Navigating loss

(The story contains sensitive themes of grief and loss)

I wake up to 39 messages from our family WhatsApp and a series of horrific pictures of our elderly mother. I am always out of step with my three English siblings, seasonally, culturally and through untimely contributions to WhatsApp threads. I had missed their weddings, the births of nephews and nieces, the deaths of grandparents and other important family events, but had accepted that was the price I had to pay for living in Australia. I had regrets, but did not feel it viscerally. My mother and I would exchange letters most weeks and she had visited us several times.

The first time I became acutely aware of the distance I lived from my beloved family, was when my father died fifteen years earlier. I did not attend his funeral. I was in a busy job, a primary carer for two teenagers, and studying. Money was tight and used for paying down our mortgage at a time of extremely high interest rates. It was difficult to process my complicated grief. Whilst the rest of my English family had moved on, I felt a curious sense of unreality. I kept seeing his face in strangers. At my next visit home, I undertook a deliberate pilgrimage with my mother, visiting the places where he had spent his final weeks, including the hospice, funeral parlour and the church where his funeral had been held. Lastly, his grave. It was decorated with scarlet geraniums. I burst into tears.

My 12 year old son and I had visited the family home in rural England, some months before my father fell off his perch. We took a taxi from the train station, the final leg of a thirty hour journey from our Melbourne home. Travelling in economy is never fun, but at least Harry was able to entertain himself and had no trouble sleeping in the uncomfortable seats. A far cry from a trip we had made when he was a toddler. A bemused flight hostess found him wandering around the first class cabin, when exhaustion had got the better of me. The sedative I had administered unfortunately had a paradoxical effect, increasing his already challenging level of energy.

My father opened the front door. It was three years since we had met in person. Not one to engage in small talk, or unnecessary physical gestures, his first words were:

“I want you to come up to my office.”

“OK Dad. Can we just bring our cases in?”

“You can leave them in the hall.”

“Harry, say hello to your grandfather.”

“Hello Grandpa.”

“Hello Harry. You can go and play outside. It is a nice sunny day. There are toys in the shed near the fishpond.”

“Thank you Grandpa.”

I follow my father up the open risers of their wooden staircase, wondering where my mother is. For a man in his mid-eighties and with a chronic back injury, courtesy of a nearly fatal accident that invalided him out of the Second World War, he is surprisingly nimble and shuns the banister. The old green phone with its rotary dial is visible through the treads. The carpets on his ‘office’ floor are very worn. Photographs take up much of the space on the walls, many in black and white with edges curling. An old word processor rests on a side table. It is one step up from an electric typewriter. I wonder whether anyone except my father uses them nowadays.

“Take a seat.”

I sit on a chair covered in cracked red leather that is held in place by buttons. I think it belonged to my grandfather. My father sits behind his enormous oak desk, also inherited from his father who was fifty when his youngest son was born. Grandpa was born half way through Queen Victoria’s reign. He became a father and grandfather on the same day in 1919. I can just remember meeting him.  My father carried a lifelong resentment being the youngest, and subject to bullying by his older siblings. The generations are messed up in my family.

“I want to tell you about my funeral arrangements.”

Tears start to well in my eyes. This is really too much. I bite my lip, remembering all those times as a child when crying was considered to be a great weakness. How my younger brother got all the attention. How being the oldest meant playing a large part in raising my siblings when my parents were too busy with other people’s sons. How the unspoken words around my decision to travel to Australia in my early twenties and remaining, have informed every other interaction since.

“My instructions cover ten pages. I’d like you to read them. Mum’s arrangements are at the back.”

There had been a time when I was close to my father. I had come home from school one day, at a similar age to my son, to find him lying unconscious at the base of a large tree. His leg had gone through the wall of the shed. A circular saw was beside him. I thought he was dead. I dumped my bike and ran and hid in one of the family cars. I was probably there for hours before one of the senior boys from the boarding school we lived in, gently opened the door and helped me out.

“Time to come inside Sarah. Your father is in hospital, but he is okay. How about I get you a warm mug of cocoa?”

I never forgot Robin’s kindness. I was shocked to learn, some decades later, that he had been killed by an out of control car, whilst walking with his wife on their annual holiday.

“What do you think of the document?”

Dad’s voice penetrates and sounds impatient.

“Very comprehensive. Why only two pages for Mum?”

“Things are more complicated for me.”

“I would like to have another read later in the week, to take it in? Where is Mum?”

“We didn’t know what time you were going to arrive. She has gone to the market.”

Is this a rebuke?

“I think I can hear her.”

I get up and go over to the open window. Mum is wheeling her shopping trolley down the long gravelly drive. Her back is very straight and her tartan wool skirt falls to mid-calf. I have never seen her wear trousers. Her “sensible shoes” are laced and her dark blue anorak, possibly purchased from a charity shop, is zipped at the front. She is wearing gloves and I wonder whether she still gets Raynaud’s disease. A phenomenon I seem to have avoided, but have passed onto my daughter. She is slim, fit from gardening and walking, and youthful looking for her age. She has stopped to speak to Harry. She waves. I am familiar with her routine. Soon after arriving she will need to record her exact expenses in a little book ruled up for that express purpose and given to her by my father. She has done this for fifty years.

“Thanks Dad. I will talk to you later.”

“There’s no need to come back from Australia for my funeral.”

Six months later, I receive a phone call from my younger brother.

“It’s over.”

My feelings are conflicted. To my eternal regret I miss the funeral. My grief is complicated and out of step with my siblings. I should never have listened to my father.

Fifteen years later, my now elderly mother collapses on the floor of her retirement home overnight. The walls of the listed 19th century building are very thick. She spends ten hours calling for help before she is discovered by the warden, incontinent, very cold and confused.Her emergency pendant is hanging over her bedpost, tantalisingly out of reach. She had a habit of taking it off at night not wanting to disturb anyone if she accidently rolled on it.

An ambulance takes her to the same hospital and to the same ward where my father spent a degrading few weeks before he died. Patients are segregated into Covid positive and Covid negative. Luckily my mother is in the latter group, but it makes no difference. Visitors are forbidden. Clean clothes have to be left in the Reception area. My usually positive and active mother has to cope alone with a major stroke that has left her paralysed on the left side. I manage to phone her from Australia. A nurse picks up the phone and hands it to her. She tells me she learned all about the families of the paramedics who took her to hospital. She enjoyed the trip as the residents had been trapped in her retirement home during the epidemic, with any visitors the other side of shut windows, making conversations almost impossible. She laughed telling me how a nurse nearly split her trousers whilst bending over to attend to her. I wonder about the effects of the stroke on her emotional lability.

Two months later she is admitted to a nursing home. Considering her physical deficits she is remarkably cheerful. We agree that I will phone her twice a week at the same time of day, on Wednesdays and Sundays, on the landline next to her chair. The agreement is to give her some certainty and control over her life. She has never learned to use a mobile phone or computer as she hates technology, and she can no longer write letters. Luckily her speech is not impacted.

               “Lovely to hear from you darling! How are you all?”

               “I want to hear how you are Mum!”

               “I’m settling in well thank you. I have met two charming older men and we sit at the same table for our meals. We laugh a lot about our shared stories.”

               “That’s so good to hear Mum. What is happening with your leg and arm?”

               “Unfortunately my leg is very cold and swollen, particularly the foot which the staff cover with a sock as I can no longer wear shoes. I can’t move it or feel it. My left arm and hand are unreliable. My right side is also weaker than it was. It is possible I have had another stroke on the opposite side.”

               “What do you mean?”

               “I keep knocking my glass off my table. I get pins and needles. The arm seems to move independently of my intention. I frequently slip off my chair onto the floor. The staff get me up either with a lifting machine or a horrible device like a turn table.”

               “That’s not good Mum.”

               “Its okay darling. No need to worry about me. I have a lovely room with a view of the garden and the distant Axe estuary. I can see little sailing boats. I have been watching the birds on the nearby rooves teaching their youngsters to fly. One day an enormous white bird visited the garden. I think it was a giant egret.”

               “You are always so positive Mum. I will ring you in a couple of days.”

               Twelve months later, still not permitted to leave Australia, I wake up to a horror show. A series of photos and short videos on WhatsApp. My mother is lying on the floor, parallel to her bed and about seven feet from her chair. It is a special chair characterised by a tilt in space function to prevent her falling out of it. It has been designed for her needs, and was very expensive. The staff were trained in its use but insisted on pushing it too close to the wall, compromising its recliner safety function. My brother put tape on the floor to indicate where it should be positioned. The sides of the chair are deliberately high to support her weakened core muscles and ensure she cannot fall from it. It has built in pressure relieving devices, an elevated foot rest and is designed to repel moisture. However, in a couple of images, there appears to be a pressure relieving inflatable cushion placed on it that should not be there. Could that have somehow propelled her out, or was there a more sinister explanation?

My brother and his wife had arrived early in the morning to find her in a large pool of blood that had soaked into the dark blue carpet. No staff in sight. She was moaning, her clothes awry, displaying a bare abdomen. She did not appear to be wearing a bra or vest or blouse under the cardigan on a cold day. Her left eye was enormously bruised and swollen shut with the swelling increasing. In the next photo of her being wheeled into an ambulance she appears to have shrunk. She looks terrified. My brother tells me she can no longer speak. The staff inform him and his wife that she must have tried to get out of her chair independently despite her paralysis. They claim no furniture was moved. That she was fine when checked less than five minutes previously. The next photos show my brother and his wife trying to work out how the fall could have occurred. The one thing we were all agreed on was that it was impossible for the incident to have happened as the staff stated.

As the eldest and with a background in health services management, I feel I am responsible for trying to find out the truth. There is nothing else I can do from such a distance. A series of letters starts with an initial inquiry to the senior levels of the organisation, to find out what happened. The story keeps changing. Responses are left to the last possible moment. Two of my siblings are invited to come in for an interview but decline. All trust has been lost.

My brothers and sister are supportive of me taking the lead. They feel intimidated by the residential home’s owners. The previously friendly frontline staff who are employed from overseas, appear to be avoiding them when they visit. They have concerns for my mother’s safety going forward. The one staff member who was the first in attendance before the ambulance arrived and gave them a different explanation to the official one, appears to have lost her job.

Our previously intelligent and beloved mother, has been catapulted into a form of dementia. My phone calls are no longer possible, except when my brother is there to facilitate video calls through his mobile. He holds the phone, but our mother does not understand and keeps looking at him with an expression of puzzlement. She does not seem to know who we are. At times she is almost mute. My brother tells me he will phone me later. We get no answers from the management team. We escalate our concerns to the highest levels, eventually writing to the Quality Council based in London. 

At the first permitted opportunity, in February, I travel to England. It is the worst month to visit as the temperature difference is around forty degrees. After leaving Heathrow I take an express train to a main London station. The train travelling west is fast and efficient, but then I backtrack east on a slow country train. My heavy suitcase is full of hastily packed winter clothes that smell of mothballs. I take a taxi to the nursing home. I put on gloves, a mask and apron that are located in the porch outside the front door. Five minutes elapse before a staff person opens the locked door. She directs me to the sign-in book and then a staircase.

“The room is on the right as you emerge from the stairwell.”

 My mother is almost unrecognisable to me and I to her. A carer is feeding her banana custard on a teaspoon. There are yellow blobs on her tuxedo-resembling bib.  A cup of viscous fluid, the colour and texture of treacle, presumably black coffee, appears untouched. The staff have been over generous with the thickening powder stored in a locked cupboard in her bathroom. That horse has already bolted.

In Mum’s bookshelves are poetry books by John Betjemin, one time poet laureate. Reading the poems out loud defines the subsequent pattern of our mornings. Since our father died she never stayed in bed after 5 am and the staff continue to respect her wishes. Each morning I arrive around 7 before the formal visiting hours. I have been given special permission as I have come such a distance. I have to melt the ice from the hired car windows. I travel about 30 minutes on unfamiliar roads carrying heavy traffic, in near darkness, praying there is no black ice on exposed parts of the road. It is deep in East Devon with narrow twisting lanes lined by tall hedges. I can only stay three weeks. Towards the end, Mum can speak one or two words, but our silences seem comfortable. I hope the rhythm of the poems is soothing. She is remarkably resilient, but we all wish that one night she slips away.

On the last day, I kiss her goodbye.

Three months later, my brother visits and finds her gone. He informs the staff. My siblings and I have a joint WhatsApp call with Mum lying peacefully in the background. It is surprisingly moving. We don’t think she would have minded, but she would not have understood the technology. It is wonderful that we were present together via this amazing 21st century way of communicating. It is agreed that her funeral will be postponed until I can return. I am very grateful. Unexpectedly, the occasion is a happy one. Most of the family are together for the first time in many years.

I continue to follow the quality inspections of the residential care home. Unsurprisingly, sanctions have been imposed with many recommendations relating to failures in safe care and treatment, care of residents and governance. The home has 12 months to demonstrate compliance with expected standards and is currently forbidden to accept new residents. I hope our experiences are not repeated for other families.