If you have one parent with Huntington's disease, you have a one in two chance of inheriting the faulty gene. The risk is one in two for each child. You may still be in your childbearing years when you are diagnosed.
I watch from the window as my son Tommy gets out of his car. He looks as if his bones are weary. His head is bent, and he scuffs his feet on the pavement. He looks very tired, and slouches to the door of the block of flats, pushes the button for 1B and when I answer it answers he shouts,
‘What’s for dinner, Ma, let me in.’
I click the door open and as he walks towards the stairs, I open my door.
‘Dinner’ll be ready in half an hour son,’ I say, ‘go get cleaned up.’
I can tell by the look of him he’s had a difficult day. I realise by now that some days he has to take a wee while to himself to shake off the feelings of tiredness and hopelessness that comes with the job, so that he can try to start fresh the next day, not an easy task, but I doesn’t ask too many questions.
He is the apple of my eye, the reason for my life. I’m a lucky mother to have him so near. I only wish he would meet a nice young woman and settle down before I set off on my next big adventure. With all my aches and pains these days I don’t feel I have long to go. I don’t fear death. It holds no mystery for me. My spirit will carry on with other things I need to do, but I do worry for Tommy. He needs a good wife to come home to at night to share his hopes and dreams with, not his old decrepit mother.
As I drag myself up the stairs, I tell myself for the hundredth time that I have the best of both worlds. A flat, on the first floor of my own, and my Mother who adores me and cooks my dinner most nights, living in the flat below. This arrangement is not just to satisfy my need for food and comfort, but for my mother’s need for a bit of company and support. She is long widowed and suffered a stroke two years ago which has left her slightly disabled. She walks with a stick, gets a bit forgetful, and tires very easily. When the flat above hers came up for sale, I jumped at the chance to be close to her for the times when she needs help, but separate homes lets both of us have our personal space. Of course I pay some dig money for the privilege of her home cooking and take her shopping, and anywhere else she wants to go, I would do anything for her really.
People who have to eat alone, or only eat in restaurants are unfortunate, because food that’s prepared and cooked by someone who loves you always tastes better. Men especially, are said to remember till the day they die, what their favourite dish tasted like and smelled like, cooked by their mother. All mothers, all over the world can’t be expert cooks, so there’s obviously that added ingredient that you just can’t get in a hotel or even in the poshest restaurant. My mother loves me so the food at her table is great.
I drop my briefcase inside my own door. I go to the bathroom and quickly take off all my clothes. I step into the shower and start to wash my body, and more importantly, my mind, of this days work. I know that the only way to survive long term in social work is not to take it home, keep the emotions at arms length, and start over calmly every day. I’ve just had a terrible day, but my mother doesn’t need to be pulled down by it as well. I get paid to work the bad days and take the difficult decisions, she doesn’t.
Basically two functional alcoholic parents really messed up today and, as usual, the children got the bad end of it.
Calling an alcoholic, or binge drinker a ‘functional alcoholic’ is the latest social work speak for people who are mostly in charge of their lives and on balance, the children are better at home than in care, but only because we have very little to offer. There is always a shortage of decent foster care places and children’s homes are a poor substitute for a family setting. There is a very fine line between functional alcoholism and family chaos. Sometimes it feels that we take too many risks with these children. The only sure and certain thing is that drinkers are unpredictable. They may say they love their children, they may even be telling the truth, but some days, because of the drink, they can’t make the right choices.
My whole day was taken up with sorting out the mess caused by a lunchtime country and western drinking party, where the toddlers were playing skittles with Carlsberg cans and eating their lunch straight from the tins of beans they had found in a cupboard. They were obviously too long unsupervised by the Tammy Wynette clones karioki-ing in the living room.
One enterprising four year old tried to make a bit of toast for his wee sister and his friends, but managed to set the cooker alight which in turn set the kitchen on fire.
Thank God no one was killed or even badly hurt, but it was a very close thing.
Alice, the mother of the young fire starter is a strong endorsement for the curative powers of alcohol. Sober, she is inhibited, stiff, grumpy and inarticulate, but drunk she is lively, happy, tolerant and very witty, but tends to forget she has two pre-school children who need constant supervision.
Of course, after the party, after the fire officers left, after the police had been, and the children had been taken to hospital to be checked over, I got to interview the grumpy bear with a sore head. Her husband Scott had sloped off down the pub, as there seemed little chance of him getting his tea without the kitchen being completely renovated.
Alice always has to face the music alone. Her life, her faults, exposed and raw, one more time laid before the authorities. She has a bad binge problem, a waster of a husband and now two confused damaged children heading for temporary foster care. The four year old, Colin, who tried to make the toast, had to have some treatment at the hospital. Thankfully his burns were superficial, but still very painful. His wee sister, three year old Sarah, was with him now on the way to foster parents in Shotts a village not far away. It’s an easy decision today to put the kids with foster parents for a bit of respite and loving care, but a much harder and more complicated decision to put them back. Thankfully those decisions are for another day.
By the time I get downstairs, Ma has a cup of tea ready for me, and my dinner is on the table. She asks, as she always does what kind of day I’ve had.
‘Not too bad Ma, my usual feat of saving the world and keeping up with the paper work. Feed me now.’