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.

So your Mum has admitted it so start being real back.

"I have a child, a job and my own life that I need in order to be able to cope. You have had plenty of other options use them" repeat, repeat, repeat. Tell her that your phone will be switched off for much of the day when you are busy and she will have to wait until you have time to check and respond and she is not to EVER melt down at DD again.

Once you put up that brick wall up, she tests it and finds it ain't shifting she will stop. As you said before the less you do the less demanding she is BECAUSE she wants to be in the victim role!

How about meditating every morning before you even look at your phone.

Tough "love" actually it's just having boundaries. Perhaps you should tell your Mum that her behaviour is making you suicidal and it needs to stop.

She won't make an effort to engage with anyone else while it's no effort at all to have you do it all. You are not your mother's parent. it's not on you to be the strong one, the doer of all things. Did she have friends in the Before Times, go to church, have other family, social groups, WI?

Please learn from my mistakes. When dad died, mum did the whole "he was my world" thing, stopped going out and made me her world instead. That was easier for her than overcoming her social anxiety and walking into places on her own. That was twenty years ago and if I could have my time again I would be doing things differently. I'd be unavailable, pushing her out of the door to go to things and not letting her make my life into her life. It sounds hard but if you are to have any sort of independant life then she needs to have an independant life too. What you start now could be with you for decades - please, don't be me.

My phone has a really dodgy battery, it's flat so often that everyone that knows me jokes about it. I have a battery pack and charging cable in my bag, another in the car - it is never flat but it's been a convenient excuse over the years and now everyone believes it to be true.

It doesn't matter what I tell mum in terms of me struggling to manage, feeling ill, being stressed it's always:

"Well I'm exhausted too...how do you thing I feel...you don't know what it's like for me...if it was my mum in this situation I'd have..."

If I told her I was more or less feeling suicidal the response would be.

"You're being so unfair and unkind to blame me..."

I'm lucky if I get time to have a cup of coffee and take my meds in the morning, never mind meditate, although I'm using the Calm app most nights which sadly doesn't stop laying awake for hours on the verge of a panic attack, and I really don't want to resort to diazepam on a daily basis.

Whatever I try to put in place, it all goes backwards within a week or so.

She doesn't want him to go into a home now, and acknowledged that 'Even if he does you'll still have me being a pain'.

There are really only two ways out of this situation, and neither of them are actually an option.

Every time she starts on the pity party speak over her "bye" and hang up.

The reality is she did zero caring for her Mum or Dad so it's bollocks and you know it is.

Her dad died when she was in her early teens and she lived with her mum until she was nearly 40 (I was 2.5 when we moved out).

I guess that was just symptomatic of the time though, women didn't really move out and live their own then.

Her mum had a stroke at 79, spent 4 days in hospital then passed while we we'd popped pit for lunch. She's never gotten over not being there.

Exactly her Mum wasn't I'll and needy and they lived together.

There is nothing you can do or say that will make your Mum happier so stop putting energy into trying.

For your sanity just stop. Be blunt, don't engage, when she cries or wails say "I'm going now" and leave or hang up.

You are so deeply entrenched in FOG

Does FOG stand for something or is it literal? Works either way tbh

Fear Obligation Guilt

Fear, obligation, guilt.

I am so sorry you are going through this OP

@mintycedric I've read your whole thread. It has many parallels with my own life at the moment. I read your comment "I feel like I only exist for other people" along with your suicidal thoughts and I am filled with empathy for your situation.

You need the support because you can't see the wood for the trees at the moment. You're being dragged down and pulled back in at every opportunity. Your mother is bring very manipulative. I know you care but you must protect YOU. They are your parents and you love them. But the parent/child role has totally reversed. Imagine your daughter in this situation, and whether you would put upon her in the same way?

As someone stated earlier, it's a marathon not a sprint. Overnight stays, dropping everything - could possibly be appropriate in an end of life situation - but can't apply here.

My advice:
Strong boundaries are key. Don't say yes to something if you really mean no. Nothing will make you more resentful.
Don't say agree to something to make a short term stressful situation go away if it makes things infinitely worse for you in the long run.
Get outside help. Use the mantra "what would happen if I wasn't here".
Social services are bothered about needs, not wants. Focus on what practical support your parents need - without your help - as the baseline.
You can't make this better on your own.
Put yourself first. Please. You are a person. You matter.
Keep talking here.

If you just had your mum to deal with and your dad was somewhere safe it would be easier because you could separate dealing with the two of them. Once you've seen the way guilt is used as a tool to control you and keep you in place it's never quite as effective again because you recognise that it's something that is being done to pull your strings and jerk you back into line.

Part of being an adult is owning your choices and dealing with the consequences of those choices but if you see yourself as a helpless victim of circumstance, with no choices to make then you need rescuing over and over again. I am not a therapist nor do I play one on tv but if you've never come across the drama triangle you might find it an interesting read.

I've said it before. This is not all that there is. This is not the rest of your life, these miserable days will pass and life will be brighter again. You just have to keep trudging on to get there.

I have read your whole thread too and sympathise mightily. I have 2 90 year olds that I am now responsible for and sometimes I feel like everyone is taking big bites out of my leg. I gradually got drawn into every day visits along with the endless calls and visits to doctors etc. My mum used to say to every doctor (even the one we saw in the hospice where we went to look at pain management) do you ever see anyone as bad as me? There is someone who posts on a carers forum that as candleabra said think about what she needs not wants and she has had her life you are in the middle of yours. Your life and your daughter’s life are more important.She can make unwise choices if she likes but you must protect yourself. It would be ok if you knew it was just for a short time but people live a long time these days. Don’t sacrifice your life for hers. You can make sure she is ok but as the others say but boundaries in place.

Hi @MintyCedric hope you are ok. How are things with your parents?

AMBOG Life of the daughter isn't more important than life of the mother - but no-one should have to sacrifice their own life to ensure someone else's.

And no-one can help anyone else if they're not in a good place themselves.

I hate the saying "they've had their life" - it's used to excuse all sorts of cruelty to older people.

I agree but if your life has to be ruined to support hers it is not fair. The trouble with families there are degrees of duty and obligation as well as love, which sometimes gets buried with all the other things. I found the statements comforting although it hasn’t made me act any differently. Mum made her choices and I understood them but they impacted greatly on me. You must think of yourself and try and be a bit selfish. I really feel for you.

@mintycedric how are you doing. I check this thread regularly to see how you are. I'm worried about you and you not sleeping and feeling panicky. You sound run ragged mentally and physically. You are in a horrible position. Please know that via this I am thinking and rooting for you x

Hi, thanks all for thinking of me and sorry I haven't posted sooner. I didn't realise it had been a week as I haven't really stopped. Last Weds/Thu was awful. I ended up phoning into work sick on Friday but didn't tell Mum so I got a day at home, which was much needed as between work and Olds I can't remember the last time i managed to get a full Sat/Weds 'off'.

Got my payback with a minor crisis on Saturday and spent the afternoon at theirs. But it all blew over. Lots more drama about toileting issues this week and for the second week running community nurse 'couldn't' come out so phoned instead on Tuesday and told mum there was no chance of any respite care.

Today we've had a call from CHC and a visit from practice nurse who both have said respite care can be arranged and are supportive of the idea. Two weeks initially and then will look at whether he comes home or stays in a nursing home.

Have been called into work on one of my WFH days which has been a bit of a pita and totally unappreciated so not expecting any kind of support from that direction come September. Was asked to go in today at 6pm last night and said i would but needed to finish a couple of hours earlier than usual as it was short notice. Got quizzed and snarled at today for my efforts so that was fun. Still, 3 more working days to go and then I forget about it for a month.

Will spend the weekend attempting to de-hovel my house...hopefully be next Friday I might get a couple of days downtime!

Oh, and got back in touch with local counselling service who are referring me for 6 telephone sessions of stress management techniques.

The most effective stress management I'd like right now would be a winning lottery ticket and 3 uninterrupted weeks in the Caribbean with Tom Burke ...don't suppose I can get that on the NHS...

Please push for respite and when it happens turn your phone off and give yourself a proper break from the mental load!

Hi all, how's everyone doing?

Things have been marginally calmer here, still full on but not so many emergency/panic situations.

I don't think I've managed a whole 'day off' since the sick day I took 2 weeks ago, and naturally XH pissed off on holiday the day before I finished work so haven't had the house to myself for a few hours for about a month. He hasnt actually bothered telling us when he's coming home yet!

Still, haven't felt quite so consistently stressed which is one good thing, and had a really good.morning with Dad yesterday - gave him a mani-pedi and watched a film together.

Supposed to be meeting a friend today - first social event since February. Mum has just called to say dad is climbing the walls with constipation and she thinks she has an infection where she had a tooth out at the beginning of the week, so chances are my plans will be going to hell in a handcart.

On the upside, we have been given the names of half a dozen respite care homes who have spaces available. One looks really promising and we're going to see it on Monday morning. Don't know how long it will take to get him in after that if we say yes.

I hope the two weeks will lead to it being a permanent thing as we really can't keep caring for him at home. On Monday night I had a call from the emergency buzzer people at 1am - he'd managed to get his inco pants off, wee and poo the bed, then tried to get out over the raised bars and got stuck.

He's gone from being constipated and going twice a week to going about 3 or four times a day, and if there's not a carer imminent mum calls me every time, as she can't cope with dealing with it, which is understandable but bloody trying.

I cannot even describe what I'd give for a week in a nice little holiday cottage on my own right now!

Hi there Minty!
OK - just to warn you I'm going to get a bit graphic here.

When someone becomes constipated and this continuess for some time, that person can develop overflow diarrhoea. Basically the more fluid faeces finds it way around the more solid stuff and can leak out. Very distressing and confusing to everyone concerned. Can I suggest you contact the community nurse today and tell her - this can be sorted but needs careful assessment and handling. It's not something you and your Mum can sort out alone. Don't wait until Monday - phone today.

You may find respite care would not be happy admitting your Dad with diarrhoea, in case of infections so it will need sorting before any admission. In any case don't mention the word 'diarrhoea' - call it overflow.

You are absolutely right the situation with unsupported night-time care can't continue and you're right to take up respite care.

I really hope you can find a few hours to spend with your friends - would do you the world of good!

Thanks DPotter...I'll bear that in mind, although I don't think it is constipation as much as dad 'feels' he is constipated.

He was going 2-3 times a week, which GP said was quite normal given what he's consuming food and drink wise. Then for a few weeks he's needed to do 2-3 times a day (quite normally, not the runs).

I think it may now have reverted back. One of the reasons they suspected something amiss in the first place was that dad was constantly feeling the urge to go but nothing was happening.

So I don't think its constipation as such but I will definitely make a note of that for future reference (God forbid!).

Oh and I managed my afternoon out!

Lovely picnic in the park near the sea then walked back to friends for coffee in the garden and catch up with her pet tortoise who she's had since we were 7!

DD met a friend in town at the same time so it was really lovely afternoon for everyone.

Hi sounds like things are a wee bit better. Do you feel with respite being organised there is light at the end of the tunnel. Respite may lead onto full time care home if they fully assess him and see that his needs can't be met at home. So glad you got your day out. Stay strong you are doing a great job xx

I'm so sorry OP. I was talking to my mum today about all this stuff.

I hope he will be more at peace, knowing there's round the clock care and that mum and I aren't so stressed.

Mum will need a lot of support which will be tricky when I go back to work in September. Wouldn't be so bad if the bloody virus would peter out so that social groups etc were running. Staying over one night mid week actually isn't too bad so will continue doing that and seeing her Sundays and hope she can find ways to occupy herself otherwise.