Things my father taught me

I look for the good in any situation – the upside, the silver lining. It's a characteristic I inherited from my father. He has always greeted good news with enthusiasm, bad as an opportunity.

The day before yesterday I hugged him and told him I thought things were difficult for him. I was referring in particular to a long and involved toilet session we'd just had, and in general to his life with dementia.

He hugged me back, kissed me and said, 'Don't feel sorry for me.' He didn't explain why I shouldn’t but his voice held its usual strength and expression.

He has no insight. That’s a good thing. In this instance, anyway.

Another bright side is that I’m better off than a dear friend of mine who is living with a husband who lives with Alzheimer’s. That’s a ménage a trois I don’t fancy. And my friend’s husband can be mean these days. My father too sometimes gets angry, but it’s not often and he usually apologises afterwards.

Another good thing is that we can afford to keep Dad in his own home. My brothers and I are spending our future inheritance on caring for our father. I’m not sure what he’d think of that. I think his previous self wouldn’t have wanted it – he’d have wanted to look after us from beyond the grave. But in his current incarnation this is best for him I think.

This is another thing my father taught me. When my mother was suffering from Alzheimer’s he used to say that Lucy Before wouldn’t have liked this but Lucy Now is a different person with different needs.

So now, though sometimes to be honest I feel like I’m drowning, I still look for the upside of this situation. Mostly, the worst times are caused not by Dad but by some of the people around me: The Difficult Aunt, The Shrieking Carer. Or The Kibitzer, the person with the great ideas for things I can do. Not that they can do, that I can do. Oh, thanks for that – so helpful, so kind.

OK, tantrum over. Back to looking for the good side, the silver lining, the opportunity. When my head is above water, when I’m spending time with my dad, how do I feel?

At those times it’s like I have become a sack of emotions, most of which I can’t identify. There’s love of course, and pity, guilt and sadness, my old friend anger and, tucked away here in the corner what do I find but gratitude, so hidden that I nearly missed it. Gratitude for this opportunity for closeness and devotion and growth.  For our bubble of privilege in a war-afflicted world. For this intensity of feeling that cracks me open the way tree roots crack a concrete path.

We sit at the kitchen table, my father and I and a guest who has called in. Around us the world spins at a fantastic rate, but here at its centre a father tells his daughter and a visitor a story that meanders and turns back on itself and now is about one thing and now about another.

The listeners sit nodding, smiling, agreeing. ‘Yes,’ the guest says, sipping his tea.

The story flows on and on, carrying him back to when he met his wife, to when his own father was alive. There are billabongs of words cut off from all understanding, torrents that only he can follow.

‘Yes,’ his daughter says. ‘I know.’ And she does.

Greed Comes Before a Fall

The second time Farmdoc and I walked Tasmania's World Heritage Overland Track, we decided to start at Lake St Clair, so that watching Cradle Mountain loom larger would be the culmination of our journey. Most through-walkers begin at Cradle Mountain, and in fact in-season these days it’s mandatory, but we’d walked it in that direction the first time, and we thought it’d be fun to do it in reverse.

We planned to take five days and to camp if the huts were full, so our packs were heavy. I carried the scroggin, a generous bag of dried fruit and nuts, in a separate compartment my rucksack has at the very top. I wanted to be able to reach it whenever I felt peckish.

On the first day, within the first hour in fact, I tripped on an exposed tree root that had snaked across the path. I was unbalanced, carrying that big pack, and I fell. I put out my hands and caught myself, but just when I was sure I was done falling, the pouch at the top of my pack punched me in the back of the head, forcing my face down onto the track and smacking my nose into the ground. It seemed to happen in slow motion, as though to underline how out of my control it was.

I wasn’t hurt, except for my pride and a cut on my nose. I laughed at myself, Farmdoc helped me up, and we kept walking.

We were walking against the flow of hikers so we were meeting new people all the time, and whenever we stopped someone would ask me how I'd acquired that fresh wound on my face. If they didn’t speak English they’d just point. Sometimes they’d say, ‘Leech?’ and point. I’d shake my head and tell them the story – or mime it.

The last day of our walk was cold and rainy, Cradle Mountain shrouded in mist. Instead of seeing the mountain as we approached, we passed without even knowing it was there. Besides, it was so cold we feared hypothermia if we stopped too long to look.

We walked out of the park, my nose just about healed of its mark of shame, and took a bus back to civilization.

I’m not sure why I feel the need to tell this story now. But I can’t get the memory out of my mind. That day at the beginning of the Overland Track we were alongside Lake St Clair, the water glinting at us through the trees. The air was cold and crisp and sweet with unseen plants and with the promise of the five-day walk ahead through button grass plains and myrtle forests. And then I was pushed into the mud, face down, felled by my own backpack.

I don’t know when I’ve felt more fully human.

Medication Zero, Dad Three

First, sleeping tablets failed. Then, desperate to find something to calm my father’s nighttime agitation, his psychogeriatrician prescribed an antipsychotic. That failed too. Next came an antidepressant, Avanza.

Avanza didn’t work. It didn’t help Dad sleep but made him so agitated and confused that several times he said he wished he were dead. All of that on only one small dose. One tablet. Even the next day he sat at the kitchen table with his shirt off, his hair all over the place, completely incoherent.

So many people described how Avanza helped them to sleep that a week later I tried again with a fraction of a pill. The confusion wasn’t as bad but it was definitely worse than usual and there was no improvement in his sleep.

Now we’d tried three different commonly used medications. None of them had worked and the side effects had been terrible. When I rang the doctor to report this he said that Dad would have to be admitted to hospital if we wanted to try anything else. That felt like a last resort to me. We retired to our corners.

In a way I was relieved. I dreaded seeing Dad drugged into submission. But still his nights were difficult. He wandered his apartment, searching for something he couldn’t name, positive that he should be somewhere, doing something important though he couldn’t for the life of him work out what that was.

He opened drawers, took things out – photographs, old letters, cards from him to Mum, from Mum to him, condolence cards on Mum’s death, business cards, receipts.  He’d put some of these inside the container on his walking frame, along with a roll or two of toilet paper, a couple of serviettes, wads of tissues. Later he’d take things out of there and leave them all over the apartment. Then he’d go searching for the things he’d hidden from himself.

This kept him busy and he didn’t have anything else to do or anywhere else to be, but it also distressed him, and I hated to see that. I decided to see how he went without medication for the moment, with the understanding that he just wasn’t going to sleep at night.

Meanwhile, my father’s dementia worsened. 

I called in to see him one morning. As usual he was so happy to see me. His hazel eyes shone and his face crinkled into a wide, welcoming smile. He kissed me on both cheeks. ‘Oh,’ he exclaimed with delight.

‘Dad,’ I said. ‘Why don’t you get dressed and come into the kitchen and have a cup of tea with me.’

He nodded. He was in the bathroom, bending over the toilet, stark naked, a bar of soap in his hand. ‘I’m doing exactly that,’ he said.

He reached his hands into the toilet and began to wash them.

‘Here, Dad,’ I said. ‘This is the toilet.’ I put the seat down so he might see it more clearly. ‘This is the basin.’ I turned on the tap.

Once he saw the running water he realised that was what he’d been looking for so he shifted his focus, began to wash his hands there.

I kissed him again. ‘Get dressed, Dad,’ I repeated. ‘Come into the kitchen and have a cup of tea with me.’

‘That’s what I’m definitely doing,’ he said. ‘I just need to do this first.’ He held his hands under the tap and began to soap them.

When my mother washed her hands in the toilet I thought it was the saddest thing I’d ever seen. I described it that way in my memoir of her Alzheimer's. That’s not how it felt to me this time. I’m not sure why. Maybe because I’ve seen it before. Maybe because I understand the confusion – water, washing. It makes sense to me.

What really bothered me was his lack of self-consciousness about his nakedness in front of me. This is not about my sensibilities; I wasn't the slightest bit embarrassed. I think he has a beautiful body still – well-built and strong despite being nearly a century old – but my father is an old-fashioned gentleman. A couple of times in years gone by I caught him in his drooping y fronts and he ran for cover, embarrassed. Now here he is going about his business completely naked with no awareness at all.

Slowly he got himself dressed, item by item, and somehow with his clothes he became more himself. He’d buttoned his shirt crookedly but otherwise he looked perfect. ‘Does my hair look alright?’ he asked me.

It did, I reassured him. ‘You look wonderful.’ He smiled. He had no idea he’d been naked in front of his adult daughter.

For now my father and I move forward like this: no dementia medication, gradually worsening confusion and, judging by his swollen ankles, worsening heart failure, taking each day as it comes, still loving each other, still kind to each other, still enjoying each other’s company.

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.