Tuesday, May 5, 2015

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.

Tuesday, March 31, 2015

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.

Saturday, March 21, 2015

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.

Monday, February 2, 2015

Shut up and Write

It felt like the first day of school for me this morning. Dressed in my Pilates clothes, I was off to my Shut up and Write group, then to Pilates, then to meet Farmdoc for coffee at our regular coffee place. This was my routine last year but I’ve had a long break over the summer holidays. Like my youngest granddaughters today was my first day back.

Have you heard of Shut up and Write? It’s a worldwide movement that began in San Francisco and is particularly popular amongst academic writers, but works for any kind of writing. The idea is to meet in a cafe with a group of people and a timer and just write. There’s opportunity for socialising but it’s amazing how productive you can be in the company of others.

We use the Pomodoro Technique, which breaks the time up into blocks. In the breaks between blocks you’re not supposed to talk about what you’re working on (though sometimes we do). Most people find that when they return after the short break they can get to a deeper level in their writing. That certainly happens for me.

We meet at 9.15, order coffee, chat for 15 minutes, write for 25 minutes, break for a five minute chat and then write for another 25 minutes. There’s usually a bit more chat at the end, sometimes another 25-minute writing session for those who don’t need to rush off.

We’ve experimented with different venues – a couple of different cafes and a meeting room in a hotel – but the cafĂ© where we meet at the moment suits us best. They know our coffee orders and don’t seem to mind us spending an hour or so taking up precious table space. They’ve also grown used to our bursts of chatter, stretches of silence.

The time we met in a hotel, the young male manager set us up in a room to ourselves around a large boardroom table, but then tried to engage us in conversation about what we were doing when we were clearly wanting to concentrate and write in silence. I couldn’t help but wonder if he’d have been so intrusive and condescending  (‘We’re all working hard here, aren’t we?’) if we’d been a group of men. Just a thought.

The Pomodoro technique works so well for me that I’ve begun trying to use it at home too. In the five minute breaks I get up, maybe do a few stretches, maybe make a cuppa or get a glass of water, maybe do some chores.

These Monday morning Shut up and Write sessions set me up for the writing week. I use them for all sorts of things. This morning I spent the first block writing this. Sometimes I write in my journal. Mostly I work on my novel, which is what I did in my second block.

Conversations are short, we’re different ages and stages and working on all kinds of projects, but we have in common that writing is important to us. When I spot these people around town I feel connected to them but also to the life of the town. It's the beginning for me of a sense of community here in this new place.

Tuesday, March 18, 2014

This Time Last Year

Here are some photos from a year ago, of a dinner our friends Annie and Janet made for us on the bridge at Onemilebridge:

Last Thursday twelve months ago was our last day in our Tasmanian house. We spent the day cleaning as the movers hauled our numbered and catalogued boxes into their truck.

Farmdoc concentrated on the shed while inside the house I moved from room to room, cupboard to cupboard, scrubbing, wiping, dusting. A friend came by to collect one last load for the tip and a few cast offs to distribute. Late in the afternoon the new owners arrived for a last minute inspection and to ask a few questions. The real estate agent who'd brokered the sale came too, bearing a gift. I barely lifted my head from my cleaning.

I can still feel the current of tension that seethed through my body. I was determined to leave the house as clean as possible for its new occupants. I wanted this young couple to have an easy start in their new home.

I think I was also hiding in those cupboards and drawers from the magnitude of the change.

We were leaving a house, a dog, a property, a village and friends. A life we'd built up over a lot of years.

Our decade at Onemilebridge had been important to us in many ways. And now it was over.

That afternoon, after we'd left the house as clean as we could, we drove the long way around to our next-door neighbour's house. For years we'd walked and driven through our sycamore forest or across the paddock to her place, arriving for dinner on our ATV or in gumboots. Now those paddocks and that forest didn't belong to us any more so we arrived as all her visitors did, driving up her front driveway.

We slept that night at her house and spent our last day in Tasmania gazing across at our farm, knowing that those familiar paddocks belonged to someone else now; doing some last minute chores, and having lunch with another friend.

That evening I flew to Melbourne while Farmdoc took the ferry across. Unexpectedly, our friends James and Iris saw us off, so that their dear faces were our last sight of Tasmania.

The morning of the 17th of March, a year ago yesterday, Farmdoc and I drove up the driveway of Daylesford Organics, the farm belonging to our oldest daughter and her family, in time for a welcome breakfast of pancakes and coffee. It was the beginning of the next stage in our lives.

I can feel now all the emotions that belong to that period - sadness, anxiety, fear, excitement - but I couldn't feel them then. I was numb. I think I stayed numb for months while we sorted our belongings and set ourselves up in our rented cottage.

Then, as we began the process of building a new house and a new life in a new community, without my even noticing it I started to thaw out. But that's a story for another time.