Peanut gallery for Foxhole thread

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Cath B
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Post by Cath B » Thu Feb 20, 2014 9:14 am

In the late evening David became iller than I'd seen him, hot, sweaty and a bit confused. He said "I need a bath" and started pulling off his clothes. I fetched clean and lighter ones, helped him change, tentatively and unsuccessfully tried sponging him down a little: he didn't want this. And so to bed, a drink taken, oramorphine declined, fever subsided, sleeping peacefully.

I decided that a separate bedroom is no longer an option and slept on the floor nearby with my double duvet folded to provide a mattress as well as a cover. I don't know how long I'll be doing this, so it was a relief to find it comfortable and to sleep well, stirring but quickly returning to sleep when David stirred in his own sleep.

Cath B
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Post by Cath B » Thu Feb 20, 2014 10:14 am

I woke properly around 6.15. David was sleeping soundly so I remembered the advice to put on one's own oxygen mask before helping others, had a bath, a leisurely breakfast listening to ballads with earphones so as not to disturb David and fiddling about on the internet. David woke, drank juice, milk, water (he now wants water sometimes) took all his pills, got more layers on (this effort made him weak and dizzy) and into his reclining chair. Ate a spoonful of custard and then back to sleep. I phoned the health centre and the Doc phoned back very promptly, was kind, said I'm doing all I can.

Though so tired David is still smart and it was he not I who said a short while ago "We need hand signals. Thumbs up 'yes', thumbs down 'no'." Transferable skills from his experience working with disabled clients I'm thinking.

I said "What's the hand signal for shut the fuck up?" but he didn't respond. Perhaps that was the hand signal.

I suppose I should phone social services now, but as stated earlier I find talking to bureaucrats, however helpful, a strain so am putting it off for a little while (best not too long I suppose).
Last edited by Cath B on Thu Feb 20, 2014 10:49 am, edited 1 time in total.
Reason: typo

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Febble
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Post by Febble » Thu Feb 20, 2014 11:03 am

Good for David!

Social Services can be terribly socially inept.

And good for you, with the vacuuming and your Dad.

You guys are making me love the human race a little bit more.

:hug:

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Pendaric
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Post by Pendaric » Thu Feb 20, 2014 11:24 am

I haven't got anything useful to say, but I'm following this thread and thinking about you guys.
fear is the mind killer

mood2
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Post by mood2 » Thu Feb 20, 2014 11:36 am

[quote=""Cath B""]I woke properly around 6.15. David was sleeping soundly so I remembered the advice to put on one's own oxygen mask before helping others, had a bath, a leisurely breakfast listening to ballads with earphones so as not to disturb David and fiddling about on the internet. David woke, drank juice, milk, water (he now wants water sometimes) took all his pills, got more layers on (this effort made him weak and dizzy) and into his reclining chair. Ate a spoonful of custard and then back to sleep. I phoned the health centre and the Doc phoned back very promptly, was kind, said I'm doing all I can.

Though so tired David is still smart and it was he not I who said a short while ago "We need hand signals. Thumbs up 'yes', thumbs down 'no'." Transferable skills from his experience working with disabled clients I'm thinking.

I said "What's the hand signal for shut the fuck up?" but he didn't respond. Perhaps that was the hand signal.

I suppose I should phone social services now, but as stated earlier I find talking to bureaucrats, however helpful, a strain so am putting it off for a little while (best not too long I suppose).[/quote]

It can be off-putting, and feel like just another thing to worry about, but remember you and David are in charge, and it's up to you two to decide what if any help would be beneficial. And that's how they're supposed to approach it too.

I'd expect you'd be offered a Social Work Assistant after an initial Social Worker assessment, they can actually be really good in guiding you through any bureaucratic crap, and maybe suggest helpful things you hadn't thought of. A sort of one-stop shop who can be your advisor and intermediary with the bureaucracies. They can also be more like supportive 'real people' than 'professionals', if you know what I mean. :)

Also pre-prepared lists are a great way of keeping focussed on your own priorities and concerns ;)

Cath B
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Post by Cath B » Thu Feb 20, 2014 12:03 pm

Thank you mood2, inspired by your post I PHONED THEM UP. It was easy, I got a switchboard and they took my mobile number to use instead of the landline. The ball is now fully in their court so I don't need to be any more pro-active right now.

And thanks to all the other posters here too. :grouphug:

mood2
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Post by mood2 » Thu Feb 20, 2014 12:07 pm

*high five*

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Oolon Colluphid
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Post by Oolon Colluphid » Thu Feb 20, 2014 12:45 pm

I assume the Macmillan folks are fully up to speed with the situation? I found that they are very good as an interface with other organisations. I only had to tell our nurse something and next day (or next hour) the relevant bod would turn up.
Argumentum ab faecem excogitarem is a fallacy, no matter how inventive you are.

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Febble
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Post by Febble » Fri Feb 21, 2014 11:59 am

Good point. The MacMillan nurse who looked after my brother-in-law was absolutely awesome, and not only looked after my brother-in-law but my sister too. And she told bureaucrats to get stuffed/their arses in gear as and when necessary.

nygreenguy
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Post by nygreenguy » Fri Feb 21, 2014 12:13 pm

We were "lucky" when my mother was in hospice (end of life at home medical care) the nurses were my aunt (her sister) and cousin.

It must have been hard on my family to do that, but I am sure it makes the patient more comfortable. After all, it really SHOULD be all about the patient.

So IOW, always do what is best for David even if you have to be a pain in the ass.
"Mythology is someone else's religion, different enough from your own for its absurdity to be obvious."- Anon

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Oolon Colluphid
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Post by Oolon Colluphid » Fri Feb 21, 2014 12:22 pm

[quote=""Febble""]Good point. The MacMillan nurse who looked after my brother-in-law was absolutely awesome, and not only looked after my brother-in-law but my sister too. And she told bureaucrats to get stuffed/their arses in gear as and when necessary.[/quote]

Exactly. It's very reassuring to have someone in contact who not only is sympathetic and makes the right noises (there's plenty of those around), but who can actually get stuff done.

And crucially, they have ideas about what stuff you might like done, which you'd not even thought of. When Dad was still fairly mobile, out of the blue, she rustled up a couple of hundred quid for me (nursing Dad, getting divorced, 50% looking after young-teenage daughter -- when not working full time) to get a break; went away with daughter for a few days. They are absolute stars, worth their weight in gold. (White dwarf stars, obviously.)
Argumentum ab faecem excogitarem is a fallacy, no matter how inventive you are.

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Febble
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Post by Febble » Fri Feb 21, 2014 12:32 pm

[quote=""Cath B""]
I decided that a separate bedroom is no longer an option and slept on the floor nearby with my double duvet folded to provide a mattress as well as a cover. I don't know how long I'll be doing this, so it was a relief to find it comfortable and to sleep well, stirring but quickly returning to sleep when David stirred in his own sleep.[/quote]

Would an air-mattress help? We have a very easy-to-inflate one with an integral foot pump.

mood2
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Post by mood2 » Fri Feb 21, 2014 2:32 pm

In terms of getting stuff done, by getting into the Social Services system, which the initial Social Worker assessment should do, you get more direct access to the range of statutory services, which should speed up getting stuff done in the long term.

So I wouldn't dismiss going ahead with the social services assessment bit at least Cath. And hey, they might come up with some nifty ideas.




Boring bit -

And then the way it works is the role of the Social Work Assistant should be to essentially act as your rep, your one stop shop for advice/accessing the services and stuff which can help. Or a MacMillan bod if you prefer. I'm guessing they have more time and perhaps personal investment for each individual on their caseload, which might mean in practice things like making a call for you rather than just telling you the number you need to ring, filling in forms rather than telling you how to get the right forms. They can also act as independent advocates, and may have more specialised knowledge of cancer, all of which can make a big difference. If perhaps less detailed knowledge of the range of state help available and how that works (eligibility criteria, waiting times and suchlike), and the best way to navigate the system. So if the choice is available, one might suit your priorities more than the other.

Either way, once you're already 'in the Social Services system' if say you think a bathseat, or walker, or alarm pendant, or 'sitter' or whatever might be handy, it should save time and hassle in the long run. I'm sure the MacMillan peeps have close relationships with social services, but I'm not sure if there might be hold-ups if you're not already in the system should they contact Social Services on your behalf.

The main thing is having a knowledgeable and supportive intermediary, one person who you can call and sort out getting what you need, taking care of any associated bureaucratic crap for you. The bureaucratic ins and outs and which department does what shouldn't be your concern, it's not meant to be, and you two have got enough on your plates.




Important bit -

What all that daunting cacophony of blah blah boils down to is what Oolon said - 'It's very reassuring to have someone in contact who not only is sympathetic and makes the right noises (there's plenty of those around), but who can actually get stuff done. And crucially, they have ideas about what stuff you might like done, which you'd not even thought of'.

The way it should happen at your end once you're hooked into Social Services or MacMillan's system is -

Fred tells you what's available - You say what would help - Fred sorts it out.

New problem crops up later - You phone Fred - Fred sorts it out.
Last edited by mood2 on Fri Feb 21, 2014 2:57 pm, edited 1 time in total.

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Febble
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Post by Febble » Fri Feb 21, 2014 3:12 pm

MacMillan Nurses

Just in case you haven't got the contact!

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Febble
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Post by Febble » Fri Feb 21, 2014 3:17 pm

[quote=""Oolon Colluphid""]
Febble;525423 wrote:Good point. The MacMillan nurse who looked after my brother-in-law was absolutely awesome, and not only looked after my brother-in-law but my sister too. And she told bureaucrats to get stuffed/their arses in gear as and when necessary.
Exactly. It's very reassuring to have someone in contact who not only is sympathetic and makes the right noises (there's plenty of those around), but who can actually get stuff done.

And crucially, they have ideas about what stuff you might like done, which you'd not even thought of. When Dad was still fairly mobile, out of the blue, she rustled up a couple of hundred quid for me (nursing Dad, getting divorced, 50% looking after young-teenage daughter -- when not working full time) to get a break; went away with daughter for a few days. They are absolute stars, worth their weight in gold. (White dwarf stars, obviously.)[/QUOTE]

Yes. They really see the bigger picture, including the carers.

Cath B
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Post by Cath B » Fri Feb 21, 2014 7:46 pm

[quote=""Cath B""]the Doc phoned back very promptly, was kind, said I'm doing all I can.....[/quote]

That is that I, Cath, am doing all I can, not that the Doc is (not that she isn't either).

phands
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Post by phands » Fri Feb 21, 2014 7:53 pm

Cath,

You're quite frankly amazing.

David is lucky to have you with him, and I feel fortunate to know you.
ph'nglui mglw'nafh Cthulhu R'lyeh wgah'nagl fhtagn

Cath B
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Post by Cath B » Fri Feb 21, 2014 8:05 pm

Thanks everyone.

This is the first time David hasn't put the TV on at all, though we were quite busy with phone calls and visitors. He is very dozy although he comes to and responds if his phone rings.

Social Services phoned yesterday afternoon and offered an immediate package of help to wash etc. every morning with Dave's agreement.

Dave said not yet.

But we remain officially in the system and should be able to get fast tracked if needed.

I've also been in touch with Paul Sartori and McMillans. A couple of Paul Sartori folk came round with a bed hand-rail and an adjustable pillow support which is handy and a McMillan nurse (one we already know) is due round on Monday.

I also gave an update to the Doc who was helpful.

A friend called with milk and other food, another with the car's MOT certificate having taken it to the garage. David mostly had his eyes shut while we talked but interjected now and again, sometimes with something making good sense, sometimes not.

A couple of cousins, sisters, visiting the area for the weekend, called too. They were calling to see my Dad later which helped me as I'm now reluctant to leave David. One of the above-mentioned friends is calling round tomorrow so I can go out for a coffee with said cousins who I haven't seen (apart from today) for over two years.

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DMB
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Post by DMB » Fri Feb 21, 2014 8:28 pm

Looking after someone in David's situation is very. very tough. I nursed my father as he died from cancer, but I was "lucky" that he lived only a short time after the diagnosis. (He was ill for ages before they worked out that he had lung cancer.)

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Febble
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Post by Febble » Sat Feb 22, 2014 11:50 am

[quote=""phands""]Cath,

You're quite frankly amazing.

David is lucky to have you with him, and I feel fortunate to know you.[/quote]

^^this

nygreenguy
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Post by nygreenguy » Sat Feb 22, 2014 12:29 pm

[quote=""Febble""]
phands;525509 wrote:Cath,

You're quite frankly amazing.

David is lucky to have you with him, and I feel fortunate to know you.
^^this[/QUOTE]

Double this2
"Mythology is someone else's religion, different enough from your own for its absurdity to be obvious."- Anon

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DMB
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Post by DMB » Sat Feb 22, 2014 12:51 pm

This might be a good time to remind people that David has expressed a wish that people who care about him should consider making a donation to the Council of Ex-Muslims of Britain. The Council gives much-needed support to apostates from Islam, both in Britain and in the world at large. Apostates at best find themselves in a friendless world and at worst are in mortal danger from fanatics and governments.

If you do support them for David's sake see the donation page here:
For those wishing to contribute to the David B/David Bleines Tribute, please earmark your donation so it can be attributed to him and his wonderful support for CEMB. You can do so via email (exmuslimcouncil@gmail.com) or by adding a note when you send the cheque or make the Paypal donation. Thank you.

Lugubert
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Post by Lugubert » Sat Feb 22, 2014 2:02 pm

Posts 242, 245, 246
[quote=""nygreenguy""]
Febble;525630 wrote:
phands;525509 wrote:Cath,

You're quite frankly amazing.

David is lucky to have you with him, and I feel fortunate to know you.
^^this
Double this2[/QUOTE]

COPYCATS!

Post 221
[quote=""Lugubert""]You're just ... amazing.[/quote]

Cath B
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Post by Cath B » Sat Feb 22, 2014 6:03 pm

:o Wow, thanks for all the praise.

I like praise even if undeserved! :D

David's been a lot brighter today, perhaps this morning's visitor did him good.

But I've nontheless been in touch with the out-of-hours doctor because he hasn't had any urine output today although he has been drinking a reasonable amount by his current standards. Not complaining of pain though and he had a surprisingly large output in the night compared with how it's been yesterday. We both agreed there might be metabolic changes rather than a blockage. She suggested a change of position and phone back in four hours or so if still no output.

sohy
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Post by sohy » Sat Feb 22, 2014 7:06 pm

You not only deserve the praise, Cath. I'm adding another one, you are among the best sisters ever! Anyone in Dave's situation would be very fortunate to have such a thoughtful person to help him throughout this unhappy journey. :hug:

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