Tag: dementia

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Lost Child

murphy nursing home

Murphy sits at Joan’s feet. Her hand finds his head and rests atop. Her fingers find their way through wiry fur to the bony skull beneath to massage his head. Her fingers are smooth and white. The fingers of an old woman whose hands no longer do work. Sometimes they wrap around a teacup, other times they rest on her lap. Her skin like latex. She once worked on the bodies of others as a physiotherapist. She would have touched a lot of skin. Kneaded many knots from muscles. Now she walks the corridors and attends any excursion she can. Anything to get out. The rest of the time she sits amongst the open-mouthed, the drowsy and the drooly.

She recognises us each time we visit, her face lights up, and she does not appear to have memory loss. The staff tell me she does. She cannot recall how long she has lived here. Today I find her standing outside one of the centre’s doors on a path through a manicured garden. Her hands come to her face that is breaking. I ask her, are you okay Joan, when I see her broken face. No I am not. I am trapped. I want to get away from here, she says, standing on the path and looking around, as if for the exit that is only metres in front of her. She has clear snot running from her nose and I say I will get you a tissue. No one wants to be without a hanky.

She takes it and holds it to her face. Murphy and I will walk with you, I say. Come sit in the garden. We sit. I offer suggestions as to things she might do. Others are inside playing Bingo after all. She is not the game-playing type. What about crafts or puzzles. Looking for ways to fill her time seems like asking her to pour sand into a bottle and then pour it out again. What would make you happy Joan? A dog.

Meanwhile a gardener is nearby and despite the heat is weeding, head down. Joan throws a question her way about her latest seedlings but the gardener doesn’t hear and so doesn’t answer. She is trying to make light of her tears now. I am sorry for being a bother. Joan tries again to question the gardener, and still she is not heard. She is an old unseen unheard woman, sitting. Beige and blending into paving. She is searching for conversation, for connection. She says she wishes she knew where the family of her dead husband were. Not her children, but still. She loved them, but they live far away and now do not visit. I don’t know where they are. Outside the gates somewhere. Her face is pained again like a small child lost. Gretel in the forest.

I wonder if audio books might be nice or even just the radio. There are so many interesting things on the radio, Joan. Like interesting matters. I don’t know how to use the buttons, she confesses. Come Murphy, sit here with Joan, and let her rest her hand on your head. Let her feel your warmth as giving and trusting as any human hand. Like family. He moves his head under her hand, shifts just a little to let her know she can leave it there as long as she likes. Good work Murphy.

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Doggy Dementia

winter

Just the other day I euthanised a pooch whose owner described him as having doggy dementia. She came in with him clutched to her. He was a sixteen-year-old little white fluffy who spent his days wandering the house, soiling himself and the floor, refusing to let anyone rid his coat of the tangled matts and deteriorating into a bundle of anxious quivering. She didn’t care that he stunk. She did care that he was in pain. If she could have admitted him to a nursing home for dogs maybe she would have. Maybe not. Recently she had had to go away and she’d left him with her sister. He’d not slept for three days.

Now I am reading Rebecca Mead’s absorbing article in The New Yorker about the advanced-dementia care at Beatitudes and I can’t help but think of the little white fluffy. Dogs get dementia too.

The director of education and research, Tena Alonzo, at the unusual and forward-thinking nursing home says, “All behaviour is communication.” With dogs it is even more so, since we never have a verbal language in common to begin with. We cannot ask them how they feel. To be a vet you must watch and listen. To know dogs is to observe and interpret their body language. To understand the demented human, body language needs to be read too. Alonzo gets the staff to practice interpreting non-verbal queues on each other, by having another staff member instruct them in a foreign language. She also gets the staff to brush one another’s teeth and to spoon feed each other – this is how you come to understand what it feels like to be the resident. The dedicated take to wearing adult diapers – to get a real sense of what life might be like for a dementia sufferer.

Alonzo says, “When you have dementia, we can’t change the way you think, but we can change the way you feel.” This might be true for dogs in distress too. We could always do with a little more empathy.

She describes how a black square of carpet at the entrance to the lift might stop a demented patient entering, since people with dementia have been shown to be unwilling to step onto such a black space, imagining it to be a hole. Reading this I thought – how like the cattle grid at the farm gate. Perhaps as we slide into dementia we are becoming more akin to animals. When Alonzo talks about her own old age – she says, “when I have dementia” knowing that cognitive decline comes to nearly all of us. Most of us will go there.

She says, “one of the things that create comfort for people who have trouble thinking is space. If you are too blocked in you feel frightened.” Think again of the animal that cage guards. Lunging and growling at anyone coming near, but as soon as the gate is opened and freedom is sensed, the animal can be handled.

When a patient can’t seemed to be helped with pain killers and distractions Alonzo says, “we’re going to try chocolate.” Hershey’s Kisses are a mainstay at the nursing home, because “it’s hard to feel very bad when there’s something tasty in your mouth.” We manipulate the behaviour of dogs with food rewards and lures too. Trainers and vets have long used the momentary pleasure of food to minimise distress. Keep feeding as nails are trimmed. Offer a popsicle coated in peanut butter to be licked while a coat is brushed. We can change a dog’s perception of something it is frightened of by repeated pairings of a food reward with the thing that is the dog’s monster. All the puppies I see for vaccination are injected, mostly without ever feeling the needle, as long as they are distracted by some tasty dog treat. As patients slip into deeper dementia it is as if the primitive structures of the brain take over. There is pleasure and pain. There is fear and anger. There is flight and fight. These core parts of the brain are similar across all animals so that in the end, when we are old and have lost our cognitive function, we are not so different from a frightened dog. Or horse, or cow. We may no longer be able to operate on a high intellectual level, but we still feel. Emotion lives on, sometimes stronger, unchecked, unleashed. Patients are described as “resisting care” when really they are like the dogs who are objecting to being restrained for grooming – they just want the man-handling to stop. In the nursing home the supply of pleasurable food helps avoid conflicts and makes people feel good, just as the only thing that could quell the white fluffy’s pacing was roast chicken from the corner store.

I think about how vets have learnt a lot from paediatric dentists. Today in the dentist’s there is no fear. It doesn’t even smell the same. Fuzzy green toys hang from the lights. Toys are handed out after the clean is done. The child’s dentist is so very different from what he was like when we were little. No white coat. Now they know how to distract and comfort rather than force and bully. The nursing home is changing too. It is no longer acceptable to bomb patients with antipsychotics (developed for schizophrenia) just to make them easier to handle for staff. Rather than becoming obtunded on Haloperidol, something as simple as Panadol may be all the patient needs to feel less pain and become more cooperative. It is better to lower the bed, so there is less harm in falling, than restrain people to their mattress. People need to maintain dignity, just as animals need to feel calm. It’s all about the kind of handling. You can take them gently by the hand and lead them or you can put a collar on them and pull. Which one do you do?

Just as humans are afflicted with dementia, our pets also suffer from cognitive decline. They seem to do the same things as our human relatives do. They mix day and night. Sundowning for dogs.They wander the corridors and holler for someone to help them. They don’t know where home is. They stand in corners. They forget who their relations are. They hear non-existent noises and bark at them. They are in pain.

Seeing others. Feeling like others. When we work well, at whatever we do, isn’t it because we recognise the emotion the other is feeling? Be it animal, be it human. We aren’t as different from other animals as some humans would like to think. Connectedness. When we strive to understand what another is feeling we make great steps to knowing ourselves.

 

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Doing Tax…

My tax return is late. Horrendously so. And so the later it gets the more I want to put it off. My desk is a mountain of papers and receipts. Looking through the bank statements that I have printed off the computer I am seeing entries that remind me of a year ago. In my head I have trouble trying to recall whether my father was alive before or after the end of the financial year. And does it matter? I have my father’s deceased estate stuff to consider too. I have a file of his papers where he made notations in a demented way on bills. Squiggly question marks near amounts owing. PAID writ-large with a flourish beneath it. Success at the post office. Everything paid through the post office. The old person’s only way to pay.

I imagine him in the queue, socks to his knees, pants too high. He is an impatient man and the queue bothers him. Waiting has never been easy for him. Like Blackboard in Mr squiggle. Muttering beneath his breath Hurry up. Not that he has other errands to run on a shopping day. This is the big one. The paying of bills. Finally at the counter, he softens because he needs the assistant’s help. He could easily be screwed. But they know him. He has been coming since the post office became the place where old people pay their bills. When they no longer sent cheques.

He forgets to pay the HBF bill and the health insurance is unpaid. This means that when my mother ends up in hospital because of a turn (she simply sank to the floor like a puppet with its strings cut in the very same Post Office) and she is asked whether she has private insurance and she answers yes and they divert her to the private hospital, she is turned around again because they are Not Financial. When I attempt to sort this fiasco out, over the phone, the insurance company will not tell me how much they owe because of privacy concerns. When I tell the I am a day away, down South on holidays, they are unmoved. I just want to pay their bill with my credit card over the phone but they cannot release the information I need.

My father is driving to the wrong hospital to visit my mother. He is eating pan-fried fish with sliced banana for dinner. The neighbours are looking in on him. He is still in the garden till the sun is going down.

My mother yo-yos between the hospitals till her insurance is sorted out. The private hospital won’t take her if she’s not insured and the public hospital wants her to go to the private hospital if she has insurance as she claims to have. Daddy’s been a member for fifty years, she says.

I hate the insurance company and tell them so when they inquire at the end of our heated phone conversation as to how well they have helped me today. They promise to pass on my complaint but I never hear from them. I hate you, do you hear me. Hate you.

Back in the city, I realise it is time to be their nominee and take in the form to prove I am their enduring power of attorney. Child becomes Parent.

While my mother is in the hospital the neighbours begin a roster system whereby the evening meals are delivered to my father. He is eating well and loves the attention. Evey afternoon he drives to see her. On one of these occasions he rams another car in the hospital car park but ignores it. A bystander sees the white Subaru Forrester crawl away and takes his number down. He gives it to the owner of the damaged car. Later Dad gets a summons about the accident and it becomes clear that he no longer even has a current licence. It too has been unpaid.

Sometimes he stood in the queue and then when he neared the front of it he turned around and walked out.

Now I am doing his tax. In the blue folder with all its pockets I push out the rectangles of paper with his handwriting on them and replace them with my own headings. I notice the poor spelling. The new labels make more sense to me. The last folder has a pocket I label Death. In it I put his funeral bill and wonder if he can tax deduct it. I think of the more expensive Enviro coffin we got him, knowing he was a believer in recycling. But a tax deduction; now that would really please him.

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A Nursing Home Christmas

They call it an Aged Care facility these days but in my mind it is still a nursing home. It is nicer than the homes my mother took us to when, as children, we were visiting elderly relatives. Two of the old ladies we saw were called Wink and Tess. Now I drag my own boy. I can’t remember being as unpleased as he is at this. I think I was in awe of the wizened. The smells, that so bother him, did not me. He races past the cloth bins of soiled laundry in the corridors, their colour coding signalling their degree of foulness. He instructs me, “Quick Mum, don’t breathe.”

I remember a woman who used to cry, while asking repeatedly, “Are you my mother? Are you my mother?” To us children this seemed particularly strange. Comical and sad at the same time. We would poke one another in the ribs as we passed her and say, “Are you her mother?”

We peeked into rooms as we followed my mother through the hallways. She strode ahead, her stockinged legs and half inch heeled shoes, marching matron like down the cloppity clop corridors, looking for Wink’s room. I could see the shape of thin people under blankets. People who no longer ate, who barely took a sip of fluid. Sinking into their beds. Like the mattress was some kind of quick sand determined to engulf them. Returning them to the earth.

Now at my mother’s home they hold a Christmas party where children from the catholic primary school next door come to sing carols. The OT’s are particularly enthusiastic; they trim a huge tree and a stuffed, but still thin, Santa sits on a couch at the front door like a resident waiting for a taxi. They even have an Elvis impersonator after everyone has pulled their bons bons. Vol au vents with prawns. Nurses wear Santa hats and have tinsel in their hair. Some hang christmas baubles from their ear lobes.

But still.

The corridors are carpeted, not squeaky vinyl like the Home Of Peace where we visited as children. Residents have their own rooms with bathrooms and flat screen TVs. The rooms are personalised with pictures and paintings from home. Some have brought with them a favourite armchair. My mother piles hers with New Ideas and Woman’s Days. She has her writing desk, although she no longer sits at it.

At my mother’s nursing home the demented are the same as when we were children. Asking strangers, “Have you came to take me home?” “Where am I?” “Are you my mother?”

She gets cards from well wishers, some who have not caught up on the news that her husband has passed away, even though it was six months ago. Happy Christmas June and Alex. Always June and Alex, for all those years. Now it is only June. Last Christmas he was in hospital, the first of a series of trips there. He had lost sense of time and it mattered not that it was Christmas to him. The surgeon said at least they will give you a glass of wine with your meal.

We have a Christmas ornament that makes me think of him – three candles that when lit make three angels spin and chime two bells. The ornament only ever came out on Christmas and was lit for a short time during lunch because the reality of the chiming bells was not as peaceful or beautiful as the thought of them. Still.

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Cut up RAC card

I find my Dad’s wallet amongst some things I bring home from the nursing home. How he treasured his wallet. How frustrated he would become by not having it, in the end. No matter that he didn’t need it. I had his cards, his pension number, his medicare number. But he liked to have it with him. A reminder of being a grown up. And when he was still at home how angry he would become when he failed to locate it once again. Inside I find the card for the Hearing Aid agency with the small ripped piece of paper stuck to its rear with his PIN number on it. I knew it was here and would have to remind him of its whereabouts when he queued at the bank. Once I was told off by a cashier for knowing such private information as he rifled through the wallet not remembering where the damned thing was.

I find the RAC card with its member since 1958 stamped on it. I cut up the cards in case. In case of what? I cut between the gaps in the surname, through the account numbers. In case. I find his last Slikpik  lotto dated 17/4/2010, the last time he independently went to the newsagent and had the presence of mind to buy one. It cost him $7.20. I will get it checked just in case. I find his appointment card for the blood collection agency.

1976. Holden Kingswood. Brown. The car won’t start. My dad is cursing. The bonnet is up. Something about spark plugs and carburettors. The RAC man is called. Down the driveway, blue King Gees. He’s a real ocker. He makes fun of my father I sense. Something about his accent or his high waisted trousers. Or maybe just because my Dad’s impatient and doesn’t know how to hide it. But how acutely you feel it when you’re a teenager. Like you have a radar for how others judge your family. If only he didn’t have to do his belt up so tight.

The wallet can be discarded. It is vinyl. It has no scent. No wonderful feel. I am throwing things away.

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This Knife Ain’t Sharp Enough

My Dad is back in the hospital. His remaining penis is like a bloated poorly-cooked pork sausage.

I am reminded of a neighbour beyond the pickets whose favourite children’s party game was called pork sausage. The children would be in a line. No smiling, laughing, giggling allowed. He would go along the line and point and grope you on the body or the face and in a heavy Welsh accent say, What’s that there? And your answer had to be pork sausage but you weren’t allowed to laugh. Laugh and you were out. I was good at this game. It seemed the saying of pork sausage was hilarious to most small children. And when coupled with a big bellied man pointing and fondling your ear lobe, and asking you what it was, and having to say it was something it wasn’t, something as ridiculous as pork sausage, it was very nearly impossible. But I could do it every time. He could pinch my nose, my ears, grapple with a roll of tummy, fiddle my fingers and I could say it straight-faced. Pork sausage, Mr Elliot. Till I was the last kid standing. Grim-faced. Thinking, not funny Mr Elliot.

Winning this game did not endear you to adults. They wanted to see kids giggling uncontrollably. They loved to tickle you till tears were welling in your eyes. A kid that didn’t find pork sausage funny was a kid with no sense of humour.

This is what we are here for; to exam the pork sausage and decide its fate. No giggles. Not funny. The nursing home GP thinks an area of tumour recurrence can be seen near the urethral opening and he has organised Dad to go back to the private hospital to be seen by the surgeon who did the partial penectomy in the first place.

The ambulance is transporting him. I meet them at the doctor’s rooms but there has been a mix up. He is to be admitted and the consultant will see him on the ward when he has finished his appointments.

In the ward they have him down for 2pm. We have nine. But they find him a room. No 13. I sit talking to him but he has his head turned away and is not answering me. I go to the other side of the bed and then he realises it is me.

Oh Nicole, what a surprise. I explain he is in the hospital to have his penis looked at. Because it is sore isn’t it Dad? That’s why we are doing this.

He starts out just a little old man, a little confused. After six hours he no longer knows what he is, where he is and he’s as mad as a cut snake.

A nurse comes in and wants to take a peek downstairs. He is saying no more no more but she manages a look and with her ultrasound measures his bladder volume. It has 138mls in it and he has wet his pad in his pants. Reluctantly I call it a nappy.

He has bitten his lip or his tongue in the transport and has some blood in his mouth. I ask him about it but he doesn’t seem aware of it. I get him a choc milk and he drinks it with a straw.

He starts talking about leaving and all the things he must do to leave. He will need a bus on the highway. But where is he going to? What is his home address?

He is trying to swing his legs out of the bed and attempting to sit up. He is easy to push back down. And when I do he has to start his effort all over again. It weakens and tires him.

I wait till he is nearly up then down I push him. I think he probably doesn’t know I have done this to him half a dozen times. Each time I stop him getting up he is surprised I have stopped him.

When he is nearly upright I stop him again and he says, Oh no oh no. Exasperated. He leans back down in the bed. You have to stay Dad to see the doctor. Over and over again I say it.

I am driving myself nuts.

Oh I love you darling, but I have to go. I have so much to do at home.

He asks me why. Why must we stay for the doctor? I have him booked next week and he gives me a wink. That’s the way the cookie crumbles.

I have a lot to do at home. The dogs and cats need to be fed.

No time for yakkity yak.

He says I am trying to hoodwink him. He says the nurse is part of the secret service. Everyone is keeping stuff from him. Like information. Like addresses and where he is.

They move his bed from room 13 down the corridor close to the nurses’ station and he falls asleep. He has his glasses on. When I tried to take them off he objected. You want to hoodwink me. You know I can’t go without my glasses. Why have you taken my socks and shoes off? I can’t go without my socks.

When he wakes up he is gripping the side bar of the bed like he thinks he is moving or falling.

Dad. Dad you’re okay. I try and peel his fingers from the side bar. But he is hanging on.

No, he says. He has woken up different. More stubborn. Ready to fight.

He has woken up in another world. He starts talking about straw. You need to move the straw. Give me the pliers. You have to dig it there. When I try and move his fingers he gets  snarly with me.

Okay okay. But you don’t look comfortable.

Don’t take stuff without asking.

I can recognise the consultant’s voice outside. He’s on the ward. I feel relief to know Dad will be seen soon. He is slipping into further delusion and the longer it takes the harder it will be. I hear the consultant talking to nurses and then his voice fades as he heads into another room.

I poke my head out. Only nurses. A plate of cream cupcakes on their bench top.

I tell a nurse I am worried that I won’t see the urologist. Paranoia catching. Don’t let him skip us.

No no your Dad’s on the list.

The consultant’s voice wafts in and out of ear shot.

Dad is talking gibberish. Ellen on the TV.

The urologist enters the room smiling. He has beautiful teeth and a polished head.

Righto Alex. Do you remember me? I am your doctor who did your surgery. The nursing home wants me to have a look. They’re a bit worried about it. Despite Dad’s demented state the urologist talks to him like he is compose mentis.

I wonder why he bothers. Perhaps it is for my benefit. Maybe he thinks something might get through. When I tell him about the past month and how I am struggling with it all, he tells me how when his grandmother was dying he would gets calls from his mother all the time telling him today would be the day and how badly the grandmother was faring. In the end he said to his mother don’t call me till she’s dead. By the time she finally died he had done all his grieving, it was simply a relief. I think he is trying to empathise with me. But I am like his mother. I am the one who is doing it. I can’t say don’t tell me for there is no one else to do this.

Gloves snap on. He tries to move him in the bed; to get him to let go of the rails. But Dad is resistant and starts telling him to get off him.

You don’t ask, you just do.

Dad is shouting and the doctor pulls back. But Dad keeps on shouting. Swinging fists on skinny arms.

We might give him something to settle him before we look or else it’ll come to blows.

Two haloperidol, he tells the nurse.

I’ll be back. Gloves snap off.

Dad tells the nurse to go to. He is pointing at the door. Get out. Get out. You have no manners. Ask. You should ask.

Dad you need to take the tablets. She is proffering them close to his tongue and I am fearful she will get bitten. It’s feeling very veterinary. I am thinking of chemical restraint, muzzles. When faced with an aggressive dog we get the owner to help. Like the nurse is using me. Do you think you can get him to take them? I am like the client who stands back and drops the lead when the dog begins to growl. I don’t think I can do it, I say. But it is my dog. I am required to try.

When the owner gives up in the vet clinic the dog is put in a cage and the pole needle is used. As the dog is cornered the needle advances on it through the bars and a quick hard jab to the thigh muscles is attempted. Hopefully the needle doesn’t snap off. Hopefully the whole dose gets got. Victory is a dog that can’t curl its lip, can barely lift its head.

I suggest a needle for my Dad. The nurse thinks this might be just as hard. We persist with the little white tablets. Dad put your tongue out.

Don’t touch my nose, he shouts.

I try and give him the tablet so he can put it in his mouth himself. Perhaps it is control he wants. Trying to get him to take them from my fingers he is uncoordinated and we are not getting anywhere. Our fingers are like polar opposites on a magnet and he can’t take the tablet from me.

She gets a mini tub of ice-cream and I put the tablet in a teaspoon of vanilla. Here you go Dad. We get them down.

It has taken 30 minutes.

He is not very sedated when the doctor comes back. He is just as angry. He starts swearing. Fucking hell.

The nurse tells me not to worry. He’s not responsible. He’s not your Dad when he’s like this. Her being nice to me, tips me over and I am crying.

I am trying not to cry in front of Dad thinking this might upset him more but it doesn’t seems to effect him. He is oblivious of my noisy nose blows into paper towel. He has forgotten about me, who I am even. Why are you staring at me? he says.

The doctor tries to get him to pull down his pants but he can’t do it.

Okay Alex lift your bottom. Nothing. So in the end he yanks them. I am placating. Its Okay Dad.

You’re cruel to an old man.

Yes Dad I know.

He’s not that strong. You hold his wrists, can you? the doctor says to me. I am the client who digs in. Who says yes I can hold him, my writhing rabid dog, while you trim his nails.

Okay. I will. I grip them. They are thin. I push them down so the doctor can get a look. Dad is swearing and cursing me.

Get off me. Get off me. You brute.

The doctor is pawing down there.

He might as well be sawing it off for all the screaming Dad is doing. Is it really that sore I wonder? Is it just being restrained? Some dogs (think Cavalier King Charles Spaniel ) start to panic before a thing is done to them, screaming before anyone has touched them even. Is this Dad?

It’s thrombosed and woody but its not recurrence, the urologist says. I suspect the issue the staff is having is getting to it to clean him. But I don’t think there is benefit in doing more surgery. It might end up with a worse non-healing area. We could do some radiation for the pain. But he is still urinating. Actually if he stopped urinating it would be quick. It’s a good way to go. A potassium spike stops the heart.

We are talking about him across his woody penis while he rants and shouts. The urologist is pulling his nappy back up and we are telling him its over but he is still shouting abuse at us.

I want to hear the doctor Dad. Shh shh.

I think what we need to do is talk to the nursing home about what they see as the difficulties in managing the area. We can give him more pain relief but I think surgery is ill advised and he isn’t a good candidate. And he can’t have more clexane after the subdural bleed. We’re limited in what we can do.

I ask about a suprapubic catheter.

Hmm not necessary while he is urinating.

I just don’t want him to be in pain, I say. I don’t want him to have more intervention if it is likely to be bad for him. Tears are welling up again. I’ll be guided by you, I say. I am thinking what I want is for someone to take the responsibility out of my hands.

In my head I am thinking how crazy it is that we are talking about a urethral blockage causing a spike in blood potassium as a good way to go. Now we are imagining scenarios that are quick and painless. I think I know a quick and painless way – it’s called euthanasia and I do it to animals on a regular basis.

People don’t want to see their animals suffer and at the end of their lives they decide the time to bring them to the vet clinic. I give them a sedation that sinks their head to the table. They probably feel like they are floating. Then I clip a foreleg and put a tourniquet around the elbow. A vessel stands up. I slide the needle into the vein and a rush of blood comes into the hub, mixing with the green pentobarbitone, the red turns blue-black. I unclamp the rubber band and tell the owner I am going to inject now and they might sense their beloved pet slipping away. I inject slowly, as slowly as I can. By the time the ten mls is into the animal all breathing has stopped and the heart has slowed down. I change syringes for the next ten mls. By the end of this syringe the heart will have stopped. I say Nice and Peaceful like saying it will make it so and place a hand on the dog’s head or on the client’s hand if it is nearby. I check the heart. It is never beating but I take a minute to listen. Then I tell them their pet has passed away. Then they cry.

But my old Dad must hope for a quick and painless death some time in the future. We still don’t know how it’ll be. But this hospital business is not helping him.

We have been here six hours and the decision is made to do nothing. He can go home tomorrow. Endone might be a good thing. He’ll be more sedated.

The nurse brings me a cup of weak, luke-warm tea the colour of a muddy puddle. She had no teaspoon so she brings me a knife for which to stir. I am stirring my tea with a knife and Dad is asking me why I am staring at him.

I am thinking of how to kill you Dad, but this knife ain’t sharp enough.

 

 

 

 

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At My Father’s Bedside

While I wait at my father’s bedside I read Cormac McCarthy’s first book, The Orchard Keeper, published in 1965, the year after I was born.  It is a bit of a vigil. There is something peaceful about watching the shadows change as the day progresses.  A yellowish glow tints the scene as the day goes on. All the while in the background the wind whooshes and whirs about the building. We are on the seventh floor of the hospital, up under the roof, and there is a view of sail boats on the Swan, like folded paper napkins. Another woman waits and watches too. She has the title  of PSA but I don’t know what it stands for. Her job is to sit and watch the demented, the wanderers, the ones who might decide to get out of bed and fall. She reads a thick book but she is close to finishing. I can tell it’s a romance from its cover; a damsel in the arms of an officer. The thin waisted beauty leans back but he traps her in his strong arms, moves his rock jaw close to her cheek.

My father is asleep. He has had a subdural bleed. Sandwiched between skull and brain there is blood. Now we wait. They check his eyes for light responses, lifting his lids like raising the morning blinds. He sleeps on.

Over pages the character from McCarthy’s book, Sylder, is in a physical fight for his life with a man he has given a lift to. It is 1933. They are fighting by the stationary Ford car on a dirt road. The man has struck the first blow, striking him with the car jack. The killing takes pages. One paragraph I read over;

“He was jerking at the man’s head but the man had both hands over it and seemed lost in speculation upon the pebbles on the road. Sylder let his hand relax and wander through the folds of the neck until they arrived at the throat. The man took that for a few minutes, then suddenly twisted sideways, spat in Sylder’s face, and tried to wrench himself free. Sylder rolled with him and had him then flat backward in the road and astride him, still the one arm swinging from his broken shoulder like a rope. He crept forward and placed one leg behind the man’s head, elevating it slightly, looking like some hulking nurse administering to the wounded. He pushed the head back into the crook of his leg, straightened his arm, and bore down upon the man’s neck with all his weight and strength. The boneless looking face twitched a few times but other than that showed no change of expression, only the same rubbery look of fear, speechless and uncomprehending, which Sylder felt was not his doing either but the everyday look of the man. And the jaw kept coming down not on any detectable hinges but like a mass of offal, some obscene waste matter congealing and collapsing in slow folds over the web of his hand. It occurred to him then that the man was trying to bite him and this struck him as somehow so ludicrous that a snort of laughter wheezed in his nose. Finally the man’s hands came up to rest on his arm, the puffy fingers trailing over his own hand and wrist reminding him of baby possums he had seen once, blind and pink.”

But still the man is not dead. He takes another page to finally succumb to the brutal force of Sylder. Finally extinguished the man relaxed “his hand and the fingers contracted, shriveling into a tight claw, like a killed spider.”

How hard he fights to hang onto life. How hard is it to die? Even old Dad seems to struggle on inwardly. Inside is he at war, dueling in hand to hand combat to hang on and not die? To emerge the victor.

The vivid richness of McCarthy gets me thinking about murder. I imagine bringing the pillow down, like in so many movies. I think of Francis. So many teenage tears shed watching Jessica Lang turn vegetable. Maybe the guard is here to protect Dad from me and what I might do faced with the diagnosis just given; “he might be starting to pass away.”

Lying in his hospital bed the nurse comes to clean his teeth, no matter that he is sleeping, or at least mimics it. No matter that clean teeth no longer seem a priority.  She asks him to open his mouth and he obeys. He has three teeth that she cleans with a bicarb swab rotating it around his mouth. When he’s had enough he bites down on it and attempts to draw it away from her. I think of a dog at tug of way. Ok you’ve had enough of that I see, she says. Give it up. The toothless gums hold the brush and then he lets go. He has won this fight. She retreats.

He sleeps on.

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Jasper and Goong Goong on Dying

When Jasper was about seven years old and his Goong Goong was already in his eighties we sat talking of death and dying. Jasper said the worst way to go would be wart failure. He qualifies the statement – you know covered in warts. He talks about this because he has one wart. A plantar wart. And it has bothered him.  Slowly it is going away, dabbed daily with some liquid. Jasper says the best way to die is as an old person – not sick or anything, just plain old. Goong Goong then talks about an old woman we all knew called Mary Nunn who died at the age of ninety when she was sitting in an armchair in her own flat holding some-one’s baby. A party went on around her and then someone realised she had passed away. Goong Goong says – that’s how he would like to go – holding Jasper’s baby.

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In the One Boat

One day when I visit Dad in hospital he asks me if Mum has divorced him. If not, why is she not here?

No communication, he says.

You’re not divorced Dad. She’s just up the street at the nursing home. You’re still married. Fifty years you’ve been married.

Because she might have a boyfriend up North somewhere. I seem to remember her going up that way to see someone when I wasn’t around.

What is the memory he has?

He looks confused. Like he is searching the back catalogue of his mind. Rifling through it.

I think she had a boyfriend once…

Or was that my mother?

He says mudda. His Dutch accent means that th sounds like d.

Dis and dat. Mudda and fudda and brudda.

She had boyfriends. Because my father was .. and he raises his fists, clenches and shakes them …always do this and do that.

But we didn’t know my brother and me. We were kept in the dark. All secret secret, hush, hush puppies.

Then he starts circling in on his parents’ marriage. But not penetrating deeper. Just that they separated. His mother strayed. His father was unkind. It is simple. In his face it looks like he wants to know more about why the separation happened. But he is still like the child he was then and there is no one to ask anymore. The time for asking has gone. And he missed it.

I can only guess how he might have felt. But I think it was bewilderment, abandonment.

Is my father dead? He asks.

Oh yes Dad, a long time ago,

I don’t remember the funeral, he says.

That’s because you didn’t go Dad.

And my mother?

Dead too.

You didn’t go to her funeral either Dad.

He wants me to explain to him why he didn’t go.

I don’t know Dad. Perhaps because it was a long way to go and in those days it cost too much money. Remember how you worried about money?

But I don’t know why he didn’t go. It was probably around 1976 and I would have been twelve. I don’t remember seeing him grieve.

When, as a child you see your father show no emotion at the loss of a parent, you wonder what’s wrong with him. Or perhaps he was parented so poorly that the grandparents warrant no tears.

You worry about what love is and why he doesn’t feel it. You wonder how you will feel about your own parents and if they died how sad would you be? You make excuses for his lack of emotion. Well he’s an adult now – that’s why he’s not crying when his father has died. But you feel he is missing a bit of his heart. You love your dog more than he feels for a parent. You bury your face into the side of the animal, despite its greasy seborrhoea, and imagine its death. It hurts so much that you can’t stay with the thought too long. Why does a brown Dachshund with a smelly coat and bad teeth so easily absorb all the love you have to give? There is something about fur and tears; sobbing soothed by fingers buried deep in animal hide.

Now my sister and I had no living grandparents. My mother’s mother had died when I was two and she had had no contact with her father since she was herself a six year old child after her parents had separated.

As teenagers we knew there was a more interesting story but my mother never let it be discussed. Her father had abandoned them. She had a simple explanation for his badness – a gambler spurred on by the Chinese and a drunk.

Her mother, our maternal grandmother was, on the contrary, worshipped. Mummy as she was called by her daughter had never enabled her children to know or love their father after the separation and although he lived into his eighties he never saw his children again. He was demonised and his attempts later in life to reconnect were thwarted by their belief that to see him would be disloyal to Mummy.

Even now, as an eighty five year old, my mother won’t allow more than a few minutes talk of her father before cutting the conversation off at the knees.

As far as the Dutch grandparents went they too were little known to us. Our Grandpa visited in the summer because he was a keen cricket fan, but my memory of him is of pipe smoke and a scratchy walrus moustache. He wore a look of jowly disapproval. We spent three months in Holland, me as an eight year old and my sister ten. To us our paternal Granny was European summer, roastie potatoes, dining out. Neither of the Dutch grandparents knew how to play with children or engage them. Seen and not heard types.

We had no connection to them and it seems my Dad felt little warmth to them either. Around them he took on a scolded boy look. He became reticent in his speech, a bit tongue tied, awkward. Now though they keep coming back to him like the past has pushed forward into the space normally occupied by recent memory. His early life; with all its disappointments, his short comings made plain by a strict father, have taken on more significance. Like they just can’t be held down any longer. They bob to the surface, never lost in the first place.

It is as if recent memory is fine dust, grit and it is sieved out, leaving the heavier more solid rocks of the past caught in the mind’s mesh. He worries these pebbles, over and over. He holds them between his fingers, feeling their smooth surface, reclaiming them as known.

As teenagers we wondered if our parents were suited to one another. We were concerned for what look to us as unfulfilled lives. Lives that were tragically dull and filled with work and banality. I think now how naïve we were to think that we could see something they couldn’t. We gave them no credit for just getting by. For sticking together.

Long into the night my sister and I discussed from our beds how much better off they would be without one another, or if they just concentrated on their own betterment. We wanted our Dad to quit his job and find a passion. We felt deeply that his work was a grind, where Aussies looked down on him and even made fun of him. We bemoaned his acceptance of a poorly paid job that he just did for the pay check. Hiding out in the garden or the garage on the weekends he was perpetually nagged and hen pecked by our mother whose soul purpose appeared to be yelling at him from the back door. Occasionally he would explode back and she would burst into tears. Their weapons against one another were simple; his – swearing, hers – tears. During the week while we were at school she watched Another World and Days of Our Lives and organised luncheons with her girlfriends. She had no career, no car and an inclination for snobbishness. To us they looked like two people, one boat, two oars, both rowing for opposite shores.

 

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Days with my Father

I had trouble with jobbies, he says. Even now as a woman in my late forties, my father using this word irks me. But there are no good words for it. Not my mother’s favoured expression inquiring about the opening of your bowels either. But definitely not jobbies.

So hard like a rock. I had to use my fingers and pull it out. He is showing me his hands, making an action like someone miming milking a cow.

Oh really.

Ooh yes. It was so hard.

A cleaner (she no doubt has a different title to this) tells me the toilet is blocked from too much paper. She keeps flushing despite this.

I relay the message. Dad don’t use too much paper.

Well of course I had to clean myself up after that. Maybe I used too much paper. I don’t know.

Well remember next time – use less paper. I think of saying “maybe not use your hand” but I don’t want to go there – to bring it up – to have to fully conjure the image.

Dignity is leaving him like fog lifting. Soon it’ll be gone completely.

I wander into the corridor to find a nurse. Two stand chatting beside a trolley. My dad, room 1226. I think he’s constipated. I don’t tell them how I know and they don’t ask. Normally, at the nursing home, he’d be given something for that.

She returns with a little plastic cup of vanilla syrup.

See Dad they have medication for that. You can ask the nurses.

I didn’t know that.

How’s the car? he says.

You don’t have a car anymore Dad. You can’t drive. I sold your car for you. Remember?

To be honest about it I don’t. I wouldn’t have a clue.

Where’s June? he says pointing to the ceiling with his thumb.

Lately he thinks she is upstairs in another part of the hospital, when he remembers he is in a hospital at all.

It’s a private hospital where nurses seem more akin to flight attendants than trained medical staff. You know it’s not vital that you get another gin and tonic, just be nice is all. But they’re busy. You can see that. Well that’s how it is here. Bells sounds. No one comes. Out of peanuts. Landing soon. Turbulence means we need to sit down and get our seatbelts on. They fuss with their charts, with their temperatures and blood pressure measurements making sure their pen marks are on the paper, the signature scrawled. But nursing, Nightingale-style takes time, takes talking. It means touching, using your senses; the real grit of nursing.

My father has had a partial penectomy. Perhaps you have to look that word up. Spell-check says there is no word but I know there is.

I’ll save you the trouble. It’s a penis amputation. Although he still has enough so that he can pee.

He needed this radical surgery because he had a squamous cell carcinoma on the head of his penis.

The cancer grew erosive and plaque like in a few weeks, shocking the staff at the nursing home with its rapid and seemingly malignant growth.

None of the staff at the nursing home had been faced with something like this before.

It was right before Christmas. My sister was in town with her daughter of five years old. Urologists, like most surgeons, take Christmas off. But we found one working through – not going the way of the Maldives. Infinitely practical, he saw little difficulty in the amputation surgery and excising the tumour.

We’ll leave enough length for you to hang on to he told Dad. So you can direct it down when you urinate. After all he just needs to be able to pee.

The doctor and my old dad are behind the curtain that does for privacy in the doctor’s rooms.

The receptionist has told me they have 7000 tracks on their i pod music selection. We’re all out of love, what am I without you … Air Supply takes me back to Countdown, Molly Meldrum. Dad loved ABBA, Blondie, Sheena Easton. If he heard a track now would it remind him? Would he remember being a Dad to teenage girls – hassling us at 5 o’clock on a Sunday night to clean up our rooms when Countdown was on and it was a matter of life and death to see who was Number one? .

I can’t see anything but I can hear my dad groaning. A pitiful sound. Unfamiliar. Animal. My sister and I wince together and raise eyebrows when we hear the doctor ask whether he is circumcised or not. We whisper to one another. Can’t he tell?

Why can’t he tell?

I have flash back of my father coming naked from the bathroom, sauntering down the hall to the laundry where he had his wardrobe. He never worried about modesty, till we were old enough to object strongly. He loved nudity, did my Dad. Maybe it’s a European thing, a Dutch thing. He cared little who saw him naked. He didn’t bother with the towel around the waist thing by the open car door at the beach. Just let it hang out. I remember the penis, elephant trunkish. Not circumcised.

The reason the surgeon can’t tell is because the tumour has pushed the foreskin back and the tumour has grown so that the prepuce can no longer move freely over the penis.

Dad can’t answer the question about circumcision. It’s equivalent to asking him the day of the week, the season of the year, what floor he is on.

I think back to the mini mental score chart. 13 out of 30 about six months ago. I wonder what he would get now.

Not circumcised, I pipe up.

Motherly.

The surgery went well. He seemed unaware that anything of such significance had happened to him. He said the nurses were taking his stuff and he was squirreling away sachets of jam and butter and mini boxes of cereal.

He started to talk of buying land at Leeman, a small fishing town north of Perth and somewhere I don’t think he has ever been. But the town name took hold.

But now after only two months back in the nursing home he is back in the ward again.

The remaining few centimetres of the penis has become woody the surgeon says. He thinks it is thrombosis after an ultrasound helps rule out recurrence of the tumour or infarction.

I can tell he’s not all that sure himself about why it has happened and what might happen from here. A hand rises to stroke the stubble on his shaven head. But he admits him for investigation and so I guess there is relief that something is being done or will be done or will be thought of being done.

I wonder how demystified the penis must be for this man who pokes and pulls and prods at them all day.

Because for a week before this the nursing staff at the old people’s home were wondering why the irritation, why the blood spots on the sheets and why the reluctance by him to let them clean up down there.

****************

I am sitting in his empty room. The bed has been made up but not with clean linen because I can see his breakfast stains, canary yellow egg and smeary cereal, on the white cotton blanket. Why do I think this means they don’t care about him?

Odd bits of clothing are about the room. I picture him getting them off and on unaided. Not really knowing what to put where. It’s not like the nursing home where the carers are really carers – deeply committed to his welfare. Cajoling and coaxing to get him to do it their way. Here the nurses are young, I sense they can’t be bothered with him. I hear my disdain for them in my writing. My contempt for their smooth skin. Give me an old nurse any day.

So I sit waiting. He shouldn’t be long I am told. Another ultrasound.

I’m new here, smooth skin says, I don’t know how long it takes.

The room is right by the desk, the nurses station they call it. Behind nurses gather, all chinking with their keys and badges and tags hanging off their belts and on bum bags about their waists. Beneath their Polly cotton tops and pants are detectable rolls of fat around their middles. Proof they don’t work hard enough I think or else is just everyone fat these days.

There’s lot of inane chatter. A nursing assistant says her husband thinks he deserves a medal for hanging up some washing. Another makes a phonecall to her own doctor requesting an appointment. Someone else is wanted but she’s at tea. Mrs So and So in room 14 has a temperature of 38.7 but is refusing Panadol.

A navy blue cardigan hangs over the back of a swivel chair like a cormorant hanging its wings out to dry on a pylon. But there’s no sea here. No wildlife. It’s decidedly hospitillian; low ceilings, the sounds of nurses moving – keys and tags rattling, trolleys, clanging pans, lift bells. There’s a whiff of meths, antiseptic, a chesty cough, old heart patient shuffles, a doctor’s voice – see you tomorrow.

In the end I leave without seeing him this day. There’s a limit to how long I can look at thin Venetians, count terracotta tiles on the roof opposite, read his chart.

But I still feel guilty leaving. If someone asks me I will say I have a school thing to do. And I have a life, or at least I want one.

It’s the time of the year that corellas come in large flocks. They hang from their toes on olive trees and harvest the fruit, staining their feathers with oil. They waddle on the grass with their seemingly over large heads and heavy beaks but then take to the air as a gang, squawking and marauding. Not a pretty bird song. A truly Australian sound. The Bikies of the bird world.

******************

He is going home. Back to the nursing home where he has lived for nearly a year. But he has no memory of it as a place he knows when I talk of it.

To be honest I haven’t the faintest clue, he says time after time when I ask him if he can picture the place.

When I arrive on the ward to take him home he is lying corpse like on his back, his mouth open, eyes closed. Lately his cheeks have begun to sag inwards and the shape of his skull is more noticeable. I think about the way old dogs lose their temporal muscles on their heads as they get really old, sometimes when they have cancer that seems to strip them of their meat. When you place a hand on their heads there is just bone beneath skin. Dad’s skin too seems draped over the bones, falling with gravity towards the hospital floor. Again I notice the stained bed linen.

He has his nightshirt on over his polo shirt, socks on, but no underwear. He doesn’t know whether he’s been to the toilet when questioned about his bowels.

There are little bits of dried blood on his face where he has nicked himself dry shaving.

You’re going home today Dad.

Is it a big place?

Your room is bigger than this.

It’s a nice place, Dad. Mum is there. She’s waiting for you.

Mum is having her hair done. Each time the in-house hairdresser is mentioned my mother tells me how she is a breast cancer survivor. Lost a bosie, Mum says. Another cringing word uttered by your mother.

My mother has a love hate relationship with the hairdresser. The hairdresser wants her to come more often but my mother doesn’t like to sit there while the set takes and the hair dries and the colour is put in. It is a test of patience that my mother fails. Waiting isn’t something she is good at.

The carers are putting Dad in the room and I go and find Mum to tell her he is back. She sits in a wheelchair, hair tightly set and teaky, waiting for someone to take her back to her room. She is happy to hear that he is back but worried too.

Last time he went to hospital he came back very confused, wanting to go to Leeman and convinced he was not staying in the home.

This time he shows he recognises some of the staff and their room.

But who knows really. He doesn’t want to disappoint either. Something somewhere tells him he ought to know. He ought to remember.

When Mum gets back to the room and she exclaims Darling you’re back he throws his arms in the air and says Ah Nicole. It is my name. But she doesn’t mind. She knows he recognises her. Just as he calls me June when he sees me in the hospital, he also calls her Nicole. We are the two lone moons circling his planet. The names are interchangeable.

From her wheelchair and him from his chair they reach for one another, tottering forward awkwardly and give each other a peck. The bony hands grasp each others.

It is lunch time in the home and together everyone decides to eat in the dining room. He hasn’t had much company in hospital and we all think it is a good idea. Using the frame and with Carol the carer beside him, gripping the back of his trackie pants, we head towards the dining room.

Other residents comment on Mum’s hair. She looks tidy.

Alex is struggling. He is stooping and might not make the table. Carol gets someone to bring a chair and he seems to collapse into it, almost passing out. He has gone a poor colour. The sagginess of the checks seems exaggerated. Three carers are about him as he closes his eyes. One has her hand on his pulse and Carol is behind him holding him into the chair that otherwise he might slip out of.

They keep asking him his name. And he says yes. Still here, he says.

A hoist is brought out to elevate him and get him from the armchair to the wheelchair. He is scooped up like a baby bird. His skin is like the unfeathered bird’s, showing the architecture beneath. A carer has a hand on his chest. Can she feel the baby bird’s heart beating within the thin rib cage?

Back in the room the hoist is used again, lifting him from the wheelchair and over towards the bed. I think of harnesses for Para gliders and kite surfers. I think of the daredevils whipping over the ocean at Leighton and then see Dad’s hands clinging to the metal as he hovers between chair and bed.

His blood pressure is low and the nurse thinks he has lost weight in hospital. She thinks maybe he didn’t eat. Maybe he didn’t. I ticked the boxes. I ordered the food, but I was not there at meals and I wouldn’t know if it sat untouched. Just as they ignored his bowels I wonder if they checked under the lid of the plate.

I leave him as he is falling asleep again, spittle snail-trailing down his chin. I exit through the dining room passing Mum on the way out while she works her way through meat and gravy. All of them at their plates like herd animals with their heads in a feed trough.

He’s okay I reassure her, just low blood pressure. Needs a rest.

When will you be back?

Tomorrow.