One Step Forward Two Steps Back

Thank you to everyone for your kind comments, texts and emails. They made me feel less alone in this journey into the unknown that I am taking.

I was so hopeful when I took Dad to that psychogeriatrician. I was sure my worries were over. I imagined a kindly magician who would take all responsibility out of my hands. He’d smile at me as he pulled a rabbit from his hat, saw my father in half and put him back together properly. I’d thank him, my father and I would sweep from the room and go out for coffee.

Instead I got a prescription for risperidone, an antipsychotic drug. My reading had told me that this should be a last resort not the first. But I hoped – oh how I hoped – that these pills would contain the magic we so badly needed. So I ignored these doubts and my obedient, trusting dad began taking them.

There was no magic. Dad’s sleep was worse than ever and he was more confused at night than he had been, wandering around the apartment, emptying drawers, looking for things he couldn’t name.

And the side effects, like wicked fairies gatecrashing the ball, came bringing their unwelcome gifts: stiff legs that made walking even more difficult than usual, tremors in his hands that sloshed his tea in its mug. And worst of all incessant meaningless talk that poured out of him, accompanied by greater confusion than before.

It tore my heart to watch him struggle with thoughts that he couldn’t marshall, a world gone strange and to know it was my doing, if not my fault. I stroked his white hair, kissed his cheeks, while the knowledge of my complicity in his situation twisted in my belly.

A week after my father began the drug I rang the doctor and we took him off it. We were back where we started.

This evening he’ll begin taking Avanza, an antidepressant that apparently helps with sleeping. 

I don’t hope for magic any more. I know magic tricks are only sleight of hand. I have my fingers crossed that this medication will grant him a few hours sleep each night. That would be something.

Apple. Table. Flag.

I've been here before - sitting in a psychogeriatrician's consulting room with a parent. The last time was with my mother while my father rode shotgun. This time it's my father who is in the hot seat while I have taken on his role as protector/interpreter.

I remember so clearly that day with my mother. 'Do you know what this is?' the doctor asked her, showing her his watch. She shook her head. 'And this?' he held up a pen. 'Do you know what this is for?' She didn't. He should have asked her if she knew who I was. That was a question she could have answered. That day at least. She comforted me there in the consulting room when I cried at her plight.

Sitting beside my father in the specialist's rooms I don't cry. I save my tears until later. Right now I am in competent mode, paying attention to my father's feelings and to what we need from this doctor.

The doctor asks us what we have come for, how he can help us. My father doesn't answer; he has no idea. He's here because he trusts me and I have brought him. I tell the doctor that my father has memory problems and that he barely sleeps at night, getting up, wandering around, confused and disoriented.

My father stares at me, his forehead furrowed in disbelief. 'I sleep very well,' he says. 'And I have a very good memory. I never forget anything.' My father is always loving and kind to me so he's not going to be rude but he's clearly puzzled and even shocked at my words.

'You don't mind if I test your memory?' the doctor asks.

'Not at all.' Actually there is some more conversation here and my father speaks slowly but articulately. Maybe he's not as bad as I feared. Maybe he's right and I'm wrong.

The doctor opens a printed test booklet. 'What's the date today?' he asks.

Dad concentrates but can't come up with an answer. This is not too bad. He's retired and spends most days at home. There's no reason for him to keep track of the exact date.

'That's fine. How about the month?'

Again Dad wracks his brain but can't find the answer. This is worse. It's easy to lose track of a day, but a whole month is a different dimension of forgetfulness.

'Now,' the doctor says, 'I'm going to say three words and ask you to remember them. Is that OK?'

My father nods. He's confident he'll be able to do this.

'Apple. Table. Flag.'

These are easy words. He'll remember them with no difficulty, especially because his oldest granddaughter grows apples on her organic farm. I say the words to myself, committing them to my own memory.

'Could you spell the word world backwards for me?' the doctor asks.

This is hard but Dad can't even manage one letter. He doesn't even try.

Now we're back to those words. Apple. Table. Flag. Does he remember them?

My father shakes his head. He doesn't say that one was a type of fruit and one was a piece of furniture, that they're on the tip of his tongue. He has no idea at all.

There are other tests but he fails them all. After a while the doctor says to me that he won't continue with the test; there's no point. It would only be upsetting.

We don't discuss the diagnosis. It's clear my father is suffering from dementia.

The doctor writes a prescription for a low dose of an anti psychotic to mitigate the sundowner effect that is common amongst dementia sufferers and that has my father confused and agitated in the late afternoon, and to help him sleep at night. At this point my father has fallen asleep in his chair.

We make another appointment. The doctor wants to give Dad some blood tests and see how he's going on the medication. Dad offers his hand, thanks the doctor who has been gentle and kind, and we leave.

At home I google the medication. Its side effects can include weight gain, dry mouth, drowsiness and even stroke or sudden death.

This is not what I want for my father but at the moment he dozes on and off all day and virtually doesn't sleep at all during the night. He gets agitated and aggressive with his carers and even with my older brother whom he adores. His behaviour is hard on him and even harder on his carers.

But I still feel I have failed him, that I should be able to find a way to manage him without resorting to these drugs.

And worse, I feel that I have caused the dementia. I took him to this doctor. It's because of me that he had these tests, which have led to a diagnosis, exposed his weakness to the world. If I hadn't taken him it wouldn't be true. He wouldn't have dementia. He'd just be old.

I know that what I have done is the responsible thing, that in fact I should have done it earlier. But in my heart I feel guilty of taking a lamb to the slaughter.

It's too early to tell how well the medication will work for my father. But the best I can expect is that he is calmer and sleeps better at night. That he's more 'manageable'. I feel cruel and even evil, though I don't know what else I can do.

There'll be more assessments and blood tests and I'm looking into respite care for a short period while two of his main carers are away, though he may not agree to go.

I just wish I could do better. I just wish I knew how to do this better. That's all.

Feast and Famine

There is an interesting series of human interest videos on the ABC Northern Tasmania website. The overall topic is 'Change' but this has been interpreted in many ways.

I provided the producer, Richard Pree, with some scanned photos from our family albums, and a recording of me reading a couple of extracts from my book. He then put these together to produce a very moving short video.

The piece begins with a kiss. My father was in the Air Force, transferred from his home state of Western Australia to Melbourne, when he met a beautiful girl. My mother was 16 when they met and 18 when they married.

While I was looking through the albums I came across a photo of my mother at a party with the television star Graham Kennedy. Look how beautiful she is.

The piece ends with another kiss. This time my father is 90 and my mother 84. She has only months to live, but their love burns as brightly as it did at their first embrace. Even her Alzheimer's Disease cannot quench its flame.

Sandwich Generation

Yesterday I went to a friend’s sixtieth birthday party. Dorothy lives in England but was in Melbourne visiting her mother at just the right time for us to celebrate with her. I sat at a table of old school friends and some people I didn’t know.

We canvassed our children’s lives quickly. Seems at our age people have grown past the showing off stage, which is nice. There was a detour to talk about grandchildren and how adorable they are.

Then we moved on to the main topic of conversation – our aging parents. How well are they? How old are they? Do they live independently? Are they in a home? Do they have dementia? How often do you visit? Every new person who joined the group had a story to tell.

I remember when I was a young mother how affirming it felt to meet someone else at the same stage, someone else who was getting up at night, someone else lost in the wonder and awfulness of it all. Now here I am again, bonding with strangers over horror stories, only this time about our parents.