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.

Yes...and yes!

I literally can't do anything else. I will either be back at work next Friday, or depending on outcome of GP/AT team referral signed off because I'm too unwell to cope with it all.

If the latter happens I have no intention of telling my mum.

If she has an appointment as a grown up she can sort it, you are not her taxi service.

Reasonably peaceful 48 hours notwithstanding being DDs taxi service and work colleagues encroaching on my holiday .

Stayed at mums last night and we had a good time which was nice. She cooked one of my favourite dinners and I washed up and introduced her to my favourite TV detective on iPlayer.

I helped her out with a couple of things but only within my limits and she accepted that. Not sure how long it'll last but it's progress.

However...

Called to arrange to pop in and see dad this afternoon (wasn't planning to but DD wants to visit and has other commitments over the next few days) and they mentioned there is a letter up there that needs signing by me or mum.

Mum has subsequently had a call from.the community nurse to say that as dad has no further nursing needs, she is signing him off and if we need anything going forward we're to contact the Echo team (end of life care hub).

No explanation as to what this really means. It sounds like they think he's nearer the end perhaps?

it's me no one is keeping you in the medical loop!!!

Could it be that as they assume he is now in the care home for the foreseeable future their dept has closed his case as they are no longer required?

He's not in the community any more is he, so I suppose they close his case. Something for your mum to rearrange if she chooses to bring him home

I don't think it is that, and I think it's more than likely that he will come home with an enhanced care package in couple of weeks.

I've seen him a couple of times on my own this week. The home is lovely but he's consistently saying he wants to come home. Tbh given the worry about him not being happy and the regular visiting, I'm not sure it will make a massive difference in terms of stress levels.

I will make it very clear that I will not be available Mon-Fri or for overnight callouts however.

I think it's best the 'powers that be' think im pretty much out of the picture then anything o can do qill be a bonus.

Honestly, I just want to take care of my dad. I feel like I'm the best person for the job (with the support of carers) but the long term implications are untenable.

I took DD up to visit him today. His speech is barely intelligible now. He made such an effort to say goodbye to her so she could hear him.

It was absolutely heartbreaking.

Has he had any sort of assessment to check that he does have full capacity? I don't think he understands the full consequences of him going back home not the impact on yourself or Mum.

Oh Minty it's such a tough situation. Take it a day at a time and try to find the small joys in each day. Sending positive thoughts to you all.

Minty if you see your lovely DF wilting a little - even with a team of round the clock experienced care staff- then maybe it’s right to hang out with him all you can and just be a daughter. While your natural instinct is to help and be active in his immediate care, could this be the start of the next stage? Sitting with him quietly without your DM hovering might be the best way to spend the next week and push thoughts about September to the back

Rinse I'm due back at work a week today. Still haven't heard from MH team yet although GP followed up day after my convo with the counsellor.

Am just going to see how I go between now and then. I'm dreading it (actually had nightmares last night) but if I'm on an even keel over the next week will see how I go.

Random I think he does understand. We've discussed at length what's involved. If we said 'no, it's not happening' I suspect he would accept it.

I'm at a point now where whatever happens I'll just roll with it. In theory it would of course be better if he stayed put, but I can't push for that in good conscience knowing how he feels.

Regardless of what the community nurse has said, I've done my own research and he's at the final point on the frailty scale. A bog standard cold could kill him so with winter coming the clock is ticking anyway. He may as well be where he's happiest.

It was actually a bit better when I was at work as there were built in boundaries.

If the extra two weeks respite gives us the chance to get some practicalities sorted and an enhanced care package in place it may not be too bad.

Local hospive have confirmed they are able to step in when we really hit the final stages and can provide overnight care etc.

Guess all you can do Minty is follow your instincts. Lots of us here to listen and support. I thought that respite care would bring less confusion and a bit more order into your day to day. It’s Sod’s law that it’s not really been given a chance to bring rest or comfort through no fault if your own.

I was hoping both of them would have settled into a new normal and he would stay in the home.
I can feel my anxiety levels rising about him going home, and I am on the other side of the world, Not dealing with everything like you are.
💐🍰☕️🍸

Mum's just messaged and is hoping to bring dad home Tuesday week.

She's planning to set up the spare room as a kitchenette, and being the commode he no longer uses downstairs for herself, so she's got both catering and toilet facilities on both floors.

She planning to make more use of the carers and I've suggested she looks at reinstating the weekend midday ones and either having 4 visits a day or 3 and a couple of longer sessions.

She's spoken to the OT about coming out to reassess him as his mobility has deteriorated since last time and she's on board for that once he gets back.

She's now off to pick up her click and collect shopping and then go and visit dad.

I'm sure it'll only be a matter of time before it all goes to hell in a handcart, but for now will make the most of her newfound independence and an empty house.

As long as you keep all phone lines cut, it won’t be your problem. I’m wondering if she wants your dad back because she misses him or the attention (and you dancing to her tune.)

My parents would have pulled exactly the same stunt if in similar position. My MIL also. Others on here will concur that something about ‘beating the system’ and out smarting
off spring to remain at home becomes obsessional.
Minty - don’t take their actions too, personally. They are ‘up against the world’ and not you.
The carehome staff will know it won’t work. I’d keep on good terms with them in case he’s back there in a week.

It looks as if she's recognising that she needs to make changes for things to work better. I am sure that previously you've suggested having drinks facilities upstairs so she could spend time upstairs where she would be on hand rather than trudging up and downstairs all the time. It's more accepting of things as they are rather than thinking he'll be up and walking about next week. She's actually doing something rather than hand wringing and being a helpless victim.

She's making all the right noises here, this could potentially work.

knot

I'm inclined to wonder whether she thinks that if she gets him home she'll have more control over trying to 'get him better'.

I suspect it'll be swings and roundabouts whatever path gets chosen, but she does seem slightly more amenable to changes.

Also discussed having today to myself yesterday as DD is her dad's and she's been brilliant, very respectful of my time. We've checked in with one another via messenger but that's it.

Will call her for a chat later.

Are you sure that it's not alien abduction? She seems to have suddenly become more reasonable. Are you being sweetened up for something?

Who knows?!

My best mate did say she would have a word, if I wanted her to. I wonder if she's said something anyway.

Or perhaps my email sank in.

I genuinely want to help them both, just need them to realise that I can't be the only one they lean on all the time and I need to look after me and DD too.

When we get on it's really lovely.

I worried you were being sweetened up too tbh...

There's been some subtle trying it on which I've met with a bit of grey rock.

She actually said something the other day that made me wonder if she'd found this thread

Pack it in, OP’s Mum. You’ve made your choices.

Feeling really low today. Had a message from (lovely) colleague which I think has just brought back to a head the anxiety about returning to work.

Round mum's at the moment, she hasn't done or said anything 'wrong' but I already feel horrifically on edge and tearful.