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 I might have guessed...first day of first full week of hols.

Supposed to be looking at respite home today. Mum has woken up bleeding from the ear and dad has been insisting he can't cope with being moved.

Mum had her last remaining tooth out last week so will be on soft foods for the foreseeable future. She's irritable as hell as she can't be mainlining rice cakes 24/7 and is diabetic so her blood sugar is a worry.

XH is back from his hols today. Have had issues regarding him and his partner fostering and how DD is coping with it so have contacted their SW and he will only find out when he gets back so that'll be fun...not.

Honestly don't know why I bother. I'm in a permanent state of low level anxiety and didn't get to sleep until gone 3am. No more news from.the counselling service and theres bugger all point contacting GP as they won't see anyone and what can they do anyway.

Mum's already had them phone and cancel an appointment for test results for her heart issues. She's then had to call them about her ear...81yo on blood thinners...'we'll get someone to call you back'.

FMAL.

Go and see the respite facility if you can. It will give your mum something else to think about while she's waiting for a call back from the GP and you'll get the benefit of knowing that you're still making steps in the right direction.

I would ring the GP anyway, for yourself that is. Mum has had two decent telephone consultations and one in person visit during lockdown (once we managed to work out how to actually get into the maximum security facility that is the surgery now. Major signage failure there). If you don't call you don't give them a chance to help you.

Agree with knot contact the gp for you, and go and see the respite facility. You cannot go on like this.

Went to see the care home. Room that CHC will find is small but clean, bright and nicely decorated. Just a wash basin but dad doesn't really need anything else.

There are a couple of slightly bigger GF rooms also available with en suites if we wanted to pay a little extra which I think would be good idea if he stays longer term.

There's a lovely big lounge, beautiful garden overlooking fields with horses in and a daily activities coordinator. The staff I met - a manager (I think the proprietors son) and the nurse who showed me round were very nice.

Showed mum a photo of the room told her all about it and seems quite positive.

Her ear is still bleeding, still no call from GP so now chasing that up. Am fifth in the queue...

Ball rolling with the respite care! CHC and care home informed and the nurse I met this morning is coming out to assess him Weds am.

Spent the afternoon in A & E with mum as per the GPs instructions, or rather waiting for her in the car park as wasn't allowed to wait with her.

Made the most of it by sorting out the care home stuff and doing some of my own finance/admin on my phone, so a bonkers and slightly stressful but quite productive day.

How's everyone else doing?

Great to get your father out of there, and well done.

Prepare for more drama from your mother, though-sudden illnesses, desperate sounding practical issues.

You must continue to distance yourself or she will engulf you even more when he moves out.

I'm sure you feel incredibly drained but such progress!!!

Have you tried nytol to sleep you can buy it in boots. It's an antihistamine that will sedate you and help you get to sleep. Getting by on such little sleep you will feel awful mentally and physically. Counselling doesn't sound like happening anytime soon. Can you gp refer you for online cbt they do here, Scotland and there is no wait list. The stately homes thread might be useful for ideas re dealing with your mum. I have a hyper critical mother and I find it helpful seeing how others cope. Take care of yourself xcc

and theres bugger all point contacting GP as they won't see anyone and what can they do anyway. I don't know whether it's worth trying, but I've had success with GP by letter. They don't have inward email, and their phone lines have been jammed, but letters have been answered within 24 hours by either text or email.

The staff I met - a manager (I think the proprietors son) and the nurse who showed me round were very nice. That's important. My father's nursing home leaves things to be desired, but the staff are friendly, the atmosphere is good, and my father said to me "you can tell [the manager] really wants the best for me"

How's everyone else doing? My father has recovered from Covid, and we got to see him through the window the other day - he seems fine. We had a lovely day botanising in the Dales on Friday - apart from a funeral, the first time since mid March that we've been more than a mile from home.

Mum (who is somewhat set in her ways) said that she thought talking to the doctor on the phone was a wonderful thing. She didn't have to change out of her work clothes, get there, park, wait and then do it all in reverse.

The thing about respite is that it's not a big decision, the parallel is going on a holiday rather than moving house. That would be my line anyway, if place 1 doesn't work out then you can try somewhere else next time.

Here yesterday there were tea leaves in the kettle, the charger for the vacuum cleaner has been tidied away somewhere and the freezer was rammed full of "I've nothing to eat in the house dear". It's five weeks until the memory clinic appointment and I'm counting down.

Mere yeah. I'll GP I'd I have to. Tbh I'm trying to manage for as long as possible as I think it's autumn that's going to be a struggle, being back at work full time. It's normally stressful in September but it will be a whole other level this year. Trying not to think about it at the moment.

Yesterday was just...well it seemed bloody awful in the morning but got more manageable. Perhaps my resilience is increasing!

V. envious of your trip to the Dales. I was supposed to be in Harrogate last weekend. I love Yorkshire.

Knot bless you. If I'm honest I'm counting down until dad gets moved even if it does end up being only temporary. They well be able to get him.out into a chair so he can sit with other people or in the garden and he won't be having to listen to mum and I stressing which is bound to better for him.

Is the 'nothing to eat in the house' a memory thing or perception do you think? My mum has two fridge freezers and at least 2 shopping deliveries a week yet is constantly saying she needs things.

I put it down to her being a war baby and living through rationing.

It's a memory thing, it's a revelation to her every time I open the freezer door and show her what's there. It's the same with the fridge and the pantry shelves are some sort of alternate reality that only exist when I am there. I'm walking her through the freezer six days a week and it's fresh and exciting every single day. There is a perception issue as well, she can look at things and not see them if you know what I mean. The teapot can be in the middle of the counter but she doesn't see it, or doesn't recognise it as a teapot or whatever.

"A change is as good as a rest" supposedly, a change of scenery may be reallly engaging for your dad.

God...that must be tough.

Yes, we're selling it to dad as a bit of a holiday and tbh judging from the home's Facebook page it seems like a geriatric Butlins.

The activities coordinator is in 5 days a week, and during lockdown they've had a VE day party, Wimbledon quiz and afternoon tea, barbecues, birthday parties for the residents, and prior to that live musicians in and all sorts.

When I visited two of the residents were having a chat and a cuppa in the lounge, AC was getting board games set up with a couple more and two of the ladies were having their hair done (one of their senior carers is also a qualified hairdresser).

Minty that all sounds good.

Lovely nurse from the home came out to assess Dad this morning which went well. He was a bit under the weather today (v. tired) but still managed to engage a bit.

So hopefully respite end of next week/beginning of the following one (time for finances and transport to be put in place and they are redecorating the room he's going into). But longer term, Mum doesn't feel is an option. Even the most basic room, taking into account CHC funding will require a top up that will wipe out Dad's AA and almost his whole monthly pension, which mum doesn't feel is affordable.

So long term...still iffy, but we'll see. I'm hoping that if his wellbeing improves significantly while he's there I might be able to convince her as I don't think the finances are insurmountable.

TBH you probably think I am horrid but I'd tell your Mum if he comes back home apart from one overnight per week you won't be doing any caring at all it will be up to her to sort out having carers in.

I'm going to have a chat to her tonight.

They are very much into squirrelling money away in savings and I think they worry about leaving me an inheritance, which is all well and good, not least as I don't have a pension but if the stress kills me first there's really not much point!

I would wait until he is in the home before discussing him staying longer. If your father enjoys being there and your Mum feels like she's coping better, they may come round to the idea anyway
Good luck, hope it works out

Oh yes wait until he is in there!!!

I will be able to do one overnight a week and my usual Sunday afternoon once I'm back at work, so they will have to cope.

I looked at Carers Allowance again and them paying me the shortfall. A good 30% plus of the stress is cause by having to juggle a not particularly understanding workplace, however...as much as if consider doing it short term, I know I would struggle to extricate myself from that scenario in the longer term.

Minty - you're sliding again, being sucked in.

I'm going to remind you - your have a DD, you have a job, which even if they are a pain in the neck you need to pay the bills.
Do not get sucked into more of a long term caring role which you can't get out of. Step away.

Totally agree!!!

Your DD is not in a good place emotionally, her father is only going to hurt her further through his actions.

You need to work, you need to step away from staying enmeshed with your emotional vampire mother. It will destroy you if you give up the next few decades caring for them. They have money, the can pay for care!

Agree with above! Getting sucked in...... get your df the care he deserves.
And don’t take on the care.

Minty Hoping your lovely DF gets the respite bed shortly. You may be onto this next step already but have you a plan of how you and your DD can get a few quiet days away from your DM? I’d be gently telling your DF in advance that you may be absent for the first week while you recharge. He will understand I’m sure. Also can you line up a friend of your DM to keep an eye on her?

That's a good point Rinsefirst
Don't feel you have to visit every day and even when you do, not for extended periods of time. Keep to an hour or so.

There's no point in having respite care, if you then fall into the tyranny of daily extended visits.