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.

VanGogh to be fair it's my mum's refusal to engage and make decisions that is difficult but I can't just take over - she's next of kin and would go batshit as I have very different ideas to hers.

It's impossible to imagine coming out the other side of this, because once the inevitable happens, mum will not be able to cope emotionally on her own and will wanting me to move/sell both our houses and buy somewhere together. I moved in after I let my XH for nearly 2 years and although I love her dearly it was the most difficult and stressful time of my life, and not just because of the divorce.

We are very close and always there for each other when the shit hits the fan but we are also like chalk and cheese and really don't 'get' each other at all - from political opinions to food to hobbies - absolutely nothing in common whatsoever.

If we could find somewhere with a completely self-contained granny annexe I would consider it, but our budget doesn't stretch that far, we'd never agree on the house/location itself, and she has no respect for boundaries.

I can't process what's happening with my Dad because I'm having to be strong for her and so worried about what will happen after he's gone I just don't have the brain space to grieve.

When the inevitable happens, Mum will be worse than ever. I feel like my life is over. Yes, it will be shit for her. But there's no overall profit if you ruin your life in order for her to have hers. Start thinking now about how much of your life you are prepared to give her, and get ready for the fight ahead as you defend the rest of your life against her demands.

Remember how we used to talk on here about Teflon shoulders? I takes toughness to hold the line that an emergency is she's lying on the floor after a fall, an emergency is not "the kettle isn't working and I can't have a cup of tea".

I know...and she might surprise me. She coped better than I expected when dad was in hospital for a couple of months last year, but she had the thought that he would recover and come home then.

She is an absolute master of manipulation and emotional blackmail when she wants to be, and as much as try I still end up feeling selfish and guilty.

What's really grinding me down at the moment is that everytime I call she answers the phone either breathless, angry or tearful and sometimes all three. She constantly complains that she's having to go up and down the stairs all the time and that she's exhausted and dad keeps calling her, but whenever I'm there it just doesn't happen so I don't know to think. Then there's all the passive aggressive comments..."I know you've got more important things to do...don't bother with us..." or when I say "see you tomorrow" I get the response, "Well, I hope so..."

It's so fucking draining.

Oh and when I suggest solutions to the issue of going up and down the stairs, she just ignores them.

I did tell her this morning that if she won't take advice, she can't complain.

Minty when my parents’ troubles started to escalate out of control it was literally like being a passenger on a runaway bus with them in the driving seat and me flailing about in the back without a seatbelt. After years of warnings theOr bus inevitably crashed. Once it crashed we lost one of the drivers. However, we regrouped and there was a major power shift so we were able to take the driving licence from the other. Don’t look too far ahead. You are having the toughest of times but when you reach the absolute point where they have to change or you can’t proceed, inevitably something happens. Sending virtual support.

Thanks Rinse - that's weirdly reassuring!

I had counselling when my dad was in hospital last year and it really helped with the 'one day at a time' thing.

Covid is making things better in some ways (I'm quite introverted anyway and being able to work flexibly from home gives me more time for The Olds), and worse in others (absolutely nothing to look forward to - although I suppose we're all in the same boat on that front).

Great advice on here minty. Just take a step at a time. And carve out small bits of time for you. Essential self maintenance.
This could be a long haul.
🌺

@MintyCedric
You are in a difficult place and are giving huge support to your parents.
Please stand firm that you will NOT move in with your mother.
You say she still drives, so still able of
being independent, I don’t know her age but you could be stuck living with her for years, you and your DD are entitled to your life.
If she brings it up, just say “I don’t think that will work”.
I support 2 elderly relatives and caring can bring you to your knees and quickly.

Another key element of counselling is boundaries and you really need to work on yours. I know they are your parents, but no-one benefits if you are completely worn down. Having been through this with my parents you absolutely have to draw the lines or they will trample all over you.

Setting boundaries means, ironically, that they will learn to cope when you are not there and/or social services will step up more. At the moment neither has any incentive to do this because you are always available. However much time you give will never be enough so stop trying to satisfy your mum right now.

You say you are spending anything from 3-8 hours there on a fairly ad hoc basis whilst trying to keep a couple of days for yourself. As PP have said, this will be a long haul and you need to look after yourself.

I'd suggest a timetable which you put up on the wall where you go two to three times a week for an hour each time e.g. "Minty will be here 6-7pm Monday and Thursday. Telephone call Saturday 6-6.30pm. For any emergency phone [carer's details]." Treat those times as set in concrete and do not be guilted out of them or into extending them. If your mum makes passive aggressive comments just refer her to the timetable.

One of your visits should ideally overlap with the carers so you can brief each other accurately or arrange a periodic catch up call direct with the carers.

Your mum will moan like mad, but if you stick to it so will she eventually. If she calls outside those times let it go to voicemail. If she calls up asking you to come round then either (i) tell her to phone a carer (preferable) or (ii) if you feel you must go then that visit swaps out with one of your regular ones.

Do not give up your career or your home. I understand the daughter guilt but you are also a mother and you deserve your own home life.

Having just experienced this, you can't phone the carers. They come at the time on their schedule. They don't hand over between themselves and there is nothing to brief them on really.

Op - your mum may be next of kin but medical staff have to do what is best for the patient, not what the nok wants.

I'm now staying with my mum until after lockdown at least. We can't have a proper funeral - I hear you re not being able to process grief. I will be getting some counselling after this over!

OK I have just read through all this and am giving you a socially distanced hug.

Firstly - your Mum does not have to agree the DNAR. It's a medical decision. She may not like it but it reflects what is medical reality - resuscitation has no hope of success and your Dad would not want to go back into hospital at this point. The GP just needs to get on and write it.

Secondly - are the community palliative care team involved? And if not why not? This sort of situation, particularly dealing with your Mum who can't make a decision and is hugely absorbing of your time is their bread and butter.

They may not be based at the hospice but he needs referring NOW before you go insane.

There doesn't seem on the face of it any reason why he can't have a care package with carers four times a day, a catheter, the district nurses doing his catheter care and you having a short phone call/visit to your mum and dad every other day.

^ mums only agreed to care every other day, which would be a legistical nightmare, which professional does she trust the most? Can you get them to support a discussion reconciling what mum wants and what dad needs. I agree with others re the dnar- it's a medical decision. Op it sounds like your doing everything you can to support your parents. Your mum is simultaneously saying she can't cope and refusing help, you know your being emotionally blackmailed, if she can still drive you really dont need to move in with her soon. Your a bloody great daughter x

Just a thought, what about a bed downstairs? Would help your mum with the stairs situation. Hospital beds can be ordered for you to have at home. Also another option to a catheter is a conven. Less invasive.

There doesn't seem on the face of it any reason why he can't have a care package with carers four times a day,

The reason we were given was lack of resources. He was assessed as needing four visits a day and came out with a package of two visits.

The reason the district nurse took four hours to come when dad was in pain at one am, meaning mum had to stay up from one til five, was lack of resources.

The reason we got no palliative care support at all was lack of resources.

The reason mum had to be awake 24/7 because she couldn't leave him on his own at all, and why I came to stay, was lack of resources. We did get an overnight carer for the final three nights.

The reason it took six hours to get the syringe driver sorted out, presumably leaving someone else waiting hours for their visit - was actually because the district nurse had to go to three pharmacies before she found one that had it in stock and had to queue in a socially distancing manner at each one. Why she couldn't phone ahead I have no idea!

So, on the face of it, medically, it's what people should have. On the ground, it doesn't happen.

Luckily dad had agreed to the DNAR fairly early on when they had suggested an operation and there was a risk he might not survive it. In fact, he was already too ill to even have it.

Thanks so much all!

We've got a hospital bed and table coming tomorrow. Having it downstairs isn't really practical as completely open plan however...

Mum has her own large bedroom upstairs with TV, computer, WiFi and phone. I have suggested she set up tea/coffee making facilities in the spare room so she could be upstairs herself more. Apparently it will 'only encourage me to lazy and not get up early enough'

The GP has been out today, gave dad a thorough once-over and is arranging blood tests which may or may not give us some idea of what's going on, but who knows? On the 'upside' he discussed DNAR with Dad whilst I was in the room and Dad is in agreement. GP and I then told mum this was his decision and she seems to have accepted it at last. He's also organising liquid paracetemol and stronger 'end of life' drugs, so we have them when needed. Local hospice has been made aware but he is not far enough along for them to provide palliative care yet. Can't get any help from Macmillan as he doesn't have a formal cancer diagnoses.

Cost of carers is a sticking point for mum. She's been sent a tome to fill along, along with half a forests worth of photo copies of financial documents for them to be assessed for what they will have to contribute. They are not rolling in it but are certainly comfortable. Paying for care for a few months, even if in full, is certainly not an issue. Mum however is of the 'I paid my taxes for x years, why should I pay again' mindset.

She'll have to get on board eventually (and if I have concerns on the front I'll bloody report her).

I will find out by the end of this week if I have to start going into work anytime soon (secondary school administrator, new rota from next Monday). I think I may have to invent some twice weekly Zoom meetings and a few deadlines going forward.

Cost of carers is a sticking point for mum.

If he has a terminal diagnosis and is on the continuing healthcare pathway, the care should be funded by the CCG.

My parents paid nothing and they are pretty well off.

I could never get through to MacMillan to ask if they could provide extra support.

That's what the nurse who came at the end of last week said.

I think I may have to invent some twice weekly Zoom meetings and a few deadlines going forward. Splendid! That's a good start.

Then there's all the passive aggressive comments..."I know you've got more important things to do...don't bother with us..." or when I say "see you tomorrow" I get the response, "Well, I hope so..." That's where the Teflon shoulders come in. Tell yourself this is not her, it's her stress or whatever. It's just a behavioural tic, not a criticism you need to pay attention to. If you need to, play "bingo" - mentally give yourself a point each time you hear one of the comments. Don't let them get inside you.

Ironically I do now have a deadline so have done today's visit and am 'off' tomorrow.

Has anyone else had the issue with medical peeps turning up randomly and doing things with really awful timing.

Every time there has been a conversation of the particularly distressing nature, it has happened when I've not been there. Today, 10 minutes before I was due to leave, practice secretary turns up to hand deliver the DNAR paperwork and a list of 'end of life's medications.

Mum, tbf was very brave even though she was upset and I managed to get away within half an hour, but it's like sod's law in extremis.

Sorry it's just a rant but I need to get it off my chest somehow...

I am visiting my parents 5 days a week and there for anything from 3-8 hours at a time. I have attempted to designate Weds and Sat as my 'days off'.

Just called mum who is in a state, dad has wet the bed, so she's having to change the sheets, doesn't want a proper wash (she wants to do it now, he would rather wait until later), no carers in today. Mum is saying she'll just have to live upstairs as he's calling for her all the time and even with her hearing aids in she doesn't always hear him. No carers in today, although he's been approved yesterday for continuing care pathway so should have 2 a day in place very soon.

The thing is, when I'm there, he's not that bad so it's really hard to interpret what is really a problem and what is mum throwing her toys out of the pram. I'm also worried because mum is just banging on all the time and I know it's hard for her, but I don't think it's great for dad to keep hearing what a burden he is and how she 'can't cope' and might have to 'put him in somewhere'.

Honestly I wish (and I don't mean this quite the way it sounds) that I could just magic mum out of the picture and move in and look after him myself. But I can't, because Mum. And I can't expect DD to move back there with me, and she can't stay at her dads because they have the foster child at the moment.

I'd planned to sort my garden out today, do some writing, spend some time with DD who I see for a couple of hours a day if I'm lucky, but I feel like I should go round there...again. And then I feel like a selfish, uncaring bitch because mum is round there all the time and my dad is dying but I still want some time to just be me and enjoy my own home and space.

I wouldn't be so bad if I knew that once it was all over there would be some kind of normality and something to look forward to, but even notwithstanding the virus situation fucking things up for everybody, I'll be left to deal with a bereaved mum, on my own. My life is basically over for the foreseeable future. It would be so much easier if I could just accept it.

Oh dear!

Do you really need to go round?

I live three hours from my parents and mum had to cope with all that on her own before we had the care package, plus dad insisted they share a bed, so she woke up with a wet bed too, or had to change it in the night (I did get them the nicer type of waterproof sheets even though at first mum insisted the £2.99 one that was like sleeping on a carrier bag was fine).

I do feel for you, it's a really difficult time at the best of times but with the virus on top it's so so much worse.

We did look into paying for some support but it's so hard to get. Maybe see if AgeUK have any suggestions?

The hard part is that mum is so dramatic and emotionally needy. I find it very hard to be as sympathetic as I probably should be, and worry about the impact her histrionics are having on dad.

No-one can be there 24/7.

I'm just a complete loss as to what to do to try and keep Dad safe and mum happy. lt seems like the only way I can make it work is to just try and shut off my own feelings until it's all over.

minty I am sorry to hear things are so difficult. But you cannot neglect you in this- this might go on for a while and dealing with your mum afterwards will be very challenging. ( sorry to be so blunt)
Can you not go round today? Essential self maintenance. And things always sound worse on the phone. Or a short visit?
Do take care of yourself, and dd... and vent if it helps. 🌺🌺

Thanks sandwich

I didn't go round in the end and haven't spoken to mum since. I will probably get an earful later.

This morning's drama threw me off completely and I've just spent the whole day on the sofa wallowing and sleeping.

That's just self care!