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.

It shouldn't matter about the diagnosis - he's managed to get CHC without one and your palliative care team should be for all diagnoses, not just cancer. I think the referral has been done v badly.

Conveen wise - most families never touch it - it's all done by the carers. I also don't see why he can't have a catheter, no-one is going to care about infection at this point You just need carer visits sufficient times a day and you and your mum would have nothing to do with it. Same for a catheter.

I'd agree that you have been too 'fluffy' or competent with the DNs. This is DN territory rather than Practice Nurse. If you keep coping, they will leave you to it.

If each time he was on the floor you dialled 999 to get him picked up again, or called the DNs every time you were concerned about continence or whatver issue, rather than you going round to pick up the pieces, he would be a lot higher on their radar and they would be on your mum's back saying she needed more care and the situation wasn't tenable.

We emptied the bag, but it doesn't ever need doing immediately, just do it once or twice a day. It's easy to do. Unpleasant though, it wasn't like normal wee :(

I cannot tell you what I would give to just be able to stay at home and disengage from it all for a week.

This is exactly what we are giving you permission to do, and not just for a week. I am personally giving you full permission to do the following:-

Spend time (2hrs+) with your DD every day - watch a film / bake a cake / paint nails
Go into work as work are requesting
Go for a coffee - with DD / with a friend / by yourself
Write 300 words
when your Mum phones as your Dad has fallen on the commode at whatever time f day / night - call 999
tell the practice nurse you will not be providing care for your Dad as of tomorrow as you're back at work
Tell your Mum the same
Visit your Mum and Dad for an hour per day, absolute tops. To chat / read to your Dad. Do not undertake any personal care for your Dad. Do not try and solve your Mum's problems- just say 'I don't know Mum. Talk to the GP'

There you have permission to step back , disengage, protect your own physical and mental health. You are all in this for the long haul. You don't run a marathon as if it's a sprint - you have been running like it's 100m and you still have 24 miles to go.
Tell your Mum some bossy woman on the internet told you to do this.

Well said dpotter! Make that two bossy women!

& me, please for the love of God step back so I can stop banging me head against a brick wall.

Things will improve longer term when you step back. For as long as you carry on as you are they will only get worse.

Another firm vote for every word of DPotter’s advice here. It’s tough but really the only way.

I’ve just read through the thread and feel for you so much dear Minty, been there too but not as acutely as you are now suffering you poor love.

I have no better advice than go back and read DPotter again and do it!! Also you are a lovely kind daughter with nothing to feel guilty about Xxx

You are all fabulous and probably keeping me sane .

Popped round for a couple of hours this afternoon. Had a firm talk about increasing care but still only partially getting through. She's taken on board a longer visit in the morning, dubious about the suppository and on the fence about revisiting the Convene. Still resistant to the idea of increased afternoon/evening support...'would you like all these strangers bobbing in and out all the time'.

Well, no but I would accept that if I felt that strongly that I was unable to cope it was a necessary evil.

She called as I was getting ready to go round to say that dad had gotten himself put of bed again and she'd had to dash upstairs to hell him to the loo and couldn't get him back. She was in the bathroom with him when I got there and he was a complete dead weight but managed to get him back to bed. Took up a scone which he didn't think he could eat but polished off the whole thing and we watched a bit of documentary about Gregory Peck and made plans for Father's Day (Ploughman's lunch and a black and white movie) .

I've told mum I am going in to work the same days DD is back at school from Thursday onwards and that I'll pop in tomorrow to facilitate her going to a GP appt and have a coffee but it will be have to around my work commitments and ferrying DD about.

I'm going to contact the DN in the morning and explain that mum's not fully engaging with the care options available but I'm going back to work from Thursday and won't be around as much so she will need support putting appropriate care in place for both their safety and wellbeing.

The difficult thing is that while they could do with your mum's cooperation, it's your dad's needs that are not being met here!

I think this is why social services would be useful. Might be worth a chat with them tomorrow?

I agree with everyone else though, you do need to step back. When she calls because he needs the loo, say (deep sigh) "this wouldn't keep happening if you had the......[whatever] for him". Etc.

"I'm going back to work and won't be around anymore apart from the occasional cup of tea social visit"

That's a good start Minty.

Use us here as much as you need to.

Please don't try to pick up your Dad from the floor - even if you're there. A person who can't weight bear is very difficult to move and you need special handling training to do it safely for the both of you, especially in confined spaces like a bathroom It would be so easy for you to hurt yourself and your Dad.

There's nothing like someone in uniform turning up and telling a patient not to do something that's dangerous for them.

DPotter it's okay, he wasn't on the floor, just needing someone to stand behind him and give him extra support.

Sometimes it feels like a 'just in case' precaution, otherwise it's definitely supporting his weight, which is getting trickier especially now his coordination is getting much worse.

*he wasn't on the floor, just needing someone to stand behind him and give him extra support.

Sometimes it feels like a 'just in case' precaution, otherwise it's definitely supporting his weight*

The same applies - what if he falls when you're holding on to him? The natural reaction is to hold on tighter to stop the person falling. And that's the way you hurt yourself. Get him to sit down on the toilet / edge of the bath and then wheel him back to the bedroom (wheel chair / wheeled commode).

but I tend to go into defensive humour mode in difficult circumstances and had probably not made it clear enough how much we and particularly I, am struggling. Yes, that's a mistake. It never does to put on a brave face to the medical/caring professions. They take you at your word.

Of course the medical / caring professions take you at your word. To do otherwise would be patronising and arrogant.

There's no shame in going back to them and saying 'Things have changed and I need more help' .

Oh and another tip - take any help they offer, even if it doesn't quite answer your needs. There's a hierarchy of help and support on offer and it can be difficult to jump the steps.

There's no shame in going back to them and saying 'Things have changed and I need more help'

That's exactly what I've done this morning. Usual DN is off this week but I have someone else calling me tomorrow. Woman on the phone was really lovely. I explained that at the outset we had the impression it would be a very short term situation, but now it appears we're in for a longer haul we need more support. Told her that I was phasing back to work from Thursday so would not be around as much and that I was worries for both mums and my mental and physical health and for dads safety.

Dont suppose mum will thank me for the interference, but it is what it is.

Also pointed out that the potential for more support is there but I am struggling to get mum to actually accept it.

Good for you Minty.

You'll need to hold firm, especially with your Mum. When she declines extra help, make it absolutely clear you can't help. Things may have to ramp up and include SS team for Vulnerable people (or whatever it's called by your LA). I say this to warn not to scare, so you can get your head around the idea.

Oh don't worry the whole social services thing has already occurred to me. If it has to happen so be it.

Mum also called to ask to speak to DN this morning. Assume it was a combination of that and my call, but she had a call from one of the care agency coordinators wanting to do an assessment visit and they were there by lunchtime.

She's agreed to an hour in the morning everyday, which would mean we can revisit the Convene and look into suppositories, and coordinator advised her that dad needs more company and stimulation, which would give her time to have a a break and do some things for herself.

She's going to check out the funding situation (technically the CHCP doesn't cover respite care, but you can claim a certain amount of 'domestic assistance' - our Weds guy is covered as that) and give mum a call tomorrow.

Popped round for a coffee this afternoon - in and out in under 90 minutes, same planned for tomorrow, fingers crossed!

Great news minty . Hold your nerve and enjoy the peace.

That's such good news Minty!!

Of course the medical / caring professions take you at your word. To do otherwise would be patronising and arrogant. To ask a supplementary question wouldn't be patronising or arrogant.

Good news

Well! Mad dash round to mum's this morning as rather than phoning me the DN called mum and asked to pop round (at 10 minutes notice, then showed up two hours later. Anyhoo...)

Dad on pretty good form, and between me, DN and care manager we seem to be making some progress. We talked through the fact that he and mum need a lot more support and tried to address mum's issues about invasiveness and how much they would actually be able to do at set times of the day. I gave the DN my suggested carer timetable (which mum has also seen and we've tweaked a bit) and she's going to liaise with care manager and the funding team to see what they can put in place. I told her I was wfh full time and going back in 2 days a week from Tuesday.

They won't consider the use of suppositories to regulate Dad's bowel function, but hopefully with more carers in it will become less of an issue. She's also ordering a zimmer so he can take some of his own weight when transferring to the commode.

We've decided not to revisit the Convene at the moment as Dad wasn't overly keen and inco pants are working okay at the moment. His skin is great condition despite being bed bound since mid-March and in the pants for the last few weeks.

As for me...I have made an effort to take my meds properly since the weekend, cut back on the alcohol and get a few early nights, albeit with the help of a tiny amount of diazepam as all the 'dad anxieties' pop into my head as soon as light goes out. On Sunday I had a nightmare about him dying on his own in horrible circumstances; last night just as I was drifting off I got an image in my head of him having a seizure (which has never even happened) and a few weeks ago I woke up with a start having 'heard' someone tell me 'he's dead' (obviously he wasn't!)

I am thinking of touching base with the local counselling service again to work through that side of things, but I do feel so much better today...fingers crossed that will continue.

Minty if there was a Mumsnet award badge for ‘elderly parents’ you have truly earned yours these past few months.
Good that your DF still has a view but sorry to hear about your dreams. (Not that uncommon with those meds.)
Hope you and DD get uninterrupted time tonight.

I am so pleased things are getting sorted for you all.