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Elderly parents

Dad dying, how to cope with Mum

819 replies

MintyCedric · 28/04/2020 23:35

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.

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MintyCedric · 02/01/2021 11:11

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.

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MichelleScarn · 02/01/2021 11:04

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.

Snog · 02/01/2021 10:40

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.

Candleabra · 02/01/2021 10:18

@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.

DPotter · 02/01/2021 03:12

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.Flowers

MintyCedric · 01/01/2021 22:17

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.

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Candleabra · 01/01/2021 22:05

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?

MintyCedric · 01/01/2021 22:00

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 Grin

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Candleabra · 01/01/2021 21:46

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.

MintyCedric · 01/01/2021 20:53

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 Sad and then horrendously guilty and wicked.

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Words · 01/01/2021 17:30

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.
ThanksThanksThanks

C0NNIE · 01/01/2021 17:02

I have no good advice but just to give Flowers.

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

Candleabra · 01/01/2021 16:50

@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.
lozster · 01/01/2021 16:42

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.

Candleabra · 01/01/2021 16:28

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.

DPotter · 01/01/2021 15:44

Sorry - that's a slow car crash

DPotter · 01/01/2021 15:43

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

MintyCedric · 01/01/2021 13:53

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.

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MintyCedric · 01/01/2021 13:27

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.

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Skylor · 01/01/2021 13:01

I'm so sorry OP I totally get what you mean by your mum being an emotionally needy dementor. I have zero advice as we are in different countries and all I can do is let my (childless) sister vent at me and my brother, both half the globe away. You are doing everything you can. Take care of yourself. Flowers

MintyCedric · 01/01/2021 12:53

Tummy bug might be the way to go...🤔

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MintyCedric · 01/01/2021 12:53

She could manage for a few days physically...she's just so emotionally needy...literally a RL dementor!

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NoSquirrels · 01/01/2021 12:30

Respite for your dad not a great idea then! But respite for you is what’s needed, definitely.

Can you tell your mum your GP has advised you need a week to rest, and advised you to arrange extra carers otherwise you’re at risk of a breakdown? Would she listen to the voice of authority from a GP regarding you?

Otherwise, no reason why you can’t be track and traced... except it won’t give you the planned break so more panic whilst things are arranged last minute?

MintyCedric · 01/01/2021 11:42

I think the week off for me would be great, if only I could figure out how to broach/navigate it. Honestly I'm tempted to just say I'm having to self-isolate but feel like it would be tempting fate a little too much.

As for respite for Dad...when he went in in August it was probably the most God-awful, stressful 4 weeks of my life as was having to deal with mum being alone and in histrionics every five minutes, taking her to see him, visiting on my own account, micromanaging the communications between her, CHC and the home. It was frankly fucking horrendous. I was referred to the community MH team by the end of it for suicidal ideation but by the time they got in touch things had calmed down.

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MintyCedric · 01/01/2021 11:38

The only way out of this is through it. Buy yourself a year's supply of vitamin D tablets and tell yourself that when you get to the end of the bottle then life will be better.

Haha! I do take Vit D and need to order some more so I might just try that.

I do feel better for venting but sorry if I've brought anyone else down in the process.

I had a lovely positive chat with my best mate yesterday afternoon but have been feeling like shit since midnight.

Going to go home shortly, make myself do some writing and start reading The Selfish Pigs Guide to Caring.

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