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.

Yeah I have told mum outright that living together is not an option for us...I'm sure shell keep trying to turn that particular screw though.

The bottom line is, apart from the emotional/personality clash issue we would never find a property we would agree on, and for me it would only be worth even vaguely considering if it involved a completely self contained granny flat, which our budget wouldnt stretch to where we currently live and neither of us want to move so that's that.

I have a message from her last night saying she was struggling again. Sounds like having slept all morning Dad was actually being a bit of a herbert !

Herbert? What is that???

Well in my world if someone is a bit of a herbert they are, to quote Monty Python 'a very naughty boy'!

However having just searched to find a proper definition and stumbled across several interpretations on Urban Dictionary I think it's probably something I shouldn't be calling my dad!!!

He was a bit (possibly unnecessarily) demanding!

I am so sorry you are going through these. I had to go through it with my Mum who was on palliative care at home. We went from 4 care visits a day to 24x7 care.

Take as much care as you can and then push for more and don't take no for an answer. Know your rights in this situation.

For your Mum, it is physically and mentally exhausting and the same for you. Once the care starts there will be some lovely carers and your Mum will get used to it and they take the pressure off so much. My Dad got used it even having to have someone in the house all night.

Your Mum will see they know what they are doing, they are really efficient and caring and it will just give your Mum a rest.

Speak to the GPs, the Community Matrons, Social Services and anyone that is there is provide support in your community and get as much help as you are entitled to for both your Dad and your Mum.

Once again I am so sorry you are going through this, it is shit but there is a whole host of people out there that can provide support.

Just a thought, as it's the lack of a diagnosis that's blocking access to care can you go back to the doctor and point out what effect that is having on you and see if they will give a firm diagnosis. They've left you in a terrible position and might not know the consequences that you're living with.

I see what you mean Knot but I don't see how they can. He's too frail for them to do any kind of 'oscopy, blood tests have come back without any markers for cancer so it seems as though his condition is 'frailty' which equates to nothing concrete in terms of additional care.

Weekend has been pretty rubbish.

Call early afternoon yesterday - mum having a diabetic hypo and dad calling her but she couldn't get up the stairs so was panicking. Went round, called 111, gave her one of dad's sugary supplement drinks and stayed for hour until her mmols were up and she was feeling better.

Call from emergency buzzer people peeps at 8.45 this morning - dad had tried to get out of bed again and fallen so they'd 999'd it. Paramedics out, got him back in bed, checked him over, then carers in. I made him some breakfast and then went home for a bit,

Back for Father's Day lunch, which he couldn't manage and he was too tired for a film so my visit comprised feeding him a yoghurt, getting him on and off the commode (finally crossed the Rubicon that is arse wiping) and taking him up with some painkillers for a nap.

He really can't speak now at all - just about managed to understand the commode and tea instructions. He didn't even manage to open his cards and I couldn't face doing it and reading it to them so hoping Mum's done the honours.

Back to work at 8am tomorrow.

Minty - I feel for you. It's very sad to watch someone you love so dearly slowly slipping away.

Don't worry about cards - you are showing how much you love him, with direct loving care and that's far far more important for the both of you. In years to come, you will think back and say 'I cared for my dad during his last illness' and you'll think of all the happy times together and I'm willing to bet, the opening of a father's day card will not feature as one of those treasured memories.

Hope you get some rest before work tomorrow

💐🍷

Hope all as ok as it can be Minty. Thinking of you.

Thanks Grinchly.

It's been a really tough week tbh. Worked all day Monday, Weds and today. 3 hour round trip to meet my cousin and start clearing out my late uncle's caravan on Tuesday then visited the Olds on way back. Will probably have to go back again on Sunday.

Staying over tonight, carers have been. School run tomorrow then straight back here as mum has 2 x hospital appointments and we're expecting care manager, GP and OT to look into getting a hoist.

Don't expect mum will agree to that for a minute. She's cut back on the carers but not too much, and wants to change the emergency line she's got for something else and only have one buzzer .

Honestly I'm really struggling with mum and my feelings about her at the moment. She is totally self obsessed, absolutely no consideration for anyone but herself.

She gave dad the impression I was in a mood with him over Father's Day which was bollocks, I was just sad pur plans didn't pan out. He said to me the other day "I think I'm going to end up in hospital...your mum can't cope with me any more, she doesn't want to look after me."

Absolutely broke my heart.

I feel awful for thinking it but a large part of me wishes she would 'go' so I could make the decisions and look after dad properly.

I'm increasingly wondering if he wouldn't be better off in a home. I'd forgotten until I spoke to her last night that my friends auntie was in a local.one which she said was brilliant and having looked on their website I think he'd have a much better quality of life. It specifically says they do palliative care too.

minty, do get in touch with the care home- even for respite.
Your mum is making decisions not in your dads best interests.
You cannot do what you have been. And your dm must be exhausted.
The current situation is untenable.

Please speak to the care home, your Mum is self centred and it's all about her

Minty
I appreciate you're worried about you Dad - really I do. But you're sliding back, wearing yourself out, not being around for your DD, at the beck and call of your Mum. This will impact your work and you certainly don't want to loose your job.

There is no need for you to be there tomorrow re the meeting about the hoist. If you Mum doesn't want it, the carers will complain and insist upon it. If you must be there - stay with your Dad whilst the practice manager and nurse talk to your Mum. And make it clear to them you are playing no role in the care of your dad and if the carers refuse to continue with providing the high level of personal care our Dad needs, you will NOT be picking up the slack.

I totally agree, I think the time has come for your dad to be admitted. So many families think they can cope with a dying relative, and for a short while they can. But anything over a couple of weeks and it becomes untenable.

Sending strengthening vibes your way Minty

I'm just staying with Dad tomorrow so she can get to and from her appointments. I've deliberately resisted popping in after work all work so this is only the second time I've been here since Sunday.

Don't I know it though. She hasn't asked me one how i am, how work's been etc just thrown micro tantrums because I've been on my phone (had 3 calls in quick succession from surgery querying prescriptions for me and DD and have been reading stuff while she's been watching quiz shows and watering the garden).

If dad passes away before uncle's probate is finalised I will inherit his share. It would be enough for me to hand in my notice at work and take 6-12 months out, set up a small investment and concentrate on my writing.

Should that happen I don't think I'll mention to mum that I'm not working!!!

Going to try and have a gentle chat with dad tomorrow about residential care and go from there.

I have no experience of this, but I’ve read this thread with total admiration for all of you dealing with this Kind of challenge. I’ve helped care for someone younger at the end of life and have a small appreciation of how hard it is, but there was so much more help available. I fear that this might be similar to what I face in the next five years and I hope very much that mumsnet is still this kind of community if I face 1/8 of the trials you’re facing, op.

Thanks @sarahC40

I'm so sorry you went through this with someone younger, how awful.

Tbh I think I'd have lost the plot weeks ago if it hadn't been for MN

I would consider going part time rather than giving up a job altogether, I think the recession could be really bad!

They wouldn't let me go part time. I'd keep an eye out for a part time job and there's still the 'proper' career change job hopefully once they open recruitment.

Minty It’s obvious you love your mum but your relationship with her will inevitably alter in the weeks ahead. The power shift is happening. You are parenting while she is childlike. The line has been crossed and I hope you continue to find strength to assert your dad’s / your own wishes further.
I know of two families who have used a care home like a hospice (Obviously not through Covid times). It was for them a better option than struggling. Sending you strength.

I'm glad you're not getting too involved Minty. And I think residential care is a good move.

Sorry to be the prophet of doom, but don't hold your breath on probate coming through quickly; they've changed the system and its now taking ages, even for straightforward estates.

We submitted dad's by the end of April and not heard a peep yet. They said six weeks.

I think Minty wants it to take longer though.

But it doesn't make much difference for us, only to my sister who wants to buy a brand new stupid car. And she's not even in the will, mum is gifting her the same money (though we've not told her that).

I know it sounds inappropriate to be thinking in terms of uncle's inheritance, but it would be life changing for me.

I've never been able to afford to take out a pension (I know, but its it's complicated!) There's often been a subtle undercurrent with mum of threat to change her will if I'm not amenable to her way of doing things.

This potential inheritance is enough that I wouldn't need to worry so much about her either leaving everything to the cats home or a random neighbour, or about the costs of both of them needing some kind of residential accommodation going forward.

It's not lottery money, but in my circumstances it's enough to be absolutely life changing.

We still have the caravan to sell and, according to my cousin a particularly valuable ornament which they want to go in a live auction rather than online so I think it'll be a few months yet.

Uncle died intestate back in Feb.

FFS it's just getting worse and worse.

Had a bloody good cry and rant when I left to take DD to school this morning. Got back to 2 x carers and OT. Was obvious I was upset, mum was fussing.

She went upstairs with the carers and I basically told the OT how difficult she was, which she then saw for herself anyway. We had:

Rant about the work going on behind the house (can't sit out there when the carers come to get some space)

Rant about the fact that council wouldn't help fund a garage conversion and extension last year which would have save her the stairs (it was going ahead and they were paying themselves, mum called it off a week before work was due to start because of some building regs issues that probably could have been resolved.)

Dad doesn't need a hoist as his mobility in bed is good, but he had told OT he doesn't feel safe getting out and transferring to the commode and wants to use inco pants/pads for both functions, which will necessitate at least 1 - probably 2 - additional carer visits per day. Mum threw her toys out of her pram and said she might as well move out as it wasn't her home anymore.

Oh, and then there were the comments about how 'scary' it was last year when they sent two black men as carers after dad came out of hospital (both lovely, middle-aged church goers who mum got on with well once she got to know them but she still has to make a thing about their race).

And of course when I told her I was upset because I was struggling with the whole situation, I got a barrage of 'go home then, don't bother with us any more if we're such a burden' and 'no one cares about meeee'.

OT was fabulous - she's given me her number to call even if I just want a chat, bless her.

We've touched on the subject of residential care...naturally mum has gone off on a tangent about the one local retirement home which she's obsessed with and I don't think would be suitable for Dad in a million years.

The sobbing has just started again.

AAAAARRRRRRGGGGHHHHH!!!!

I swear if it wasn't for my daughter I would either run away or top myself.

Oh and mum is still insisting that Dad should be getting out of bed on the regular and what he really needs is a physio to get him walking again.

And she's already spent uncle's legacy (in her head)!