Slowly, and then all at once
It's 6pm on a Sunday in the middle of September, 2020. 30 hours earlier, and despite his wife being about to give birth to their third child, my friend Richard has driven from the Cotswolds to collect me in Hertfordshire and roared up the motorways to North East Wales, so I can see my 86-year-old mum safely. Only a few days earlier she was discharged after 8 weeks in hospital, returning home with a diagnosis of multiple myeloma. And here she was, being stretchered into an ambulance to return again, the four-hourly liquid morphine failing to offset the pain or mitigate the weakness resulting from losing 1/7th of her body weight.
The paramedics explain that they're going to drive nice and slowly, as my mum's stomach feels unsettled. She asks why, though.
"They're going to take it nice and gently, as they have precious cargo on board, mum. That's what you do when you have something special and fragile to transport"
There's a beat. And then she lifts her head to address us, her audience; "I told her to say that."
One of them instinctively lunges towards me to catch me, as I almost fall over laughing.
Last Thursday, the 10th March 2022, marked my bright, funny, beautiful, and cheeky mother's 88th birthday. But I am sad to say that she didn't live quite long enough to see it.
My mum was diagnosed with multiple myeloma - cancer of the bone marrow, to be more precise - in the summer of 2020, with the added complication of a pandemic as a backdrop. Sometimes she remembered why she felt weak and had carers visiting 4 times a day; mostly, it lingered at the edge of her consciousness, and was a justification I had to gently remind her of. She slowly made good improvements after her hospital discharge at the end of October 2020; a fiercely independent woman who was still doing much of her own shopping until the arrival of Covid made it unwise, she was proud when she regained the ability to get washed and dressed unaided, pottering around her flat in sheltered accommodation and making herself cups of tea.
Her health dipped, plateaued, rose, and fell again. Bad days, when it felt like all was lost, were followed by days when she appeared to be invincible. After that return from hospital she was too weak to stand long enough to cook, so tiny frozen meals were sourced and delivered weekly, plus steady supplies of chocolates, cakes, and children's cartons of apple juice. She talked of her childhood (passing the 11 Plus by accident, not knowing what it was for, and thus dashing her hopes to go to the brand-new secondary modern), the birds in the trees fighting for the same branch, and how lucky she was to have a downstairs flat with a back door she could open.
I did what I could, at a distance, and hampered by my own chronic illness during a global crisis which left me shielding and without physical contact for half-years at a time. I operated through guesswork and intuition over what might be useful, what might be supportive, what might add a bright moment to her day, and relied on her friends on the ground who saw her daily to ensure that any needs I couldn’t know or anticipate were covered. As soon as my second vaccination jab kicked in, I was on a train to see her for a week in May 2021, with a plan to return again shortly; sadly, my own health spiralled downwards that summer, rendering me barely able to walk for months, with chest pains and a relapse preventing me from travel over the festive season.
I noticed that she seemed a little weaker during our phone calls since another health scare in November, and made plans to spend two weeks with her this March, travelling up to spend her birthday with her on the 10th and to accompany her to her next hospital appointment on the 18th – as she’d point-blank denied having any of the back pain she mentioned to me and refused the x-ray I’d requested for her, during her last visit on the 3rd of February.
On Monday the 7th, her care agency rang me, wanting to call an ambulance. She was in great pain, and couldn’t get out of bed. A paramedic attended a couple of hours later, by which time my mum was up, standing, and wondering what all the fuss was about.
On Tuesday 15th, her friend and sheltered housing warden Anita rang for an ambulance; she was doubled over with stomach pains, confused, and unable to get up from her sofa. This time the paramedics took her into A&E, where she was kept safe in an ambulance till midnight before being admitted overnight and discharged with antibiotics for a UTI.
I was finally able to speak to her on Thursday 17th, timing my call for when someone could pass her the phone. She sounded far better than any 87-year-old-woman who was recently discharged from an overnight stay in a Clinical Decisions Unit had any damn right to. I can’t recall exactly what we spoke about, except for Valentine’s Day, where we commiserated that neither of us had received any cards; “.. and I was VERY disappointed,” she dead panned.
I wish I could remember more of what we spoke about until that marvellous punchline, which had me holding the phone away from me as I was laughing so loudly. It was the last time that she sounded her usual self.
She stopped getting up and out of bed on Monday the 21st and, as the days of that week passed, the frequency with which she pressed the alarm button hanging around her neck – especially at night – intensified. She stopped eating. Occupational Therapists and nutritionists were called. Another paramedic was called. He kneeled by her bed and spoke to her for two and a half hours on Wednesday the 23rd. Doctors were called. Do Not Resuscitate forms signed. Her dignity guarded and lost, piece by piece.
Cancelling my promises to others, I brought my plans to visit forward by a week. And my friend Richard once again gave me a lift on Saturday the 26th of March.
When I arrived, she was still my mum. And also, she was fragmenting before my eyes. She asked me three times how long I had been with Richard (“He’s married to Christina, they used to take us out for Sunday lunches, I’ve only borrowed him for today, mum”); asked me how long I’d done care work and if I enjoyed it (“I started at 3pm this afternoon, mum”; and asked if we were related (“You look too young to be my daughter; are you my granddaughter?”)
But sometimes the pieces still fell into place. She admired my coat, asking me to turn around so she could get a better look; “When you’ve finished with it,” her way of giving covetous approval. She noticed that I was wearing an outfit I’d sewn myself, and looked at my midriff and pointed out, the way a child would; “You’ve put on weight” (“Thanks, mum!”)
She spoke about my dad for the first time in years, how they’d died a few years earlier, that they weren’t a good father and had seemed so gentle at first but could be so cruel; I explained, perhaps pointlessly, that my dad had been a very troubled individual and how “trauma that isn’t transformed is transferred”. She revealed that she was told in her mid-twenties that her endometriosis would probably prevent her from having children. But there I was, my mother’s daughter, scrabbling to take care of her for the last few days of her life.
Because it was a scrabble. Such a scrabble. My mum was falling so fast, so unexpectedly (her haematology team were shocked), that there were no measures in place to catch her safely as she fell. At a loss, I resorted to paying someone – a wonderful healthcare professional called Vicky, a friend of a friend - privately to support us. Trying to put things in place quickly enough was a game of catch-up which was painful to endure. Her lovely GP explained that hospice services had been cut dramatically over the last decade, so no support was available; luckily both he and the district nurses required to make a recommendation saw the toll of having barely two hours of sleep between Friday night and Monday morning took on me and my CFS/ME. A Marie Curie nurse guarded over my mum on Tuesday night, her last night on earth.
My mum hated making any fuss, and wanted to do things on her own terms. So it’s somehow fitting that she tried to leave while I was out of the room. I went to use the internet for 20 minutes, before Vicky was due to leave at 11am. I stopped to chat to a workman in the corridor outside my mum’s flat, a wall’s thickness from my mum, before I opened the door to her front door.
“Your mum’s breathing has just changed,” Vicky said. Her breaths, which had been like a little steam engine chugging away on our much-loved trips to Blaenau Ffestiniog, had fallen quiet. Drawn out. Intermittent.
On Wednesday the 2nd of March, within a couple of minutes of my return to her room, she was gone.
. . .
You learn a lot when you’re with someone for the last few days of their life. I would love to say that I had some great spiritual epiphany, some sudden insight into the nature of life, something wise and comforting to say that goes beyond the useful and true clichés of telling people that you love them at every opportunity, and to use things now rather than saving them “for best” (I have found so many things that my mum was saving "for later").
But everything I learned has been practical so far. Things like knowing the signs of someone entering the last phase of their life and how to make it more comfortable (advice from Marie Curie arrived through the letterbox an hour after she passed); discussing how you want your funeral with loved ones; making a folder with your will and all your affairs in a safe and obvious place; having anticipatory medications not just prescribed but despatched immediately from the chemist; buying supplies over the counter until the wonderful but overstretched community nurses can despatch them from their stores.
In the week and a half since she’s passed I have remained in coping mode, for the most part. The grief has lapped gently at my edges, my energies otherwise taken up with funeral arrangements (the woman doing her flowers had her first floristry shop on the corner of my childhood home and knew my mum), speaking to relatives for the very first time, and sorting out a flat full of furniture and possessions. As I painstakingly go through every item she owned like a tender archaeologist, discovering newspaper clippings about her friends, family photos, and important documents all tucked into random envelopes and books along the way, I uncover my own history, too; an erratically kept but nonetheless consistent archive of photographs, letters, cards, and photocopies of the things I had published over the years. This morning her friend Anita remarked “She was so, so proud of you, probably more proud than you ever knew.”
Perhaps this is why the loss of a parent is felt so profoundly; until we are a certain age they are our most unerring witness. In losing her, I lose a treasury of knowledge about myself.
And in seeing someone pass who I physically resembled so strongly (we have the exact same skeletal frame, complete with two faint moles on my left forearm replicating hers), I see perhaps my own future; a chastening prospect, indeed.
Her funeral is this Wednesday, the 16th of March. I've written a eulogy, which the celebrant will read on my behalf, and I hope to share a more personal tribute, if I'm able.
Because I am my mother's daughter, as I've said so many times in the last two weeks.
And I still hope to make her proud.