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Ouija boards & Telethons: a guide to funded home care

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Elizabeth McClung | 06:02 UK time, Monday, 13 August 2007

Okay, here is Elizabeth’s E-Z Guide to getting funded PA’s/home care. Step one: Get a good Ouija board. Step two: Ask it who to call in order to get home care. That’s it. Hey, it worked for me.

Pretty short guide, huh? See, I was turned down twice in applying for home care before I called a total stranger to find out how people with MS eat with hand/arm tremors. The next thing I knew I had people in my apartment every day with really long questionnaires (You may think I am skipping something, but I’m not; the people with questionnaires would say “Anne-Marie Q. referred us to come assess you.” And I would say, “Who?”).

The problem: loss of my small motor function, hand/arm trembling and having my hands and arms go “almost” where I told them to. Most nights, getting ready for bed is a loud event: Reach for the toothbrush, but knock over the hairspray and foundation bottle instead. Swear. Reach for toothpaste when arm jerks left instead sweeping the hair dryer and brush off the counter. Swear more. Vow (again) that tomorrow I will clear the bleeping counter of all the bleeping things so I stop sounding like a bleeping drunk trying to juggle wine bottles.

I was having the same problem with eating, but with more splatter. See the fork rising toward lips, see me trying to make final micro adjustments, see fork falling from fingers. See Elizabeth swear and beg Linda, “Please, no more peas!” In the lingo of one and two year olds, “Here comes the choo-choo, open wide! Oh no, the rail service has had a horrible crash just 40 feet from the station!”

So now I had, arriving daily, young women with half inch thick assessment questionnaires (including a whopper from the World Health Organization). I was exhausted. I fell out of the chair a few times during the questions. Or (as happens when I get tired) I started slurring my words. “Just another 60 questions or so,” they would assure me before continuing; “Are you now wearing adult diapers? If not, how many weeks/months until you anticipate wearing adult diapers?” I was chastised for not having made a living will. I was chastised for not having put in wheelchair bars. The assessor was 19. I had spent over ten years getting four different degrees including a Ph.D. I tried to assert some authority the next time she called me Liz by pointing to myself and correcting her with, “Dr. McClung.” Only I got stuck and couldn’t get past the first syllable. “Daaawwww...” I started again gesturing to myself, “Daaawwww!”

She turned to Linda and asked a) did Linda have power of attorney yet and b) was Linda sure I understood what was going on?

By the time the last woman, C., came to assess me, I was a wreck. I had a visible difficulty in supporting myself enough to sit upright. C. was sympathetic. She thought I was being “brave.” When I mixed up what month it was, C. got a little dewy eyed. Linda moved me out of the wheelchair, and I continued answering her questions while lying down and on oxygen. C. kept offering to “come back another day.” I was desperate for her to stay (God, not ANOTHER visit!). C. saw this as “heroically struggling on.” At the end of the questions, I gestured her close, pulled off the oxygen mask and whispered to her, “It’s not like this all the time; often I’m better.” C. responded by immediately authorizing homecare.

She went off and talked with Linda. Catching her attention, I tried again, waving her in, and pleading, “It’s not always this bad.” C., with a tremor in her voice told Linda that normally I would only get 120 hours of home care a month but she was going to authorize 160 hours. I was a “special case.” I realized that she thought I was “keeping a brave face against adversity” and lying to her about my condition as a proud yet inspiring young cripple. Seriously, the more I tried to convince her I wasn’t like this ALL the time, the faster she authorized things. Eventually I gave up, fearing one more attempt to convince her I wasn’t completely feeble would end up with me on a Telethon.

Two hours after she left, she called back to say the first home care worker was coming the next business day. And that an occupational therapist was coming the following day to put in wheelchair bars and get other assistive equipment for me. This kind of speed and concern in a nationalized health service is like having your bank call to let you know they are giving you $50/50 pounds because they noticed you are low and are concerned you might incur bank charges. I kept waiting for the health police to burst down the door shouting accusingly, “You do get better!” and haul me off to health service detention.

What I didn’t realize then was that getting a PA/home care twice a day could, at the start, be its own form of punishment. My first clue was when the first worker walked through the door and said in puzzlement, “You’re in a wheelchair?” My file had been sent from C. to a home care provider, only I was two streets out of their catchment area. So they forwarded the file to another home care provider. Somehow the file got lost. The home care workers had been informed of my health problems; which consisted of one word: Depression.

Ah, no place like home. Now this was the level of misinformation and incompetence I had come to trust.

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It sounds as though C has been reading too many Victorian novels. Have you considered the advantages of being a (posh) Victorian invalid? You could explain at once that your needs include a very elegant chaise longue, on which to recline, some smelling salts and a parasol, should you venture out. The costumes could be pretty good, though not Goth enough unless you can persuade C you are also a bride of Dracula or, better still, Carmilla.

Good luck in dealing with them - and keep posting!

Great post! Many chuckles! Yes, I've met people like C - the dewey-eyed ones who look upon me as the brave little choo choo train that could ...sniff...

Wow, you qualified for home care when you live with a partner? How'd you manage *that*?

  • 4.
  • At 04:22 PM on 14 Aug 2007, Kate Jones wrote:

Interesting you got labelled as "depressive". Despite the fact that many people with physical disabilities end up with mental health problems (it's not surprising is it, when you think of it) - many mental health services are simply not available or accessible to people with physical disabilities and/or mobility problems. It's as if you've got to 'decide' whether you have mental health problems or a disability.
Of course it works both ways, if you're already in the mental health 'system' and start complaining of physical problems, it's got to get pretty well to the wheelchair stage (or the emergency surgery stage) before they stop saying 'just keep taking your medication' or labelling you as 'neurotic' or (worse) 'attention-seeking'.
A few years ago, Mind started a project around physical disability and mental illness, but I don't know if it's still going. Anybody know?

Kathz: I didn't even have the victorian essential, the blanket over the legs. But once I get that wicker wheelchair, then watch me and my small bottle of smelling salts.

Ruth: it's a tough gig being "plucky" all the time isn't it?

Zephyr: Told you, I was "heroic" - I have no idea, this is what actually happened. I think it is because Linda is required in her government job to fly to other cities overnight to give training. I think I am using about 50 of the 160 hours at the most.

Kate Jones: Oh, I was asked yesterday if I had seen a therapist about my inability to breath at times (It's in your MIND!). I think they took the diagnosis off my medication sheet, since I take an anti-depressant. I am wondering if I had 'the pill' down, would their computer read: Pregnant

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