Dementia

17 October 2008

Lost in the mist

What makes a fine mind begin to unravel? Catherine Eden witnessed the slow erosion of her mother's memory and describes how frustrating and frightening it was.

0
What makes a fine mind begin to unravel? Catherine Eden of Femina magazine witnessed the slow erosion of her mother's memory and describes how frustrating and frightening it was.

'If I ever lose my mind, just push me off a cliff; I'd hate to be a burden.' That's what my mother used to say when she was still effortlessly managing a job and a home; cooking Sunday lunch for the extended family; engaging in political debate and devouring books that spanned topics from mystery to mysticism.

I can see her, perched on a kitchen stool in her satiny nightdress, her back straight, her fine hair released from its upswept style, waiting for the last kettle of the day to boil. She drank hot water with a squeeze of lemon juice: 'Good for the skin, Cathy. Always take care of your skin.'

When I came home from a night out I'd find her waiting up for me, with an old favourite from the bookcase open on her lap: Agatha Christie ('such tasteful murders'), Dickens, CS Lewis, AA Milne. She loved Helene Hanff's 84 Charing Cross Road and wrote to the author to tell her so.

'I got a letter from Helene today.'

'Helene who?'

'Hanff, of course.'

She wrote to the world, and the world wrote back. She worked as a secretary in academic settings – the closest she could get to studying herself – and typed her long, eloquent letters, with carbon copies to file, on her new-fangled golf-ball typewriter. She was so adept that she could look up and converse without interrupting the flight of her fingers over the keys. She set great store by intelligence and made sacrifices to give her children the educational opportunities she had missed. It seemed impossible that her keen mind would abandon her. But it did.

I would remember you
I have another picture of her, aged 87, sitting at the oak table she used to preside over, spooning soup into her mouth with a trembling hand. Her caregiver, standing by protectively with a cloth to mop up spills, tells her slowly and clearly that her daughter has come to visit her.

'Hello,' my mother says. 'It's been ages since I saw you.'

'I come every week, Ma.'

'What's that? No you don't. You never come round. I would remember if you did.'

'Well I'm here now. How are you?'

'I don't know.'

'Are you enjoying your soup?'

'Soup? I haven't had any soup.'

I cast around for a topic of conversation, but she suddenly leans forward: 'Are you getting married today?'

'No. Why do you ask?'

'Someone is getting married today. Do you have any children?'

'Yes, two.'

I collect the photographs from the sideboard and introduce her to the members of her family, as I do every week. There is no flicker of recognition, not even when we get to my father, her partner of more than 60 years. He died in his bed 18 months before, of lung cancer, depression, exhaustion and grief for the drawn-out loss of his lifelong companion.

'Has somebody died?' she asked repeatedly that day, even though we'd sat with her beside his body and encouraged her to say goodbye. 'My husband? How terrible! Why didn't anyone tell me?' We gave her the news, over and over, and watched the jolt as she tried to process it afresh, again and again. Somewhere, dimly, she knew that there were financial implications to his passing. We reassured her but she whispered

'Will you help me to get a job?' as I tucked a rug over her on the couch. Mercifully, her anxiety about practical matters quickly faded, but along with this remnant of awareness, the memory of my father slipped away too. Within the week, he and their life together had evaporated from her consciousness.

Small signs of slipping
Alzheimer's and other dementias have been likened to Swiss cheese. When you talk to someone who has one of the many forms of these illnesses you occasionally land on a bit of cheese, but mostly, you just find holes. Nutritional deficiencies, toxins, obesity, diabetes and smoking have all been linked to memory loss, but none of these markers described my mother or explained why she developed vascular dementia. Perhaps it was triggered by the stress of moving from their townhouse to a cottage in a retirement complex.

Almost immediately, her body pitched sideways and for a few days she walked around like the leaning tower at Pisa.

'Stand up straight,' I admonished, just as she had done to me countless times in my youth. Her posture came back but her famous efficiency did not. There were other signs of declining ability that we attributed to ageing: forgetfulness, kitchen mishaps, clothes that were not as clean as they should be. And then, in her early eighties, she fell and shattered her knee, and when she came round from surgery she was dramatically less functional than she had been before. Was the anaesthetic to blame? Maybe, but no doctor would admit to that. Or did a slight stroke cause her to fall? We will never know and it doesn't really matter. The damage was done.

She started fastening layers of clothing together with safety pins. She refused to wear tops and pants that weren't identical in colour, and soon she would only wear dark blue. The upswept hairstyle had long given way to a short grey wig, which she snipped with nail scissors until it looked as if rats had been at it. She hid things and threw things away. She set fire to table napkins that she'd 'dried' in the microwave oven. She became reclusive, suspicious and resistant to help.

My father, haunted by the spectre of the frail-care unit, colluded with her in refusing outside assistance. Physically weak but mentally agile, he was the brains of their fragile team and she, once she could walk again, was the legs. He directed her around the cottage but grew increasingly frustrated with her repetitive questions, her inability to retain information and her sudden bouts of aggression.

He had groceries delivered, but she was no longer able to prepare adequate meals. Their food went off, their dishes turned greasy; my father had stomach upsets and my mother stopped washing and developed a vicious leg ulcer that refused to heal. We, their children and grandchildren, became increasingly distressed by their deterioration.

At what stage do you step in and declare your once-functional, dignified parents incapable? My father was lonely and embattled but mulishly stubborn. He did not want a stranger in the house so we did what we could for as long as we could. We took them meals on weekends; we cleaned the kitchen and washed all the crockery before making tea; I'd strip their bed and wash the sheets, and – if I could persuade them to change – their shirts as well. On these occasions, my father was embarrassed and my mother enraged.

'I'm not dirty!' she would hiss, pushing me away with surprising force. 'Leave me alone!'

My sister flew out from Ireland and one day we frogmarched our grubby mother into the bathroom. We filled the basin, stripped her and took it in turns to grip her flailing arms and wash her all over with a soapy cloth. In the melee, we knocked her wig over one eye. She gasped, whipped it off her head and beat us with it in a fury. 'Wicked, wicked girls!' she shouted.

The scene was both hysterical and heartbreaking and, we all agreed, the end of the road. It was time to force our parents to accept help.

Blessed relief
After all the stress and the sadness of trying to keep them afloat, it was a blessed relief when we found Wendy, who was warm, caring, patient and wise, and who came once a week until my father was won over and then every morning to help them wash, to give them a cooked lunch and to gradually put their house to rights. My father soon came to depend on her company and her strength. When his cancer was diagnosed, it was Wendy who supported him and it was she who was with him when he died.

We arranged a roster of night nurses to supervise my mother, but she hated them all and chased them away. I dreaded the late-night phone calls and the 40-minute drive to deal with the latest crisis. I resented the way she consumed my time and energy and then felt terribly guilty that I was not doing more for her, taking her in, keeping her safe. I bemoaned the state of our society that allows old people to be so vulnerable, and I fretted about the possibility that despite Omega 3, broccoli, yoga and Sudoku, I might also be unable to care for myself one day.

'Well, you won't know about it,' my son pointed out. 'We'll look after you, so don't worry.'

When Wendy asked if she could move in to care for my mother full time, we gratefully agreed. Although my mother's days were shrouded in mist, she was calm, clean and safe with someone we liked and trusted. We could not ask for more.

Shortly before she died, we photographed her with a newborn great-grandson. She had no grasp of his relationship to her, but her hands remembered the shape of a baby and shifted to accommodate his tiny frame. 'Don't drop it,' she said in one of those rare lucid moments when a glimmer of memory pierced the fog.

'Do I have a little home?' she asked one day, as I helped her up from a nap. I told her she did.

'But why don't I know that I have one? It's so very confusing.'

'You've lived a long time, Ma, and sometimes you forget things.'

'How old am I?'

'You're nearly 88.'

'Good gracious!' she said, suddenly focused and amused. 'It's a miracle I'm still alive!' And then the mist swirled again and I lost her.

'Wendy's got a nice lunch ready for you,' I told her.

'Who's Wendy?'

'Do you know who I am?' I asked.

'No,' she smiled, 'but I think you are mine.'

'That's right, Ma, I am. And that's all you have to remember.'

(This is an edited extract of a feature that appeared in Femina magazine, September 2008 issue. For more fascinating features like this, see the current issue of Femina, on sale now.)

For support:
Contact Dementia SA at (021) 421 0077/78

For more information on Alzheimer's and other dementias, visit our Dementia Centre

 

Read Health24’s Comments Policy

Comment on this story
0 comments
Comments have been closed for this article.