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.

Well done Minty, definitely sounds like heading in the right direction. Glad you’re feeling a bit better today X

Glad to hear things are going in the right direction Minty. Stay strong with your mum, she may still try and resist but you need to think of yourself and your daughter. X

So much for the right direction...message from mum at 6.30am to say she'd been woken by an almighty bang and found dad in a heap on the floor at the end of his bed.

She did message though and wasn't panicking and said there's nothing I can do so I haven't, but its shaken them both up badly.

A message is OK - she didn't ask you to come over and you didn't offer, so that's good.

6.30 is a bit on the early side for a message - do you feel OK to put on a 'Do not disturb' message on your phone overnight?

Well, I hate to say it, but it was inevitable and maybe it will help her to rethink what support she is willing to have.

To be fair it wasn't mum's fault - dad's in inco pants and we tell him repeatedly that he mustn't get out of bed but he will insist on doing it.

It's happened twice in the last week in the early hours so I wondering if when he wakes he's a bit disorientated and doesn't remember that he can't manage it.

Yeah FB message at 6.30am - I woke up and read it at 7.15pm. Spoke to her again at half nine and have heard nothing since. She was quite insistent that I didn't go round and that she'd call if she needed me. They've got extra care in today anyway, but I though I heard Dad calling for me in the background when I spoke to her earlier, although apparently it was for her (our names start with the same sound so maybe but....

I'm increasingly thinking I need to work on my own knee jerk reactions and guilt complex as much as anything!

As for 'do not disturb' - I just couldn't. I don't have a regular sleep pattern anyway, especially at the moment. We've no-one else and if they couldn't get hold of me, they'd hit the careline button and they'd call me on the house phone anyway.

Actually it's just occurred to me that I do have Do Not Disturb set up for notifications so she can only ring me between 11pm - 7am.

Care agency called mum this afternoon and told her they will be putting in 2 x carers for an hour twice a day, every day from Monday.

She's not thrilled about it (they wanted to start tomorrow!) but I think I've convinced her to go with it on the grounds she can tweak a bit if she find it doesn't work (ie.make the afternoon ones every other day for twice as long)

That's good Minty - about the care agency putting in support. Don't give her options for pushing away support, don't tell her she can tweak. If she says she doesn't like the intrusion of whatever, say something like ' give it a few more days / well dad needs this help now / let's speak to the DN about it first'.

Let the care agency / DN lead now/ If you let the care go - there's no guarantee you'll get it back when she does want it. Remember what I said - 'take whatever they offer you, even if it's not what you think you need' it's so that when you do need somethings else they have to give you the next level up, so you've already got the basics. Sorry - don't know if that makes sense. Bottom line - DO NOT be the one to negotiate with your Mum about dropping services - that's for the DN / Care agency

Well said dpotter don’t let dm mess up carers.

Agree with dpotter. You have such good allies here, Minty.

How would she react if you explained that social services could decide she is being deliberately unkind/abusive if she refuses the care for Dad that the DN says he needs?

Thanks all - you are indeed fabulous!

I've no intention of letting her pull back on the care - tbh I'm hoping she'll just go with it once she gets used to it.

I have pointed out to her quite firmly that this is not about what she wants, it's about what is best for dad's safety and wellbeing.

Well done

So much for making life less stressful and carving out some more time.

Went into work today for what I thought was a toe in the water with a view to going in a few hours a couple of times a week around DD's reduced hours (which I was happy to do as minimises risk if we're travelling to/from and there at the same time).

I have been told that I am expected back in three full days a week from Monday, my hours and the fact DD can't come in early/wait for me in school mean she will have to travel to and from on public transport increasing the risk even further.

So I either don't see my parents at all for the next 6 weeks (4 at work, 2 quarantine), or carry on supporting them with the associated increase in risk factor.

All this in spite of my having had a letter from the GP saying I should work at home if possible and the fact I have been doing so perfectly competently for the last three months.

Apparently it's suddenly impossible for me to do my job from home.

Hmmm I reckon a few days at work and then you'll be ill with stress...

Are you in a union?

No. I would be Unison but I was with them in a previous job when redundancies hit and they were as much use as a chocolate teapot so never joined back up.

The HT member of staff I PA for is very union centric and has suggested I put an email together raising my issues and she'll take a look with a view to involving the head.

Hurrah for a decent boss!!!

I would include how much strain you are supporting a terminally ill parent and unwell mother oh as well as single parent!!

Sadly my immediate manager lives a charmed life of young, healthy parents, a sister she gets on brilliantly with, great job, shiny new well-trained husband and no kids.

In short, she hasn't got a fucking clue.

Minty - I've avoided this thread because I knew it would be grim. Coping with my mum's grief and anger, stopping her launching at the throats of the rest of the family is fresh in my mind nearly twenty years on. When people say "oh, I just don't know how you manage" it's because there is no choice, you just have to keep on going because there isn't any other way out of it. At the worst times in my life I was glad I had children/dependent pets because it gave me a reason to carry on when my life was not worth living.

I hope your boss removes her head from where she's stuck it, if not then perhaps buy yourself some time and sob at your GP pointing out the lack of support in these difficult times for your family (the long list of things that you know should be out there, but not for you) and for you (carer's services, counselling). A sick note for a month would take you to the end of term. I know that you don't want to do that seeing as you can work from home but someone is being unreasonable here and it's not you.

(Could your daughter travel in with you and sit in the car at the beginning/end of the day?)

I will give you the three phrases I found helpful when dealing with someone who thinks the world should revolve around them:

Don't set yourself on fire to keep someone else warm
It's not my job to make her happy
If everything I do is wrong then I'll just do what I want to do

The last one I found particularly freeing.

knot I'm so sorry you went through all this as well.

At the worst times in my life I was glad I had children/dependent pets because it gave me a reason to carry on when my life was not worth living.

Quite honestly if it wasn't for DD I was at the point of just flooring my car off the top of the nearest multi storey a few weeks ago, so I can totally relate to that. I have actually finally admitted to a couple of people recently that I've self harmed when it's all got too much (only in a very minor way but still...)

You are very right about that last phrase too.

Anyway, now I've calmed down a bit I'm erring on the side of sucking it up tbh. My work have always been the same and I'm never going to change anything. I have an expression of interest pending with another job - just waiting for them to open for formal applications.

If they'll let me do the days that work best for me and stay out of a particular upcoming event that I think is insanely high risk, then I'll settle for that, it's only for 4 weeks.

Minty the one thing you have to believe right now is that this is not the rest of your life, things will change and it will get better. Until that time you have to slog through one day at a time, if that's too much look at getting through the next hour. You are under an unbelievable strain right now but it won't always be like this.

My DM passed away years ago but she had been a geriatric nurse and also worked in a Care Home before retiring but somehow hadn't logged that her life might end similarly.
Wouldn't sign a DNR, wouldn't go into a home, once in one expected a lot of me, it was only afterwards I thought - WTHell.
I don't know if our brains change in latter years but people become very selfish.

Minty the one thing you have to believe right now is that this is not the rest of your life

I think I may have to print that out and stick it on the wall in every room of my house. Right now, and really on and off since Dad had his fall, I feel like my life is over, to all intents and purposes.

When he's gone, there will be mum to deal with, which will probably be even harder in some ways.

I stayed over last night - Dad's not doing well. Minimally responsive yesterday afternoon. Managed to feed him about half a dozen spoons of chilli and yoghurt, and he watched TV for a bit. Got him on and off the commode (with results - fabulous as don't have to worry about getting a call from Mum about that for a day or two now), changed his inco pant, did meds and got him into bed then read to him for a bit.

Up since 4.30am after he called out. When I went into him he wanted to know where everyone was! He calls out in his sleep a lot so I just sat up in bed reading after that.

6am heard him on the move, he's out of bed, which is soaked, and has taken off his pants. They were dry so I guess he must have got out of them and then wet the bed.

Sat him down, full strip and change of bed, helped him use his portable urinal before getting him in clean pants and vest, administering more paracetamol and getting him back in bed and settled down.

Mum's been up for about half an hour and is a nervous wreck and hasn't stopped sobbing.