At death's door

AIMIE CRONIN
Last updated 05:00 17/05/2014
waikato hospice
Chris Hillock/Fairfax NZ

TILL THE END: Fred and Diane Blackburn have been married 47 years.

waikato hospice
Chris Hillock/Fairfax NZ
SUPPORT AT HOME: Hospice nurse Cathy Mills and Tania Merrilees get Tania’s mother back into bed after a procedure.
waikato hospice
Peter Drury/Fairfax NZ
BEV AND BOB PORTER: Visits from the Hospice nurse make a difference to Bob.

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It's one of those days where skin prickles in the chill then burns at a pinch. On the way to see Robert Porter, I look out the car window and sigh. The weather can't make up its mind. Cathy Mills, the Hospice nurse, agrees. She sees a tree she likes that looks just like an umbrella. Autumn parades its colours on tidy  streets, streets that are still, lawns mowed, no one around. Old people live here and they sit inside behind netted curtains. I wonder if they fear death the same way I do.

I see an old couple waiting for the bus. He's wearing a grey suit and she's wearing a grey dress. They're frowning at the sign, figuring something out. It's as though they've been married so long they almost look the same. They're the lucky ones, all wrapped up warm and worried about the bus, I think.

Robert Porter sits in the exact spot in the dining room that catches the morning sun, his chair turned out from the table. His house is warm. Old china rests in a cabinet, family photos in wooden frames. A sign in the kitchen says he supports two teams: New Zealand and whoever is playing Australia. He has a decent head of grey, combed hair. He wears faded trousers, a check shirt under a burgundy jumper.

Bob's the name, he says. It's more relaxed. My mother used to call me Robert when I was in the shit. 

His wife Bev sits across the table. They've been married so long they talk with a steady stream of interruptions.

We've been married 100 years, he says.

How many, come on ... she says..... 54 years, she says, when he doesn't answer. 

We were teenage sweethearts, he says.

You used to follow me home from college, she says.

You used to wear a black gym dress, he says. I was an apprentice joiner and whenever she got out, I would follow her.

My little brother would hear Bob whistling and he'd say, who's that whistling, I'm gonna punch his lights out.

She's been through everything with me, he says. Just now, he's close to tears.

If you're on Cathy's visit list, it means you're dying. Bob knows this. When he had his first heart attack life was ticking along nicely and he was just about to become the president of his Probus club. 

Now all that's gone out the window, he says.

Cathy is one of the Hospice community nurses assigned to maximise the quality of the life that's left. She's a small woman, dressed well, rings on a bunch of her fingers, short blonde hair. She has a framed picture of her dog back at her desk. She sounds scary on the phone, but she's good with patients. She laughs with her eyes and listens when her patients talk. Today, she's dressing Bob's finger.

Ever seen gout before? he says.

I examine his wound politely and it's all swollen and covered in puss.

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The damned thing has deformed me finger, he says. 

But it's the heart that's getting the better of Bob Porter.

It will be two years next month since the heart attack, Bev says.

I'd just taken two bags of rubbish out, he says. I came back, sat in the chair, and said, I don't feel so good and I fell, he says.

No, no you didn't fall, you....

And their talk becomes a jumble of words as they piece the event together.

Then: Apparently I've only got half a heart, he says.

Well, only half is operating, she says.

He won't go back to hospital. Last time he stayed, he wasn't washed for days and he came home with bed sores and he's furious about that. And Bev has bad stories, too. So he's home and Hospice is in charge of his care and Cathy sits in the sun and listens to him talk and listens to his heart. 

Your pulse rate is pretty good, she says.

My dear, he says, I take your word. 

It's a nice, secure feeling for me to think Hospice is here, he says.

Then he nods to Bev. She's the main thing, he says. She does everything for me.

She's the cat's mother, she says. But she looks across the table and smiles. In a way it seems like part of his goodbye, telling us about the love of his life, the need to make sure she knows. 

Back in the car. I ask Cathy if most patients accept death when they know it's coming for them.

Pretty much, she says. Once they have lost the ability to live the way they want to. 

 

Diane Blackburn lives down a long driveway just out of town. Her grass is too perfectly green to walk on. Her daughter Tania opens the sliding door and yells out, You can walk across it. 

Diane Blackburn sits on the edge of a large couch. She's dying. How can the grass keep growing so green when this is happening inside, I think. 

A family photo sits directly above her. It shows Diane and her husband Fred and their five children when they were all decades younger and Diane was 70-odd kilos, not 45. Her golf trophies rest in a cabinet, family photos in frames. The TV plays without sound. The fire is going and it's almost too hot. The room smells like disinfectant. A hospital bed takes up any room to move. I don't know where to put myself. Cathy gets straight to work. The family all like her. She's here to make Diane comfortable, as much as she can, while Tania and her sister Karen hover. Hospice has wrapped the family up and evidence of its support is all around. The bed, a walker, breathing equipment, a basin.

I asked Hospice for a few things and they said what else do you need? Tania says.

You can ring them 24/7 and they will come, she says.

It takes minutes to move Diane from the couch to the bed and her daughters  would take all day to do it if they could spare her pain or discomfort. Never have I seen such tenderness. They rest hands on their mum and their eyes are on constant watch.

Tania is a nurse, so she had heard of motor neuron disease before her mother got diagnosed with it.

I had an awful feeling deep down, she says. 

Diane was diagnosed two years ago in June. Hospice was enlisted seven months ago and now she is in palliative care.

Speech, mobility, that's pretty much gone now, Tania says. She's unable to drink due to the lack of swallowing, she's on morphine to relax her and to help with her breathing. Eventually it will be one blink for yes, two blinks for no.

She is fed through a tube in her stomach. Her voice has become a long moaning sound that family can understand, because they are beside her every day. 

I didn't think it would be like this. As bad as this, Diane moans and her daughters translate. She motions for the pen. It takes her a while to write.

Tell them how I live, it says.

Given two years, or four, Hospice has been marvellous, it says.

Hospice has talked with Diane and the family about how she can manage the end and she feels better that she has some control. She has chosen two songs to play at her funeral. Two plots at the Dinsdale cemetery for her and, one day, Fred.

Diane and Fred have been married 47 years in October. He's avoiding our visit, but his daughters urge him in. He walks straight to the couch and sits with a hand on top of his wife's. She looks over at him and smiles. He looks like a man who hasn't cried many tears in his life, but he is ready to cry them now. He clears his throat. 

Last week, it was decided that Diane would try sleeping in the lounge because the hospital bed is more comfortable. She tried it for three nights, but she didn't sleep and Fred didn't, either. They've shared a bed for 47 years and they are not about to stop right at the end. So Diane is carried to bed and her family waits till she's comfortable and she lies next to her husband all night and doesn't move because she can't. 

I wonder if they talk to each other when the lights are out, but it's not right to ask because that's theirs. And I think, in this moment, dying doesn't get easier because you're old. How lucky they are to have had this love for 47 years. How sad it is for one of them to go. And I think about the couple at the bus stop. And the grass keeps growing greener. 

HOW TO SUPPORT HOSPICE

Hospice Waikato's services are available to all people. It not only offers care for the terminally ill, but support for the entire family. To get involved in Hospice Waikato, the public can donate money through the phone appeal, or online. Hospice also survives because of volunteers, the donation of goods to Hospice shops, the bequest to Hospice Waikato in a Will, and fundraisers.While the Waikato District Health Board funds part of the running costs, Hospice Waikato is required to fundraise two million dollars annually to provide its services. The shortfall comes largely from generous donations from the community and funding partners.Visit hospicewaikato.org.nz, or phone 0800 HOSPICE.

- Waikato Times

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