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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....

OP posts:
HorribleDay · 04/03/2012 20:21

PhD stressful but my only 'legitimate' excuse for a few hours a week to myself. Supervisor fabulously slack so can get away with 'just' reading for a bit.

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Jajas · 04/03/2012 20:23

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HorribleDay · 04/03/2012 20:24

Macmillan nurses are brilliant but all hospital / hospice based in FiL's area - there's one community Macmillan nurse who is swamped. District Nurses can help with the medicines and basics of care but can't be there 24/7 - am terrified he'll die alone at home between visits and don't want DS there when he is dying (whether at home or hospice) but equally don't want him passed from pillar to post. Have a couple of good mates locally but again don't want to burden them - am shit at asking for and accepting help...and consequently own worst enemy!

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HorribleDay · 04/03/2012 20:26

jajas - so sorry to hear about your mum :(

Never even occured to me to look into Marie Curie as no one has mentioned it locally - thank you will see if there's anything they can do.

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Jajas · 04/03/2012 20:29

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HorribleDay · 04/03/2012 20:32

That does sound ideal (tho sorry to have raised emotions) - will get on Internet and have a look, thank you. Think SS have carers who can pop in up to x4 daily for washing etc but we've used up our 'free' SS input since he was discharged from hosp in Jan so will be £££.

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Jajas · 04/03/2012 20:34

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HorribleDay · 04/03/2012 20:37

Thank you :)

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CroissantNeuf · 04/03/2012 20:38

HorribleDay -so sorry to hear what you're going through at the moment.

A couple of thoughts....

-your FIL won't be discharged home without a care plan being in place. There should be a multi-agency meeting that family should attend so you (as in the family not 'you' personally) can express any concerns you . Many hospices have a 'Hospice at Home' type service where their nursing staff (the equivalent of Macmillan nurses) go into patients homes.

-re: your Nan - my Mum found that Age Concern (or Age as I think they are now called) were very helpful when she needed to find out about options for my Gran.

Downnotout · 04/03/2012 20:41

I am sorry you are going through this. I cared for dad at home but when we realised the end was near we moved him to the hospice. He died the next day just after i had gone home for the night and I never really got over not being with him at the end. I felt I had let him down and that he should have been at home with us. It was just that at the time I couldn't face him dying in the house.

Some days when he was at home I wished for him to not wake up. Not so I could be free from him, just so he didn't have to suffer anymore. Once I thought I had killed him because I mistakenly gave him too much morphine. I sat downstairs listening for any movement in his room because I didn't dare go up to see if he was breathing. I half hoped he was gone.

The only advice I can offer is to take care of yourself. I know howit feels to be the lynch pin keeping everything together. Get all the help you can. I had to fight for everything for him, including for them to take him to the hospice. You probably feel you have to stay strong because if you crumble everything will fall to pieces. I know I did.

It is important that in the end you know you have done everything you could because when it's all over, you have a long time to think about it. Don't be ashamed to cry. I got very angry.

Sorry not to give better advice. We are all thinking of you. X

HorribleDay · 04/03/2012 20:53

thank you both and downnotout sorry to hear about your dad.

Have suggested Age Uk and Alzheimer's Society to my mum - whether she rings them or waits for me to do it for her is another issue!

I think part (a big part) of the fear is because with MiL we only had support from inpatient Macmillan service who couldn't come out to us, the one community Macmillan nurse was on AL that week with no cover. So we just had GP daily visits and District Nurses a few times a day for medication - they offered to wash her but she was so proud before her illness that I did it instead. They were amazing but had such a high case load that we didn't want to take up more of their time than was necessary. She battled for 6 days after she went to bed, the last 5 she was in and out of consciousness, skeletal and agitated but heavily medicated. DH was exhausted And FiL couldn't cope with seeing her like that so I stayed with her the last night and dozed next to her on the other bed - she kept reaching over which I know was prob reflex but I was so scared I'd wake up and she'd have gone. It's left me with nightmares :(

So I think because more support wasn't offered, we never asked, so it wasn't offered .... So I think we def need to ask many many more questions pre any discharge with FIL.

Sorry for the mammoth posts - I'm still struggling with MiL's death so FiL's impending death is proving quite retraumatising - I just buried it all with Mil and never had time to deal with it :(

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fedupandtired · 04/03/2012 20:56

I'm really surprised with how your local hospice are being. We lost my mum a month ago and she went into the hospice just before Christmas. They were amazing. Initially it was with a view to just getting her pain managed with a view to going home but she went downhill so quickly it was decided home wasn't the best place for her (my step-dad had lost his mum in Nov too). Discharging her was never even mentioned and they were happy for her to stay until the end. I can't believe they can be so different.

It sounds like you're under an awful lot of pressure right now. It's not surprising you're ready to explode.

hiviolet · 04/03/2012 20:56

It's ok to wish it was all over. I did and I loved my grandad so very much. But his suffering was unbearable.

HorribleDay · 04/03/2012 21:04

So sorry to hear of both your losses :(

The hospice ARE brilliant - really very good. But they said he's not quite end stage, so he will 'probably' be discharged somewhere and readmitted when needed, if there's a bed. But he's def deteriorated today, quite quickly. Awful to hope he'll keep deteriorating so he can stay there :( Hoping consultant will ring us tomo - the nurse today seed to finally get how much we struggled in July and why it would be immensely difficult to have him at home. Hoping they will see fit to bend their usual practices (don't think its policy or rule) given what we went through.

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McHappyPants2012 · 04/03/2012 21:06

No advice sorry.

But hope something gets sorted for you and your husband

HorribleDay · 04/03/2012 22:15

Thank you x

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HorribleDay · 06/03/2012 22:28

Awful day. FiL deteriorating - losing sight, memory around 3 minutes, can't walk and struggling to get from bed or chair into wheel chair to be wheeled to toilet. Says he feels weak and exhausted, looks exhausted and sleeping more. Confused at times.

FiL says he wants to go home as he was 'fine' there (despite having many many falls, and unable to care for himself). Suspect this is cognitive impairment and not relegating how bad he was at home.

Hospice response to this?

Home visit with FiL on Friday to assess his mobility with a view to discharge possibly next week.

No one is listening to is. Struggling to cope right now - why are his last days turning into a battle to get adequate care??

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Jajas · 06/03/2012 23:43

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HorribleDay · 07/03/2012 09:26

It just shouldn't be such a battle to get care for the last days of someones life. It's awful having to battle them to keep him there. They've mentioned moving him to a nursing home - where neither we not FiL know the staff or area, at all, and it'll be 'whichever one has a bed'. FiL doesn't want to go, we don't want him to go, and the stress is wrecking our last days together. We've got a meeting with consultant tomorrow but suspect I'll just cry, which won't help anyone. My head is banging :(

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HorribleDay · 07/03/2012 09:27

And on the one hand they're saying days left, and on the other trying to send him home which is v v confusing :(

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Jajas · 10/03/2012 18:43

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HorribleDay · 10/03/2012 19:58

Hi
Well meeting went well I think in that FiL has deteriorated significantly so they decided he didn't have the legal capacity to make a decision to go home (thank god) due to increasing confusion and no appreciation of risk. Now needs 3 people to mobilise to bathroom (being wheeled out, takes 3 to get from chair to wheelchair and wheelchair to toilet). Has also had some incontinence which is distressing but due to one of the tumours pressing on spinal cord.

Concerningly he fell again yesterday and they think he's broken rib/ribs but decided not to send for X-ray. Enphasised out point about his risk at home :(

Thinking it's maybe a few days now, tho he may rally a bit. Worse every time we go in. Seems to have forgotten he's dying which is both good and bad.

On plus side my mum's op went well and she's home and recovering so one less worry!

Thanks or checking in, the care is much appreciated xxx

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LindyHemming · 10/03/2012 20:11

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Birdsgottafly · 10/03/2012 20:21

In terms of your nan, you need the Elderly Mental Health team (EMI) to do an assessment of neds. Anyone can request this, regardless of circumstance, via SS or GP.

The doctors should be sign posting you or at least requesting a SW visit for an initial assessment, but you have to ask and say that you need help.

Birdsgottafly · 10/03/2012 20:24

Euphemia- under the Mental Health Actyour mum is next of kin, if they are married, you also are next in line, or in some circumstances, as important.

If there is a lot to sort out, you can have your dad put something on paper, but it generally isn't needed, unless your dad has other family who may interfer.

If your mumand dad are not married then you are next of kin, or other siblings of yours.