Last October, aged 95, my mother had a stroke. She was pretty much fed up with life anyway. What's the point of it when all your friends are dead or dying, your bridge partners have gone deaf, blind and ga-ga and you can hardly walk or function independently? And then on top of all that, she had the stroke.
Stroke is the third biggest killer and largest single cause of disability in the UK, but we didn't know that. In our family, we're terrified of cancer. We never worried about strokes, so it took us by surprise. One day my mother was glamorous, a fabulous cook and could talk for England (my father called her Blabbermouth), next day she was dribbling, couldn't speak, was paralysed down one side, helpless and looked nearly dead. Her face was sideways. I thought she'd had it. How can someone of 95 recover from something like this? But she has made phenomenal progress. Oddly enough, she wasn't even bad-tempered about it. She just struggled on, with a droopy face, tube stuck up her nose, making desperate efforts to talk and swallow, and rarely complained.
After strokes, people often get depressed. Well you would, wouldn't you? But my mother didn't. In those first few ghastly weeks, she was too busy trying to move and speak. It was vital to speak. How else does one ask for a bedpan? A drink? A painkiller? Next to speaking, her aim in life was to drink tea again. Another bit of news for us: if you can't swallow properly, the most dangerous thing you can do is drink a cup of tea. The hot liquid may go down the wrong tube into the lungs, you'll get a chest infection and die. The hospital absolutely will not risk it, so my mother had to drink slime (thickened liquid) and eat slop for weeks.
But the aphasia was the worst thing. You know what you want to say but the brain can't access the words, so you can only gabble rubbish. Very frustrating for everybody. The words came back very gradually, but it took hours - a whole hospital visit, maybe two visits, maybe days, to work out which specific thing she wanted. The first big puzzle was the thing you press to call the nurse. She couldn't find it. We knew she wanted something. We didn't know what. She poked at the nurses, she pulled at their uniforms, she pointed at the wall, she made weird noises, she drew funny little drawings. The whole ward was guessing. We were playing charades for ever. And then the woman in the corner bed guessed. The little handset with the control buttons on it had fallen down behind the bed. A huge cheer went up. And this went on for weeks. Hours of guessing for each tiny requirement. We were all exhausted from trying to communicate the weeniest pieces of information.
Various bits of madness in the ward kept my mother cheery. Every day the poor lady opposite kept packing her bags, getting dressed and setting off for America. Eventually she escaped the ward and was found her in the lift downstairs. The lady in the next bed echoed everything we said. She joined in our conversations from behind the curtain. And early on my mother learned to says "bollocks". Expletives sometimes come back first. We found that when one is in hell, one might as well have a laugh.
As soon as she could swallow, we brought her home. In hospital there are doctors, nurses, therapists and visitors around - constant diversion. When you get home, you're more or less on your own. We were allowed six weeks more speech therapy, our local GPs could not possibly have been more helpful, but what was my mother to do all day? She couldn't read, write, ring her friends, answer the phone (although the speech was improving slightly). She could only watch telly. She couldn't read the pro grammes, press the right button on the remote control, take her own pills, read a book, have a chat. The charades went on and on.
And my mother hates what has happened to her physically. She ate so little for so long that she's now lost weight, her face has changed shape, her false teeth don't fit, it hurts to eat and food dribbles out of the side of her mouth. She's not incontinent but wears nappies in case, because she's terrified of smelling of wee; she can't hold her knife and fork properly, her food drops all over the place, her clothes get dirty in minutes, her skin's all dry and flakey, she has sores under her bosoms, she can't manage to attend to any of it herself.
I have to do it. It is very weird to have to touch your own mother when you're a grown-up. Well I have problems touching mine. Luckily she can still wash and wipe her own bum, she struggles valiantly to do it, but I must do bosom ointment, eye-drops, dry skin ointment, foot and back washing if the bath lady doesn't turn up, pulling trousers, knickers and socks on and off, adjusting nappies and wiping off dribbles. This morning she cried because she dropped her Fybogel all over the floor and her drink all over the table. She's clumsy because she still can't use her hands properly. She cried because she felt useless and because I had to wipe it up.
I am getting used to all this. Sometimes, when she moans, or nearly chokes, or coughs up bits of dinner or makes a fuss because her ointment feels cold, I want to have a scream or bark "shut-up". I don't do it, but inside feel I am a deeply horrid person. A Rosa Klebb. But it's much worse for my mother. She feels a mess and a nuisance. She doesn't like me having to do everything for her. She thinks she's lived too long. She has always been dynamic and glamorous, never went out without her lipstick on, her clothes were always smart, she has medals for Latin-American dancing, so this is a bit of a come-down - lying about looking and feeling frightful with nothing much to do.
Relays of events and visitors need to be organised if someone recovering from stroke isn't to go raving mad or sink into gloom. So we had speech therapist, home-care lady (to help her in to the bath), hairdresser and friends visiting. My friends, daughter and partner have been a godsend: visiting, supervising, playing charades. Thank you everybody. My mother and I have our little routines: we watch EastEnders and other favourite telly programmes together - quality time. She sits in the sun while I do the garden, she comes to the park to watch the dogs play, so we're cleverly combining outings and distractions with things I have to do anyway.
It has all worked. The speech has come back - not what it used to be, but comprehensible and crystal clear in chunks. We can converse. My mother can eat proper food, last week she made a pineapple cheesecake, she's been swimming at Archway Pool, the hairdresser comes regularly, she no longer looks like the Hag of Doom, and biggest surprise of all - she can read again. On June 10 my mother was 96. She read a whole chunk of newspaper. So we called the mobile library. They came at once and my mother started reading a book. Three hundred pages in three days. What a heavenly birthday breakthrough.
My time is probably more fragmented that it was, but I find that even when she's asleep or watching telly or making no demands, I manage to fragment my own time with tea-breaks, phoning chums, playing with the dog - the usual procrastinating and diddling one tends to do if there isn't a deadline. Sometimes I long to go away and live in a cave, alone, but mostly I don't. So on the whole, we are doing all right.
· The Stroke Association is on 020-7490 7999.
