BS: Situation w/ living arrangements

Subject: BS: Situation w/ Claire M's living arr. - advice-
From: Claire M
Date: 08 Aug 13 - 03:13 PM

Hiya,

This might be a bit long.

I've always had an anxiety problem & a temper like a volcano due to disability. I've been toying w/ the idea of a catheter for a while cos I can't stand up & things have always been a bit "iffy" on/off throughout my life), but according to GP & staff not "iffy" enough to do anything about.

If/when I need hoisting I find it difficult to move/breathe/speak, spasm all over the place, etc. & generally feel as if I'm being cut in ½ w/ pain (my parents have seen this) I wasn't at that stage yet but I knew I would be soon. When I occupy myself it goes.

I'm far too young to have a catheter put in– I'm 30 -- & there's no medical reason, the stress I'm under when hoisting is needed doesn't count -- , & the best thing to do would be to monitor my fluid intake instead, up my medication, go to counselling, etc. which I've done before only for none of it to work. I'm always thirsty anyway (I don't know why) so I drink a lot; I was drinking about 3l per day.

So I was chilling out w/ Pentangle on (part of why my tastes reverted is cos this sort of music calms me down) I rang to get hoisted & the young woman who came in said she couldn't do anything & I was to "deal w/ it" & a lot worse. Nobody needs hoisting as much as me apparently, even though my friend's got the same problem.

I can understand in a way cos this woman's not disabled, & I do know I can't be hoisted every 5 secs, but nearly fell out of my wheelchair cos I was that cross.

I lashed out, telling her I was glad she was leaving (I never liked her cos she's a bully & she's got the wrong attitude to work here anyway, there's always one, more if you're unlucky) & now she wants to press charges & I've got an eviction staring me in the face. Her mum's the boss & backed her up rather than me, twisting what I said.

She's no longer leaving, but I think my quality of life would be a lot better catheterised than not. It'd be the end of most of my problems. I'd leave was the problem not going to be exactly the same everywhere else I've stayed. I can take/leave the other residents & were I to leave, I doubt I'd miss most of them cos they never talk any sense.

I hated one home I was in cos I was in pads 24/7 & the staff there were even worse than aforementioned woman – downright nasty – the only good thing was it was close to my parents' house (which is one of the reasons I chose this place) but at least I wasn't in this state. Were I to leave I'd end up there.

Why would I need any of these options?? I didn't realise a physical problem needed counselling. Why can't a catheter just be put in, job done? I thought things were going too well where I live now.

Requiem aeternum, dona ei, Domine.......

Any advice ??

Subject: RE: BS: Situation w/ living arrangements
From: Ebbie
Date: 08 Aug 13 - 03:47 PM

I am so sorry for your dilemma, Claire. I do understand. When my brother had to be routinely catheterized because of his bladder cancer, they worried about introducing infection into the tract and the bladder itself. Infection, of course, can make one deathly ill.

I wish there were a way to ensure that everyone working in the care capacity was empathic, conscientious and capable. When all is said and done, it comes down to the bosses and the care that they require their staff to give.

It would be instructive if ALL personnel were required to spend at least a week in a wheelchair with all its limitations.

Let us know how this develops.

Subject: RE: BS: Situation w/ living arrangements
From: GUEST,Grishka
Date: 08 Aug 13 - 04:06 PM

Claire, we all sympathize with your severe problems. The only, rather trivial, medical advice I can offer is that reducing one's (non-alcoholic) drinking is quite a bad idea.

You wrote "I can understand in a way cos this woman's not disabled". Perhaps your understanding would better be based on the fact that she has a tough job indeed, and may not always have her best day for kindness and human interaction. Neither have you, nor I, nor anybody. If you try to be kind (not submissive) whenever you can manage, you may hope for the same from her.

Pass my best wishes to her; also to yourself, of course.

Subject: RE: BS: Situation w/ living arrangements
From: Bill D
Date: 08 Aug 13 - 05:36 PM

"Why can't a catheter just be put in, job done?"

Having no idea what problems there are,I looked it up. It seems to be quite a lot more than just "putting it in".

details

Subject: RE: BS: Situation w/ living arrangements
From: McGrath of Harlow
Date: 08 Aug 13 - 08:18 PM

Indwelling catheters over a long period do involve health risks. I had to have one for about ten months following a heart operation, and waiting for operations for prostate reduction and kidney stones, and halfway through that period I developed a serious infection that very nealy killed me.

So I can understand the reluctance to put you on one, especially as a permanent thing, so long as there may be alternatives. You need proper advice on this, and on alternatives, and it sounds as if that isn't been made available. One thing I noted, you say you need to drink a lot - has the possibility that you may have some formy of diabetes been explored?

It sounds to me that you really could use some kind of outside person to help you as an advocate. In our struggles with the authorities over the years in connection with our daughter we've found it very helpful to have that kind of back-up, even though we are highly articulate, and pretty forceful.

"I can understand in a way cos this woman's not disabled". I can't. Care work is difficult and demanding, but having a real appreciation of the circumstances of the person you are working for is a central part of it. And that includes understanding if your volcanic temper erupts at time - though you need to understand how that must be difficult, and it sounds as if you do.

One thing - be thankful you've got the music!

Subject: RE: BS: Situation w/ living arrangements
From: ChanteyLass
Date: 08 Aug 13 - 09:05 PM

Like McGrath, I would also suggest that you be tested for diabetes even if you have been before. Things can change. You should also discuss what other things could make you thirsty with your doctors. Could it be caused by some of the meds you take? Could other meds be used instead? You might also want to keep a written record of your intake of fluids and how often you need to use the toilet--but it sounds like you have done this already. And keep letting your doctor how painful it is when you are hoisted. Also your doctor should remind the staff in writing as part of your medical plan that when you need hoisting, you need hoisting quickly and carefully.

When I was confined to a wheelchair and bed for a few months, I knew the hospital staff's schedule and realized that I would receive no help during the change of shifts. I was careful to request a bedpan or transfer to a toilet well before or after the shifts changed. I remember one worker saying I was the first person and last person he helped with this during his shift! (He was one of the good guys.) However, I realize that your situation is different and hope that you can find a solution.

Subject: RE: BS: Situation w/ living arrangements
From: McGrath of Harlow
Date: 08 Aug 13 - 09:13 PM

GPs are not always the best source of medical expertise. Sometimes you badly need a consultant. And sometimes a specialist nurse or similar may be better. In my case a specialist nurse sorted out stuff doctors hadn't a clue about, and the same thing happened with a physiotherapist.

Subject: RE: BS: Situation w/ living arrangements
From: GUEST,Stim
Date: 08 Aug 13 - 11:00 PM

My disability issues gave me those "volcanic" episodes, and I know that, from a caregiver's point of view, those episodes are harder to deal with than anything else. For the sake of those that love you and care for you, learn how to manage them!

I am living proof that it can be done--mindfulness exercises, yoga, breathing techniques, and such things will help you, but you have to make up your mind to accept responsibility for taking care of the problem. The first step is the hardest, though, learning to say you're sorry.

You'll start to feel better about yourself, and you will get better treatment, also, as you learn to control the temper, you'll discover ways that the techniques you develop for that can help to extend your range of mobility, too.

Subject: RE: BS: Situation w/ living arrangements
From: mg
Date: 08 Aug 13 - 11:58 PM

there should be an invention that does not require insertion..rather than collects fluid externally. There was just something mentioned..a new version of the device that women can use camping etc..i'll try to find it...and do you have an occupational therapist that you can talk to?

Subject: RE: BS: Situation w/ living arrangements
From: GUEST,Grishka
Date: 09 Aug 13 - 01:50 AM

Diabetes can become very serious very quickly. If your medical problem has become worse recently, I would call a doctor right today, unless you are absolutely sure that you have no disease. If it is in fact diabetes, medication will relieve you of your urination problem and other symptoms.

When you have dealt with that side of the problem, consider what Stim wrote. Conflicts can be defused without giving up one's rights. (This lesson is yet to be learned by other Mudcat posters as well.)

Subject: RE: BS: Situation w/ living arrangements
From: Ebbie
Date: 09 Aug 13 - 02:38 AM

mg, I have seen several versions of the 'female' device. I believe they were developed for the military. The ones I have seen don't seem like they would do well when one is in a sitting position but it couldn't hurt to check it out.

Subject: RE: BS: Situation w/ living arrangements
From: Megan L
Date: 09 Aug 13 - 02:53 AM

cannot speak on the female catheter but the male catheter eventually caused the infection that hastened my husbands death. with the best will in the world if the patient has very low mobility the chances of getting a UTI is high.

Subject: RE: BS: Situation w/ living arrangements
From: Bizibod
Date: 09 Aug 13 - 04:35 AM

She Wee with an extension pipe might be the answer, it can be used whilst seated. May need to re-think underwear options to maximise efficiency, and I hear that, like everything else, practice makes perfect!
There are various discussions about it online.

http://www.youtube.com/watch?v=e1-Tj_qG89g

A friend has a purple glitter model.....!

Subject: RE: BS: Situation w/ living arrangements
From: McGrath of Harlow
Date: 09 Aug 13 - 08:21 AM

It should be possible to get a referral for an NHS 'continence advisor' who should know about all the options.

Subject: RE: BS: Situation w/ living arrangements
From: Claire M
Date: 09 Aug 13 - 08:46 AM

Hiya,

Sorry; I used hoisting to mean needing what it's for. The Other ½ has a temper on him too but he stays where he is. The only reason I explode is cos of said problem. When I drink a bit less it goes, too, wearing those skirts helps – one of the medications does make me dry, so I drink more, which kind of defeats the object of taking it.

When I put music on, it goes, both the feeling & the pain, only to come back when I put it off; which suggests to me a lot of it is the fear of what might happen.

My parents used to do my care, but they managed to lift me & I could stand for about 2 secs – I should've had one done when I they/I could no longer do that.

Subject: RE: BS: Situation w/ living arrangements
From: Ebbie
Date: 09 Aug 13 - 11:56 AM

Claire, have you looked at the link that Bizibod posted at 4:35 AM? It sounds helpful. Wish I'd had one back in my backpacking days.

Subject: RE: BS: Situation w/ living arrangements
From: wysiwyg
Date: 09 Aug 13 - 02:48 PM

I ordered SheWee Extreme (has extension pipe and case) and Lady Elegance P EZ so I can see which one works better for big girls. PM for details in a couple of weeks. Handi-Scooter trail-riding HEAVEN, I hope!

~S~

Subject: RE: BS: Situation w/ living arrangements
From: Claire M
Date: 09 Aug 13 - 04:05 PM

Hiya,

To Ebbie: I'm unable to lift myself up, & it doesn't work in my favour that I look, act & sound like I can do more than I actually can, & when I get riled up I sound spoilt.

Tried w/ something similar to SheWee, which didn't work. Moving would upset my parents cos it took years to find this place & the others are truly shocking; for for my parents to wish they'd cancelled their break to take me home tells you a lot. I've been told by various people that I don't know how lucky I am. & they've cared for me all their lives

The thing I've found since this started is that when/if staff make a big deal out of said problem, I worry a lot more, which makes things 10x worse & causes the ensuing problem. Most of the older/foreign staff are a lot nicer, a lot more polite, w/ a lot more sense; some are/have been like playground bullies. I nearly missed a concert once cos the woman in charge of the other staff that day said I'd be all right w/o getting hoisted beforehand!

The manager said she wouldn't have lashed out at staff had she been me, & of course she supports her daughter 100%-♥-edly. If she (her daughter, I mean) hadn't have been so nasty & hoisted me when needed there would've been no problem. There were 2 other staff listening outside, who I get on w/, were nearly in tears.

I don't expect staff to be at my beck & call, even when/if I do joke about it w/ some staff who I'd consider friends, but I expect to be sorted out as & when needed. The thing quite a few care home residents struggle w/ is that they expect staff to look after them like their family do.

Thanks, McGrath, at least I've got that.

Subject: RE: BS: Situation w/ living arrangements
From: McGrath of Harlow
Date: 09 Aug 13 - 04:27 PM

"The manager said she wouldn't have lashed out at staff had she been me,"

That's an incredible thing to say. Some people...

Subject: RE: BS: Situation w/ living arrangements
From: ChanteyLass
Date: 09 Aug 13 - 07:26 PM

It sounds like you could use an support group, possibly online, of people with your condition. Surely someone with this problem has found a way to solve it. If not, you could band together to put pressure on those in power to ensure you get the help you need when you need it.

Subject: RE: BS: Situation w/ living arrangements
From: GUEST,Grishka
Date: 10 Aug 13 - 05:30 AM

it doesn't work in my favour that I look, act & sound like I can do more than I actually can, & when I get riled up I sound spoilt.

Very interesting observation, and not uncommon. Actually most of us (particularly men) try to look, act & sound strong and autonomous, which backfires when we have to "admit" we are not. In fact it is not a shame at all to be in need of help, as we all know in theory. On the contrary, human society is basically a system of mutual help, and we are proud of it. You can do your share as well. (If it could be measured in quantity, it would be called "trading", quite a different thing.)

Manifest conflicts happen. To solve them in a satisfactory way, it does not suffice to be right or powerful or even both. Good diplomacy is required. As you can see in world politics, this does not always work, but surprisingly often. One of its secret weapons is to separate the actual conflict from personal dislikes and misunderstandings, and attack each separately. This art cannot be learned in a Mudcat online seminar, so you may want to appoint a diplomat, e.g. your parents or your friends among the staff. Diplomacy includes being ready to compromise, without loss of pride. All sides will win, even the one apparently in power.

(That said, please make sure that the medical side of the problem is well understood by your doctor, yourself, and the staff.)

Subject: RE: BS: Situation w/ living arrangements
From: Claire M
Date: 10 Aug 13 - 02:12 PM

Hiya,

Well, I probably am a bit spoilt. I don't mind cutting down on fluids pre-gig, or if I'm going somewhere else where I know I'll have to go w/o hoisting, cos I'll do anything rather than miss out on concerts, re-enactments, etc. but doing so otherwise w/o the need to is daft. I'm not convinced it's not so staff have to do less work!

A friend of mine drinks very little while I drink like a fish; I never feel like I've drunk enough & hate cutting down – if there's one thing I hate it's being dry --while she never wants anything to drink & hates being encouraged to have any more, but we're both fine. The problem w/ these type of places, & what I hate about them the most, is that they tend to have an idea that one size fits all; everyone must do the same thing. It's my/our "flats", & for a company who's all about choice (better not put name) they've a funny idea of it.

I think my eviction is/was a threat, which is pretty pathetic. I'm booking a scan soon to check I'm all right, but if that turns out OK that'll just be another reason to say it's all in my head & not to put me on one.

I've dreamt of fav bands before; soon after moving I got lectured via dream-sequence by a certain singer I hold in stupidly high regard, (if you've read my other posts you'll have an idea, you will esp., McGrath). She gave me a big smile & asked how I was getting on. When I said all was not well, she told me sternly that nobody is in a care home cos they want to be, I'm better off than I was in some ways, & I should make the best of a bad situation; I still have my music & folklore, & to call her if & when needed. One woman who works here, who I/we all really like, is convinced she was/is my guardian angel, in a form I'd recognise.......

Subject: RE: BS: Situation w/ living arrangements
From: McGrath of Harlow
Date: 10 Aug 13 - 08:36 PM

Make the best of things is good advice - but that doesn't just means grin and bear it. It also means seeing if there might be ways to make it better. It sounds as if you need some expert advice from someone with professional knowhow about it. And it also sounds as if the care workers and manager could do with some as well, about that and other stuff.

Subject: RE: BS: Situation w/ living arrangements
From: wysiwyg
Date: 20 Aug 13 - 03:23 PM

I ordered SheWee Extreme (has extension pipe and case) and Lady Elegance P EZ so I can see which one works better for big girls.

I figured out how to review these sans privacy:

I wish we could have the SheWee SHAPE in the softer plastic of the P EZ. Maybe smaller girls can P EZ, but even using SheWee's suggestion to practice in the shower, it was a no-go.

And BTW if one has been doing one's best NOT to wee in inappropriate places/times, it takes a LOT of shower practice to let go!!! :~)


Enjoy the visuals,

~S~

Subject: RE: BS: Situation w/ living arrangements
From: wysiwyg
Date: 20 Aug 13 - 03:25 PM

And PS, the "deluxe" extension pipe is tubing one can get anywhere and cut to fit, and will fit either brand.

~S~

Subject: RE: BS: Situation w/ living arrangements
From: Claire M
Date: 21 Aug 13 - 09:24 AM

Hiya,

Update. Keeping record. New CPAP which goes over mouth so not so dry. In other places they gave me drinks that could've doubled up as vases but were far too reluctant to deal w/ various problems afterwards for my liking.

There are people here who are a lot worse (emotionally) than me but they don't get threatened w/ eviction – or haven't done since I've been here. It does make me wonder why I was, it was a very silly thing to say considering my options would be very limited.
My dad volunteers in the garden now, I'm sure he wouldn't if he didn't think the place was right for me.

Subject: RE: BS: Situation w/ living arrangements
From: GUEST,Grishka
Date: 21 Aug 13 - 03:11 PM

I see: CPAP was/is the medical problem. Quick googling shows that a humidifier is considered "more and more" obligatory, but does not solve the problem completely. It stands to reason that the lost water must be replaced in the morning, but it seems that your thirst is/was beyond that. In those "other places", the staff seems to have had incomplete knowledge of your medical situation.

Good to read that it seems to have improved.

As for "limited options": although considerations of power and options are facts of life, it is wise to steer clear of them as long as possible - particularly between persons who share a building. This applies to everybody including the manager (whom you quote saying "she wouldn't have lashed out at staff had she been me", sounding like a threat, hopefully unintentionally).

There is nothing wrong with having wishes, and I would never use the notion "spoiled" in that context. Do not "cave in", just apply diplomacy with the help of your parents and friends. Best of luck!