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.

What Knotaknitter said - much as I feel for your mum, pulling all this passive aggressive stuff just isn't on. If she 'can't remember' what has been agreed (for whatever reason), then maybe you could get a whiteboard and write things on there. My dad couldn't get what would constitute something that warranted calling an ambulance for mum (or phoning me at all hours) so we did a large, laminated flow chart for him that he could follow even when totally flapping. And if he phoned me, I could just ask him what the flowchart said.
My dh has a tactic for dealing with people being verbally abusive or trying manipulation called the fuckit bucket. Just let the crap slide off you (invoke the protective power of MN) and put it in the bucket where it belongs. And feel my hugs from afar

Your mum is feeling sorry for herself. But it's her problem. You can help her solve it by talking her through the options available, but she can't demand that you are her carer. And if you want to keep your own health you need to reserve yourself for the jobs no-one else can do (like talking through options with her) and refuse to do anything that can be outsourced.

It helps if you can train yourself to detach emotionally. Pretend she is a lab rat - observe what you do and what her reaction is and mentally file it away in a Results folder.

And I love Dibbler's flow chart - like an in-family 111 service

The difficult thing is I can't tell if she's doing it on purpose, panicking and therefore a bit fuzzy or actually losing the plot. Shelve that question. It doesn't matter at the moment. Just worry on what the inputs and outputs are, the concrete results of your actions, "If I do this, she will do this, and I can manage that result by doing this"

She's on reasonable form today. Am starting to think she's worse the more I do!

The more you do I guess the more she has to go OTT and create the drama so it's all about her...

Perhaps she doesn't like you sharing the load as then she can't be the put upon devoted hard done by wife getting zero help?

Who knows?! I'm actually a bit past the point of caring at the moment.

I vaguely remember going through this last year when dad was in/just out of hospital. I got through it then with the help of counselling so it can be done.

I think over the years she's kind of trained this knee-jerk, drop everything reaction and guilt complex into me and I need to break away from that.

Am starting to think she's worse the more I do!

I think you're right.

Absolutely step back.

Am starting to think she's worse the more I do! Probably! Draw your lesson from that.

I'm actually a bit past the point of caring at the moment. Hang on to that feeling. It'll help protect you.

I think over the years she's kind of trained this knee-jerk, drop everything reaction and guilt complex into me and I need to break away from that. People learn how to cope. If she didn't have much scope as a woman then passive aggressive guilt tripping may have seemed the only effective way to persuade people to help her.` Sometimes finding an explanation for unpleasant behaviour makes it easier to avoid being emotionally affected by it.

Well notwithstanding an emergency visit Monday evening to get Dad on the commode...it's all running a bit smoother this week, touch wood.

I've been in work the last couple of days so just giving them a call of an evening.

Dad's companion carer has been round for two hours so I've just had Mum round to me for cake and coffee and a fuss of the cats which went really well.

No news on social worker or respite care yet but will follow that up at the end of the week or next Tuesday when we're due a visit from community nurse.

Hope everyone else is having a reasonably week so far.

Glad your week is going a bit better Minty.

Good to hear, I hoe things settle a bit for you

Still no news about a social worker or respite care but apparently the community nurse is coming out on Tuesday (which is a bit of a pain as I'll be at work but then maybe that's not a bad thing).

Stayed over last night, got here at 5.30pm and it's been OK but I'm still here as mum had medical appointments this morning and couldn't leave dad on his own. She's back now and I'm desperate to get home but don't want to cause offence and need to try and get him on the commode before I leave.

Anyway, minor moan as otherwise (touch wood) things have been pretty steady for the last few days. Fingers crossed for a full day at home writing with my cats tomorrow!

Minty. So glad you have more help.

Hard as it may be though you must distance yourself.

Losing the will to live again...think I'm just going to have to accept that's the way it is from now on.

What's happened now? You don't have to live your life in despair, no matter how it feels like it xxxx

Minty
Are you being pulled back in? From your updates that's what it sounds like to me. Apologies if I'm wrong.
If not....

take a deep breath and step back.

No more over nights - you're working. you can't afford to loose your job. you have a DD. She can't afford for you to loose your job.

Remember what I said - all the time you are there, the statutory services will let you get on with it. Your Mum will definitely let you get on with it.

One more phone call to the GP surgery - tell them you're stepping back. The situation is shit and you can't help anymore. Your DM is unable to cope and your Dad needs admitting to somewhere now, today. Don't negotiate. Just tell them and then say Goodbye and hang up. If nothing doing by this evening - call 999.
Sorry but there are times when you have to stamp your feet, turn on the tears and play hard ball. And yes I know I'm mixing my metaphors.
And most importantly - NO MORE OVERNIGHTS.
There - you can blame some bossy woman on the internet. Please promise me - no more overnights, please.

I've had good cry and am feeling slightly better.

It's the whole situation not just mum. Workload is increasing, dad is much the same but now they have pretty much written off the original diagnosis in favour of old age/frailty so we could be in this boat for months or, who know, may be longer.

Even when I'm not there I'm constantly on edge, making calls to check in, out of the loop now with the professionals that are checking in, and always waiting for the next phone call from mum with some kind of crisis.

It really doesn't matter where dad goes, because there will still be mum to deal with, and even though there are options for her you can bet that won't be straightforward.

I'm basically trapped until they are both no longer here, which could be another 5-10 years. I feel like I only exist for other people.

I'm staying over tonight as its mum's birthday.

In two weeks I'll be summer hols but how the hell is that going to work. I need a proper break from all of it but I cant even have a conversation with mum about it.

Oh sweetheart, I so know that feeling of there being no escape from it all. But you have to look after yourself in order to cope long term, and that means having a proper break to recharge.
Something that has helped me along the road is thinking 'what could I realistically do for 10 years while remaining sane and giving ds the childhood he deserves'. And then firmly sticking to that. Now both my parents are dead, and I don't have a single regret about the stance I took, and know that it led to a sustainable position for them to the end.

Your mum doesn't get to put everything on you, and you can push back to not dance to her tune. You and your dd must come first

In some ways mum herself hasn't actually been as bad as I suspected she might, but the sheer relentlessness of it all is overwhelming.

We've had some other family stuff to sort out so popped round this morning and was still there when the companion guy turned up. He actually asked me how I was and I promptly burst into tears.

I've contacted local counselling service again.

Have got absolutely no WFH done today but it is what it is. I'll have to catch up another time.

Oh Minty - I know it's hard and I don't mean to be mean.

CMOT is absolutely right - you need to look after yourself. You can walk out of the trap. It will be difficult and will feel bad at first, but this is a marathon, not a sprint and you need to pace yourself.

I would try and get out of the overnight tonight. It's mid week - you probably have work tomorrow. Celebrate your Mum's birthday with her at the weekend.

Reduce the check up calls to morning and evening. Don't answer your Mum's calls when your at work.

Let the professionals know you will not be around for your holiday and only tell your Mum at the last minute and for heaven's sake go and holiday and enjoy the time with your DD. No negotiation with your Mum - GO and stay gone, ie don't come back early, keep the check-in calls to morning and evening if you must.

I know you're feeling low - please try to get hold of that counselling and don't be put off.

posts crossed - sorry. so pleased you're making contact with the counselling service

Have a counselling assessment (again!) on Monday morning. I'll be at work but will go and take it in my car.

It's school summer holidays so no chance of mum not knowing I'm off and there's no way I can pull out of tonight, but I will come home fairly early doors as I'll be wfh and have so much to catch up. Also have to get DD to and from school.

Hopefully seeing best mate tomorrow evening.

I'm not calling in the morning on work days now, but for instance, mum's just called me even though we're going round in 10 minutes.

She messaged me something completely non essential while I was at work yesterday which I didn't get as was away from my desk for a couple of hours and left my mobile there. She was onto DD having a meltdown cos I hadn't answered after 40 minutes...

It's school summer holidays so no chance of mum not knowing I'm off Well, in that case you'll just have to "be ill". Start getting frequent migraines. "Accidentally drop your phone down the toilet" so you will be uncontactable for a few days. Keep leaving your phone behind until it becomes the normal for her not to get a reply for 40 mins, 2hrs, 24 hrs. Whenever you're tempted to give in, think "Am I happy for this to be the pattern for the rest of my life" - remember? - like you did when you had a toddler?

You're not doing your mum any favours - one person can't be a safety net - she needs to be building up a group of people, in practice hooking well and truly into a network of carers, and while she has you, she won't do that. I'm not saying this to blame you in anyway, just to stiffen your resolve to give you one more reason to step back to set against those reasons which are making you want to give more than is feasible.

I know...I need these pep talks because it's so fucking hard.

She wanted me to go back round there after I dropped DD off this morning and was in floods of tears when I left. Said I had to go home and get some work done but would come back for lunch prior to picking DD up (which limits the time scale).

As it turns out I don't have to pick DD up but I won't be mentioning that.

I think you're right, I will just have to lie.

The thought that there could be years of this ahead honestly makes me want to drive my car into a wall.

Mum even as good as admitted last night that she knows she's being a pain, but she just won't make any effort to engage with anything/one else.