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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

....to crack up right about .... NOW

106 replies

HorribleDay · 04/03/2012 18:48

I am a woman on the edge right about now. DS is 14 months.

  • FIL has cancer. My MIL died of the same cancer in July 2011. We nursed her at home because local hospice had no beds (for 5 days) until it was too late to move her. Very traumatic and horrific to watch (tho proud of doing it). FIL end stage now (were told at Christmas he had a few days so really glad we've had the extra time). He's in said local hospice, for symptom control. He's apparently got anywhere between a few days and who knows how long left, but is confused (brain secondaries), chest rattling (lung primary), breathless, banging headaches not controlled with codiene, extreme dizziness and can't walk without falling. It appears he may be discharged from the hospice this week as he's 'not got only a few days yet', with the plan to readmit when he deteriorates further (to what, unconsciousness???).
  • AIBU no. 1 - to want FIL to stay in the hospice until the end, no matter how long it takes, so we don't have the trauma a mere 7 months on of caring for him until death at home?
  • My nan has a recent diagnosis of dementia. MH services won't take responsilibty for her care because they say it's social care needs (food, prompting with meds, reminding not to go and walk in the local secluded woods alone, not to let strangers in who pitch up on front door for 'a drink' etc etc). Social Services won't take responsibility for her care becasue a. she can wash herself (this seems to be their only criteria...) and b. it's the MH team's problem.
  • AIBU no. 2 - to want SOMEONE to HELP me and my mum, who has major physical disabilities, to support my Nan at home so she doesn't need a care home (at vastly greater cost) and what can I do with the service buck passing??
  • My mum is about 6 stone overweight, smoker, and has a hernia op booked in 4 days (urgent referral).
  • AIBU no. 3 - to be petrified she's going to die on the operating table?

And finally, thanks for sticking with me, AIBU no. 4 - to crack up right now? I work FT, as does DH, and we have a 14 month old DS who is amazing - we share childcare so one of us always has DS. Which makes all of this harder to cope with. No healthy family nearby (all around 200 miles away). DH is struggling to cope with the loss of his beloved mother (as am I) and the imminent loss of his beloved father. I feel like I'm trying to hold everyone together, and was hideously ill last week with antibiotics for an abscess that I am sure is stress related.

Apologies for the mammoth post and several spurious AIBU - I don't know what to do bar sit in a heap and cry at the moment. And then I will pick myself up and carry on....

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noodleone · 04/03/2012 18:56

I didn't want to read and run and hopefully someone more qualified to comment will be along in a minute. It sounds like you are doing the best you can in very difficult circumstances and doing a great job to have got this far

hiviolet · 04/03/2012 18:57

Oh that's awful, I'm sorry.

When my grandad was very ill with cancer towards the end of last year he was admitted to the hospice for respite care (my 82 year old nan was his main carer). I was pretty shocked when my uncles were told to start looking for a care home, because although he was too sick to go back home, he wasn't sick enough to stay in the hospice. It was awful. I mean moving him was bad enough, but he would get nowhere near the same care in a home, or a hospital for that matter.

In the end he deteriorated quickly and ended up staying in the hospice.

No advice, but I understand how awful you feel. You did an amazing thing for your MIL too.

HorribleDay · 04/03/2012 19:08

The palliative care nurse I cried on today was totally understanding (and brilliant) but think their limited in influence. It's because of the still raw trauma of MIL that we just cannot do it again. Almost feel (and I ABTotallyU here I know) that we SHOULD get to 'keep' the bed because it was because of bed pressure that we ended up in the situation in July if that makes sense? Like tere should be some flexibility.

That said he really was deteriorating today so it may become a moot point... Which in itself is really upsetting.

I think with FiL and my Nan I'm at a stage of wondering how I'll you have to be to get decent, appropriate care - let alone the best care (which FiL would undoubtedly get at the hospice - they're amazing - hence we don't want to have to bounce between hospital or home or care home and there for the next few days, or weeks.

But then - Feel very guilty that if I insist (as much as my insistence makes a difference) on FiL staying, then another family will go through what we went through in July.

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HorribleDay · 04/03/2012 19:10

And thank you, and sorry to hear about your grandfather.

Just had a random paranoid thought that I'll be accused of trolling because of the drama drama - I'm not I promise!! Have posted several times at Christmas about FiL. And Jesus, you couldn't MAKE my life up right now :(

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Hassled · 04/03/2012 19:14

Oh dear god - just the fact you're getting through the days is an achievement. You have a horrendous load to carry and I wish I had some great advice or could make a single constructive comment. I'm sorry you're going through all this - it must be pure, unmitigated shit for you.

HorribleDay · 04/03/2012 19:18

I feel like the family lynch pin so I can't crack up - poor DS tho is being dragged from hospice to doctors to 200 miles away to Nan - good job I have a chilled adaptable child!! Just wanted to, and want to, be doing fun stuff not horrid stuff with him - tho he did enjoy drawing on FiL's medicine card today and using his walking frame as a walker Grin which made the nurses and the other guys in the bay chuckle :)

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HorribleDay · 04/03/2012 19:21

Do feel a bit cursed tho (feeding into paranoia about my mum's op) - I must have been a right biatch in my past life!! Think the teams who are spuriously 'involved' with my nan privacy think I'm a right biatch now to be fair...poor them!!

Count blessings count blessings...

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griphook · 04/03/2012 19:22

I wish I had something helpful to say, other than I'm sorry your going throught this.

RandomMess · 04/03/2012 19:23

Is there some reason why they are not using morphine to help your FIL control his pain Sad

So sorry you are stuck in this nightmare Sad

Alliwantisaroomsomewhere · 04/03/2012 19:23

You poor thing. I have no advice to give and I have not even been through half of what you are having to go through.

Just want to say, in all respects: YANBU.

glenthebattleostrich · 04/03/2012 19:26

No real advice, just wanted to send you a huge unMN hug.

DS will be fine, kids will find anything to play with and have fun and he'll provide no end of joy for your sick relatives.

StealthPolarBear · 04/03/2012 19:27

I am so sorry. You are going through a hell of a loit. How on earth do you bith wirk FT and not use childcare? You must be shatterered. Can either/both of you cut your hours at all?

HorribleDay · 04/03/2012 19:28

Think with morphine they're trying to hold off as long as poss because of dizziness - today was the first time FiL owned up to anyone apart from us that the pain relief not holding him. Nurse was quite relieved (as were we) as he looks in pain but denies it to nurses, then tells us it's unbearable.

He told me today he wants to go home :( that was a fun conversation. Not sure how much he understands cognitively anymore - seems limited - bit worried docs will discharge him just on his say so (nurses say they won't...)

Thank you all - immensely helpful to vent my thoughts and feelings.

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squeakytoy · 04/03/2012 19:32

I think you have too much on your plate to be able to care for your FIL at home. Having helped my mum to do it with my Dad, it is very very difficult without any other issues going on.

I feel for you, it must be a very very stressful time.

cuttingpicassostoenails · 04/03/2012 19:34

You poor love...what a horrible time for you and all your family. I think you will find the strength to cope with whatever happens and will probably need to collapse in a heap when it's over. It seems unfair that you are having to cope with so much trauma in so short a space of time.

My best wishes to you all.

HorribleDay · 04/03/2012 19:35

It is :( and you're right. Guilt immense tho. Also want to go to look after my mum post op but can't leave DH and DS at moment so think she's annoyed too sigh... Can't win there!

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ginmakesitallok · 04/03/2012 19:35

Re your Nan - write to Chief Exec of trust/Health board in your area and to the CE of the local Council - it is disgraceful that she can't get more help. You should not feel at all guilty about not being able to take on the caring role for your DFIL, they CANNOT discharge him home if there is no-one to care for him. Refuse to do it - it might seem harsh but if you are at all willing then they will take it as a green light to discharge him. Let them know there is no-one at home to look after him - they will have to look at other discharge arrangements.

If your Mum wasn't well enough to undergo the op then they wouldn't do it (urgent or not) - I'm sure she'll be fine.

Grin that DS is keeping everyone amused, when DP's granda was in respite care the old folk loved it when we visited with our DDs - sometimes young kids are the best medicine!

ginmakesitallok · 04/03/2012 19:36

Oh - and your local carers centre might be worth a ring - they'll have lots of useful contacts

HorribleDay · 04/03/2012 19:37

Thank you cutting - it feels relentless. Think when I sit back and look at it on paper it really does make me think 'wow' :(

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HorribleDay · 04/03/2012 19:42

Hadn't thought about going to CE of council - good plan. It's insane - hours of phonecalls back and forth - I've turned into the Caree from Hell, the kind I'd have hated when I worked in MH services (am lecturer now) - bizarre that I KNOW how to navigate the services an still get nowhere - I feel so bad for anyone who doesn't know where to turn.

Just found some carers info for my mum for local dementia groups - hoping they can help.

I just cried and cried today (I don't 'do' crying..) on the palliative care nurse. She was amazing - they deserve medals. Will def be writing to local commissioning services to praise them when it's all over (tho maybe not the system!)

Have horrible thoughts where I just want it over with - then feel beyond guilty for thinking that.

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rhondajean · 04/03/2012 19:47

Oh you poor thing. Of course you are not being unreasonable about a y of it - although it think aibu3 is very unlikely to happen, I realise she she has raised risks but I am sure she will be okay.

I'm more worried about you being okay. Do you have a good support network for yourself - friends etc to talk to, a little but of time for yourself?

HorribleDay · 04/03/2012 19:59

No time for me at moment - we decided to have me work FT and DH work weekend nights to avoid the £850/month childcare fees and so that DS could be a bit older when in nursery - so means one of us always has him. Mates are amazing but I don't like to moan / burden so tend to hide away when stuff's hard (and moan on MN instead Grin). Tend to carve out time fri / sat / sun eve when DS in bed to read (doing a PhD) and watch trash on TV but all antsy and can't relax tonight. And of course don't want to burden DH with my 'stuff' as he's struggling enough.

Do wonder if I'm heading to a spectacular breakdown when it's all over :( I am a 'coper' but not superwoman. Just no idea how to protect myself or carve out time at the mo.

Next year we're going on a bloody long holiday tho!!!!!

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golemmings · 04/03/2012 20:11

Hi, I remember your posts around Christmas time and I'm really sorry that things are no better.

Have you talked to mcmillan nurses about your fil? They might be able to help at home if he were to leave the hospice. That might reduce one of your problems. If he was discharged does he have friends who could visit which again might take the pressuse off you and your dh?

I think when you are dealing with end of life care it is entirely natural to want it over as quickly as possible to minimise pain, suffering and indignity. Don't ever feel guilty for that. Especially for somebody as sick as your fil and who's cognitive funtions are starting to struggle.

Realistically is there anything we can do to help like food parcels to save you having to worry about domestic stuff whilst you have so much going on?

golemmings · 04/03/2012 20:12

Can you take a sabatical from your phd for a while or does it provide you with an escape?

HorribleDay · 04/03/2012 20:18

Thank you golemmings - that's such a lovely thought. Much appreciated.

We're - once again - surviving on ready meals and pizza - tho DS fortunately will eat anything so has many meals of tuna pasta / fish cakes / chicken and baby pots / 'little dish' ready meals - all his Christmases have come at once Grin he loves those...! He's a fruit monster luckily so is getting his vitamins!

Very lovely best friend came up (300 miles away) few weekends ago and looked after DS AND cooked stuff for freezer - Best. Gift. Ever!!

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