Tagged: Alzheimer’s disease

The forgotten Christmas

“Here, mum.”

I hold the fork close to her mouth. Turkey, cranberry, a little salad. “Here.” She looks around, moving her head from side to side. One hand picks up her knife, holds it back to front, puts it down again. Then she picks up a spoon. “No, no, here. On your fork.” She puts the spoon down, and reaches for her serviette, clutching it hard in her hand.

My brother and mother-in-law are engaged in Christmas conversation and I can sense their chatter is disturbing to mum; she can follow neither them nor my directions. “Can you shush a minute? Mum, here. Here.” I’ve got her attention, but she can’t see what I’m trying to draw it towards.

“Don’t get frustrated,” my brother admonishes softly, but it’s hard, so hard, to quell the feelings of impatience, mingled with disbelief, followed by guilt. Infants learn to understand pointing by 12 months. My mother can’t see, or recognise, the food being waved in front of her face. This is what the later stages of Alzheimer’s disease looks like.

Before lunch, my brother had put in her favourite dangling cat earrings. We took her to the bathroom so she could admire them in the mirror but she barely recognised herself, let alone the jewellery. “Can you see them?” Her eyes were barely open. “Yes,” she said eventually, so we’d stop asking.

I’d picked her up from her facility earlier that day. Her carers had helped to get her ready. “I had no idea it was Christmas day,” she told me, and it was true: all that tinsel amounted to nothing. Any sense of time was obliterated for my mother long ago, but Christmas was the last important date to go, long after birthdays were forgotten.

“Here,” I say gently. Finally her eyes register the food. She takes it into her mouth, so deeply so I’m afraid the teeth of the fork will scratch her palette. She chews slowly. Soon, I think to myself, she will forget to swallow. Forget to breathe. Forget the things that we take for granted as nothing more than life-preserving instinct.

I’d read a Christmas card to her before lunch. “We will remember you long after you’ve forgotten us,” I told her. She is already forgetting. We re-introduce ourselves to her these days. Sometimes she gets cross. “Of course I know who you are,” she says. Sometimes, she does. Other times, it’s obvious she doesn’t.

“I’m Andrew, your son,” I will say, but her face is as cloudy as Melbourne. Our names, our relationships to her are becoming a mystery. “My son?” she says, puzzled. The word itself has no meaning. Later, when the penny drops, she will become distressed. “I’m off the planet, aren’t I?” she says.

“You’re just having a bad day,” I’ll reply. But mum holds onto a residual insight into her condition that increases her suffering. She worked for years in aged care, becoming an expert in the field. She often told me she could not imagine anything worse than Alzheimer’s disease. She resisted seeking treatment for years.

When we sold her house to fund her care, earlier this year, I trawled through boxes of personal effects. Among them was a 2002 letter from a psychologist to her GP, written after she’d taken stress leave from her job in the health department. It referred to problems with memory and completing tasks. She was 55.

Fourteen years is a long time to watch someone you love disintegrate. It’s also about average for an Alzheimer’s sufferer – seven years from onset to diagnosis; seven from diagnosis to death. There are even seven stages of the disease, according to the most commonly used scale. Mum is in stage six.

It took us years to connect the dots. The irrational outbursts of temper (frankly, she was always prone to those). The onset of panic attacks, as her life and career began to fall apart. Her terror of driving – although the greater terror was the loss of independence after we took the keys from her, following her diagnosis in late 2011.

Suddenly her eyes are open, and there’s an flash of recognition. “I know who you’re talking about,” she exclaims, and it seems she does. I shoot a look at my brother. “She’s back,” I mutter. For a few minutes, she is engaged. She even takes the fork from my hand, though as she holds it at such a steep angle that food falls in her lap.

“This is just lovely,” she says. “I’m the happiest person in the world.” And at that moment, perhaps she is.

A couple of days later I visit her. Earlier, she’d called my brother in a panic, hyperventilating, terrified that she had been abandoned. But by the time I get to her she’s lying peacefully on her bed. “Hello, mum.” She looks up, and her faces creases into an huge smile of relief.

“I thought you didn’t love me any more,” she says, clutching on to me.

“Of course I do. We all do,” I say. “Do you remember Christmas, a couple of days ago? You had a lovely time.”

“Did I?”

“Yes, you did. And Mark came to visit you yesterday.”

“Mark?” Fog veils her face again.

“Yes, Mark. Here he is.” I point to a picture of my brother on the wall behind her with our parents, but again, she can’t follow my finger, scarcely raising her head. Instead she points at a soft toy I’d given her as a present. She’s got quite a collection of them now.

She asks me what I’ve been up to. I tell her I’ve been writing; that I’ve just had a piece on Stevie Wright published. “Who was he again?” I explain he was the singer of the Easybeats, a band of her youth. “I remember him!” she says, clapping. I sing her a few lines from Friday On My Mind. Remarkably, she picks up some of the tune.

“How old was he?” she asks.

“Sixty-eight,” I say.

“That’s awful! He was he same age as me. It could have been me,” she says. Despite her own condition, mum’s empathy for others is intact. But I’m more impressed that on this occasion, she’s correctly remembered her own age.

At least she’s calmed down, and she’s tired. So am I, and I don’t have it in me to stay longer than half an hour this time. Once she’s sufficiently reassured, I make my excuses and leave. I tell myself as I drive away, next time I’ll stay longer; take her out for coffee.

Probably, I think to myself, she’s seen her last Christmas – certainly the last one she’ll be sentient for. The thought feels like a relief. It is not fair for anyone to suffer for so long; to lose touch with everything that defines and connects you to others. But then I think of her telling me she’s the happiest person in the world, and I’m not so sure.

First published in The Guardian, 4 January 2016

Dying by degrees

Songs don’t have trigger warnings; if they did, they wouldn’t hit us so damn hard. News stories might warn viewers or readers in advance that the content they are about to consume may be graphic but, in art, an R rating or parental advisory sticker shouldn’t protect us from the shock and awe of emotional impact.

Some of the great songs in history cover intensely difficult terrain. Some of them even become fluke hits: Suzanne Vega’s late-’80s classic Luka, a study of child abuse, is one. Archie Roach’s Took The Children Away endures, too, because you didn’t have to be a member of the Stolen Generations to be moved by Roach’s suffering.

About a year ago, I heard a song by Melbourne songwriter Jen Cloher, Hold My Hand, the last song on her most recent album In Blood Memory. It hit me like a truck. The song is a conversation between two old lovers. One asks the other to tell the story of how they first met. He responds:

Well my dear, it was cold,

Shivering, nearly snow

You wore my favourite coat.

But his answer is instantly forgotten, and the conversation, like the song, becomes circular:

Did I dear? I forget,

Did our love begin there?

How did we meet again?

Cloher’s mother, Dorothy Urlich Cloher, died on Christmas Day of 2011. She had been diagnosed with Alzheimer’s disease four years earlier. A distinguished New Zealand academic, her last creative act had been an acclaimed book on the famous Maori warrior chief Hongi Hika.

She had written the book quickly, aware her memory was failing, from her desk overlooking the Hauraki Gulf. Jen would write the bulk of her second album, Hidden Hands, at the same desk while her mother remained “upstairs, staring out to sea, losing herself slowly to the disease”.

In a blog post from 2012, she described the scene confronting her: “Her study, once a hub of academic achievement, was now a mess of scrawled notes to self and handwritten instructions furiously underlined with red pen: ‘1. Turn power on at the wall. 2. Push ON button below desk 3. Wait for computer to load 4. Type in username Dorothy password Nunky.’”

Seeing our own stories reflected through the eyes of others can make our own travails both more real and more bearable, because they take us outside the situation and allow us to view them from a distance. They also allow us to feel.

My mother, Sue, was diagnosed with Alzheimer’s in November 2011, aged 64. The symptoms had been there since at least 2002. That was when she first took leave from her job in the upper levels of the Queensland Health bureaucracy where, in a hideous irony, she worked on devising and implementing aged care policy.

So mum knows more about Alzheimer’s disease than I’ve forgotten. Except that now she’s forgotten she has it, we have to keep explaining to her why she can’t go home. In February, we placed her in long-term care, when her needs became too acute for us to cope with; her house was sold last week to fund her placement.

In the same blog post, Cloher tells the story of a disastrous journey she undertook with her mother to visit her childhood home in the far north of New Zealand, only to see her become disoriented and distressed when she failed to recognise either her relatives or her surroundings. By the middle of their first night away, Cloher felt she had no choice but to take her home.

“The drive back to Auckland was five hours of winding coastal road in the rain and I had moments of feeling insane,” Cloher writes. “Mum stayed awake for the whole journey home, asking every five minutes where we were going and then, upon receiving the explanation, apologising for not being able to remember where we were. ‘What’s wrong with me Jennifer?’ she asked at one point.”

A couple of years ago, aware that opportunities for mum to visit those closest to her were diminishing rapidly, I accompanied her from her home in Brisbane to her old home town, Melbourne, before driving her to visit my father – her ex-husband, with whom she has remained friends – in Wangaratta.

On the plane, unable to comprehend distance or time, she had quickly become confused and frightened. “I didn’t realise how far it was,” she kept saying. “Wouldn’t it have been quicker to drive?”

Later, as we drove the three hours up the Hume Highway, she became more animated as she thought she recognised various landmarks. It felt like being trapped in a scene from Mother And Son. “It all looks exactly as I remembered,” she would exclaim. Seconds later, the fog would descend again: “I have absolutely no idea where we are,” she said crossly.

Love, Cloher concludes in Hold My Hand, is “more than a reward, or a balm we use to soothe.” It’s an ongoing act of supreme patience and loyalty. Alzheimer’s is demanding; grief is a luxury carers can’t often afford as they lurch from one daily crisis to another. It’s only now we know she’s safe that we can begin to let go.

Shortly before the house settled, I took her on a final tour of what had been her home. She lingered in the garden. She’d known the names of everything that she’d once nurtured; now she bent to touch a tiny purple flower, blooming brilliantly, and tearfully asked me what it was. I couldn’t tell her.

Once, she told me she was dying by degrees, as everything that connected her to the world was slowly erased. Sometimes, I think that it’s not until she’s actually gone that we will get our own memories of her back. But, to quote another of Cloher’s songs, she is going, she is not gone. All we can do is remind her we’re still here.

First published in Spectrum (The Age/Sydney Morning Herald), 15 August 2015