'Mum made sandwiches for imaginary friends and thought there was a little girl trapped in the radiator': Martin Slevin lifts the lid on living with Alzheimer's
21:20 GMT, 27 July 2012
Rose Slevin as a young woman, picture taken circa 1945, who inspired her son Martin's book Little Girl in the Radiator about Alzheimer's
The consultant smiled at Mum. ‘I just want to ask you a few simple questions, Rose,’ he said. ‘Are you ready’ Mum beamed back at him.
‘Tell me, what year is it now’ asked the consultant. My mother frowned. ‘Let me think’, she said. ‘Is the war still on’ ‘Do you mean the Second World War’ he asked. Mum nodded. ‘No, that ended in 1945,’ said the consultant. ‘What year is it now’ ‘Then it must be after that,’ she replied. ‘It’s 2002,’ he said.
‘Yes, that’s right,’ said mum, who would have agreed if he’d told her it was 1812, and that Napoleon was running the country. I squeezed her hand gently.
‘Who is the Prime Minister’ continued the consultant. Mum was on firmer ground here. ‘Margaret Thatcher, the milk snatcher!’ she announced triumphantly. ‘No, it’s Tony Blair now,’ he replied. ‘Oh,’ said Mum. ‘I don’t like him.’ The consultant had stopped smiling. ‘I think we need to do some tests,’ he said.
Alzheimer’s disease is the only medical condition that I know of which affects the family of the patient more than it appears to affect the patient themselves. If you break your leg, it’s your problem. You sit at home in plaster; you suffer and you deal with it. Your family have to fetch and carry for you a bit, but that’s it.
With Alzheimer’s, it’s the other way round. You behave as though nothing has changed, while everyone around you has to deal with the dramatically different person you’ve become.
‘It’s like rolling up a rug,’ the consultant had told me. ‘The end of the carpet nearest to you represents the present, and the other end represents your mother’s childhood. As we begin to roll up the rug, starting from the front, the memories inside the roll are erased and lost for ever, and her reality slips backwards in time. The more we roll, the further back in time Rose has to travel to find a point in her life that she remembers.’
I’d nodded slowly, trying to understand. So that was it, he seemed to be saying. Looking back on it now, I am convinced that my mother’s dementia began the day my father died.
My parents had been married for more than 50 years, during which time they had never been apart.
Mum had nursed my dad devotedly through his final illness and when death eventually came, she had gone into a deep shock. It had been a difficult period for me too, with my own marriage coming to an end at the same time.
Which was why I found myself, a year after Dad had gone, sitting in Mum’s kitchen and asking whether I could move back in with her. ‘Oh, that would be lovely!’ she cried. ‘We could have tea together every day!’
I hadn’t realised quite how much the dementia was starting to ebb and flow in her mind — already much worse than when we’d seen the consultant just a few months before. But once I’d moved back in, filling my childhood bedroom with the remnants of my marriage, her decline became all too apparent.
Family photo: A proud Rose holding Martin's baby son Daniel and Martin holding his young daughter Rebecca
I stepped out of the shower one morning to find my bath towel cut into a series of neat strips, about 12 in all. ‘What’s happened here, Mum I’d called, holding the pieces up for her inspection.
‘Ask Aunt Peggy,’ she said. ‘That’s just the kind of thing she’d do.’ ‘Aunt Peggy’s been dead for years,’ I replied. Mum looked at me if I’d hit her. ‘How could you say such a thing’ she said, tears springing to her eyes. ‘I spoke to her only yesterday.’
That was the brutality of ignorance on my part. Later, when I understood a bit better how Alzheimer’s worked, I’d be much more tactful.
Another time we’d been getting ready to go out and I’d told Mum she needed a coat. Like an obedient child, she went and got a lovely dark blue cashmere affair from the hall; I remembered my father buying it one year for her birthday.
‘Now can we go’ she said. I turned to look at her. The stitching around the left shoulder seam of the blue coat had been unpicked and the sleeve completely removed.
‘For Christ’s sakes, Mother!’ I exclaimed. ‘It’s only got one f***ing sleeve!’ ‘Don’t you dare swear at me!’ she yelled back. ‘You wait until your father gets home!’
It took me a long time to understand why Mum kept cutting everything up. But I finally found out that Alzheimer’s sufferers will often continue to carry out their once-familiar tasks as a way of anchoring themselves in the confusing sea of their new life.
Mum had been a seamstress all her adult life, so that when she found herself chopping up towels and clothes, in her own mind she was back in her workshop, cutting up fabric for curtains and bedding.
Then, and many other times in the years I looked after her, I realised how often there is a perfectly simple explanation for the apparently inexplicable. It was around Christmas that year when I came home one evening to find Mum watching TV with a huge, headless bird in an armchair next to her. Its enormous drumstick legs were pointing downwards as it defrosted, creating a huge puddle on the chair seat.
‘What’s this, Mum’ I asked. ‘It’s our Christmas turkey, of course,’ she replied, as though I were an idiot. ‘I bought him from the supermarket this morning. I couldn’t resist him.’
Fond memories: Pictured from left to right are Rose, Bernard, Rebecca, Martin's ex-wife Wendy, Daniel and Martin
I read the label on the creature’s leg. ‘Giant Christmas goose,’ it announced. ‘Will feed 12 people’. We were just two for Christmas dinner. The day before Christmas Eve I’d got home to find all my socks pinned to the walls and ceilings of the house. ‘I’ve been putting up the decorations,’ cried Mum, dancing into the hallway.
And then there was the imaginary Irish band. I can’t remember quite when they appeared, only that there were six of them — an accordion player, a couple of guitarists, a violinist, perhaps a banjo player and a singer called Michael who had a lovely voice, according to Mum.
I was so grateful to those lads. They would keep Mum entertained for hours, her foot tapping and her body swaying as she listened in her imagination to the music she’d adored as a little girl growing up in Dublin.
And how she loved to look after those musicians! Whenever she made herself a cup of tea, which was often, she’d pour one out for each member of the band as well. It was the same with the sandwiches.
As the months went by, I’d often get home to find every cup and plate in the house in use, with at least eight cold mugs of tea scattered round the house and plates of uneaten sandwiches everywhere. At one stage we were getting through several loaves of bread and three pints of milk every day.
One evening, when we were watching TV after supper, I saw Mum lean over and look at the radiator at the back of the living room.
I watched as she smiled lovingly at it, and nodded once or twice. Her lips moved as though she were saying something, and then she nodded her head again.
Martin would often find his mother Rose had made tea and sandwiches for her imaginary friends
‘What are you doing, Mum’ I asked, gently. Her cheeks flushed in embarrassment. She shook her head but did not reply. ‘Why are you talking to the radiator’ I persisted.
‘She’s asked me not to say anything!’ exclaimed Mum, her eyes filling with tears. ‘It’s the little girl in the radiator.’ Tears were pouring from Mum’s eyes now. ‘She’s all alone in there,’ she explained. ‘She’s trapped and she’s frightened, and I don’t know how to help her.’
I went across the room and put my arm around her. She sobbed into my shoulder. ‘What can I do to help’ I whispered. ‘You could let her out!’ she cried, and the tears came again. ‘Tell her I said it’s OK, she can come out,’ I replied.
It’s funny how easily you can get caught up in another person’s delusion. After that night, I found myself talking to the little girl in the radiator with Mum on many occasions.
I have no idea whether doing this was good for her mental wellbeing or not. A psychiatrist might say that I was strengthening the delusion by playing along with it, but what was my alternative At least this way we were sharing precious time together. And for me, that had to be a good thing.
But things were worsening fast. ‘I’m off now!’ she called up the stairs to me one night, after putting on her raincoat, headscarf and gloves. ‘See you later.’
I knew she was going nowhere —her behaviour had been getting more and more erratic lately, and I was having to keep the front door locked and hide the key. ‘It’s quarter past three in the morning!’ I shouted, pulling the pillow over my head.
‘I have an appointment at the hairdresser’s!’ she shouted back. ‘I can’t get out!’ ‘The hairdresser’s doesn’t open for six hours,’ I yelled. ‘Go back to bed!’ Half an hour later, Groundhog-Day-style, Mum was back by the front door. ‘I’ll see you later!’ she called, rattling the handle all over again.
With Alzheimer’s, it’s not just the patients that go crazy. But it was only when a friend found Mum wandering the streets at five in the morning wearing only her nightie and with a pair of broken sandals in her hand that I knew something had to be done. The truth was simple: I just couldn’t cope.
I wasn’t in the house often enough, or long enough, to supervise my mother properly. Even when I was there, like now, she still wasn’t safe.
That afternoon, with a heavy sense of defeat and shame, I telephoned the social worker who had contacted me when mum had first been diagnosed. ‘I’ll come out next week and have a chat,’ she said cheerily.
A few weeks later, after she’d been moved into a home, the staff advised I leave Mum a few days before going to visit her for the first time.
When I did arrive, I found her wandering along a corridor hand in hand with an elderly male patient.
‘Storm’s coming up,’ he announced. ‘Going to be choppy.’ I later learned her new companion had been in the Navy for years.
Mum broke into a huge smile. ‘I have something to tell you,’ she said. ‘I’m going to have a baby!’
some people, this sort of announcement might have been a shock coming
from their 80-year-old mother. But I’d been looking after Mum far too
long to be surprised by anything.
Mum!’ I said. ‘You’ve only been here a week!’ ‘Terry and I are going to
call it Martin if it’s a boy and Peggy if it’s a girl,’ Mum continued.
‘We’re very happy, aren’t we Terry’
Rose Slevin often relived memories from her childhood in Dublin (pictured above) – including an Irish band that kept her entertained with music she remembered from her youth
And so began a whole new chapter in Mum’s life, and mine too, as she moved between a succession of care homes and hospital wards.
But, the little girl in the radiator remained as firmly rooted in Mum’s consciousness as ever. Dropping in on her one evening, I found Mum kneeling in front of the radiator in her room with a box of chocolates on the floor in front of her. She was holding out a chocolate to the radiator, apparently trying to give it to the little girl.
‘Is she still in there, mum’ I said. ‘She can’t get out,’ replied mum, over her shoulder. ‘She’s just lost in the dark, and she’s confused.’ ‘Do you think she’s ever going to come out’ I whispered. Mum looked at me, sadly. ‘I don’t see how she can. She comes from Dublin, you know. But she can’t ever go home, not now.’
‘What kind of things does she tell you’ ‘She tells me how kind to me you are. She knows all about me, and I know all about her.’ ‘You’ve become very close then, you and this little girl,’ I said.
‘We’re the same,’ replied Mum, simply. I felt a lump swell in my throat as the penny began to drop. ‘Do you know her name’ I asked, although I already knew the answer.
‘Her name is Rose,’ replied mum. The last piece of the jigsaw had finally snapped into place. ‘She’s you, isn’t she’ I whispered, my eyes filling with tears that I could not hold back. ‘You’re the little girl in the radiator, aren’t you’
I thought my heart would break. I now knew why this delusion above all others had persisted through the years, and why the image of a small child, alone, frightened and abandoned in the dark, was the perfect description of the effects of Alzheimer’s itself.
I put my arm around Mum and she put her head against my shoulder. We both started to sob. We stayed there on the floor of her room for a long time like that, just holding each other.
I drove home that night with my soul in shreds. A deep understanding had been forged between my mum and me that day. I felt I might be able to reach her now at some deeper level, and that there was a new future for our relationship.
Sadly, it was not to be. Just days later Mum suffered a severe stroke, followed by two more. On 15 November, 2007, five years to the day after Dad’s death, I got the call to say that she’d gone.
A few days later, when I stood at the graveside, I couldn’t help but smile as I remembered the mum I’d loved so much. I thought about the forest of socks pinned to the ceiling and walls.
I thought about the giant Christmas goose. I thought about Michael and the Irish band, and how their ballads and jigs had transported Mum back to a happier, more romantic time.
And then, in my mind’s eye, I saw the little girl, standing on the other side of the grave. I recognised her straight away from a much-loved photograph of Mum. She was six years old or so, in a pretty pink dress with a matching bow in her hair, and clasping an armful of teddies.
There she was, little Rose, bejewelled with the magic of childhood. Here was the little girl, shining and new, before that vicious thief, Alzheimer’s, had stolen away her future, leaving her alone and frightened in the darkness.
She smiled, and waved, then she turned, and was gone. The little girl in the radiator was free at last.
Extracted from the Little Girl In The Radiator by Martin Slevin, to be published by Monday Books on August 6 at 9.99. 2012 Martin Slevin. To order a copy for 8.99 (incl p&p) call 0843 382 0000.