself for not doing as much, visiting as much as others. They sound like they have fewer responsibilities and have an easier relationship. I was in awe of my mum and know I wouldn’t be able to care at home for someone like she did, no sleep, run off her feet, putting up with all sorts of unreasonableness etc but she was a nurse for many years so was able to fall back on that role to a large extent. I have got none of that in me at all unfortunately, if it’s a genetic thing, it bypassed me completely. People just are different, can cope with less, more, none at all. Don’t beat yourself up, it’s hard and horrible enough already.

Sorry, cross post. Yes I understand more now. You’ve always done the most! I’m sorry you have felt invisible I’m guessing your brother is the golden child and you’re the dutiful daughter, not given any credit, just expected to visit and take her out etc etc. Yep, put down the burden now. She’s in hospital, she’s being taken care of. I wouldn’t visit for a good while and have a fecking rest! Sorry hope the swearing doesn’t offend, I find it helps when in extremis. You know what. When my dad was in hospital, it was one visitor only because of covid, which was obviously my mum. And I was relieved I didn’t have to, indeed couldn’t visit. The one time I did before they changed the rules, it was awful. Dad wasn’t himself, shouting and complaining, he wasn’t glad to see us really because he wasn’t him anymore and the whole thing was really really distressing. It didn’t do me any good and I don’t think it did him any good either. When my mum visited he would often ask her to go away again. Just awful. Save your energies for what comes after. But don’t be railroaded into becoming her carer. The authorities would love you to be, frees them up and they will put pressure on. Say no! I fully understand the feeling of dread that the crises will keep on happening and they get patched up until the next one which will fall on you to some extent. So get it. Hugs xxx

Thank you. Knowing someone just gets it makes me feel a bit better. I’m a strong person, normally. When I thought I’d lose my Mum I cried a lot but it made me feel better coz I realised that I wasn’t an ogre and did care. Previously I thought I wouldn’t care. But now all those feelings are back because my thought process has been totally derailed

Gosh yes, even down to be relieved when I cried so I knew I wasn’t a monster! I think some of the not crying is down to our brains protecting themselves, it is less painful to be angry! Of course, that doesn’t apply when the parent or whoever is abusive. I can easily imagine not caring or crying then, even being glad. I’m relieved myself now that my grieving is feeling more conventional, that is, sad not angry. It still crops up though. I would just feel what you feel and not question it or berate yourself. If you feel indifferent or pissed off or sad or annoyed or don’t want a bar of any of it then that is how you feel. It’s a long road. I don’t think people understand if it’s not happened to them. I have a good friend who has been there before me who has been very wise. An ambivalent relationship with a parent is much more common than it seems. You are not the only one going through this, not by a long way.

I get it, because of my work I've met so many in your circumstances. You really are not alone. Talk to adult social services about support and nhs continuing care, if applicable - get all the help you can, at her age recovery won't be fast or necessarily full. Look after yourself too

My sister felt the very same way as me when he was ill. If I hadn’t had her to talk to, I would have felt very on my own and like I was the most horrible person in the world not to be distraught 100% of the time. But I wasn’t and nor are you. Life and people are so complicated. The brain is processing so much at these times, I’m not sure we’re in charge of that. I’m reading a book called The Grieving Brain by Mary-Francis O’Connor and it is explaining a lot. I haven’t got very far because it’s hard going but I think it will help me to understand the why of how I’m feeling and felt. It already has. Xxx

It's clearly been a rollercoaster ride and exhausting for you both physically and emotionally OP

I agree it's time to make some space and time for yourself, take a step back and let others pick up the slack for a while.

Try to be kind to yourself like and do what you would advise your best friend to do in a similar situation.

Try not to judge yourself harshly in any way, it's not appropriate, be kind to yourself and put yourself first for a bit, we cannot pour from a well that has gone dry.

Your relationship with your mum and siblings sounds complicated and life sounds very tough right now. If this were me I'd get some counselling support for myself. Maybe think about what kind of support you as an individual would find most useful and how to access it.

Your feelings seem very normal in your present circumstances.

I think that HCPs have very little idea of the impact of the roller coaster that carers go through getting conflicting information. (I'm an HCP myself).

I also think, and I'm sorry to say this, that staff in acute hospitals have a very rosy view of what recovery is actually like for very elderly people after major events, illnesses, surgery.

I would very strongly suggest that you go and see your GP and talk to them. GPs are likely to have a much more realistic view of the likely outcome for your mum, and of the impact it is having on you.

I feel like all my reactions have been turned upside down since my mum got ill. I was pleased to hear that my mother hadn't improved, I will be relieved whrn she dies. It is so odd to be feeling these things. It's exhausting.

I loved my dad but, in the 18 months before he died, 3 times I had to tell my mum he might not be coming home (no visitors). It didn't help that mum has alzheimers and struggled to understand/didn't remember so it was a repetitive conversation each time andit was bloody hard. The first 2 times he did recover and came home but although I was relieved and happy I also knew that I was going to have to go through that again and it really made things tough.

Just wanted to update y’all. My Mum has made it home with a full care package. Whilst there are a lot of positives from the situation, it just feels like a big facade. She’s home, just sitting there doing nothing. She’s not doing any of the things she did before, like reading, crochet. Just watches the telly. Visiting now is seeing that she’s ok and household chores. She did say that she’d go to a day centre 3 times a week but mostly she can’t be bothered.

So yay, she’s alive and home but it’s all a bit rubbish. It weighs on me like a millstone and then I feel guilty about that.

That is so hard. How long has she been home? I remember my mum being quite difficult after she came home from hospital after being desperately ill. She was younger than your mum but had a very low chance of making it through her op (perforated ulcer). In hospital she was the life and soul of the party but once she got home she was snappy and grumpy and resented the care package. The only thing that cheered her up was going out and about in her wheelchair but at home all she could do was watch tv.

She’s been home two weeks. She seems cheery enough on the face of it but I can’t help but think she’s just putting on a brave face for our sakes. My brother has a rose tinted view of the situation and as long as she’s alive all is well but the reality is crap. I know others have much worse to deal with and I should be grateful she’s still here but it all feels like a giant game of ‘let’s pretend time’ and I hate it. She did nothing in hospital either, just lay there. It’s like she’s waiting for the inevitable but that’s been kicked down the street a bit so she has to wait longer. There is no happy ending, just a prolonged, shitty one. She refuses to use her mobility scooter and doesn’t want to go anywhere. I can understand her lack of confidence and empathise but in the end who are we to tell her how to live her life. She’s always been a bit reclusive, especially since my Dad passed but never did anything to fill that void.

the trouble is you prepared yourself eventually for some outcome then it changed to an outcome which at the time seemed to be what your mother wanted as well. Now things have changed again and it's back to the original outcome of your mother coming home being herself. It's a lot to take in and as things changed so quickly you expect them to change again without warning. I have been through this with my FIL 8 times he keeps coming back even though it would be kinder and what he wants to do is pass but he never seems to let go. i don't mean that unkindly but from an 18 stone big man he is a 6 stone bed-bound incontinent man with dementia back fractures and in pain so no life at all. how he has defeated covid 2 strokes etc is beyond us. that is the trouble you do prepare yourself but with medical things, it can all change suddenly. please keep talking to the family and doctors and I hope your mother does come home to enjoy more happy years

Oh op. I understand. You have had a glimpse of the future and it's not great.

If your mum is really able to return to independent living those feelings will pass. If not I think many of us have conflicted thoughts as it is awful to watch a parent suffer. I know I was relieved as well as devastated when my mum died. You have had a huge shock and I think to some extent we prepare for and start to accept the worst. That takes some coming to terms with as you have already started the grieving process. Give your self some time.