Tuesday, 25 November 2008

Hi. I'm Emma.

I had a new carer this evening, something I suspect will be happening a lot in the next few weeks as my regular carer of the last several years moved away at the weekend.  It went a lot better than I expected, I was very nervous, but it was ok.  I'm looking forward to Friday, however, when I should have someone who last did my care more than three years ago (by my count) but who I always got on well with.  Familiar faces are always good even if there will be a lot of the new carer things like showing where things are as well.  Those are always easier to cope with when I know the person however.

Two things strike me about having a new carer tonight.  One slightly serious, one just amusing.  Neither are specific to this new carer alone, I've had them happen before.  I was just reminded of them by her this evening.  This entry is not intended as a dig at this new carer.  If I ever see her again I think we will get on well.  My care agency do have a habit, however, of sending me someone and I don't see them again for about six months.  As I no longer have a regular it's less likely to happen, IMO.

1) A lot of the clients they go too they give or prompt medication.  I was under the impression that was because a lot of the clients in question can't/won't/forget to take their meds.  Obviously, I self medicate and my carers don't do that for me.  But tonight for not the first time I got asked "am I supposed to give or prompt any meds?"  

Now, fair enough this carer didn't know and it's better that she asked rather than just wondering.  If you ask me however (and you didn't but it's my blog...) that's actually kind of dangerous.  If the reason for the assistance with meds  is due to memory loss or difficulty in knowing when/how to medicate for example (to say nothing of noncompliance) and the carer is sent in not knowing if they need to do this well it's just a mess which could result in either lack of medication or overmedication (either situation could be potentially very serious).  It's a situation which Elizabeth has written about many times with her carers.

Obviously it's a training issue and it is one that doesn't apply to me.  But it's one that really gets my back up because I have some very good friends who need this support and maybe aren't able to advocate for themselves for well.

And that leads me to point 2) of the things I thought of after having a new carer this evening.

Once, a very long time ago, there was a carer sent to me by this agency who didn't know my name - she was sent last minute and just given an address.  Ever since then I've made it a point to tell new carers my name when they introduce themselves.  They should be given an "About Emma" sheet the coordinators wrote before they come (although its crap and very out of date in my opinion) which covers what they do and stuff like that including what you prefer to be called.  It doesn't seem to be getting dished out but to be honest, talking to them about writing my own is on my to do list (tentatively I've heard they won't let me write one to replace theirs but they will let me write an additional one but I need to check that with the powers that be).  I'm not supposed to have read their sheet but I have and it's... amusing. In an annoying sort of way.  Apparently "Emma is a delightful girl who enjoys a chat." I've been campaigning for years to have that replaced with "Emma is a stroppy bitch" but nothing doing.

Anyway just as this new carer was leaving today after being here an hour she went "What's your name?"  All they'd told her was I was Ms Crees.  I could swear I'd replied to her "hi I'm..." with "oh hi I'm Emma" but maybe not.

Still, it's not really surprising that she didn't know what she was meant to do for me with regards to meds (or rather not do) if they didn't even tell her that I'm Emma.

So, just in case there was anyone here who didn't know my name.  Hi. I'm Emma.


Diane J Standiford said...

Oh, I dread new carers. for all the reasons you said and more. I have no close friends or relatives who will check on me and one day it will be just me and them, their decisions...I try not to think about it They are low paid, often don't understand English very well and...sigh. Little by little, I cease to be the me I once was. Hi, Emma.

rickismom said...

WOW the above comment is so frightening. That is why I tell my older kids that they will always have to keep an eye out for Ricki. I guess it also shows how important friends are (if you don't have family).

Dear Emma,
I tried emailing you twice with an answer to your email, and since my emails often do not go through, and I received no sign that you received it, I am posting here.
Thanks for asking for clarification.
OK. I am , first of all, not saying that you are being sarcastic. I was just adding a point that I feel is often overlooked when talking about replies to idiotic people.

(Also, I agree very much that you should blacklist "helpers" who are routinely insulting of your abilities.)

It is always tempting to give a quick retort to people who are stupidly idiotic. (Luckily for me, I usually think of the perfect retort only after the person has walked away. The only one I use regularly is when people stare at Ricki I say "It costs 1/2 dollar to stare") However, as gratifying as it is to make that quick retort--which will usually be a sarcastic remark of some type--- I don't think it is helpful long term. WE feel good. But the other person, who as dumb as they are, and is an idiotic pest, may have MEANT well. And a sarcastic comment will make them defensive and angry. People who are defensive and angry will not LEARN from the encounter. We need to react--- because this dehumanization is not only insulting; it can be dangerous. But the best retort should be (as much as we are humanly possible...anger does get in the way...)a clear explanation of the behavior you expect, and why.

"You may disagree with me, but I am an adult and this is MY house."
"I hear what you are saying, but I would hear you better if you did not talk to me in the tone used for first-graders."
"Excuse me, we are talking about something that concerns ME. I am an adult, please speak to me, and not to my assistant."

I think that we will gain more ground this way. And we will also have to live with the fact that some people are Prejudiced, Stupid, Emotionally belligerent.
(Much more disabling than any "disability")

See my posts of January 21 and 25. [http://beneaththewings.blogspot.com/2008_01_01_archive.html ]

I have a question for you. You say that you would not give up your wheelchair if you could. I understand that you do not feel any less human in a wheelchair, and that you have a very fulfilling life. (To me, both of those points are self-evident.) But doesn't the temptation of more mobility entice you? It wouldn't change who you are (just as being in a chair doesn't), but it would give you more opportunities. (I mean if G-d offered to teach me to fly I would take Him up on it!) Just trying to understand....please don't get angry at the question....

I would yes change Ricki's Down syn. If I could-- it interferes too much with things she wants to do.** (But I try not to define her by it.) (And even though she would be different in some ways from what she is now, gee, my older teenagers changed too!) **But neither am I anxious that there is no cure. I would just take it IF one day it showed up.....

Thanks again, Rickismom

Erin said...

Hi. My name's Erin, and I love reading your blog! :)

I have CP too (Spastic Diplegia) and am 16. Your blog echoes many of my feelings, and your writing is amazing. I like to write too.

I haven't had much experience with carers yet, but I anticipate I will in the near future, once I finish high school and move out on my own into the big wide world. Thanks for blogging things like this. It gives me an idea of what the future holds. :)

elizabeth said...

A like this post a lot, but then, any post about carers are going to get me amused, or annoyed, or both! Haha. I find it interesting that you have a sheet of a description of you while my last carer didn't have anything except my name so she googled me - no, no misuse of medical info there! Anyway, ironically the HOSPITAL has the name I prefer and all the particulars and treats me FAR better than even carers who have come a few times. I think this is because the hospital realize that a happy and compliant AND in pain person is better than an disoriented and annoyed one and takes the time to get the information when they can right the first time, and so, when you are at your worse, they give you the dignity of the right use of your name, how you like to be talked to, etc. While carers often expect the client to have the energy to "micro-train" them, which when they are only there for an hour means the client (you and me) have to spend up to 1/3 or 1/2 the time getting them not to destroy X, or to find cultery here and answer inane questions like, "Did you read all these books?" (Answer: "No I wrote them, but I've never read them" - that leaves the dim ones puzzled all day!) I don't think I've every had a carer come who knew even the main diagnosis much less the sub diagnosises (like heat intolerance, seizures, etc).

But interesting point about the meds becuase someone who will take the same pills 7 times in a row due to dementia would say, "Of course I direct my own pills." - they are very convincing for the first 20 minutes or so. It is only later that you notice that this all seems to have happened before that you start to "get it" or at least that was my experience as amateur care giver while I was in Respite and the carers all took off leaving me in charge (I didn't even get paid!).

Ableize disability information said...

Hi Emma

This is a change of direction from the above posts but i tried to reply in your 'poetry/writing' post but couldn't as i guess it closed so will post here for you and anybody else that may be interested, if you wish to move this please do.

OK back to poetry/writing, i recently had the pleasure of working with a company called the 'Arvon Foundation' they run writing courses in some really lovely places, reason i'm mentioning this is they are A a charity supported by the Arts Council England and B have a great deal of disabled students, they run courses in some of the UK's most outstanding settings.

Their location at Shropshire is by far the most accessible ( was the home of John Osborne the play writer) with a fully equiped disabled room and WC, courses are usually about a week and carers are welcome, anyway i'm waffling but if its of interest to you or any others take a look at their site, i wont put a link in but they can be found by putting 'The Arvon Centre' into google.

Feel free to mail me for more details at admin at ableize dot com


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