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Original poster

Dad dying, how to cope with Mum

819 replies

MintyCedric · 28/04/2020 23:35

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.

OP posts:
Original poster
MintyCedric · 29/05/2020 08:34

Heard dad on the move at 7...went upstairs to find him out of bed again, pants round his ankles, coughing up God knows what and unable to go for a wee.

Got him back into bed, he had a nap and a cuppa then managed to go. Got him settled in bed and he turned round and said to me "You know you're going to have to say goodbye to me very soon, don't you?"

Was nearly a moment but of course Mum has been wandering about like a harbinger of doom sobbing all morning. She can tell I don't want to be here and hopes that when I'm old and decrepit my daughter has more sympathy.

Tried to tell her that I was actually finding this upsetting and stressful and exhausting too, and whilst I want to be there for them I'm worried about the fact DD is just getting nothing of me and also seeing me breakdown and lose my shit on a regular basis.

"Well, go home then and don't worry about us!"

Asked what time carer was due...'you're obviously desperate to leave...'

I wonder why. This situation is going to kill to me if it goes on much longer

OP posts:
Original poster
MintyCedric · 29/05/2020 04:38

VanGogh I cannot tell you how many times I've suggested that she spends the bulk of the day upstairs. She has a large, sunny bedroom with TV, phone and a computer and could easily set up tea/coffee making facilities in the spare room.

I dont know if its denial, stubbornness or pure selfishness.

I've had two hours sleep...just want to go home and be me, doing my own thing in my own space. I hate this all so much.

OP posts:
thesandwich · 28/05/2020 20:38

Completely agree with random you and dd first, your dad and then dm.
And echo the Teflon comments- sending a bucket!
You have to start setting boundaries, for when / if you go to work.
You will break otherwise and be useless for dd.

VanGoghsDog · 28/05/2020 20:37

Why doesn't your mum sit upstairs most of the day, with your dad, then she's not up and down the stairs. She could just sit and read and keep him company.

RandomMess · 28/05/2020 18:26

I think you need to put your Teflon coat on and ignore your Mums emotional blackmail.

I know that sounds very harsh but DD is your priority then your Dad and then her. Also remember the analogy of putting your own oxygen mask on first on the aeroplane before helping anyone else.

Give your Mum the times when you are not available because you HAVE to be on line and working. Your Mum is refusing more carers but the reality that you are not available 24/7 may help her rethink that.

Thanks
Original poster
MintyCedric · 28/05/2020 18:18

Purple not really and tbf its general disorganization as much as anything. Even if I had the time to sort it we've not got any refuse tips open to get rid of all the crap. It's probably not as bad as I'm imagining, just that it already needed doing and now DD is studying and I'm working from home its added another layer of clutter.

There's no way mum would tolerate a cleaner, she's like Hyacinth Bucket on speed in that department!

Random no...DD would never forgive me and I'd be constantly worrying that Mum was going through my stuff.

We lived with them for a couple of years while I was getting divorced and it was probably about as stressful as life is now.

I can't put DD through that again, and she can't stay with her dad as he and his partner have a very volatile foster child with them at the moment (not that she'd be enthused about staying with them anyway).

OP posts:
RandomMess · 28/05/2020 17:48

Can you send your Mum to stay at yours for 48 hours (poor DD I know)?

She gets respite from your Dad and you get respite from your Mum?

Rinsefirst · 28/05/2020 17:06

I think losing your shit is normal in the circumstances but when it’s happening regularly then it can also be a sign that you need the roller coaster owners to physically press the emergency button for you.
The roller coaster owner could be your parents’ GP or your own.

Honestly, I think in your shoes I’d push for my dear Dad go into some form of tespite regardless of Covid. My DM is in a home which has has Covid - and I suspect the home might have it again - so I kind of understand albeit differently.
Brilliant that you got the self refer application done and that you eventually squeezed in a tiny bit of writing.
PS I failed to tell you in my previous posts that the reason I was able to deal with the squirrel incident was that my 8 month old puppy caught a rabbit on Sunday Sad

PurpleFrames · 28/05/2020 17:05

Sorry I haven't read all the thread, but what jumped out to me practical wise. Could you afford a cleaner to give you a bit more free time, then once you have a contact you could more easily get her in their house too.

Original poster
MintyCedric · 28/05/2020 16:55

We don't even interact that much when I'm here a lot of the time.

Currently both doing our online shopping, she just likes having a 'presence'.

OP posts:
Original poster
MintyCedric · 28/05/2020 16:54

She has someone come in for Dad, but was adamant that she wasn't interested.

I might try again from the 'when I have to go back to work...' angle.

OP posts:
thesandwich · 28/05/2020 16:46

Please look into sitters or someone who could give your mum a break that isn’t YOU.
AGE UK? Hospice volunteers? Please.

Original poster
MintyCedric · 28/05/2020 16:04

Squirrel tossed made me laugh 😆 and think of the 'I'm not a pheasant plucker' rhyme.

We've had a calm few hours. I managed to finish what I've been trying to write for the last three days and have completed an online self-referential to local counselling service.

The thing is, mum complains that I don't understand what it's like dealing with it 24/7 that he's always calling out and she's having to go up and down the stairs all the time, gets no time to do anything she wants to do, is exhausted etc etc

Admittedly I don't, but I am round here a lot. Since 11.30am this morning and he's not made a sound other than asking me once to recline his bed so he can have a sleep.

I feel like I'm on a bloody roller-coaster, without a seat belt, in the dark with no idea how long the ride is going to go on for.

I feel so much calmer now that then I think I'm being a total drama llama when I have a one of my mini-breakdowns. It's like there's no in between at the moment...I'm either coping with everything or completely losing my shit. Is that normal?

I'm not anti the idea of dad going in somewhere other than for Covid related reasons.

OP posts:
Rinsefirst · 28/05/2020 14:37

minty I am still amazed I actually chucked it in the river but my focus was on the toddlers about to walk around the corner.
But back to you. You are doing a sterling job of juggling. Yours is a relentless marathon looking out for your dad and your mum. Please don't let them overwhelm you when good things are just around the corner for you and your daughter. Flowers.
Now, however, is time to ask for the cavalry to help you and your mum. This might sound cruel but letting your Dad go into hospital or care or a hospice might be the best thing. Decisions taking is awful but the least worst option is still a good decision.
Sending you virtual support. I am a squirrel tosser so I have support to give. Grin

thesandwich · 28/05/2020 14:06

minty you cannot go on like this. You need to get help in place.
Please contact your GP. Your DD deserves a healthy mum.
Not sure where next- Parents GP? Your mum needs help. Paid carers?
Adult social services?
PLEASE seek help.

Original poster
MintyCedric · 28/05/2020 12:51

Rinse God that sounds horrible, well done you for getting stuck in and dealing with it though.

Out of control car sounds about right. Ended up offering to stay over tonight so planned to have a few hours at home first as DD is at her dad's today.

Within less than 10 minutes of her leaving I had mum on the phone screaming and sobbing that she can't cope. He'd needed to use the commode and not quite made it on time. So I had to drop everything. Found him lying face down on the bed where she'd been cleaning him up.

Otherwise most of it had landed in the commode and a bit smeared on the seat but really not the major catastrophe she made of it.

She literally cannot cope and flips out about everything.

I'm at my wits end...have just spent the last hour arguing with mum and crying and now she crying cos I'm upset and angry and it's all my fault.

There's only one way out of this and I can't take it because I have my daughter to consider.

OP posts:
VanGoghsDog · 28/05/2020 00:48

I'd hoped hed be able to go peacefully at home, but increasingly I'm envisaging some kind of crisis occurring (we still can't keep him in bed although he's not supposed to get out)

This is exactly where we got with my dad. At this stage I went to stay with mum because in between the carers she really couldn't cope. He was insistent on getting up, but couldn't stand, she could not support him and I worried they would fall over together and both be injured.

It was a bit easier for her once I was here as I was a bit more able to settle him. And I can't help thinking the district nurses were less patronising with me here than with her on her own.
But we also had an overnight carer by then. And every time he got overly restless we called the DN and they sedated him, and I think if they do that X number of times then a syringe driver will be put in to keep constant sedation.

You need to get your mum to call the DN and ask for sedation whenever he is distressed or aggitated. It's only by keep calling them that they will see the full picture and act on it.

It might have been different because my dad did have the catheter and he had agreed very clearly on two occasions to the DNAR.

Rinsefirst · 28/05/2020 00:05

Minty what a lot on your plate. Flowers
It might get a little worse before it gets better, but it WILL get better. To be blunt you are hurtling at speed in an out of control car which your parents have been driving. You are doing your absolute best to keep everything steady but you can’t because there are too many things for one alone. You have reached the next stage where you need the support of a team. [For my DSis and I the equivalent of when we got my mum sectioned when we eventually admitted to ourselves that we couldn’t go on.] Tomorrow morning is the time to call your GP surgery and tell them, even through tears, that you need them to help you with respite support. Basically just say what you’ve written here the last few days. Sending you virtual support. Ps I had a rubbish day, too. I had to remove a newly dead squirrel from a path in a busy park and hurl it into the river before some toddlers approached as the woman’s dog who’d caught it was in hysterics.

Original poster
MintyCedric · 27/05/2020 21:45

Thanks sandwich

The thing is I'm at a secondary school and have been allowed to wfh since lockdown, so am.not doing the usual amount of work anyway so it feels really unreasonable to be signed off.

The thing is I still feel 'checked up on' the whole time, which tbf is entirely reasonable on their part but stressful as I'm constantly worried that I'm not doing enough.

When I'm with mum I feel guilty that I'm not giving work 100%, when I'm working I'm on tenterhooks about what's going on with mum and dad. Poor DD isn't really getting a look in, although shes nearly 16 and very self sufficient but I still feel bad about it particularly since XH is an insensitive tit and we currently have a first (long distance) boyfriend situation going on so I feel like I should be a bit more on the ball.

I have Weds and Sats 'off' but increasingly there will be a reason (like this morning) that I have to drop everything and go round and even on a 'good' day I'm on edge the whole time and on the phone 3-4 times a day.

I'd give my right arm for some kind of respite care to be available so I could actually have say, 5 whole consecutive days off, but that's not an option.

Mum keeps complaining that she can't cope, but time it seems there's an element of doesn't want to cope. She's talking in about Dad 'going in somewhere' which of course due to Covid will mean we can't visit and he'll probably die on his own.

I don't even have the energy to argue anymore. I've suggested we discuss it with the nice district nurse next time she visits...it takes mum so long to decide anything it probably won't happen anyway.

I'd hoped hed be able to go peacefully at home, but increasingly I'm envisaging some kind of crisis occurring (we still can't keep him in bed although he's not supposed to get out) and it all suddenly and dramatically going to hell in a handcart.

OP posts:
thesandwich · 27/05/2020 21:06

Sorry to read your update.
Sounds like you could do with seeing the doc and getting signed off sick. You sound at breaking point. No one is irreplaceable.
Take care of yourself 🌺🌺

Original poster
MintyCedric · 27/05/2020 11:03

Last week was a bit better but really just by fluke.

The relentlessness of it all and the fact that I/we can't seem to do anything that will make it easier is literally breaking me.

Nurse came out re Convene this morning. She wasn't the regular one and was a bossy pita who wasn't really interested in listening to what been going on or how his toileting issues are impacting me and mum. Neither of them liked the thing anyway so that's another thing that could potentially make life easier off the list.

Had a bad day emotionally yesterday, was supposed to be having a relaxing day at home today with DD, writing, gardening and having a BBQ.

Now I just want to go home, shut myself in my room and scream/cry (or drive my car into a brick wall...dont worry I won't but by God I can understand the temptation at the moment).

Work are trying to pressure me into going in for a meeting which will no doubt give rise to 'well you've already been in now...' and with BoJo forging ahead with his plans to reopen eveything regardless I imagine it wont be long before I'll have to go back anyway. Fuck know what we'll do then.

I know it sounds awful but I was hoping dad would have passed and there might be more external support available for mum by the time I had to go back but it doesn't look like that's going to happen.

I can barely cope now.

OP posts:
ivykaty44 · 19/05/2020 11:14

Thanks,

MereDintofPandiculation · 19/05/2020 11:05

@ivykaty44 There's an "overlapping benefits" rule which means you can't be paid both State Pension and Carers Allowance at the same time. State Pension is usually more that Carers Allowance. (If a person is entitled to only a very low amount of State Pension, they may be able to get a partial payment of carer's allowance, up to the level they'd get if they were being paid carer's allowance alone and no state pension.)

ivykaty44 · 19/05/2020 07:04

Minty

Tbh I’m sure it doesn’t matter that your mum is retired and it can all be claimed on line so you would be able to do it for her

I’m sorry that it’s not going to an issue for long...

VanGoghsDog · 18/05/2020 22:02

Oh no, it’s much better for him.

Oh, I know - it just felt.......the day before he was talking and even ate a bit (though he hadn't eaten for two days and mum said he only did it for me, because I arrived), and then he was just 'sleeping' the whole time.

They wouldn't do that with Dad, who was wandering and falling. Said it would disorientate him more and he would be more likely to fall.

He could't fall if he was just asleep though. If they think it would make him wander more then that would mean they had not used enough sedative. After he was sedated he couldn't really even lift his arms or open his eyes - but this was very near the end, they gave him the syringe driver for it, mixed with morphine.

We never got attendance allowance for dad because he never officially got a terminal diagnosis, but I guess we had most of the support we needed.

Good luck with the community nurses.

And Flowers - because it's just so hard