So bloody exhausted waiting for someone to die 2

[StiffyByngsDogBartholomew]

https://www.mumsnet.com/talk/elderly_parents/4866628-so-bloody-exhausted-waiting-for-someone-to-die?page=1
Carrying on from our original discussion

Posted here before… after almost ten years of caring for my dad he passed away this week.
I cannot yet feel relieved about it. His deathbed was awful. He got a covid infection and a delirium. He got aggressive, fighting, clawing, swearing, difficulty breathing. And it took 3 days like this before he died. In the last years I often wished he’d die soon… but not like this. So sad to watch. I feel really broken.

Oh and we live in a country where euthanasia is permitted, but he didn’t want it, so eventually this was his own choice.

Im very sorry to hear the news @Saz12 and @DutchCowgirl. I'm thinking all bereavements take a long time to process, especially carer bereavement.

@TheShellBeach
Thank you for thinking of me.
DF was admitted to hospital a couple of weeks ago due to having 2 falls.
Since then he has has got worse each day. He can no longer walk, stand, sit up, go to the toilet on his own.
He cried yesterday, that broke me.
He is now in a nursing home where he will receive 24/7 care.

I keep crying randomly, I'm ok all day then in the evening it hits. It's like a physical pain, I can feel it in my stomach chest and throat.

There is so much he wanted to do but I was 'too busy' or 'too tired'. He wanted to go to a harbour to see the boats, he wanted to get an Indian takeaway, go for a roast dinner.
It's too late to do any of that now.
The last night he spent at my house I remember going to bed early because I was so stressed and tired. He wanted me to stay up and watch a film.
I keep replaying it in my head. I was horrible toward the end before he left. I stopped cooking, I became withdrawn, hateful. I've fallen out with everyone around me.

He's not dead but the pain is so real. Trying to maintain my sanity and not break down into a million pieces because DD is with me all the time unless I'm at work is hard.
I can't process anything because I can't hear myself think. So many times I've told her to be quiet, please stop making so much noise, stop banging, tapping, jumping, singing.

Weekends are just filled with shopping for food, visiting DF & cleaning the house, taking the dog out. I struggle to do anything more than that and I feel terrible.

How long will I feel like this for? Why does it hurt so much all of a sudden?

@Saz12 we were sitting next to our dying parent on the same days this week. I wish you strength to deal with everything. It is a lot.

@JellyWellyBoots my experience is the hurt comes and goes. Sometimes it seemed my “empathy-level” rised and i could cry all day about my father. And sometimes i was just doing the job without any emotions. Take your time to live through these emotions, talk to somebody about it (us here at MN!)

I also felt guilty many times about not doing enough for my father. Some people take their elderly parents in wheelchairs on holidays and football matches and stuff. But i really didn’t have the energy for stuff like that, just like you say. I was his only family left and i could bearly manage the essentials. Don’t feel guilty about it for too long.
Try to focus at the things you might still do: bring your father his favorite food. Watch his favorite movie together. Maybe there is a park near the carehome or they have a garden where you can sit for a while.

@JellyWellyBoots please don't feel guilty! Nobody can do everything and even if you had done those things he wanted (and I bet you have in the past!) there would have been more suggestions and demands. There is no way of knowing when something will be the "last" thing - you could have got the takeaway and then so much time passed he'd have forgotten about it. I spent four months once chasing around doing "last" things for someone, to the detriment of everyone else around. Some of those "lasts" ended up being several times over! They also aren't the things I remember about the person now.

You are juggling so so much!

@DutchCowgirl so sorry That must have been really difficult for you

@JellyWellyBoots don’t blame yourself. You did as much as you were capable of. Remember, we all know what a state you were in. It’s a miracle you did as much as you did. Thinking this morning that I’d never taken Dad on a visit. And when my mother was dying, I went back to work 150 miles away - had I known it was to be only a couple of days of course I would have stayed. We all have to do the best we can at the time, on the basis of the knowledge we have at the time.

It hurts at the moment because the pressure is off you a bit. Your brain has been holding it all together for so long, and now it can let all the feelings out. This is the beginning of the healing. Be nice to yourself

@JellyWellyBoots if you catch yourself thinking “I should…” then please stop and think is it something you MUST do (eg essential care like feeding your daughter and yourself) or is it something that you are putting pressure on yourself to do.

I’m sorry about your dad but it sounds like he is being looked after now. Don’t worry too much about feeling guilty, your emotions will come and go, just try and ride them and you’ll come out the other side ok eventually.

to @DutchCowgirl and @Saz12

@DutchCowgirl , sitting at the bedside was a particularly horrific experience. I'm trying to forget, I hope you manage to.

@JellyWellyBoots , I dont imagine theres many people, who have lost someone and doesnt feel guilt about the time they were too tired to do some small thing.
Just try to keep your head above most of the waves most of the time. Its all anyone can do.

Jellyboots. I really feel for you, I feel exactly the same. My mum has been in a care home eight weeks now and it’s getting slightly easier. I never know how she’s going to be until I get there which I’m finding very hard.

You have absolutely nothing to feel guilty about it is soul destroying. I’m sat here now after spending a couple of hours at her flat sorting through mounds of clothes, how I’m going to deal with her this afternoon when I show her which ones I have left for her, in one box because that’s all she has room for, it’s horrible.
The fact is there’s always something to feel guilty about. You have to be kind to yourself, do something you used to enjoy with your daughter that’s really what your dad wants for you

@JellyWellyBoots Please don't feel guilty. You did everything you could for your Dad and from your posts I can imagine how difficult it was especially when you have a daughter and need to work. It sounds like your Dad has complex and multiple needs which require a whole team of people to look after him. Although he might not like the home he's in the best place. It's also possible he's very settled and happy when you're not there.

@JellyWellyBoots it breaks my heart to read about your sense of guilt
(& I share it, for my little mum)
The point made above, that there would always be another thing that you could have done - this is so true
You gave all you had. More than you had.
Deep down, your father knows that.

@Metoo15 I can understand you saying you don't know how your DM will be when you visit, my DF is the same.

We either have the non verbal version who just points and nods or the mean version who does nothing but moan and make spiteful comments.

I know there's no logic to dementia but when I visited Friday DF was able to speak and he wasted it having a go at me and telling me to call his MP to get get him out the place, what I would have liked us for him to instead while he was "with us" was to talk and actually say he loves me etc

Tara yes it’s so difficult. I’m always anxious before I visit, then usually come home disappointed because I don’t feel I’ve seen mum at all, just this other person that I barely recognise, then just hope that I’ll get lucky next time.
Mum had been having chest pain on Friday and said she wanted to go into hospital and away from this horrible place. When I explained that she’d just had seven week in hospital and couldn’t wait to leave she said I was ridiculous and knew nothing ! And since then she’s all I’ve been able to think about, i’ll be going again tomorrow.

@Metoo15 the reality is that nothing you say or do will be acceptable from now on.
It's very unfortunate.

@Metoo15 I've decided I'll visit once a month, time is meaningless to DF and its all I can cope with.

I thought he was going to harm me again on Friday, he doesn't want to talk to me unless it's about getting him home, before that it was about getting him moved. It's all about him, he's never asked if we are ok, if DM is managing its always about him and how he feels and what he wants. He told me its been two years since he was taken to the home, its been a year 8 months in the MH unit when he was sectioned for being dangerous and 4 in the home that I moved heaven and earth ti get him too.

It’s a difficult decision but I think you’re right. You’ve done all you can and things will only get worse. You could always ring and check up on him. I’ve just phoned mums care home tonight, they’ve said she absolutely fine chatting away to people. See what I get tomorrow 🙄

@Metoo15 your absolutely right, I fought so hard for him to be moved only for him to phone me tell me I was "fing useless" because it wasn't happening fast enough. He is now not allowed to call me. I did say when he moved that I'd done my best and now I will put myself first (he certainly doesn't) same as you I could go tomorrow and get another version again. I don't know what's worse the version that cries or the version that abuses me, either way its just too much sometimes especially as I k ow he doesn't care if I go or not he's only interested in DM visits

I’ve spent over six hours this month registering a power of attorney with my parents bank and putting my step fathers substantial savings into an account paying a higher rate of interest, sorted out an urgent repair needed on their property and organised a gardener because the garden is a mess. As a result of this I’ve missed a deadline for something I wanted to apply for. My step father was utterly ungrateful when I phoned to tell him, moaned about the cost of the repairs and gardener and then got irate when he mentioned something Mum’s nursing home want doing and I said it would have to wait until I returned from a much needed holiday. I’ve no doubt he’ll cancel the gardener. My step father saves in excess of £500 every month and both parents never once supported me through university or at other times in my life when I was struggling. I really wonder why I’m bothering to do anything.

Can you just step back and stop doing it? Bearing in mind you get no gratitude?

@AgitatedGoose I've been through this too, it's exhausting, I have still lots to organise and clear but I've set myself targets and I'll will achieve those things by the end of the year. The saga of sorting DF out last year left me with little free time and I'm just not going to allow that to happen again. It's hard when you feel taken for granted but stepping back seems to be working for me. I've already sold DF car this year and that goes this weekend, I just need to have a new garage door fitted before existing one decapitates someone, clear loft and the aim is decorate another 2 rooms at DM House (I won't be physically doing it this time just arranging).

Thanks @TheShellBeach and @Tara336.

I definitely want to step back and shouldn’t have agreed to take on the POA stuff. The problem is if I resign from this there’s no one else to take it on. I suspect my step father will die first as he’s older so I will be left trying to sell their bungalow in an area where there’s loads of similar properties on the market. My Mum will be self funding in her nursing home once my step father dies and I don’t want the local authority sending me care home bills whilst I’m left trying to get rid of a place that looks poorly maintained. I won’t even be able to sell it for well below the market value as the LA will regard that as deprivation of assets.

You may have a let out. If your dad has a will, the house can’t be sold until someone has probate. You could renounce being an executor if named as one, you can stop acting as attorney for your mother (called “disclaiming”). The LA will find some way to sort it if they want their money.

https://www.gov.uk/government/publications/disclaim-a-lasting-power-of-attorney

@AgitatedGoose my DF is funded by the LA because of being sectioned. We did go through the possibility of self funding and was advised if there is a apouse/partner/dependent in the home it won't be taken I to consideration. If the dementia is quite bad and there were certain medical conditions, again the LA may fund. I did know all the terms and details but can't remember them now but easily found online.

I have joint POA with DM but she's now stepped up and dealing with it all thank goodness because last year she was dependent on me doing it and she couldn't cope. I've said now DF is in a home (which I sorted) the day to day stuff is not my problem.

I learnt very quickly that SS etc will dump everything on you if you show even a small inclination to help so when DF moved to the home I told them not to call me unless it was life or death