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.

Thanks all.

Bit calmer now and on the upside dad has just woken up after sleeping like the dead for about 18 hours, bright eyed, speech understandable and put away 2 scrambled eggs and a cup of tea.

Skylor venting helps a lot even if you are in another country.

I genuinely don't think I'd be alive right now without my best mate's support.

You vent away as much as you want to Minty

I first commented on your thread way back in the beginning. I advised then to step away and you were able to. It's so easy to get sucked back in. All the time your are coping (oh how I hate that word) you will be left to get on with it, especially as your Mum has strong views.

I think contacting your GP as soon as surgeries open is a really good idea and when he or she asks what you want - say you want to his / her permission to step away. In fact you want a straight instruction to step away.

Your daughter needs you and you need to be healthy for her.
I think I mentioned way back that this type of situation is a slow care crash - everyone can see what's happening but can do nothing about it until the inevitable happens. Step away - give whatever excuse you want to your parents. If you have the energy inform SS that your father is vulnerable and being neglected and that you are beyond being able to help. then it's on them.

I know it's easy for me to say and oh so difficult for you to do. You are be definition the living example of doing a thankless task. Please for your daughter - step away

Sorry - that's a slow car crash

Oh I'm so sorry to hear things are so bad. I was hoping you hadn't posted as you'd managed to find a balance.
It is easy to say this and I know - I do truly know - that you can't see a way out - but you can't carry on like this.
Phone social services tomorrow.
Phone your gp.
Say you're done.

Your parents need help - yes - but it doesn't have to be your burden alone.
Don't destroy yourself.

No words of wisdom but I had to log on and say how much I identify with your reaction to all the messages about 21 being better. I know everyone has their own issues but I hate myself for how much I hate people whose only problem is COVID stopping them meeting their family/going on holiday/whatever other jolly they are missing. Post COVID nothing will be different for me either.

@lozster

No words of wisdom but I had to log on and say how much I identify with your reaction to all the messages about 21 being better. I know everyone has their own issues but I hate myself for how much I hate people whose only problem is COVID stopping them meeting their family/going on holiday/whatever other jolly they are missing. Post COVID nothing will be different for me either.

I do agree with that. This time last year I was in a very similar situation and in complete despair. In fact I was so desperate I was even jealous of people who were admitted to hospital as at least they'd have a break. I know that's an awful thing to say.

I have no good advice but just to give .

What you are doing is desperately hard. But if you don’t say no to your mum soon you will have a breakdown.

Invent an incapacitating physical illness this evening to at least get a breathing space.
Don't allow your mother to destroy you.
Say to yourself 'this is big, but I am bigger'
You need to grasp back some agency, for your sake and your daughter's.

In fact I was so desperate I was even jealous of people who were admitted to hospital as at least they'd have a break. I know that's an awful thing to say.

I have felt like that too. And occasionally when mum throws it at me that I have friends who have long since lost both their parents, I just feel envious and then horrendously guilty and wicked.

I know, it's awful for you. It's the guilt and obligation that keeps you tethered to the situation. Your mum has used these tactics all her life, and they work.
You can climb out though.
Please get SS involved, properly this time. You must let go for your own health. You don't know how long this situation will persist. No agencies will do anything other than pay lip service if an adult daughter is there doing all the work.

Social Services were only contacted a couple of weeks ago by the care agency re the lack of hospice support.

They called and spoke to mum, then inphoned and had a chat and they said we weren't in their remit.

GP won't come out. When the practice nurse visited a couple of weeks ago, dad was asleep so she just left. Community nurse team washed their hands of us in about June. We had to call the end of life care of team about 6 weeks ago because dad was v. agitated. They came out and said we could manage it with oramorph. Mum's called them a couple of times since and thats been their answer over the phone. It does work but he tends to get a bit more agitated before he settles down.

Even if someone does come out our experience so far has been that these agencies simply don't care about the carers. The patient voice is all that matters and they just will not engage with anything that might make our lives more manageable.

I just hope and pray that the vaccine will mean groups for elderly people can start up again so I can encourage mum to get out and build a support network. She is talking about sheltered accommodation when the time comes. I have bought her The Thursday Murder Club for inspiration

It sounds horrific. You're right, the carers voice is lost in all this.
And covid has just amplified this.
I meant to call the GP for you though. I'm worried it sounds like you're at breaking point. You do have a choice to say no.
I can't remember if you had any counselling, has this stopped now too?

I'd had two counselling sessions when I hit rock bottom in August. They referred me to the mental health team so the counselling input ended.

By the time I had an assessment with the MH team a few weeks later, things were on a much more even keel so we decided that no further input was necessary but of course I wasn't then referred back to the counselling service.

I was supposed to double my ADs a couple of months ago but haven't as yet as I can't really see the point. I need the circumstances to change, not to render myself catatonic with drugs.

The patient voice is all that matters and they just will not engage with anything that might make our lives more manageable.

This is exactly why you have to physically walk away.
If there is no one there to care the statutory services have to get actively involved. It's been like this for years, since I was staffing in the 1980s. You have to walk away. I worked with a lovely lady whose Mum was being discharged miles away and she couldn't get there. She was tying herself in knots thinking of ways to get to her Mum's house. The SW basically told her - if you are there when the ambulance pulls up with your Mum, you will be left with no help. If you are not there, they will take her to a place of safety. Do not be there.

Minty you're absolutely right - there's no point in taking ADs if the reason you need them is still there. You're in a shitty position - it's totally understandable why you feel like shit.

Please step away - yes it will make the situation between you and your Mum worse but really it sounds as if it's virtually at rock bottom anyway.

Don't go over tomorrow (Sunday) - tell your Mum you're ill (not feeling ill ). Spend the day resting / sleeping / taking a walk / whatever and then on Monday get an appointment with the GP and contact SS - have a script written out so you tell them everything.

Ads and counselling are only going to be of help if you can step away - sorry if I'm repeating myself, but it's the only way.

@Dpotter is spot on.
That's good advice. If you're there, they will let you carry on.
Remove yourself and see what happens. Your parents are adults. I know it's hard. Put yourself and your daughter first.

Oh Minty you seem such a lovely giving person. I really feel for you.

You absolutely do need to prioritise the needs of yourself and your dd above those of your parents and to draw healthy boundaries. Your mother doesn't need to agree these boundaries (would be nice if she did!) but you need to enforce them. Counselling can be v helpful as you do need to develop skills to be able to do this.

It is not your responsibility to fix all problems for your parents.

It is your responsibility to take care of your own mental and physical health and to be a good enough (not perfect) parent to your dd.

Yes what DPotter says, if you do get unwell and incapacitated yourself to be unable to support your mum will have to accept the help and it will have to be provided. If that support is put in place before your own health is so impacted then it has to happen. I'm actually shocked that your DM is so selfish she doesn't care her demands are impacting on you and her grandchild.

Thank you everyone.

I feel a lot better for yesterday's mega rant to both you guys and my best mate via WhatsApp.

Before I agreed my sabbatical we agreed a timetable for when I would be at mum's which was based around DDs school times (I'm taking her to and from to reduce virus risk of public transport).

With the Christmas holidays it's all gone out of sync which has been good in some ways as I've had more lie ins but then the rest of the day has been eaten up that much quicker and my sleep is shot to shit. It was gone 4am before I dropped off last night, 2.30am the night before so because I'd been in such a state yesterday morning I was exhausted and spent most of the afternoon dozing on the sofa when I eventually got home.

I think having more routine will help. I'm also going to try not to call mum quite so much, which will go down like a lead balloon, but such is life.

I'm actually shocked that your DM is so selfish she doesn't care her demands are impacting on you and her grandchild.

She is very self-obsessed which I think is a symptom of the situation and the fact her world is arguable even smaller than mine right now.

What really irks me is that she seems to think because DD is 16 I can just let her get on with it and devote all my time and attention to her instead. This has already gone badly wrong once this year, and although DD sees her Dad he's not the most emotionally intelligent pea in the pod and she doesn't get on with his partner so we can't really rely on them for support.

There's also the oversharing of personal stuff without any consideration of the fact that I'm dealing with the deterioration and ultimately the loss of dad who I absolutely adore.

I think she is somewhat jealous of my relationships with him and DD. She and her mum were very close and alike and I think she assumed having a daughter would guarantee the same for her, but I am completely my father's daughter, whilst at the same time having the closeness with my DD that she wishes we had.

@MintyCedric

In fact I was so desperate I was even jealous of people who were admitted to hospital as at least they'd have a break. I know that's an awful thing to say.

I have felt like that too. And occasionally when mum throws it at me that I have friends who have long since lost both their parents, I just feel envious and then horrendously guilty and wicked.

I understand your envy

It's really easy to lose sight of who it is that is being unreasonable and for that you sometimes need someone outside of the situation to provide their perspective. If your mum is a functional adult then she doesn't need parenting, she can sort out her own problems. It is not your responsibility to manage her life for her. It sounds like you are taking care of everyone but there's no-one taking care of you.

If you have five minutes to call your mum then do that. If she wants to complain for an hour it doesn't mean that it has to be to you. My husband always used to call his mother when driving because it meant that there would be an absolute limit on the length of the call and he had an excuse to get off earlier if he needed to.

Hope you slept better and are feeling better today @MintyCedric

Hi @MintyCedric- I was following you before, but fell off mumsnet for a while and lost you. I’m so sorry that your situation is still continuing and e NHS madness and lack of support for your dad is leaving you high and dry and so stressed. Your mum’s situation is her own doing though. Unfortunately it does affect your dad and you. My mum was the same. I understand. (Although I didn’t have Covid to deal with...) My dad had MND, and lived longer than expected as well.

@justilou1 I'm sorry you've been through this too.

Thanks all again for your support. Am feeling much better than I was, not least for having been home since Friday lunchtime. Hopefully will have a bit more structure this week which will me to capitalise on my 'time off'.

I managed to finish and post a fanfiction I'd been working on yesterday which was really well received and reconnected with few friends from that part of the internet, so that was a really nice boost.

Spent far too much time sleeping and cba to cook so got takeaway but such is life.

Visited today...Dad was briefly quite 'with it' and communicative...told me he wanted a Chinese for dinner ('from the shop...don't let your mum cook it') and a glass of white wine. Then asked for tea and cake by way of lunch. Mum didn't have anything in so I popped home and got home some Wensleydale and Christmas cake which he ate a bit of, before having a sleep.

Then he called out for me...and so commenced a couple of hours of semi-conscious, distressed ramblings about how he can't go on, wants to die, asking us to call the GP or an ambulance but not specifically stating he's unwell.

Called the end of life team in the end. They have put in a request for a GP visit from our surgery and got out of hours to call, who helpfully gave me a lecture about how under pressure the NHS at the mo .

The overall impression they give is 'we've got enough on our plates, why are you expecting us to bother with an 82yo who can be made comfortable/zonked out with drugs?'