VANCOUVER ISLAND, NOVEMBER 2012
Over the past few years the journey to Canada has become much less stressful due to the introduction of a direct flight from Sydney to Vancouver. Just twelve hours instead of the eighteen hours-plus route via Los Angeles, with two more flights to reach the island. I’m frightened I won’t get there in time.
It’s just over a year since I’ve seen my sister, but Fedema and I have been in touch regularly and I have an understanding about how they’re all managing. We’ve kept this communication hush-hush from Ken, who feels threatened if he’s not in the loop. Effectively, Fedema is now caring for two people, although I’m relieved to learn that there have been several extra carers employed to help her manage the workload. Fedema has delayed visiting her children and mother back in the Philippines because of Margaret’s deteriorating condition. The startling decline in Margaret’s condition has taken them all by surprise. What began as a small bedsore quickly developed into a massive, deep ulcer. Margaret hasn’t managed to eat anything for almost a week and has had minimal fluids. Via email, Fedema has warned me that Margaret hasn’t communicated in any way for months, so I’m prepared. At least, I think I am.
I’m picked up at the airport by one of Ken’s relatives. It’s early evening and I enter the house from the garage, through the kitchen. I’m talking as I walk through the back door and am astonished to see Margaret, not in her hospital bed, but propped up in a recliner chair in front of the television. She hears my voice, turns her head and actually smiles, though her eyes are glazed and watery. Later Fedema tells me it’s the first time Margaret has responded to any voice for many months.
Ken is also in a recliner chair and he tries his best to get up, but I can see he’s struggling. I can’t believe how frail and unsteady on his feet he’s become since I last saw him.
There are two extra carers and Fedema has been cooking dinner for everyone. I’m amused to see it’s one of the recipes I taught her when she first arrived. We eat together around the kitchen table and Margaret remains fidgeting in her chair which has been pointed in the direction of some mindless quiz program. We transfer her back to the bedroom and this gives me a chance to talk alone to Fedema. It’s a disturbing conversation.
Margaret is now the responsibility of the local palliative care team. A port has been inserted into her thigh for the regular administration of morphine due to the severity of the ulcer, and a nurse comes every morning to check her, change the dressing and help Fedema give her a wash and a fresh nightdress. She is allowed up to four doses of the painkilling drug per twenty-four hours. However, tearfully, Fedema tells me that Ken has forbidden the use of morphine except for just one daily dose, to be given an hour before the morning nurse arrives.
I look at the medication logbook provided by the team and see just one entry a day. Margaret cannot speak and she sleeps a lot. However, when she’s awake she looks agitated and wild-eyed. It must surely be the pain.
A hospital bed has been installed for Ken in the main bedroom, which resembles a hospital ward. There’s a table for the medications, piles of dressings, clean changes of linen and pillows so that Margaret’s position can be routinely changed. However once Margaret is put to bed at night Fedema doesn’t see her again until the following morning, so she has no idea if she’s comfortable or in pain during the night. This means she’s lying in exactly the same position for ten hours, which must surely impact on the ulcer.
I sit with Ken for a while, and he tells me, quite sadly, that when his mother died two decades ago it was within minutes of being given a shot of morphine. He’s therefore convinced that Margaret will die from being overdosed with painkillers. I understand his fears, but I am also perturbed by the thought that Margaret is suffering needlessly. That night I sleep in my old room, the spare room where I have slept so often over the last seven years. I’m exhausted from the journey but I wake in the early hours, worrying how Margaret is faring; concerned that she could be awake and miserable.
On my laptop I’ve done some reading about people with Alzheimer’s and their perception of pain. In the later stages of the disease, when sufferers are unable to really communicate, it’s very challenging to determine if they are feeling intense pain or not. In the earlier stages, there’s a belief that Alzheimer’s somehow intensifies the sufferer’s perception of pain, but again this theory is debatable. I remember vividly a few years ago Margaret had a fall in the middle of the night and didn’t wake anyone. She simply went back to bed and went back to sleep. In the morning when we woke her and went to help her get up, it was obvious that she was injured and this was quickly confirmed by an X-ray that showed a fracture to her left forearm. Ken vaguely remembered hearing her fall, but when she took herself back to bed he simply assumed she was fine.
So, did she feel any pain and have no way of expressing it or of asking for help? Or was she oblivious to the pain of a fractured arm? At that time, apart from keeping the injured limb immobilised, we treated her with paracetamol and anti-inflammatories for at least ten days after the accident, assuming she would otherwise be uncomfortable.
The morning after I arrive we prepare Margaret for the visit from the nurse. She is looking relaxed, having been given her small dose of morphine, and I stay while the dressing is changed. The ulcer is horrendous but Margaret appears unfussed. Ken is hovering, but I still manage to have a few quiet moments to question the nurse about pain relief. She checks the logbook and the prescription, and reassures me that the doses are quite small, designed just to keep Margaret peaceful. For me, the word ‘peaceful’ is the key. Without pain relief she has a rigid, slightly startled facial expression. After the morphine she is serene. She deserves serenity.
I know that I’ll get nowhere trying to reason with Ken so I decide to use my own common sense and initiative, following precisely the guidelines given by the palliative team. At least Ken has stopped demanding that Margaret be taken for her twice-daily walk – she can’t even totter three steps without two people supporting her. It’s now essential to lift her, which causes visible distress, and Fedema has stopped trying to take her to the toilet – she keeps her beautifully clean with sponge baths and routine checking.
In the late afternoon Ken again wants Margaret to be brought out to the sitting room, to watch television beside him. She has been given only one dose of pain relief since early morning and her face appears anguished during the transfer. I can understand how Ken believes that Margaret will just die if left on her bed, day and night. He believes she needs to be out where things are happening – the meal is being prepared and there is a fire burning in the hearth. However, I have a strong gut feeling that Margaret is not benefiting from this evening routine, which has been going on ever since her condition began to deteriorate. Before that, she was still up and dressed until bedtime.
Seeing Margaret lying awkwardly on the vinyl recliner, her face contorted and the sound level of the quiz show blaring across the room, causes something in me to snap. I burst into tears and tell Fedema and the other carer to gently take Margaret back to her bed. When Ken objects, to my shame, I shout at him: ‘Can’t you see Margaret is dying and she is obviously in pain? She needs to be given her morphine and kept comfortable and safe in her bed. One of us will stay with her all the time, twenty-four hours a day. She will never be alone. She’s at the end of her life and she needs peace. I will not let my sister die stuck in front of that hideous quiz show!’
Margaret is not near enough to hear my outburst. I run from the room. Poor Ken, sitting in his chair, stunned. I give Margaret her evening dose of morphine and write it up in the logbook. I sit with her while the others have dinner, and Fedema sits with her while I have mine and clean up the kitchen. I then move her recliner chair from the sitting room into the bedroom so that I can sleep beside her. I set myself up for the night – a pillow, a blanket, a book and a torch. I will be her night nurse.
Nothing is ever said about my outburst. Ken just accepts that I’ve seized the reins and is very sweet to me and to the other carers. It reminds me a bit of my father, who was a classic bully unless challenged. Then he’d back off and behave like a lamb. I am so upset to feel that I have ‘won the day’. For me it’s a hollow victory because it’s not about my taking control; it’s about staying close to Margaret, monitoring her and making sure she has pain relief if she becomes conscious or restless during the night. It is all I can do.
When I dwell on the people in my life who have died, and how I feel about and have been affected by those deaths, I face myriad emotions.
My younger sister Jane died in infancy when I was not quite three years old. I have no tangible memory of Jane as a baby but I do recall clearly seeing my mother, reed thin, walking home down the steep hill to our block of flats after visiting her in the children’s hospital. I must have known Mum was expected home and I was waiting, sitting on the low brick front fence at the front of our block of flats. I can remember her prominent cheekbones and the dark circles under her eyes.
The implications of Jane’s death were profound for my brother and me. Our kindly neighbour drove us to her sister’s farm at Taralga, near Goulburn. I guess we’d been told that Jane had died and we were being sent away on a holiday. If we were traumatised by being suddenly separated from our parents for the first time, I don’t remember. My memories of our time at this farm are lovely. Our hostess was a middle-aged single woman (although we thought she was terribly old) caring for her elderly father, who was still running the farm. She was quite wonderful to us. She cooked lovely meals, she included us in all the farm activities such as shearing and feeding the orphan lambs, and tucked us warmly into bed at night. She took us to the little Anglican church on the hill on Sunday mornings – an absolute novelty for the children of atheists. I loved it.
After about six or eight weeks Mum came down on the train to take us home. From that time, for many years afterwards, we returned to the farm for school holidays once a year. These memories are all happy for me, but I do wonder if that first unexpected separation from our mother caused us emotional problems.
In my teens a male friend was killed in a car accident. At that age the possibility of death is seldom contemplated, so my emotions were more about shock and disbelief than grief. I remember thinking about all he had lost – his future life had vanished. I don’t think I really had my head around it.
When I was twenty-two my father died by his own hand. I was pregnant with my first child and I recall feeling shock but not sorrow. My father’s health had deteriorated after decades of hard drinking and chain smoking. His relationship with my mother had become toxic and he’d moved out of the family home into a small dingy flat where he ended his life. My mother had been tormented by his philandering, drinking and abusive temper, yet unbelievably (to me) she still loved him. I felt an overwhelming sense of relief and release at his death, hopeful that my mother might now go on to build a life of her own. I didn’t feel anger, or sadness or grief. I was glad it was over.
In my thirties, my first boyfriend who I’d lived with for a couple of years before I met David – died of a drug overdose in Paris. Again, it seemed unreal to me; at that moment I had three young children and my world of suburban domesticity could not have contrasted more with his realm of shady deals and seedy street life. I felt infinite sadness that his life had been lived in the shadows, but I hadn’t seen him for at least five years and it was an ambiguous pain.
My mother lived with us for more than twenty-five years. She didn’t create the new independent life that I hoped for her after my father’s death; instead she became a positive force in our young family and she was an outrageously delightful grandmother and lively companion for me when David was away working. She had maintained her journalistic whisky-and-cigarette habits, although she was rarely sick and didn’t spend even one day in hospital from the time she joined us until the day she died. David always described my mum as a ‘triumph of genes over abuse’ and even though I was in shock when a sudden aneurism downed her in a matter of hours, I didn’t feel her life had been cut short. I knew I would miss her dreadfully, but I felt her life had been fascinating and was worth celebrating. We took charge of the burial arrangements, bringing her back to the house the night before her ‘home funeral’ and having a festive party around the coffin in the middle of the kitchen table. Friends and neighbours gathered and we decorated the casket by communally painting it, writing messages and daubing footprints of the family pets (including the chickens). It was a riotous and joyful expression of love.
The following morning, I opened the lid of the coffin and looked at my dead mother. I immediately understood that she was no longer there; just a collection of cells; all that remained. I was washed by a sense that it was okay. Okay to die. Death didn’t feel frightening or daunting. It felt normal.
My grief was expressed in an inability to clear out my mother’s room and so for more than a year it sat exactly as it had been left on the day she died. The same sheets on the bed, the same pile of books on the bedside table and the same half-filled-with-urine commode that we didn’t discover until eventually we decided the time had come to strip the space for another occupant. Mum was fastidious about emptying and washing her night potty so must have been feeling truly frightful on that last day, to have left it behind for someone else to deal with.
As I lie on the reclining chair next to Margaret in the middle of the night, I still don’t know how I really feel about death. It’s an unavoidable fact of life, it’s natural, it’s normal and all of us have to do it in the end. Even so it feels strange and mysterious, imponderable and abstract.
With routine morphine Margaret is now calm and seemingly pain-free, sleeping for long periods but also conscious at various times and able to cope with some thickened fluids. She’s not interested in food. Fedema and I take it in turns to sit with her, playing the music she loves and allowing the sun to stream in through the large picture window that overlooks the garden. The palliative team come and go. They are reassured now that there’s a settled care routine.
Ken shows me some documentation from their safe. It’s a body donation agreement between Margaret and the medical school at the University of British Columbia in Vancouver. I’m not sure I want to think about all this right now, but he’s keen for me to read and understand what’s expected so that I can make it happen. He’s no longer capable of handling complexities. Later I’ll be grateful for this head start.
In the house there’s an atmosphere of hushed anticipation. All the rituals of daily life continue at an unhurried pace – washing clothes and bedding, preparing meals and keeping the house clean and cheerful. There’s a sense of time standing still. We drink a lot of tea and talk quietly about nothing much, certainly nothing important. It’s as if we are observing ourselves and our surroundings in slow motion. The objective is that Margaret remains serene. I sit by her bed and talk softly to her, whispered words to let her know that someone is nearby. I hold her hand.
Watching Margaret’s decline over the nine years of her dementia has confirmed my strong belief that the essence of her is still there, trapped inside her body and under the control of her damaged brain. The confounding thing about Alzheimer’s is that every so often the sufferer will have a startlingly lucid moment. A smile, a turn of the head, eye contact. I cannot accept that there’s ‘nothing going on’ or the possibility that all cognitive function has ceased. I refuse to talk about her in front of her, as if she’s not there. I still love and respect her as much as ever: the clever, funny and kind woman with a sharp intellect and endless artistic talent. I can’t see her as an empty shell. A nothing, waiting to die.
We have two peaceful days like this. Ken has accepted that Margaret is staying in her bed, and he pops in to see her often. He also talks to her, now with tenderness, and when he needs an afternoon nap we leave them alone together.
On the third night I fall asleep in the recliner chair beside Margaret as soon as I get comfortable. Keeping vigil is exhausting. I only stir when Ken gets up to go to the bathroom and I turn on the night light to check Margaret. I haven’t been aware of her fidgeting or getting restless or needing pain relief.
She looks the same but isn’t. Her hand feels warm but when I lean in close over her face I sense no breath. I feel for a pulse; there isn’t one. She can’t have been gone for long – perhaps only ten minutes. I check again, pulse and breathing. Nothing.
Ken comes out, heading back to his bed. I softly call his name and tell him I think Margaret has died. He comes over and, without his glasses on, leans close to her face. He feels her forehead, touches her hand.
‘The palliative team say we can call them to come over any time there’s a change – day or night,’ I remind Ken. ‘What do you want us to do? It’s entirely up to you.’
In silence he stares at Margaret for another minute or two.
‘I think we should all go back to bed and get some more sleep,’ he says, ‘and see if she’s still dead in the morning.’
He turns and goes back to his bed. I switch off the light and tiptoe across the hallway to find Fedema. She’s awake and has heard us talking, wondering what’s going on. I tell her. We go down to the kitchen and make ourselves tea and toast. We talk for four or five hours until Ken finally wakes.
We check on Margaret, and she’s still dead.
The morning after Margaret’s death is a Saturday and Canada’s Memorial Day. I phone the palliative care team to inform them that Margaret died peacefully in the night. They’ll organise a doctor to sign the death certificate and a funeral company to come and collect her body within two hours. I also let them know I’ll be contacting the University of British Columbia in Vancouver to organise the body donation. I knew this was a really important decision for Margaret; she’d talked about it when we first got back together. I also know that she wants no formal funeral or memorial. She just wants to disappear.
I reread the paperwork, which dates back more than eighteen years. It requires legal authorisation from Ken as next of kin and also indicates there will be additional legal forms to fill in, sign and to get witnessed either by a notary public, a bank agent or a judge. If wonder if they will still accept the body once they know the cause of death was Alzheimer’s.
The Monday will be a public holiday and I’m anxious about how I’m going to get through all this red tape with most businesses, offices and banks closed. I find an ‘after hours’ contact number for the authority at the university that deals with body donations. They must be well aware that people don’t just die during office hours.
A very pleasant woman takes my call, explains that she will need to email me some up-to-date documentation to print out, get signed, witnessed and returned to her before Margaret’s casket can legally be loaded onto the ferry for the journey to the mainland. Then she informs me that the body must be at the university no later than Monday night. They won’t accept a cadaver more than three days after death. I have less than three days, including a Sunday and a public holiday, in which to print out the paperwork, get it signed and witnessed and returned to the university – plus organise the release of Margaret’s body and get it transported it to the university via the ferry. I feel overwhelmed but determined to make this happen for my sister.
I have a laptop computer with me, but no printer. I will have to dash to the supermarket and get a USB stick to download the documents, and then find somewhere to print them. Over the weekend, where will I find an authorised person to witness the documents?
Just as I’m leaving the house, the phone rings. It’s the funeral director. They are unable to get through the CBD of downtown Victoria because it was closed off for the annual Memorial Day Parade. They won’t be able to get out to the farm until the late afternoon. The same predicament applies to the palliative care team and the doctor who needs to sign the death certificate. They ask if we can prepare and dress the body, as too much time will have elapsed by the time they eventually make it out to the farm.
I speak to Fedema. Neither of us has laid out a body before but she is more than willing to help me do it. We search through Margaret’s wardrobe and find some lovely clothes – her best. I’ve never seen her wearing them.
Suddenly the logistics of getting Margaret’s body to Vancouver seems immaterial. We close the bedroom door and fill two basins with warm water. We delicately remove her pyjamas and there she is naked and dead, as fragile and vulnerable as a baby bird fallen from the nest. We work together, on either side of the bed, weeping in unison. Keening. In one way it is a release, an acknowledgement that for her these last few years of adversity and suffering have finally come to an end. Knowing that this is the last time we’ll touch her; tend to her. Fedema, who has nursed Margaret with such wisdom and kindness over five years, is deeply moved. Our tears mingle with the warm water as we sponge her down. We brush her soft silver hair, massage moisturiser on her face and hands, and renew the bed linen.
In death, Margaret’s face is a mask. I carefully closed her eyes when I first realised she was gone, but her mouth is set open. Alzheimer’s has stripped away any hint that her expression was once lively, animated.
When we emerge from the bedroom, the house is full of people. Ken’s immediate family has arrived, along with his lawyer. People are making tea and coffee, handing around biscuits. Ken has solved the problem of the witness – he remembers the home phone number of his local bank manager, who is happy to come over and sign the paperwork. All I have to do is download and print it.
Ken then announces that he wants me to write an obituary for Margaret, to run in the newspaper the following Wednesday. Another deadline! I’ll need to talk to our brother, Jon, in Australia, as he shared the same difficult childhood and can give me some additional background. I need to speak to her colleagues from the university; her friends in the art group and her oldest friend, who travelled with her from Australia in the 1960s. I certainly have my work cut out.
I don’t sleep well even though I’m utterly exhausted and overwhelmed by the emotion of working side by side with Fedema to prepare Margaret for leaving her much-loved home. My brain is addled by the number of tasks I have to complete. All afternoon people have been streaming into the house; endless cups of tea and kindly conversations. Ken holds court and seems greatly buoyed by the warmth extended by friends, neighbours and family members.
Staring at the ceiling in the dark, my heart goes out to Fedema, who had recently lost her husband. In the Philippines her husband had been caring for their four young children for years with the help of her elderly mother. Fedema has always been in daily contact via the internet; skyping every morning when the children are doing their homework and having breakfast around their kitchen table. The timing worked well as it was the afternoon in Canada, when Margaret and Ken are used to have their daily rest.
During this time Fedema never indicated to me that her husband had health issues – I don’t recall her ever saying he had to see a doctor. There had been no hint of a problem. I was at the farm two years ago when I received an urgent email from Fedema. Her husband had experienced sudden chest pain in the night – a heart attack – and had died before medical help was available. He was in his early fifties.
At the time I went immediately to Canada to take over; she flew to her village to deal with her shock and grief. She had left Margaret and Ken’s farm before I arrived, and I had left to return to Australia by the time she got back. So we’ve never had a chance to really talk about what really happened or to discuss how her mother was now coping on her own. The next time I saw her was this very week.
There’s something profoundly wrong with this situation, where a devoted wife and mother is ‘in service’ caring for an elderly person in a foreign land. Laying out the body of my dead sister yet unable to be at the bedside of her husband. Unable to physically care for her own children and her ageing mother.
I will never feel comfortable with it, and now that Margaret has gone, I wonder what Fedema’s future will be here. I’m quite certain Ken will want to keep her on, possibly as his own primary carer. But how long will it take for her children to be legally able to join her? The original employer contract stated two years, and Fedema has met the five-year requirement of the department of immigration for a ‘family reunion’. I wonder, too, if Fedema does succeed in getting them to Canada, whether they will ever feel at home in this strange and very different culture. Will they have been permanently scarred by the years of separation and by their father’s sudden death?
I wish I had a magic wand!
On Monday, miraculously we manage to get Margaret’s body to the last ferry of the day, with just twenty-five minutes to spare. I even manage to write and send off the obituary.
Unlike in Australia, where a newspaper obituary is usually written by a member of staff, in the local Times Colonist anyone can have an obituary printed – at a price, of course. The larger the obit the more it will cost, so I decide to keep Margaret’s life story short and sweet. In any event I’m quite certain she would have hated anything long-winded or obsequious.
And although I know Margaret was absolutely opposed to a funeral, I see no reason why we shouldn’t have a gathering of friends and family at the farm. I can’t tolerate the idea that she can just die and disappear without a trace. She loved a good party, and I’m determined to give her one, even though Ken is a bit dubious. He doesn’t think many people will show up, as Margaret has been retired for nearly twenty-five years. He’s wrong.
A few days before I am booked to leave for Australia we organise a high tea with cake and scones, champagne and canapés. The farm’s packed to the rafters with friends and family, work colleagues and neighbours. I realise this gathering is probably more for my benefit than for Margaret, allowing me to celebrate the life of my sister with the people who knew and loved her. It’s a necessary part of my letting go; acknowledging that I will no longer be needed to sit at Margaret’s side.
I haven’t been back to Vancouver Island since Margaret died. I kept in touch with Fedema, who stayed to care for Ken until he too died some two years later. It took Fedema nine years in total to wade through the red tape and bring her four lovely children from her home town to Canada. By this stage they were in their teens and the adjustment period was lengthy and at times very difficult. Now, I am pleased to report, they all seem very happy (and grown up). I have very fond memories of those years staying with Margaret, Ken and Fedema even during the difficult stages of Margaret’s disease. I loved Margaret’s friends and Ken’s extended family and I hope one day to return and catch up with everyone.