Dad dying, how to cope with Mum

[MintyCedric]

I was on here about a year ago after my dad had a bad fall and broke 4 vertebrae.

To cut a long story short, although there was no spinal cord damage and we got him home after 7 weeks, he never really recovered and his health and wellbeing has been on a downward trajectory ever since.

Shortly after lockdown he became largely bedridden (other than going to the bathroom) due to weight loss and lack of strength/balance. Verdict of 2 x GPs and practice nurse is that it's likely he has some kind of late stage gastrointestinal cancer and a prognosis of a couple of months at best.

Over the last week has been struggling to get to the bathroom (he has a commode and portable urinals in his room.but I've had to hold him up to use the latter. Today he made it out to the loo but I had to lift him off it).

Mum seems to be somewhat in denial and is not really managing to make any decisions about equipment and carers, and emotionally is utterly exhausting.

I'm visiting them almost daily, sometimes for several hours or more than once, but feel I'm spending all my time propping mum up. I want to be supportive but I'm also trying to work from home, keep an eye on 15yo DD (who is great but starting to forget what I look like), keep my own home/paperwork under control and look after myself (which is frankly a lost cause).

I feel guilty as hell for both resenting Mums demands on my time and brain space, and also because I'm dealing with the dad aspect on autopilot and have barely cried or even begun to process the situation.

I imagine my mum's emotional demands will only get worse and feel like my life is basically going to be over for the foreseeable future. I'm terrified I'm going to have give up work and my home to care for her and although I love her dearly, we are like chalk and cheese and I just don't think I could cope.

How's your Dad been ? Hope all ok, we haven't heard from you in a while ?

You haven't posted in over a month - Hope all going well ?

Absolutely good for you OP! You deserve a break and time to yourself. There really is only so much you can do! I’ve been following for a while now and I’m so glad to see things are on an even keel!🙂 how will you work Christmas? Will you spend part of the day with them?💕

So here we are...a new year, and I'm sorry but I just need to vent somewhere.

When Dad broke his back in Jan 2019, we didn't know if he'd make it. He wasn't in a great place, particularly with his overall mental health and well being beforehand.

But he 'recovered' and came home. Even so I had doubts that he'd make it to Christmas but he did, although he was having other issues and starting to lose weight by then.

By the end of February he had taken to his bed and at the beginning of April we were advised 'suspected gastrointestinal cancer...with a prognosis of 1 - 3 months.

When that passed it switched to 'end of life frailty' and here we still are. He has deteriorated to the point that he needs help with every aspect of physical existence...completely bedridden, incontinent, barely able to feed himself, his vision severely impaired as he's been unable to have his cataracts or glaucoma treated. He's away with the pixies most of the time and on the rare occasions he isn't he is full of anxiety and sadness. Luckily this only ever seems to last a few minutes, before he slips back somewhere between sleep and hallucinations again.

But his vital signs are all OK, so we just carry on.

Carers twice a day to wash and change him but otherwise we're on our own. The end of life care hub's standard advice for everything is 'give him oramorph'. He hasn't see a GP in person since August, and on the rare occasions the practice nurse has popped in her verdict has been 'it's just part of the natural progression'. The local hospice has rejected the GPs multiple referrals for support. Social Services say there is nothing they can do for us.

I'm here 5 days and one overnight a week.

I've now had to take a career break so will be dependent on benefits for at least the next 9 months. Dont have the brain space or energy for my hobby anymore. Can't see my best friend as we're in Tier 4. A lot of my close friends are spread around the country so haven't seen any of them since 2019 and won't be able to for the foreseeable future.

I can't remember the last time I spent 48 hours all at once in my own home, and can see no future at all. Trying to deal with my mum emotionally is literally sucking the life out of me.

I am done. I can't actually be done because I have my lovely 16yo DD to consider so 2021 I guess is going to be about making peace with this half-life I'm going to be living for the foreseeable future.

I just want it all to be over.

Minty I have no words of advice. You shouldn't be having to deal with this on your own and with so little support.

Just tried to talk to mum.

If I make any attempt to express my feelings it just all comes back to her and she gets angry and tells me I obviously don't want to help and they are a burden so just don't bother coming round any more.

All I want is come appreciation and understanding of my need for some boundaries/space to look after my own home/child and mental health...

...and maybe some support from the 'powers that be' to do that but that clearly isn't going to happen.

Will speak to GP on Monday about being referred back to counselling/mental health team and I suppose up my dose on ADs so I'm incapable of feeling anything.

If I see/read one more 'happy new year, things can only get better' post I'll scream.

Attempted to come off social media last night but its literally my only contact with the outside world.

Mum won't stop crying so I can even go home

can't

Honestly if I didn't have my daughter I'd be going home to take an overdose

Wouldn't be the first time I've considered stealing dads oramorph and using it a mixer for my gin.

I'm so sorry you're going through this.

What would happen if you weren't there ie you lived abroad? Surely the hospice or social revives couldn't leave your dad and mum to get on with it alone

Who knows?

The point is I am here so that's that. Just have to keep going for everyone else.

As an individual I may as well not exist

You poor thing. You need more support so you can have a life. Are your mum and dad paying for the carers privately or are they funded?If funded then phone adult social services and say that your father is at risk as you are unable to continue to provide support. They need to carry out an urgent risk assessment. They may then increase the carer visits. It sounds like your mum will guilt trip you if you try and withdraw which is so unfair but maybe she will respond better to professional advice.

Can you tell your GP that is how you feel.
Maybe you need time away for medication and therapy for coping strategies, then the agency’s would have to step in to help more.

I've just read back further and realised you have already tried so much. If your mum has capacity to make decisions then she must also bear the consequences of her stubbornness. Try and take care of yourself. You have gone above and beyond. It really is a shit situation and you deserve better.

It'll make no difference.

Dad is on funded end of life care, 2 carers a day plus a companion carer once a week - a man in his 60s who mum has got far too dependent on which is also causing issues.

She doesn't like the 'disruption' that the carers cause. They have enough money to fund more support but she won't use it at 'we've paid our taxes' and there is the automatic assumption that I will sacrifice my entire life to plug the gap.

Tbh it's the emotional rather than the physical load I am struggling with. And the fact that there is no future.

Once Dad is gone I will still have mum to deal with and if Covid is ongoing there will no social/emotional support for her so I will be all there is, and ill have to go back to work at some point so will be juggling that again too.

I just need to find a way to accept that in any real sense my life is over for the foreseeable future.

I see other posters writing about parents in their 90s and it just makes me want to kill myself even more. I can't do this for another 8-10 years

minty I am so sorry to read this. It must all feel so helpless.
Can you get out for a couple of hours ? Walk? Zoom with your friend?
Your mother is a black hole and will devour you.
You deserve a life of your own. And your dd needs you.

I didn't want to read and run but I have to as I'm off to mum's now. I had a similar conversation with my son last night, in ten year's time I will be in my late 60s. I would like to have had some sort of a life by then while my knees and health are still up to it rather than sacrificing myself on the altar of care. If I was the son then my mother's expectations would be lower but the daughter's role is different. I've had "I'm not having strangers in my house", "I'm not paying for a cleaner" and the unspoken ending that I hear is "but it's ok for you to do it".

When your mum is living alone the playing field changes. She will have choices over accommodation that she doesn't have now, choices that don't involve you.

The only way out of this is through it. Buy yourself a year's supply of vitamin D tablets and tell yourself that when you get to the end of the bottle then life will be better.

I’m so sorry, Minty God, there’s no words really, are there?

She doesn't like the 'disruption' that the carers cause. They have enough money to fund more support but she won't use it at 'we've paid our taxes' and there is the automatic assumption that I will sacrifice my entire life to plug the gap.

I’m sure you’ve already gone through this so many times, but please just keep insisting that paying for more support is the only option.

Is another respite care period in a nursing home possible?

If not, can you declare for yourself that you will be taking a week’s respite - a week off - and so your mum will need extra carers for a week? Might that be more acceptable, a time-limited breathing space?

The only way out of this is through it. Buy yourself a year's supply of vitamin D tablets and tell yourself that when you get to the end of the bottle then life will be better.

Haha! I do take Vit D and need to order some more so I might just try that.

I do feel better for venting but sorry if I've brought anyone else down in the process.

I had a lovely positive chat with my best mate yesterday afternoon but have been feeling like shit since midnight.

Going to go home shortly, make myself do some writing and start reading The Selfish Pigs Guide to Caring.

I think the week off for me would be great, if only I could figure out how to broach/navigate it. Honestly I'm tempted to just say I'm having to self-isolate but feel like it would be tempting fate a little too much.

As for respite for Dad...when he went in in August it was probably the most God-awful, stressful 4 weeks of my life as was having to deal with mum being alone and in histrionics every five minutes, taking her to see him, visiting on my own account, micromanaging the communications between her, CHC and the home. It was frankly fucking horrendous. I was referred to the community MH team by the end of it for suicidal ideation but by the time they got in touch things had calmed down.

Respite for your dad not a great idea then! But respite for you is what’s needed, definitely.

Can you tell your mum your GP has advised you need a week to rest, and advised you to arrange extra carers otherwise you’re at risk of a breakdown? Would she listen to the voice of authority from a GP regarding you?

Otherwise, no reason why you can’t be track and traced... except it won’t give you the planned break so more panic whilst things are arranged last minute?

She could manage for a few days physically...she's just so emotionally needy...literally a RL dementor!

Tummy bug might be the way to go...🤔

I'm so sorry OP I totally get what you mean by your mum being an emotionally needy dementor. I have zero advice as we are in different countries and all I can do is let my (childless) sister vent at me and my brother, both half the globe away. You are doing everything you can. Take care of yourself.