Bah!

[amberdreams]

What a fun morning. Not.

Michelle (my couisn) messaged late last night, fretting because her GP had sent her a letter saying she'd agreed to no CPR in the event of her not breathing or heart stopping. She told me she hadn't agreed, she'd asked for CPR to happen and was refused. I spoke to her this morning on the phone and she'd been awake most of the night panicking about it, fearful of sleeping in case she had a problem and the paramedics refused to try and revive her. The whole situation is so fucked up. She's currently staying at her daughter's house, sleeping in a giant medical recliner chair while her proper clinical bed is at her son's one bedroom flat. He's stressed out and was arguing with her all the time, while her daughter is mentally fragile and has five kids to look after. Of course, having five kids around also means Michelle is not getting much rest.

I spent all morning ringing the hospital, tracking down her GP, talking to the hospice. So now the GP had clarified that the letter was only there to be used in dire circumstances because he'd thought that's what she wanted. If she doesn't want to implement a DNR, then all she has to do is tear up the letter. So that's that bit sorted. the doctor confirmed they have referred Michelle to the hospice, the hospice have now confirmed Michelle is on their waiting list, though obviously they couldn't tell me what kind of clinical priority she might be given over anyone else on the waiting list.

So two points to me.

The thing is, Michelle had a room in the hospice a couple of months ago, but she discharged herself because she was convinced they were giving her very high doses of medication to bump her off. Only a couple of days ago I suggested she might want to go back to the hospice and she was dead set against it. But this morning I think she's realising this is untenable. She was certainly open to the idea - the problem being, we have no way of knowing how likely it is they will have an opening for her, and when.

I honestly don't know what information is being given to her and if she's just confused and misunderstanding everything, or the various medical practitioners dealing with her are failing her badly. She is on a cocktail of drugs that must be messing with her perceptions and ability to follow a thread, but surely they have experience of helping people in these situations. She still hasn't made her will, or done anything about power of attorney. Kirk is frustrated because he'd made an appointment with a solicitor last week and she'd then cancelled it. I think she's terrified. Making her will feels like she's checking out and she's desperate to hang on.

I understand that, but from everything she's told me, there is no hope. They can't attack the source of the cancer because her lungs are too weak for an operation and she has these recurring open wounds on her legs which carry risks of cross infection. No operation, no stopping the cancer spreading - and given that it had already spread so badly from the breast tissue to spine, ribs (presumably lungs), I can't see any way she's going to survive. And it isn't that I think she should give up - if she wants to live whatever the circumstances, she should keep on fighting. But this whole situation sucks big hairy balls.

Anyhow, minor victories on the CPR front and she is very happy to throw that letter (and hopefully some of that worry) away. Fingers crossed when a room becomes available at the hospice that Michelle will be a) top of their list and b) still in the right frame of mind to take it up.

Oh and to top off an excellent morning, Super-fucking-wiki has blocked me on Twitter, presumably because someone (who by the way I don't know and doesn't even follow me) butted into a conversation about showrunner direction on SPN with a slightly negative comment about Kripke. Superwiki responded first with a picture of birds and words along the lines of fuck you and your opinions to both me and the stranger, then posted a comment asking for examples of friction between studio and showrunners, then deleted that comment and blocked me. Well thanks a bunch Mrs Over-reactor. *sigh* Twitter, man. What a shit show.

Comments

[jj1564.livejournal.com]

I'm so sorry Michelle is having such a hard time, it's bad enough having cancer without having all this stress and worry. You hear about people with cancer being treated so well by the hospital and/or the Macmillan or Marie Curie nurses, yet neither Michelle nor my sister;s ex are having that experience. Has she or her family contacted Macmillan or Marie Curie? They weren't very helpful for my sister's ex, but may be in her area. Also, if she's not actually staying in the hospice, can't she attend as a day patient and/or have home visits? It sounds a nightmare with her staying at either her son's or daughter's. But good on you for sorting out the CPR situation. And yah boo sucks to Superwiki!

[amberdreams.livejournal.com]

She has Macmillan nurses coming in every day - though she seems to think they are now all on holiday for Christmas, which seems very odd to me. Trouble is the concoction of drugs she's on, I think she mishears or gets confused. Maybe it's just that her regular person is on holiday and someone else will come instead. I dunno!

Sorry to hear Brenda's ex is also having problems. Like you say, it's bad enough having the cancer to deal with without admin issues to sort out!

[jj1564.livejournal.com]

Well, at least she has the Macmillan nurses, and I hope they won't desert her over Christmas. Bren's ex gets very confused too, I think the drugs do tend to cause that.

Hugs to you and to her xx

[amberdreams.livejournal.com]

yes, Millie says they can cause paranoia, which isn't great when you're asking them to make decisions that are in their best interest.

[borgmama1of5.livejournal.com]

I am so sorry about your friend. You are doing good by helping sort out her options, but it's got to be so hard on you...

[amberdreams.livejournal.com]

It's my cousin (my only girl cousin) - the hard part is being stuck so far away. I know she had to move back to Manchester to be with her family, but neither of her kids seem to be up to chasing and hassling for the medical and legal stuff she needs as much as the general care side of things.

[fufaraw]

That's really hard, and I'm sorry for your friend, and also sorry it falls to you to deal with. Internet censor shenanigans seem to be unfairly punitive all over this morning. People need not to be so reactive about some stuff.

Wishing you some breathing room.

[amberdreams.livejournal.com]

Thank you on both points! x

[anactoria.livejournal.com]

Oh, that sounds like such a hard time for your cousin and you, I'm sorry to hear it. I do hope she's able to get a room (and, as you said, willing to take it up.)

[amberdreams.livejournal.com]

I hope so too! ♥

[amypond45.livejournal.com]

Argh! Sounds super not-fun and I'm so sorry for you and your cousin!

[amberdreams.livejournal.com]

Thank you - I'm hoping the hospice will come through.

[nomercles.livejournal.com]

Jeez. Hug.

[amberdreams.livejournal.com]

Thankee!

[sillie]

*hugs* I'm so sorry to hear about your cousin. Such a sucky situation. :/

Also, yes to Twitter being a shit show. If it wasn't for certain people only posting there, I would be gone already.

[amberdreams.livejournal.com]

Ugh Twitter. It's bad enough seeing some of the ridiculous arguments and fights from the sidelines without having someone decide I'm somehow part of one for no reason at all. What a pathetic place it is.

[milly-gal.livejournal.com]

*huge hugs* I'm so sorry, it's stressful enough to be suffering with cancer, but to have to deal with things such as DNR's and Doctors and many children in one place whilst trying to get sleep is a nightmare. The mixture of medications Michelle's taking can have a side effect of paranoia hun, which is possibly why she felt the way she did about the Hospice in the first place. Now the Hospice has given her placement away they'll have to wait for a room to become available and as she declined it/discharged herself in the first place, she'll be under the priority of someone who's coming straight from hospital treatment and/or a home where the family and person in question can't cope. None of these things are helpful to you or her, but I thought it might be useful to know specifically what's going on. These are all things I've dealt with at the home, and the DNR, it can't be instigated if the person in question is deemed to have capacity and hasn't had a DOLS taken out on them, so ripping up the letter is a good start but make sure Michelle rings her doctor and speaks to him and says specifically that she wants CPR *hugs*

As for Super-Wiki, not that you should HAVE to because you didn't do anything, have you tried messaging them on another platform, FB or something, and explaining it wasn't actually you? Fecking internet grouches.

[amberdreams.livejournal.com]

Yes, I rather assumed her priority would be down the list after the self discharge - dammit. You'd think they would have enough experience with the side effects of these drugs to be able to manage someone's illogical reactions though, wouldn't you. I do worry about the state of the NHS! Our 90 year old neighbour was rushed into hospital the other day with pneumonia and then spent 12 hours in a corridor waiting for treatment. She didn't discharge herself but was sent home anyway, with a bunch of antibiotics. That doesn't seem right to me, but I'm certain they had some target that had to be met, and that once you are over 65 you are considered to be expendable. Collateral damage.

As for Superwiki, nah. I don't really care what she thought. She's apparently prone to blocking people - she's blocked ash48 for gawd's sake, and you couldn't get a more reasonable person than ash.

[milly-gal.livejournal.com]

What the actual fuck?! This pisses me off to no end because of the industry in which I work. Yes, you see it a lot, people over a specific age are deemed 'on the road to out' and so they get less attention paid but honestly some of the people I work with are more spry and with it than fifty year olds I've met. Age shouldn't come into caring or health work and it really bloody irritates me!

The Hospice will hopefully find her a placement soon, but hun, if she refuses it again, they'll stop trying. If she needs the placement she has to take it.

WHAT?! Ash, really?! The woman is the epitome of a well thought out equal sided discussion O.o!

[amberdreams.livejournal.com]

The hospice issue is another reason I wish I was up there to help out - I think I'd be able to persuade her to see sense, and talk to the professionals on her behalf to support her. Kirk is a good bloke, but he's stressed out, while Siobhan has the kids and a background of nervous breakdown/drug abuse to battle.

Yeah, I couldn't believe they'd sent Ann home so quickly! Of course another consideration is actually a health one, my friend did a lot of work with the hospital and it was common knowledge that they like to get patients home as soon as they can because risk of cross infection, MRSA and the like is higher in the hospital than at home!

[milly-gal.livejournal.com]

This is true, but still, pneumonia isn't something you leave a 90 year old suffering alone with just antibiotics.

Is there any way you could intercede from where you are?

[amberdreams.livejournal.com]

I tried with all the ringing round but I think it's going to need a chat with her GP - I reckon he'd be the route to getting the hospice to bump her up the list. Of course now they won't be available till after Christmas - so I'll see if there's anything more I can do then.

[milly-gal.livejournal.com]

If you need any bits and pieces of info from the care side, give me a shout? xx

[amberdreams.livejournal.com]

Thank you, I will!

[milly-gal.livejournal.com]

I am so so sorry for your loss bb, I never managed to get online other than fb to say it, but I am thinking of you *hugs*

[madebyme-x.livejournal.com]

I'm sorry to year about Michelle - it must be so hard for you all. I hope she's able to get, and accepts, the hospice care she needs. You're all in my thoughts.

And gosh, this is why I don't do twitter! How petty can people be? But know what we all love you over here on LJ!

[amberdreams.livejournal.com]

Aw thank you. Got to say, LJ feels like home because of you chaps. Warm and cosy and yet also intellectually stimulating. Unlike Twitter.

[zara-zee.livejournal.com]

So sorry to hear about your cousin's troubles. All of that end of life legal/practical stuff is just so confronting and I think it would be very hard to cope if you didn't have a really solid support system. Hugs to you all.

Twitter. Meh. I never could get the hang of Twitter. At heart, I'm a novelist; I can't say anything in 140 characters!

[amberdreams.livejournal.com]

Me and Paul just updated our wills and have set up separate power of attorney for finance and health issues. Better to do it now than wait until we actually need it for all those reasons.

Twitter have changed the word limit but it's more to do with the fact that so many ridiculously sensitive yet abusive, bullying nutcases hang out there that puts me off. I dunno why so many old LJ-ers want to hang out there instead of here.

[zara-zee.livejournal.com]

Yes, Tom (my hubby) and I did the same in the wake of my mum's sudden terminal illness.

Oh, I didn't know they'd increased the Twitter word limit. Still. It just doesn't seem like a forum for thoughtful discussion, more like...cheap point scoring. And, as you say, lots of sensitive yet bullying nutters. I've never really understood the attraction, but there you go! :)

[tsuki-no-bara.livejournal.com]

is there any way to get one of michelle's kids designated as a health care proxy (i think that's what it would be) or something, as someone who can make medical decisions on her behalf, if she's being paranoid and weird because her medication is fucking with her? like, if a room does open up at the hospice for her, but she's too confused from the medication to agree to it, can either of her kids say (on her behalf) yes, she wants the room, let's move her in? not that it would make everything easier, or get a room to open up sooner, but at least it would take away the stress of whether or not michelle would take the room. it sounds like a really difficult situation for everyone. *hugs*

on the other hand, go you for sorting out the cpr!

whoever runs the superwiki twitter is, uh, a little quick to block. mediocre, superwiki.

[amberdreams.livejournal.com]

Last point first - yep, I hadn't realised she was such an idiot. Plus I think if you run an account on social media associated with a resource page like Superwiki, it's totally in appropriate to then use that account for your own personal shit. The two should be kept very separate. It would be like me jumping onto the SPNJ2RB account and posting stuff about politics, or my shipping preferences.

The medical authority thing is something I'd love to get sorted out but it's difficult to organise via official/legal routes - which would be the most cast iron way of doing it. She hasn't even made a will yet - I think she's now reluctant to do these things because it feels like she's taking a step closer to death. Which I understand but this is going to cause so many problems for her two kids when she goes.

I think doctors are much more understanding when the patient is actually incapacitated, and would then allow Kirk to direct them in her best interest, but while she's basically compos mentis, they have to follow her wishes. Though I think they should be better at giving her direction knowing the side effects of the cocktail of drugs she's on.