Barbara is sitting on the sofa in the front room, naked except for a blue t-shirt. Her legs and arms are cruelly wasted with illness, and even though she is sitting down her body is constantly tormented by a series of spasmodic twitches and jerks. Even looking in our direction as we come through the door is difficult for Barbara. Her head seems to swivel suddenly on the stalk of her neck; her face distorts into a twisted grimace, and she tries to speak, but all that comes out is a series of incomprehensible grunts.
Barbara is a tall woman in her mid-fifties. Her coal black hair still vibrantly curls around her head, but the disease has blasted most everything else. She smacks her lips and groans.
‘Hello Barbara. I’m Spence and this is Rae. Shall we find you something to put over your lap?’
She makes some noises, but nothing intelligible.
Rae finds a towel and drapes it across Barbara’s middle. There is a laminated card of words and phrases on the coffee table. I pick the card up and hold it between us.
‘I understand you’ve had a fall today? Did you fall in here?’
She reaches out a hand and by a main effort of concentration bats the NO box.
‘Did you fall down the stairs?’
‘Did you fall from the top of the stairs?’
‘The bottom? Or a couple of steps from the bottom?’
‘Were you knocked unconscious?’
‘Have you hurt yourself, Barbara?’
‘Where have you hurt yourself? Can you show me?’
She almost falls off the sofa when she leans to one side, but Rae keeps her upright with a gentle hand on her left shoulder, and Barbara is able to indicate her right hip.
‘Let’s have a look’
There’s no sign of trauma. It all looks pretty good.
‘Can you stand, Barbara?’
She stands, and even though she sways and staggers precariously, she doesn’t look to be in much pain.
‘Does that feel okay?’
‘Have you hurt yourself anywhere else?’
‘Do you want to go to hospital?’
‘Don’t blame you. Do you have carers coming in soon?’
Rae has found the folder.
‘There should be one along any minute now,’ she says.
Barbara grunts, nods and slaps the YES box again.
‘Okay, Barbara. What we’ll do is take all your obs and make everything’s all right, then we’ll chat to the carer when she comes to make sure everyone’s happy. Okay?’
Barbara grimaces and jerks her head.
‘Okay. Let’s do that, then.’
The carer bustles in through the door.
‘What’s happened?’ she says, out of breath. ‘I saw the ambulance parked outside...’
‘Everything’s okay,’ I tell her. ‘Barbara had a fall at the bottom of the stairs, but apart from a little bruising around her thigh I think she’s okay. She says she doesn’t want to go to hospital and frankly I don’t think she needs to. How long will you be here with Barbara now?’
‘A couple of hours. We’ve got a few things to do.’
‘Okay – good. You know Barbara better than us. If there’s anything that strikes you as odd in that time, you can always call us back. But I think it’s probably best if she stays at home and rests.’
The carer goes up to Barbara and hugs her.
‘You!’ she says. ‘What have you been up to, hey?’
For the first time I really notice the Pacific Island decor of the sitting room. There are prints of exotic birds, jungle scenes, photos of native villages. And dominating it all, towering above us at the side of the sofa, a totem pole. Each segment is a stylised animal, birds, monkeys, and strange squirrel-like creatures carved one on top of the other, wings and arms outstretched, their beaks and mouths fixed in wild attitudes of song.
‘Love the totem pole,’ I say, as we collect our things together. ‘Anyway – nice to meet you, Barbara.’
And despite the catastrophic and uncontrolled movement of every aspect of her face and body, it seems to me that the light flooding in from outside turns in her eyes as eloquently as any words anyone could possibly say.
aaggh, life is so cruel
HD is such a hideous disease. Barbara was going into it with incredible bravery & dignity - and her carer was lovely, too! Wish stem cell tech. was further along, though... :/
Fascinating what people collect thruout their lives-the places we've been, the people we've known...
Definitely. It's always intriguing what people surround themselves with. That totem pole would've been imposing under any circumstances, but it was particularly striking then. Not sure why - maybe because it was so active but then so carved and caught at the same time.
I have speech problems and my 'back-up' option is a laminated card like Barbara had.
You've just had a small brush with how devastating it is when high-tech voice-output communication aids are not assessed for and provided quickly enough. If Barbara had what she needed, she'd be able with presses of a button (modified to block out tremor) to tell the careline operator what had happened, talk you guys through things properly, phone her carer to come in early if she needed to.
Losing speech is terrible most of all when the things we need are not provided.
Sorry to hear about your speech problems, Becca. I can't imagine how frustrating it must be. In Barbara's case, I didn't get the impression that she had any hi-tech communication aids - for whatever reason. I would hope that if something like that was suitable it would've been provided. A laminated card is a poor substitute, though.
Hope things are good with you today, Becca. Thanks v much for the comment!
Because I have the equipment I need, it's not too bad - but so, so many people don't get that equipment - the vast majority of those who need it, and especially those who are over 21.
So no, it's very unlikely that Barbara would be provided with a communication aid (especially when cognitive decline is present or expected)... she's very probably stuck with her laminated card and Heaven help her when she can't control that hand enough to swipe at YES and NO.
Things are great with me actually thanks - I'm just about to go on holiday on an adapted narrowboat - complete with ceiling track hoist and all! Very exciting. Bruce Wake Trust if anybody's interested.
Hope all's OK for you, too.
It's definitely an issue that fails to get the publicity or attention it deserves. And during these austere times, it's probably unlikely to change. Although maybe now that we're going into the Paralympic games, a few more of these issues will get aired.
Have a great holiday, Becca - and thanks again for the comments.
Must be so frustrating for Barbara.The door you opened Spence,that's all she wants to be let out as well.
Such a horribly cruel illness. I'd only heard of it because I'd read about how Woody Guthrie was affected. I think Bob Dylan went to visit him before he died, played some of his songs and told him how much he meant to him. Always made me think v highly of Dylan (as well as songs like 'A hard rain's gonna fall', of course).
Hi spence, I used to help look after a lady with hd, she used to frighten the bejesus out of me when she sat on the loo cuz she'd be twitching so much i was scared she'd fall of! I used to have to quite firmly ask her to sit still, which worked as she'd concentrate on what she was doing, bless her. She actually put herself in a home so her hubby wasn't burdened with her she said. She used a word board as the disease progressed. Mn is another cruel one to.
Yep - all horrible variations on a theme. It surely can't be long before stem cell research provides a solution. Let's hope so - as degenerative illnesses go, Huntington's is one of the worst. Still - she had a lovely home, and good people around her, so there was some light in it all. :)
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