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.

Hello OP
This sounds incredibly difficult and I'm really sorry you are going through this. You are being a wonderful support to both your mum and dad but I think you definitely need to look into getting carers in for your dad, if he would be in agreement? It is so tough, I'm so sorry. You really are doing your best.

Hopefully we will have carers in the morning next week and they want us to have a hospital bed put in. They've also offered a bath chair and sadly, spoken to us about having DNR.

Mum just won't commit to anything.

Perhaps you need to report your mum to social services if she refuses to cope. If a hospital bed needs to be put in then you give permission. Do you have power of attorney? You must not allow yourself to be so worn down that you become ill as well.

You need to look after yourself OP. Eat well, get some rest

If he has a terminal diagnosis he should be on the continuing healthcare pathway and have a needs assessment.

The nurses who come to assess will speak to your mum too. Your dad can make his own decisions about his care though as long as he has capacity, but when he doesn't it's really for the nursing team to decide, not you or your mum. If she refuses to have a bed in the house he's likely to get moved to hospital or a hospice. They need to do what is best for him.

I've just been to through similar with my dad (he died at home yesterday) and the hospital bed makes a MASSIVE difference in how comfortable he is and how his care can be provided. Especially once he can't wash himself, can't sit up, needs a catheter (which sounds imminent) etc.

Talk to the nursing care team and take their advice. It will be really hard on your mum though, my mum had to watch her husband die pretty much (he actually died, peacefully, in his sleep with the carer here at about three am).

@VanGoghsDog I'm so sorry about your dad.

Just to clarify...mum isn't refusing so much as dithering. I think shes slightly resistant to anything that make it 'real' iykwim?

I'm hopeful that after yesterday's visit from the practice nurse she will engage more with the practical aspect of things. I will certainly try to gently press home the point about him being moved elsewhere if he can't be cared for at home due to lack of appropriate bed etc. She has already been told it will probably be a necessity if we're to have carers in and Dad is terrified of having to go into hospital again as he didn't have a great experience last year.

I’m so sorry

“ 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.”

I’m wondering why you’d need to do this. Is it a cost issue, does she need full time care?

Could costs be offset against the house? It doesn’t seem right for you t lose a career. What is her health condition?

In terms of acceptance, I don’t think mum accepted dad was dying at all. I can’t lie, the emotional support is hard.

She is so emotionally needy that even if she was to go into some kind of sheltered accommodation she would probably be constantly on the phone/ wanting me there, and the financial aspect is a consideration.

As terrible as its sounds, for various reasons I have never been able to afford a pension. If their house is sold and it all goes on fees I will never be able to retire. And actually I wouldn't mind that if I thought she would be happy and it would take the pressure off me but I know that won't happen.

My job doesn't really qualify as a career at all, although I had made a start towards applying for something more challenging for which I'm assuming the application process is currently on hold.

If that panned out, it would potentially be more flexible and better paid than my current job, so I could work part time which would help.

I understand you need to protect the house

Can you visit once a day or will she say she wants a care home for company?

The other thing is, you can’t control what she does financially, so if she decides on a home, that’s it really.

One tip is to talk about everything as being 'for the moment' or ''to see if it helps' etc so nothing is a permanent decision. If she is dithering rather than openly saying no then this might work. And hopefully once in place she will see what a difference it makes and is unlikely to actively make the decision to have stuff taken away.

Lilac what she really wants is for us to sell both our houses and move in together.

I live with them for nearly 2 years when my marriage broke down and whilst I'm incredibly grateful for their support it just didn't work and was incredibly stressful. We are very different and tbh I doubt we could agree on a home to buy in the first place and our combined budget wouldn't stretch to somewhere completely self contained.

As selfish as it is I love my little home and my own space and at some point I would like to have another relationship which would be a non-starter.

I am already visiting nearly every day (am trying to have a couple of days off a week but something always drops up). If I'm there for less than 3 or 4 hours she complains that I'm not there long enough. It's only manageable at the moment as I'm.working from home due to the virus.Once we got back I'll be unavailable 7.30 - 4.30 Monday to Friday so will just have to wave goodbye to my free time, such as it is.

Dd is 15 but has her head screwed on. Unfortunately her dad (XH) is not in a position to provide any additional support as far as shes concerned.

I just constantly feel resentful, selfish and guilty.

It’s not selfish to want your own life OP

Sorry if this offends but your mum sounds selfish.

You own your own home, I take it? I think it’s important that you make your life a priority and sort out whatever care needs she has, then let her crack on.

You can’t sacrifice your life just to keep her company, which is what it sounds like.

It's what she wants. She had a (imho unhealthily) close relationship with her own mother - didn't leave home until she was nearly forty.

If it wasn't for Covid I'd have a tiny bit of hope that she might manage post Dad. I'm only round the corner, she has a handful of friends locally, still drives and there is a community centre 5 minutes walk away with lots of groups and activities. None of this will be feasible all the while the virus is a risk.

Dad has become almost completely unable even to stand over the last few days which is presenting a major issue on the toileting front. A friend who cared for her elderly dad mentioned the possibility of him having a catheter fitted but they wouldn't do that when he broke his back last year because of the infection risk.

Were going to have to speak to someone on Monday and get the bed and carers in sooner.

Tbh I know my mum would love it if I moved in as well.

But she knows it would be wrong to pressure me.

Also she can’t bear to clear out dad’s things, which in reality means there’s no room for me.

It does sound like care for your dad must be top priority at the moment.

I wouldn’t get a catheter but he might need those things that they pee into? Dad spent his last weeks in hospital and had that.

Goodness, I shuddered typing that. If I believed in god, I’d pray to never get old!

A catheter is necessary I'm afraid, emptying those is far better than trying to get a frail old man to wee into a jug.

I'm not sure why they wouldn't fit one due to 'risk of infection', if this was thing no-one would ever have one. They gave my dad one near the end. One of the issues was that he didn't know he needed the loo so was constantly getting the bed wet, even with pads. Then it needs changing which means getting him up and mum couldn't manage that, even with a carer they struggled.

I've always been very clear with my parents that they could not live with me, ever. I'm staying with mum until the end of lockdown but then, if she refuses to move somewhere more sensible, she's going to have to learn to cope on her own. She hasn't driven for twenty years but is talking about taking it up again, when we got in the car yesterday she forgot to put her seatbelt on and when I told her she said she did have it on - so I cant imagine how she's going to cope with driving, can only hope the person who does the refresher lessons realises how ridiculous it is and tells her that.

Lilac he has a portable urinal but he struggles to 'go' sitting down and lacks the strength even to stand without support.

Ikwym about getting old. I'm going to have a slush fund at some point so if it all goes to shit I can just fuck off to Switzerland on a one way ticket and have done with it.

VanGogh totally agree with you on the catheter front, and I guess they may be more amenable if, with the best will in the world, he's on his way anyway. He fell down the stairs last year, backwards from top to bottom, broke a rib and 4 vertebrae and they wouldn't catheter him in the hospital even though he was flat on his back for over a week until they could get him in back brace.

As for driving, my mum still does, just very locally, but probably shouldn't and hasn't since lockdown. She discovered her battery was flat last week, called out breakdown and it needs replacing so she was on my case to take it to bloody Halfords...have manage to dodge that bullet so far.

Minty I guess dad was “lucky” in that he couldn’t sit up but still managed those

With a catheter, they’d probably have to put him on antibiotics immediately.

I can’t help but think he’s receiving less care because of lockdown.

Mum hasn't driven for twenty years when she had a really bad crash. She's in denial about that.

Dad wasn't put on anti biotics due to the catheter (he had one three times over the period), but he was end of life anyway, so they had him on various morphine and, the last few days, sedative. We just kept an eye on his temperature and gave him paracetemol if he got hot (ask them to prescribe liquid paracetemol early!). You do need to keep an eye on this because a UTI really sends people screwy in the head if it's not treated. And you don't need that on top of everything else.

The bigger problem was the catheter getting blocked and needing to be flushed, which caused him pain and meant getting the district nurse or the GP out and some days they took up to four hours to come.

It sounds as if you need more support. Is your local surgery supporting you with the district nurses?

VanGogh ikwym about UTIs. He was in hospital with pneumonia 2 years ago and contracted a mild one...hardly ever used a mobile and can barely work a remote control but managed to call me from his hospital bed at 6am to ask why I was late picking him up for jury service!

We're in touch with Practice Nurse, Community Nurse team and adult social services. Mum's struggling a bit to.keep on top with who is dealing with what as there seems to be a fair bit of cross over.

The practice nurse has been in touch with the local hospice but he's not at the stage where they will get involved.

I think we need to ask about catheterization and ask about daily carers rather than the alternate days we've currently requested.

My mum got confused with who was who.

I'd ask her if something was going to happen and she'd say she didn't know, noone ever comes here. So I'd say, oh, aren't the carers coming? Yes, they come, but they don't know anything. OK, when did you last see the district nurse? Yesterday. Has the doctor been at all? Yes, this morning So, do you know if x is happening? No, I told you, noone comes here.

I had all sorts of circular discussions with her where she thought she was being very clear but she was telling me totally contradictory things. And you don't like to press it because it sounds like you're interogating them.

Well it's not getting any better, unsurprisingly.

Dad continues to go downhill. No one has mentioned catheterisation (I must ask but am not always there when the relevant people are), and he has been told that he mustn't get out of bed and must use his portable urinal instead, however he does still attempt to get out.

Mum is very hard of hearing, and dad's speech isn't great so sometimes he calls for her and she doesn't hear, especially if she's nodded off. We've put in a loud doorbell with a flashing receiver unit but that only works if he uses it.

We've now been given a timescale of 1 - 3 months. Mum is still fluctuating between denial and just being totally unable to cope, crying constantly etc. Refuses to agree to DNR, has agreed to carers every other day but we've been told it needs to be daily, and we've got a bed and some other bits arriving on Tuesday.

I'm trying to have two days at home each week (I am 3 minutes away in the event of an emergency and call morning, afternoon and evening), but it only makes going back worse. The remaining days I call in the morning and am usually around there for anywhere between 3 - 8 hours, then phone again in the evening.

I am supposed to be working from home, I want to have more time for my daughter. I am squeezing in my hobby but it's always a choice of either that or letting the house go to shit so whatever I choose I end up pissed off.

When the inevitable happens, Mum will be worse than ever. I feel like my life is over.

Minty Although it’s horrendous at the moment It does get better. You and your daughter will come through even though it looks impossible right now.

I'm so sorry :(

I hope the medical people pull themselves together to get the care package right.