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.

You're right of course flygirl (I forgot you're just down the road from me!).

We've got a half hour morning carer every day and a guy that comes for two hours over midday on a Wednesday.

I'm inclined to suggest they have an hour in the morning every other day, a short visit Tues, Weds, Fri (and maybe Sun) evening and a longer afternoon visit (couple of hours like the Weds guy on Mondays and Saturdays).

I've also suggested that she just gets some nice ready meals in for dad that she can microwave in a few minutes, so if the evening carer comes at slightly different times it easy for them to take care of that.

Right, I've devised a rota. What do you guys think? Does it sound reasonable in terms of timing and expectations of what the carer would be required to do?

The shaded area are when I'd be there, and would also aim to pop in on Mon/Tues but it would be for a shorter visit and around my other commitments.

What are the toughest times for your mum?
My experience says don’t build yourself into the rota- give yourself flexibility to go when it suits you.
An hour every morning could give more scope. And times so perhaps you could get your mum out for a walk or something?
Buy time so you get to read to your dad.

What are the toughest times for your mum?

Hahahaha! Every single moment of every single time she's expected to do something out of her comfort zone/preferred routine and every time she has to be on her own for more than an hour.

But having carers in more frequently 'will be too invasive'

Sorry this is such a nightmare OP - you are being brave, supportive and a very good daughter.

Remember that you should not give up your whole life in order to continue to be a good daughter. You owe yourself and your own daughter much more than that.

(The moving in together idea might work for some but sounds likely to be a disaster for you all. Just say 'no' to that one.)

I think you need more carer time, if your Mum would rather he moved into a care home but that means she can't visit perhaps you need to accept it?

I love the reading Thomas Hardy idea (though he can be a bit downbeat in most of his other works). Victorian works unfold slowly and in lovely prose. Perfect for settling to sleep. Being read to is such a comfort and for most of us is associated with being tucked-up and loved.

Can I suggest another Victorian: Trollop ?
His Barchester Towers series works wonderfully read aloud.

Dickens' work just asks to be read out.

On the practical side have you claimed attendance allowance for your dad - that money really helps in buying in extra help. Sounds like your dad could claim under the special rules for those who are terminally ill.

1WildTeaParty - yes I doubt we'll be exploring any more Hardy. Dad tells me this is the lightest and easiest one. I'm familiar with Jude the Obscure and the Mayor of Casterbridge (audiobook) and read Far From the Madding Crowd a few years but although it took me months, and I'd normally do a contemporary book of that size in 3 - 4 days.

You're not wrong about the moving in together. This is another thing Mum's friend totally gets having a daughter who has been through the whole divorce/dating/building a new relationship thing (they actually met in hospital having us but her DD and I lost touch in our teens), so I have an ally on that front too.

I'll definitely keep Barchester and Dickens under consideration, although I must admit, Brontes aside Victorian literature is really not my thing, but I do like reading aloud.

Elinor

Yes Dad gets enhanced AA and is on the continuing health care pathway for those expected to pass within 12 months so we have a decent budget. It's just getting mum to agree to anything that's the problem. We could also claim it for mum but she was turned down seven years ago so thinks there is no point in trying again. I might see if I can do it online for her as far as possible. She's almost completely deaf without her hearing aids, has diabetic neuropathy and probably shouldn't be driving.

Random if I can get her to agree to what I've posted I'll be amazed, let alone any more help. Honestly if care homes opened up tomorrow and we could visit I'd arrange it myself. I know most allow visits when the end gets near but my fear is it would come suddenly and we wouldn't be with him. I suppose there's a good chance I won't be anyway if it's quick, but still it's hard to knowingly make that choice.

Is that seriously all you are having?

He has Fast Track CHC FFS I thought he was having 4x daily carers.

No wonder the whole thing is a mess and you are exhausted. The whole problem could be solved tomorrow if he had a carer coming 4x a day - your mum wouldn't be lifting a finger and it would practically solve the toilet issue as they would try him on the toilet each time, so no surprises at any other times of day.

It took me the best part of a month to get her to put that in place.

She keeps saying it's pointless as no-one can guarantee they will be there when he needs to go on the commode.

You are of course right that the more often they come in, the more chance there is of something happening at the 'right' time.

TBH I've wondered about talking to social services and seeing if some kind of social worker involvement would give her the boot up the bum she needs.

The problem is, it is all about her. There is virtually zero awareness of the impact of any of this on Dad or me.

We didn't get 4x carers until the last week, and the overnight one only did three nights in the end (well, two and three quarters.....).

But as a minimum you should be having three a day, morning, lunch and evening.

The virus makes this all so much harder, if it weren't for that, you'd find local volunteers who will come and help or just sit with someone.

Try Parsley Box for ready meals, they're not amazing, and quite small, but they don't need to be refrigerated and last 6m. Mum got some and while they're not gourmet food, they keep her alive and when dad was first ill they were about the size he could manage. You get wine too!

www.parsleybox.com/menu/latest_offers/

No practical advice but just a hug and to say you're doing an amazing job x

Don’t give up your job.
Could the careers give him suppositories to regulate his bowels when they are there to ease toileting issues for your Mum?
Catheters are used in these situations to ease the falls risk and wet beds.
Discuss these options with the nurse to see if they are possible.

Minty, Minty, Minty

Oh how I feel for you, I really do. But Minty you need to step back, you really do. I know it feels like your watching a car crash in slow motion and you want to get in there and sort them out. But you can't do everything - you have other responsibilities. This isn't a failure on your part, it really isn't.

Don't give up your job
Make contact with GP & Social Services - tell them you can't support your parents any more, that your mother is resisting additional input from carers and you're concerned about neglect. And then you do the most difficult thing you can - you step back. All the time you are there, caring, sorting etc, there will be no extra help. We had to do this with a family member and it was traumatic, but there was no other way in the end.

I know you want the best for your Dad, really I do. But he needs professional help now and you and your Mum need to know he's being cared for, so you can both feel less stressed.

If nothing else, if your Mum phones at 3am for assistance with your dad as he's fallen off the commode again, please call 111 /999 and don't go around yourself. Call yourself, don't ask your Mum to. My DP had to do this for his family member.

I know I sound like a cracked record but I can't believe you don't have a Specialist Palliative Care Nurse.

This isn't being handled well by the GP/DNs, it's exactly the sort of thing that a Specialist Nurse would push and co-ordinate to sort your care package out and realise you and your mum aren't coping.

I do this sort of thing every day.

Completely agree with DPotter!

You are going to end up really ill if you don't step back and tell your Mum to get on with it.

Your Mum isn't going to change and your DD deserves to have a life without your Mum's toxicity ruining the next x years of it.

KOKO

Feel for you, OP. Had to support one of my parents through their final illness and it was so so hard.

Your Mum is trying to protect herself by staying in denial but all that's doing is shifting more pressure into you. And, as you say, you still having caring responsibilities for DD and a job.

I think you need to speak honestly to your Mum about your needs too. If she is not going to take an active role in decisions then she needs to give you the autonomy to make them on your parents' behalf.

When my DM was dying I saw a counsellor who said something that stuck with me to this day. 'When you are in a plane, you always fit your own oxygen mask before helping others put theirs on.' In order to care for your Dad, you need to make sure you can protect your own mental health. A broken, burnt-out person cannot shoulder this kind of burden. So be honest with your Mum about what you need.

Huge hand-hold . I've been there and it is shit.

Thanks for all the messages and support.

Anna I think a lot of the problems stem from the fact he doesn't have a formal diagnosis. The possibility of bowel cancer was raised before Christmas but even then we were advised that they wouldn't be able to treat him, and as a result Dad declined testing. He started going downhill rapidly after we lost his younger brother at the beginning of February. By the time he became bedridden he was too frail even for tests. When I help him out to the loo now, I am sometimes holding him up by his ribcage.

So, as a result, Macmillan won't get involved because it's not a diagnosed cancer (to be fair I think it is more likely 'just' frailty as surely his bowel function and eating ability would have gone completely to pot by now otherwise).

He can't go into the local hospice because they have deemed him to not be in need of that level of end of life care at the current time. Care home is tricky because of the virus and respite simply isn't available for the same reason (I've already asked if there is anything at all and just got a sad head shake).

We had the senior practice nurse coming out in the beginning and then a fantastic district nurse but now the care is - theoretically at least - in place they seem to have pulled back. Can't recall the last time we had contact with SPN, and DN went from weekly, to alternate weekly, to phonecalls - haven't heard from her for a fortnight now.

weenurse he's on regular Laxido - how would suppositories differ? They have been mentioned I'm not entirely sure how they would work. Anything that is likely to cause a sudden poonami when mum is there on her own is just not going to be an option. She can't cope with 'normal poo' in the commode let alone anything more dramatic!

I've asked about a catheter on more than one occasion - they won't do it because of the infection risk. It was the same when he was in hospital last year, flat on his back with four broken vertebae.

I also asked about a Convene and they sent a nurse out to demo/discuss it but she was bloody awful. Didn't explain things well and was not remotely interesting to listening to the issues we'd been having around toileting or answering questions, so that went on the back burner. One of the carers has done a better job of explaining it since but we've not revisited the idea yet.

Batley I self-referred to our local counselling service a couple of weeks ago. The referred me to our local Carers Support group who are 'unfortunately not able to offer counselling support at the current time'.

You are going to end up really ill if you don't step back

Yup, I take regular medication as it is. Went to take some this morning knowing I'd missed a few days here and there recently. Turns out I've not managed it for a week...

I cannot tell you what I would give to just be able to stay at home and disengage from it all for a week.

...oh and on the nursing/care front, Adult Social Services contact dropped away as soon as he was put on the CHC pathway and there was no need to financially assess him.

Minty then do that

"Mother I am too ill to come"

You need to put your oxygen mask on and fast!

The suppositories or a little enema works 10-15 minutes after being administered.
If the caters give that on arrival, then deal with the bowel evacuation, Mum won’t have too.
Convene, or condom drainage, as we call it, is a condom is attached to a bag so he doesn’t have to get out of bed to pee.
It gets changed each day by carers.
Your Mum is obviously wanting you to move in and take over.
Keep bringing up DD and her schooling. Insist on more carers.
Go back to work, so the reality is there for Mum and she realises that you can’t do everything she wants you to.

That is really good to know re suppositories weenurse.

Mum's main issue with the Convene is that she would still 'have to keep going up and down stairs to change the bag', which was the impression the nurse that came to demo gave her. When I tried to ask questions, get her to explain in more detail that this wouldn't be as often as helping him use the urinal, she just shut me down! Dad wasn't comfy either, but I'm inclined to wonder if that was down to the application rather than the gadget itself.

He's in inco pants now which is better than nothing but not working brilliantly as they tend to leak overnight.

I think we need a serious plan of action. I'm also wondering if I've been a bit too 'fluffy' with the SPN and DN. They are both really nice women, but I tend to go into defensive humour mode in difficult circumstances and had probably not made it clear enough how much we and particularly I, am struggling.

Your Mum is obviously wanting you to move in and take over.

Yep, I think that's basically it - she just want's someone to swoop in, take over and make it all go away.

She still keeps talking about getting him downstairs and out into the garden, and how is it's not cancer we need to be getting him up and seeing if he can have physio to 'make him better'.