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.

Good luck minty and excellent decision to prioritise your stuff too.

I'm going to refer myself online to local counselling service. They've been very good in the past, including when Dad was in hospital last year (not why I was referred but sessions were extended due to circumstances).

Even if it doesn't happen straight away and it's only phone support it'll be good to have the ball rolling.

Excellent idea. Seek all the support you can.

Just read through the posts and my heart goes out to you. Here are a couple of thoughts:

1. if they're not happy with inserting a catheter, it might be worth you asking the practise nurse about a convene (sheath catheter). Assuming it's a good fit, then it's a good alternative to catheterisation. Carers can manage it and it's a way to help keep your poor dad clean and dry, and hopefully allow him to not worry about toileting.

1. If he can't stand and weight-bear, please don't try to lift him. You'll risk injury to yourself as well as him. It might be worth asking for a bed pan - far safer to roll someone (who cannot safely stand/transfer) onto their side and put bedpan under them.

If these are things that have already been considered/discussed, I apologise. If not, then they're worth checking out. I wish you all the best x

Ask your dads district nurse to refer him to Marie curie, they can provide overnight care and in certain areas visits through the day aswell, all the best

Hi Minty
I just wanted to say I am in a very similar position to you and I totally get it. It's bloody hard!

We found out Dad had terminal cancer 3 weeks before lockdown and it's been nothing less than heartbreaking and exhausting. He has steadily gone downhill week on week and mum has buried her head further into the sand.

We've had the district nurses in x3 times a week for the past 6 weeks dressing his tumour and for the past two weeks the palliative care nurse has been visiting weekly. She actively encouraged us to get things in place like a hospital bed, commode, walking frame etc but mum didn't feel we were "at that point" so declined (despite my protests). She also declined carer's. So we've been managing to care for Dad but its been harder as his needs have increased.

Dad's really deteriorated over the last 10 days and we've finally seen the hospice at home nurse today, which we needed as we had reached crisis point. However, I really had to push the palliative care nurse for this referral, which seemed crazy considering how poorly dad's been.
Mum has finally accepted all the help today (she declined it all again on Friday), including a hospital bed at home, carers and age uk support a few nights a week so we can catch up on sleep.

I wish I had pushed Mum a little harder weeks ago to say yes to support. The last 24 hours have been truly awful, and I can't help but feel if we had a few more things in place sooner we wouldn't have reached crisis point today.

So the point of my epic post is you are right to push ahead and get as much as possible in place for your Dad as early as possible. Otherwise it just adds so much more worry and stress to what is already a heartbreaking situation you and your family are going through. I hope you get the support you all need

OP I’m really sorry if I misunderstood

I thought you mentioned before that your mum could afford private carers but wouldn’t pay?

Surely it’s time to get as much paid help as your dad needs?

It's not that easy even to get paid for help you know. My parents couldn't get any, none of the local agencies had any capacity.

VanGogh, I know it’s not easy

It’s just I got the impression op mum didn’t even want to try

Lilac

That sounds a bit harsh but I understand what you're saying.

They have savings and could pay for some care, but mum will lose about 50% of her monthly income when dad dies (his pensions) and those savings also need to pay for his funeral, so shes anxious about dipping into them.

They do pay for a 'befriender' to come to Dad fortnightly and are going to ask him about coming weekly when they see him this week.

Dad is on the continuing care pathway now anyway. The difficulty is we never really know what or when his needs are likely to be/arise - at least until now. We could pay for a carer to be there and they would largely be twiddling their thumbs. And of course, like lots of elderly people mum resents the intrusion into her space.

Some days he's ok and doesn't need a lot of support, other days he's more challenging,he will keep trying to get out of bed for instance, which is really stressing mum out.

He's starting to get confused too so I wonder if he's doing that because he doesn't remember that he can't iykwim?

Sadly if yesterday was anything to go by, I think it'll be a few weeks at best.

Once dad started to keep trying to get out of bed the DN sedated him.

I'm sorry to say, that was actually the last few days, which is how it also went with my granddad.
The sedation was a relief but I did feel a little guilty that we had "switched him off", but in reality it would have been far more comfortable for him. And it was a lot less distressing for us.
He did still know we were here, we held his hand and he did respond a bit.

The support your mum asks for from carers and what she expects from you are totally different things, bound up with lots of emotion.

That's interesting Van. 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.
I do hope you get the support your dad needs soon.

Thanks all.

Touch wood, it's all going bizarrely well so far today.

Managed to get up, do some chores, have breakfast and log on for work before mum messaged me about 10am saying all was under control and no need to rush round, so I haven't.

Am going to do some more work and chores and have lunch before heading round and see how that goes. Am thinking I need to make the most of these times and stop hurtling round regardless.

Fingers crossed!

Minty
Sorry, I didn’t mean to be harsh

I took your earlier comment about paying for care for a few months as being fine, to mean, full time carers. Sorry

Van “ The sedation was a relief but I did feel a little guilty that we had "switched him off"

Oh no, it’s much better for him.

Lilac - it's fine! I get frustrated with her myself...as you've no doubt gathered !

I have skimmed through most of whats here on the thread - can't see attendance allowance mentioned? Have you applied? If not then do and get doctors to fill n part for the fact your father has been classed as terminally ill. sorry if already been mentioned. Also carers allowance for your mother, as she is caring for your father and after AA granted she would be in a position to claim

Attendance allowance is not means tested in any way
you can apply using online form and print out

Dad already gets enhanced AA, mum should also claim in her own right but it hasn't been on the list of priorities tbh. I might see if I can do it for her.

I dont think she came claim carers allowance as she's retired. I can't as I don't spend 35 hours a week caring (it's probably close to that atm but at some point I'll have to go back into work).

I don't think it will be an issue for long tbh, sadly.

Dad has been complaining of pain today which the paracetamol didn't completely resolve. We had to feed him his lunch and he's only been for a wee a couple of times despite drinking a fair amount so wonder if his kidneys are failing.

Community nurse tomorrow and will see how he is then.

Good luck for tomorrow. Hope you get some help.

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 - because it's just so hard

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...

@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.)

Thanks,

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.

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 🌺🌺