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.

We're in regular touch with a really lovely district nurse. I think we need to ask about the implications of residential care or respite.

The thing that kills me, and it's a bloody awful thing to say, is that I could cope with dad and all his needs...it's mum that I can cope with.

If I could pack her off somewhere for a week and move in to look after dad I'd do it in a heartbeat.

chat

It's virtually impossible to have a sensible conversation with her. She either breaks down, gets passive aggressive or just argues back about everything.

I've just had a chat with the carer and she's trying to convince her to have a second visit every day but getting absolutely nowhere.

I might speak to her friend who's been calling regularly. She was really helpful with the carers/DNAR logistics and said to mum the other day to give me her number in case I wanted to chat.

She cared for her dad at home so I think she gets it.

Problem is that is exactly what your Mum wants...

I think you tell Mum if she doesn't agree to extra carers daily then you can't help anymore as her attitude is making you ill.

It's time to stop trying to be nice and understanding and put your Dads needs first which is increased support from carers.

Your mum can’t moan about the hardship
of it all but refuse help, can she not see how selfish she is being, this is for your dad, I think she is so wrapped up in me me me she can’t see your dad needs this help.
Tell her to step up or step aside.
You are not her personal skivvy.

When your dad gets into respite, seriously, you will be able to cope with your mum much better than now. You will be so relieved that your dad is being respectfully looked after and not hearing any arguing that you, and he will be instantly happier.
Your DD will also feel the benefit of the weight being lifted from your shoulders. After you've caught up with some desperately needed sleep you will feel much stronger.
Your mum will be in her house alone. She, too, will be desperately tired. She will also be desperately scared that you may actually have much less to do with you, so it's highly likely she will start to behave better.
Friday is always a better time to make calls than the weekend so if you can call your parents' GP surgery today that might get the ball rolling.

Another tense conversation via phone tonight.

She clearly feels I'm not doing enough or being supportive enough.

Apparently she's going to the supermarket tomorrow as she needs bedding plants, bean canes and a birthday card.

She'll either ask a neighbour to pop in or 'take a chance and leave him on his own'

She is both projecting and being emotionally manipulative. I would be insistent on respite care for your Dad

She said this evening I should try being there 24/7 for a week without her and see how hard it is.

When I said okay, that was wrong because I was implying I wouldnt do it with her there.

She more or less said that when I'm round there I'm just on my laptop/phone all the time...well yes, because I'm trying to wfh whilst being on standby for them.

This morning I helped dad with toileting, got him back in bed, made him a cuppa and took it up, made his breakfast, toileting again, washed out the portable urinal, made sure he'd taken his tablets.

This was all by 11am on less than two hours sleep. This afternoon from my own house I sorted out funding for the 'domestic help carer' that comes for a couple of hours a week so they dont have to pay for that.

Again she's stated she doesn't want carers in any more often.

The thing is, if he goes into a home she'll be having a paddy about being on her own and not being able to see him. She'll probably also blame me if that happens for not making enough effort.

Exactly so do the best thing for your Dad and you.

I think she wants you to be her Mum... co-dependent, doing what she wants, looking after her, putting up with her tantrums, treating her extra special because she's deaf???

Pretty much...

Wish I was wrong...

You can't win with her, what is the best option for your Dad that is achievable?

When your dad goes into resource you can just ignore your mum, turn the phone off!

*respite!

It would be good if your mum could get some emotional support for herself - maybe CBT by phone? This could potentially improve your relationship and help her to cope better. There is probably a wait list for nhs CBT but it's also available privately.

For yourself, I would agree that more boundaries are the way forward. You have already put some in place which is good but I think you need to do significantly less than you are currently doing and keep to your boundaries - again I suggest phone counselling or CBT to help you develop the skills to do this effectively as it is not easy.

Your parents are very lucky to have you OP, you sound awesome.

Thank you snog that's really kind.

Just phoned and despite the fact there was another out of bed/poonami incident last night (which has freaked mum out as she didn't hear him try to get up and only discovered the chaos this morning), she seems surprisingly ok.

I have referred myself for counselling and got some diazepam awaiting collection (just a small dose for the evenings when it's been a really shitty day - I'd rather manage as I go than increase the tiny daily AD dose I'm on).

Mum doesn't want to go down that road and tbf I can see why. We are already getting so many phone calls and with her hearing it's difficult. I can imagine it may cause as much if not more distress as it's trying to prevent. Besides she's been referred for that and counselling many times before and whilst she enjoys offloading she won't do the actual exercises!

She has admitted that she is a very 'black and white' person and I think she realises it's not very helpful but feels she can't change. She likes to be in control and always has been so this is so far outside her parameters it's unreal.

Anyway, fingers crossed for no more crises! Am beginning to formulate a plan of action and going to discuss this with district nurse on Monday before hopefully commencing a pincer movement with mum on Tuesdya afternoon to try and get some more help in and a specific schedule for when I'm there which would massively help me.

Thank you so much for support this week...I feel like all I've been doing is whinging for about the last ten days, both on here and in RL!

Minty all credit to you for building a plan and pushing on with it.
Would your mum be able to do Spider Solitaire on an iPad or play Candy Crush?
Also maybe you could pick up some pamper face masks x 2 next time you are able as opposed to the breathy PPE ones) and you and DD could sit together. Such a frantic time deserves moments of ‘chill’ when you can.

Rinse my mum loves Spider Solitaire and all the other games although she tends to play them on the PC - she has two, and a tablet so is quite teccy.

She was quite a high flying PA back in the day (think Mad Men type of environment but London based, until she was in her mid thirties) so is so used to everything being perfectly organised and in control - I think all the batting back and forth on this thread has made me realise that that is a huge issue for her, and perhaps I need to be more supportive of that.

I think it's possibly one of the things that's causing flash points between us. I am much more like my dad - very go with the flow, so when I get a curve ball (like the recent toileting incidents) I just go "Oh bollocks!" and get on with it, whereas to mum it's like the sky falling in.

DD and I ordered some pampering goodies last week. We're just about to have a late lunch then she's giving me a facial and makeover!

Did you get uninterrupted time yesterday with DD, Minty? I’m so hoping you and your girl got some precious space, just to catch up.
Interestingly although your DM held down a high flying role, from what you say she hasn’t lived independently, and that may or may be what’s making her behave so unreasonably.

She may be really scared.

Her making negative noises about additional care and posturing that she wants to control things but actually can’t, could be her defence mechanism kicking in. She’s obviously aware things will change for her and she desperately doesn’t want that. She’s also very tired. Not a great emotional combination for you to factor when you are doing your best for your lovely DF and DD.

Yes thank you I did! She gave me a facial and a makeover (first was lovely...not sure about her colour choices for the latter!), then we had dinner and she went to watch TV and chat to friends in her room and I streamed a play I wanted to see and had prosecco and ice cream.

Not bad as recent Saturdays go!

Back to usual today though. Arranged to come round this afternoon, then had a call at 9.30 to say mum needed to go for a blood test at 11.45 so could I come earlier.

Got here, exchanged pleasantries with her and dad then cracked open laptop as back to wfh after half term today. Got a withering look and a comment about 'you should have said if you didn't want to be bothering with us'.

She's not back yet and if she returns much before 1pm I'll be amazed.

I think work will be trying to get everyone back in shortly at least on a part-time basis, so really need to put something in place asap which will probably be hellish.

Oh, and I've got a counselling assessment booked for Weds morning, with a lovely guy I saw a few years ago just prior to getting divorced.

I would tell them both Thais afternoon that you have been told as if next week you will need to go into work so the number of care visits needs to be increased now (will take a few days) as your availability during the day time will be zero...

Far easier to say it now and dial back "oh I've managed to negotiate that I can WFH 2 days per week so I can sit with Dad on those days".

Yes, that's what I'm thinking, although I'll wait until tomorrow when district nurse visits for backup (wimp!)

cracked open laptop as back to wfh after half term today. Got a withering look and a comment about 'you should have said if you didn't want to be bothering with us'.

Presumably you want to keep some paid leave for a) emergencies b) holidaying with DD so is she proposing that you take unpaid leave every time you are round at their house (which will cost you £n / day)?

Perhaps worth saying, "Look Mum, either I work while I'm here or I get £n/ day lopped off my salary, which I was hoping to (support DD with/pay the carer with/save for my own old age with), so it's not the normal host/guest situation, please don't take it the wrong way."...
That is, if you think it will make a blind bit of difference.

Did her parents die quickly and tidily by any chance?

Great idea when the district nurse is there!!!