Friday, January 15, 2016

Moving Week

Monday was D Day, the day my father would be moving into a nursing home. In the morning I left home early and drove into the city to pick him up. Sue, the lovely woman who had cared for him overnight, had him dressed and ready for me, his bags packed and his flat orderly and neat.

He came along happily, with no idea where we were going, though I’d spoken about it with him several times. I told him his doctors had ordered him to rest. ‘How do they know I need it?’ he asked. ‘I haven’t seen them.’ He was right but I ignored that.

He’d barely slept the night before so he napped in the car. At the front door of the nursing home, a couple bringing along an elderly relative recognised him and he became animated as he remembered who they were. 

A nurse took us to his floor. On the way to his room we passed the activities room where a woman was playing the piano and singing and he stopped to sing along, his face lighting up. I asked him if he preferred to join in while I went to his room and he said he would. When I got back, the sing-along had finished and he was seated at a table in the dining room with a bib around his neck, eating lunch. 

It made me sad that he’d accepted this so easily. Shouldn’t he have thought it wrong, a case of mistaken identity perhaps, that he’d been shepherded to sit amongst a group of strangers with no introduction or explanation? Shouldn’t he at least have been surprised? (Though, to be honest, my dad loves meeting strangers and forging connections with them. It’s one of his favourite pastimes.)

It’s now Friday and I am surprised by how smoothly this transition has gone.

The worst experience we had was after dinner on his first day. I thought I’d get him into bed to make him feel more at home. He was tired, he said.

It began well and he allowed me to take off his shirt and put on his pyjama top. I even managed to get him sitting down and his incontinence pad and pyjama pants in position, ready to pull up. 

At that moment his brain froze and he didn’t recognise the pad.

We went back and forward for about 40 minutes while he studied the thing from all angles and kept saying it was wrong, while I told him that if he stood up I could pull his pants up and he’d see it was right. 

Normally I have endless patience for my dad but this was at the end of a long, anxious day for me. I’d got up early to drive him. I’d spent the day adjusting to the strange sights, sounds and smells of a dementia floor, and hovering over him while I watched for any sign of discomfort. Now I was drained. 

I went looking for a member of staff to help me and then I left. At that point he was naked from the waist down, unbuttoning his pyjama top, but two nurses were there to take over from me.

I drove home sobbing, more from exhaustion than anything else, and slept only fitfully.

The next morning my dad greeted me as he always does, with love and tenderness. He had had breakfast, been showered, shaved and dressed, his leg wounds bandaged, his support stockings pulled up, and he was ready to face the day with the same beautiful, kind, optimistic spirit that has stood him in good stead for the last 97 ½ years.

During the day he participated eagerly in the exercise class, he sang along at the concert. At lunch he slid his foil-wrapped pat of butter across to his neighbour. ‘You have that,’ he told him. It was all he had but he was eager to share it. As we walked around several of the nurses stopped me to tell me they recognised Dad from when they worked at the nursing home where my mother spent her last year. ‘What a wonderful man,’ they said. ‘What a devoted husband.’

Right now as I write this I miss my dad so much. I want to ring him and tell him all about these things. At the same time I feel like I can breathe properly for the first time in many months.

Wednesday, January 6, 2016

Baggage We Pack, Baggage We Carry

I bring up Dad’s small case from the garage, a piece of carry-on luggage, still with its Qantas tag attached.

In their day my parents crisscrossed the globe for business and pleasure. They made friends all over the world. In the 80s Dad was a director of Qantas. One year he and Mum flew on behalf of Qantas to the Boeing factory in Seattle to pick up a new 747-400 plane, ‘The City of Perth’.

Now the case is dusty with disuse. I bang it until the dust rises in a cloud. I pack into it a few pairs of trousers, some shirts and singlets, socks and toiletries. His needs are few these days. My heart aches looking at this case. This is no glamorous trip I’m preparing him for. Next Monday my dad will be checking into a nursing home for a few weeks’ respite. If it’s a success he might stay on.

In one of my dad’s notebooks there is a list of the clothes he used to pack for his overseas trips, all written in his distinctive handwriting with columns alongside for ticks as each item was added to the case. Now he has no idea how to pack or what to take.

The day I made the call to book Dad into the nursing home, I woke in the middle of the night, thinking about my Auntie Helen. When Helen was 20 and her younger brother Harry 18, he was diagnosed with paranoid schizophrenia and their parents, my grandparents, made her take him to Royal Park Psychiatric Hospital to be committed.

Although Harry’s behaviour was unpredictable and frightening and he needed treatment, and it was her parents’ decision not hers, Helen bore the guilt of her brother’s long incarceration for the rest of her life.

My uncle was given the treatment of the day – insulin coma therapy, where large doses of insulin were administered to induce a coma. My chest tightens when I read in the notes that he was very apprehensive about his treatment but his symptoms did abate. He was released but then the symptoms returned and he lived in institutions for the rest of his life. I remember him as a shambling wreck of a man, disheveled, incoherent and toothless.

Whenever I read of abuse and mistreatment in institutions I think of my uncle and wonder what he put up with. It doesn’t take a genius to work out why I am inundated with thoughts of Harry right now.

I decided to try a temporary placement for my dad in a nursing home because I felt he was becoming a prisoner in his own home. Because of his frailty, incontinence and confusion it’s become difficult to take him out of the house. In fact his only outings now are when I take him to the doctor. He does have the occasional visitor, but mostly he sits alone with his carers. Well-fed and well-cared for, but socially isolated. My hope is that a nursing home will provide activities and company.

I’ll be watching carefully. This is a light airy place, not the closed institution my uncle endured, but still I’m worried about this transition. I hope I’m making the right decision, and that it doesn’t worsen his condition. Time will tell, I guess. Meanwhile, I pack his suitcase with an aching heart.

Friday, September 11, 2015

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.

Wednesday, July 8, 2015

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.

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.