Some of you might remember the sister-in-law.
She had an aneurysm back in March – a bad one. The aneurysm led to a stroke, and an ABI (acquired brain injury). She spent months in a cold, draughty rehab hospital, relearning how to live. Now she has come home. Shee-it, but she was glad to get out of that place. They even made her wear tracky dacks and running shoes – and she’s strictly an AbFab woman, didn’t even own one of either item.
I knew the cliches about people who have a stroke being “paralysed” or weak on one side. That doesn’t really describe “left neglect”, which is what she has. Neglect is an Oliver Sacks type of concept– it’s not a matter of being too weak on your left hand side to put your left leg in your trousers; it’s a matter of not noticing your left trouser leg is there at all. Same for the food on the left side of your plate, and the text on the left hand side of a page. It broke my heart when she said, casually, “I’m going to have to be really careful with that when I’m driving.” Of course, she won’t be driving for a long, long time. Perhaps never.
Of course, she’s physically shaky as well and has to watch herself to avoid falls, which could be serious as she still has the bone mending in her head. (Hair’s growing back a treat; the women in that family have fabulous hair: they got it all, the men all go completely male-pattern bald.)
She needs help, dressing, bathing, cooking, shopping, and a stream of visitors has come from over the pond to be with her. She’s the eldest of five siblings. Her youngest sister and a brother have been with her at home, supervising and helping her husband and eldest daughter. The fear they have is how she will cope at home, alone, and stay safe. And the family is looking at some pretty hard choices.
Because, like so many women, she’s also a mum. Let me introduce you to her youngest child, Sam. (Names always changed, naturally.)
Sam’s like any toddler in many ways. He’s cheeky, has the most evil grin you ever saw and dribbles a bit as his teeth bother him. He’s incredibly fussy, and there’s a lot of things he won’t eat. He isn’t toilet trained yet, but can stand up to have a nappy changed.
He charges around energetically, like all toddlers. His balance and coordination aren’t quite up to scratch, so sometimes he’ll veer into things, or people. He’s quite naughty at times and inclined to grab. If he wants to get to something, he’ll shove you aside with an elbow (Manners!), and if you’re one of his favourite people he’ll launch himself at you to jump into your lap, wrestle you or just grab your hand and charge off to find a snack. If he’s outside, he’ll probably try to run into traffic, and you’ll have to try and grab him and get him to cooperate.
Sam is sixteen years old.
The current waiting list for complete residential care for a teenager with a profound disability was roughly 3000 in 2004. I haven’t been able to find a direct update, but this report suggests the situation hasn’t improved.
He was too strong for her already. We always knew something had to give, we just thought it’d give a little more… gradually.
According to one family member, the social worker assigned to the case asked her whether anyone in the family “could give up work to go on the carer’s pension to look after them”. All we can hope for is that the shocking double whammy of Sam’s and his mum’s disabilities will somehow force the DHS to bump them up the priority list, pronto. Of course that’s no comfort to someone else, somewhere, hanging on in quiet desperation, and now moved down a step through no fault of theirs.
Sister-in-law’s older daughter has just started university. In the nineteenth century – and even part of the last – that would have been it. The rest of her life would have been spent as an unpaid carer. As it is, the family is adamant that’s not going to happen. But in the absence of fulltime residential care, she and her Dad (who’s in fulltime employment) are just… on the spot. They will be juggling the housework, Sam’s daily care and Sister-in-law’s daily care with tag-teaming helpers and respite arrangements, fingers crossed that a fatal accident won’t happen.
October 15-21 is carer’s week. The slogan is “anyone, anytime”. I now know how true that is. One pregnancy, one car accident, and this could be you.