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.

I can't and I wouldn't but I actually feel like videoing 'a day in the life' and sending it to my bloody boss.

I don't know if our brains change in latter years but people become very selfish. They get less and less control over their life, they find things that they used to do have become more difficult or impossible, it's no wonder that what remains becomes more important to them.

You really need to work on your boundaries and FOG with your Mum from now.

You need to not take on responsibility for her happiness, remember she will never be happy not even if you give up her life and moved in with her.

If she's lonely she can move into assisted living with shared communal areas etc. You still have a child to bring up and you need to work - both non negotiable and DDs NEEDS will always take priority over her.

KOKO

It sounds as if you need an overnight carer. Or, for him to be sedated at night so you all get some rest.

VanGogh the nursing team literally will not do anything unless it's in dad's best interest. They won't catheter, won't give suppositories so I dont hold out much hope for sedation.

He's pretty much unconscious at the moment anyway so don't know if it's going to be an issue for much longer.

Carer just about managed to ascertain that he didn't want a wash or breakfast. He's not responding to me or mum now.

Waiting on further calls from community nursing team and GP.

They are being very odd - all those things are in your dad's best interests. It's no good for him to wet the bed and wander around. He could hurt himself. And lying in wet sheets is no good for him.

We started calling the district nurse every time dad got agitated. So if he was mithering to get out of bed etc, we just called the DN. They pretty quickly found ways to stop us doing that - overnight carer, sedation, syringe driver etc.

Hand hold and hug

Well, after nearly giving us all a heart attack this morning, Dad suddenly sat up in bed at 12.30pm and requested boiled eggs and soldiers.

He's currently watching some kind of detective drama by the sounds of it.

Work have at least agreed to let me do the three days a week I've asked for, which doesn't make my life a lot easier but does at least mean DD won't have to get to and from school on public transport.

If things deteriorate I'll just cross that bridge when I come to it.

During the course of the phone calls this morning, we have discovered that we won't be entitled to any hospice support (inpatient or at home) because dad doesn't have a formal diagnosis of anything specific.

Care homes are taking residents if it came to the crunch but from what the DN said it would be difficult to find one that would accept a patient at end of life stage, and there would be implications for moving dad also.

So basically we plod on until the bitter end with no options other than increasing carers if it comes to the crunch and waiting for the shit to hit the fan.

Minty

The Crunch is here. It's arrived and the shit is indeed hitting the fan at high speed

You're going to think I'm the hardest bitch ever - go home, go home now. Do not return tonight. What happened to your resolve about stepping back? If you Mum can't cope tonight - call an ambulance.
Remember if you are there - you will not receive any additional support.

I am so sorry you're in the middle of this - please think of your own health and that of your DD. Just in case you thought I didn't mean it - GO HOME!!

Care homes are taking residents if it came to the crunch but from what the DN said it would be difficult to find one that would accept a patient at end of life stage, and there would be implications for moving dad also.
Minty I wouldn't take it as red that DN is correct. Now would actually be a good time to get a bed in a care home as they have empty rooms and more goodwill and community support than months ago. They also are better equipped and will be following very high standards of hygiene.
you've had a rubbish week.

Thanks all.

I have been home for a couple of hours, had a nap with my fur baby, wine in the fridge and easy dinner planned, followed by an indulgent bath.

Writing day tomorrow all going well...cross your fingers for me.

Apparently dad has been insisting that his BIL's mum is coming to visit. Pretty sure he's not met her since his sister's wedding in 1973...

Honestly I am still managing to find humour in between the desperate moments. When he woke up at lunchtime he was like cheeky little boy...it was very sweet.

This one helps too...she's such a cuddle bug!

Beautiful puss cat there, Minty.

I've read your thread all the way through, and I have every sympathy for you. My mother is very like yours. She made my father's decline and illness all about her too. She uses emotional manipulation ( or tries) is supremely self centred and wants to be in control at all times. Very rigid and inflexible. Even now that she is in a care home herself.

One thing you mentioned particularly resonated with me. She never once considered that I was losing my father either, as she was losing her husband. Not once. Again, all about her.

It sounds unkind to say, but she has always been this way. Old age has just made it worse. I cant imagine living with her. It would have destroyed me.

Unlike your situ though, he went to a care home and died in hospital. I can barely imagine the stress you are under, and am so glad to hear you are carving out some time for yourself. It's vital. Stay strong, step back. The various agencies will not step up if they know you are there. I simply said I was unable to help them and support needed to be provided. Mother fought it tooth and nail, but had to accept it in the end.

There are moments of dark humour to be found, aren't there. It also occurs to me it is all interesting material for the writing, no ?

Koko.

I recognise the cheeky little boy thing too. Dad was like that. He would absolutely beam when he saw me. I loved him very much. I don't love, or even like, my mother.

I do my love my mum, but we are like chalk and cheese and I am painfully aware of her faults.

At times, particularly stressful ones, she is hard to like but she's always been there for me and we do have a laugh sometimes.

My dad though, is like my soulmate (not in a weird way!). We are just so alike, proper finish each others sentences alike.

...and mum has bemoaned throughout this that Dad is more cooperative with me and when I'm there he will always call for me rather than her.

One day at a time, keep cuddling the cat

My dad had put some photos he liked into an envelope. There was one of me from about twenty years ago with a boyfriend. I said to mum "oh, I wonder why he had this one?" (Feeling a bit chuffed he had a photo of me in his special photos). She said "I expect he thought it was a nice photo of [name of area it was taken]". Cow!

Re being like a little boy - I was feeding my dad, and I said "you've been very brave" (he really was) and he gave me this totally innocent and sincere look and said "have I?" just like a little boy.

I said yes, yes you have.

@MintyCedric i i feel your pain .

My DM became seriously ill following an operation... she ended up being in hospital for 2 months as she caught covid while there .

During this time my DF fell apart . I was supporting him daily, on the phone hours listening and carrying him mentally.

My DM has to go back into hospital as she has developed further serious illness.

I am so depleted and traumatised by everything that has been happening. My mood is low, i am tearful, very anxious and going through some sort of pre grieving process.

I have been signed off work sick and while looking after my parents am also trying to look after 3 DC , 1 of whom has recently been diagnosed with M.E.

I am terrified of losing my mum. And terrified that if anything happens to her then my DF wont cope and will want to end his life .

OP,

I know how difficult it is, I've been through it with my Mum not too long ago. If your father is nearing end of life, all you describe sounds very similar, calling out constantly, immobile but getting out of bed, appearing to be non communicative & then wakes up in great form for a short while. It is alot but the thing is...it does not last forever. Spend your time with him whilst you can, you'll be glad of that later. Try not to think about 'after' & the worries you have about your Mum & her expectations...you are overwhelming yourself. All you can do anything about is the here & now. If there is money, pay for someone to come in if needs be. You need to have a talk with your Mum about what you can & can't do. Tell her no talk within earshot of anyone being a burden or that she can't cope. She must now be strong for her husband who needs to know she will be ok. I know it may seem harsh but you can't be there every time she wants you & you will have to get this across. Does she get out of the house at all? It sounds like she could also do with a break...would your DD take her out for a treat, she might like that, a little respite from what is happening every other waking hour. I would be reluctant to leave a 16 yr old alone overnight...maybe it is just me, but I wouldn't do it unless total emergency.

@IfOnlyOurEyesSawSouls

Oh lord, you poor thing...I can't imagine dealing with that and three kids. I'm very lucky in that DD is very grown up and self-sufficient too, although I feel constantly guilty that everything is so all over the place for her.

It is the emotional load that I find so incredibly hard. Mum has said on several occasions "I wish you could come here and look after him 24/7 for a week and see what it's really like," but honestly I think I'd find that relatively easy.

I don't think DD would forgive me if I actually did a house swap though!

I've really pissed off a good friend over this too. Lost my shit on the way out of work yesterday and made a comment which I realised with hindsight she must have thought was aimed at her (actually it was in the sense it was in a convo between us but my anger was not with her). Messaged her to apologise last night and just got 'OK' as a response. Tried calling her tonight and my call was very obviously declined.

Not sure whether to call round (at a distance) or send her some flowers. I was out of order and thoughtless at a minimum. She's been an incredibly good friend to me in the past.

Thanks Sionna

My mum is no way self-possessed enough to rein herself in unfortunately, however I think Dad is probably not massively aware or, or remembering her wittering anyway.

She will have to get used to me being away a lot for the next few weeks due to work.

As for DD taking her out, there's nowhere to take her really, plus she should be shielding in any case.

As for leaving DD alone, it's not ideal but she is a very capable teenager and my parents are very close by - about 3 minutes away on foot.

Unfortunately her dad and his partner are currently fostering a very challenging teenager, and DD (who has never done regular or frequent overnights with him anyway) is unable to stay with them as a result.

Sorry OP that all of this is so difficult. Hopefully the carers will work out for your Dad. As for your Mum, I think for now during your Father's illness, if she is that distressed & overburdened that she cannot change things for now then there is norhing you can do except support where you can. Address your concerns of her expectations of you & your DD moving in,or all living together elsewhere, down the line. If you live as close as 3 mins away on foot then surely it is not a necessary arrangement anyway. What age is your Mother?....sorry if you've said already. If she is elderly then maybe set up support arrangements sooner rather than later & in advance of any future crisis...or else it will fall to you again. Not that you begrudge your dear Father this time or care... but clearly you are finding your Mother demanding & without boundaries. Give her a little leeway now & address that later when the time is right.

Sadly it's good that you know you can't live together as you did that a few years ago. If she repeatedly brings it up etc you can be factual "that didn't work for DD and I when we tried it before so it's not an option"

KOKO