Last week, my mum was 93. She wouldn’t know that, but I do. An only child, I’ve been alive for about half of those 93 birthdays, and I wish I’d paid more attention. I wish I’d taken more photos in the pre-digital days when she still looked like herself, recorded more of her voice, but we didn’t make much of a fuss back then. Until my early twenties, there were three of us, mum, dad, and me, going out for a meal or to a show. Then he died. So it was just mum and me, keeping up the rituals.
There were cards, of course, and presents. But I didn’t know I’d need to remember for both of us – not the special occasions, but the precious ordinary days whose passing they marked.
This is 2006: the last holiday we took together for mum’s 80th. We were lucky with the weather, a week of Indian summer on Anglesey. I love this photo of us, full of warmth, the light still there in mum’s eyes. She’d had her hair done to go away, something that had been important all my life – never an “old lady” shampoo and set, a modern choppy cut & blow dry that kept her looking more “with it” than her 80 years. I’m so glad we had that last hurrah.
But it wasn’t an entirely happy trip. She’d been in highly paranoid mood with me in the preceding days, almost refusing to come. The morning we’d set off on the long drive up to Wales it had taken me hours to get her ready, with the minimum of clothes packed in her suitcase. I’d had to find socks and underwear for her at the last minute, because she hadn’t thought to put any in.
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| A boat trip, in her favourite blue jacket |
One night we had enjoyed a meal in a restaurant when she suddenly grew agitated, asking loudly, “Who’s that woman singing?” It was Ella Fitzgerald on CD. Mum, however, was convinced that she was there, singing live in the room - and she wasn’t much cop. “She’s singing off key!” Somewhat embarrassed, I asked for the bill, and mum insisted on paying, leaving a twenty-pound note for the tip (way too much), which I just about managed to retrieve, thinking she’d probably had one too many glasses of wine…
I didn’t fully understand it then, but dementia had already rooted itself deep inside her, like Japanese knotweed, rapaciously colonising its territory. Most of that week we spent quietly sitting on the breezy seafront, soaking up the spectacular Menai Straits view; nevertheless, it was exhausting, being constantly alert to her unspoken reliance on me. When we finally headed home, I knew we couldn’t do this again – it was too much for me, on my own.
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| Always a sun-worshipper... |
There are no photos of the next few birthdays. Life became too tense. There was always something more urgent than recording the occasion, though we undoubtedly went through the motions. By that time, though I didn’t yet know it, mum had already begun to forget who I was, and our relationship became increasingly fractious. I didn’t want to photograph her then, when she had begun to look frail, empty-eyed, dishevelled (quite unlike her formerly well-groomed self), and sometimes, frankly, malevolent.
Her birthday in 2011 was a watershed: the first in care. The preceding months had been some of the most traumatic of our lives, and I finally had to find a residential care place for her. I was heartbroken, but she settled better than I had expected, perhaps somewhere inside relieved to have the twenty-four hour security that I could not provide alone.
She had only been there a couple of weeks by the time of her birthday, and I didn’t know what to expect. There would be some kind of celebratory tea, I gathered, but I was not yet versed in the ways of the care home, and decided to take her out for a pub lunch first, as would have been our old routine.
It was not a success. Mindful of the need to avoid driving anywhere near our family home, which I was having to pack up to sell, and anxious about getting mum back in time for tea, I found it impossible to relax or be upbeat. The rich steak pie I’d chosen gave me indigestion; mum could barely make a dent in her vast plate of ham, egg, and chips (chosen because it seemed the lightest thing on the menu). She spent most of the trip railing about a fellow resident. Back at the home, there was a cake – a beautifully iced cake, first of many – but I took no photos. It was all too rushed and stressful, too sad; not a day I wanted to remember.
2012: Mum was settled in the home and doing well. A fleeting glimpse of her in a pale blue jumper, blowing out the candles on her cake. Her hair, once so pristinely styled and religiously tinted brown as long as I could remember, is now white and unkempt, because she could no longer tolerate hairdressing. It’s the most blurry of images, snatched in haste, but I treasure it now, because it was probably the last time she was able to stand up and blow those candles out herself, even if she was in a tetchy mood.
2013: Another cake. I took a photo of that, but not of mum. I can’t remember why; she may have been unwilling to pose. At this stage, her moods could be very volatile; I’d have to catch her in the right moment of bonhomie. By Christmas of that year, she would be in a wheelchair; by spring she had forgotten who I was; and by her next birthday in 2014, she was bed-bound…
2014: the first birthday I really didn’t expect her to reach. When she had taken to her bed in mid summer, she had more or less stopped eating, drank very little, and had started to hallucinate vividly, often talking to a person in the wall beside her and complaining of a “man with a big, fat bottom”, and another in “clerical robes”, whom she saw at the end of her bed.
For two weeks I kept a vigil at the bedside, one day driving back to London when she had seemed to stabilise, and coming straight back (a 200-mile round trip) when she took a turn for the worse. At times, I had to call in the nurse to check if she was still breathing and to monitor the colour of her skin, so comatose did she appear in sleep. And yet, by her birthday, a couple of months later, she had rallied; still bed-bound, but eating and drinking again, articulate and capable of banter.
She’s smiling or laughing here, but not really looking at what's going on. At the time, I focused only on mum in this photo; but now I see I look pretty awful myself – three stone overweight with undiagnosed Type 2 Diabetes, brought on by years of comfort eating and drinking while coping with mum’s condition. Like many carers, I didn’t think to check out my own health; there was always something more important.
2015: another bed-bound celebration. I thought then that mum looked pitifully frail in bed, but compared to later years, she is relatively robust. It’s touching to see her looking tenderly at me, although it was only a fleeting moment and possibly deceptive in terms of her engagement with me.
Little did I know that a turbulent time was to come at the home, with a change of management and cuts to service. December 2015 saw mum hospitalised with a potentially fatal aspiration pneumonia (after she had been moved into a new room without my knowledge), and I found myself embroiled in nearly three years of subsequent strife with the provider. A terrible time.
Little did I know that a turbulent time was to come at the home, with a change of management and cuts to service. December 2015 saw mum hospitalised with a potentially fatal aspiration pneumonia (after she had been moved into a new room without my knowledge), and I found myself embroiled in nearly three years of subsequent strife with the provider. A terrible time.
Nevertheless, mum rallied once more, and, supported by caring staff, by spring she was well enough to be got up out of bed to sit in a chair and eat her lunch in the dining room. That summer and the next, we even had a few afternoons sitting out in the garden.
This is her 90thbirthday tea in 2016 – not on the day itself, as I had to be in London, but the next day. By this time, she had long forgotten the significance of the date, but was able to participate to some degree in the celebration - although she could not manage the creamy cake, needing to eat with her hands at that stage and unwilling to be fed.
Despite her detached look here, she's physically surprisingly strong; it's moving to see the attention staff have given to her hair and dress for the occasion. I’ll never forget their kindness.
Despite her detached look here, she's physically surprisingly strong; it's moving to see the attention staff have given to her hair and dress for the occasion. I’ll never forget their kindness.
2017 was much less happy. By then, the home was in crisis, having undergone several changes of management and a mass exodus of staff. Earlier in mum’s birthday week, I had been down to attend a public meeting between management, residents and families, at which various commitments were made by the provider.
I returned at the weekend for mum’s birthday, expecting at least a show of good intentions – to find mum still in bed at 1.40pm, the curtains drawn, having apparently been abandoned mid personal care by a new young staff member, who had never worked in care before and unsurprisingly could not cope unsupervised on her first day with the tough demands of a dementia nursing unit, under-staffed by 50% on that shift. She had fled the building and the job without telling anyone.
I had to go down and remonstrate with the deputy manager (himself new in post and over-stretched), before an experienced care-worker could be found to get mum up and dressed and bring her birthday cake up from the kitchen (another cream gateau that she couldn't pick up with her hands).
We are putting on a brave face here, but it was an upsetting episode for mum’s 91stbirthday, one that might well have been her last; you can see from my waxy complexion, puffy face, and skin lesions on my arms that I was actually quite unwell with the stress. Two months later I collapsed in a public place and was diagnosed with diabetes. It was the beginning of my recovery; I have since lost 3 stone on a low-carb diet and medication.
By the spring of 2018, almost all the familiar staff at the home had left. With continuity of care gone, I took the decision to move mum into a different home, where some of the old staff had preceded her. It was a risk, but once more I was heartened by her resilience. She’s looking a bit imperious here on her 92ndbirthday, but the atmosphere of calm order, with relaxed staff and another beautifully decorated cake, was a relief.
And mum’s 93rd, last week? Well, another episode of near-fatal illness in November 2018 has left her more impaired. It may have been some kind of stroke – it’s hard to tell, now that she is too frail for medical tests. She was not expected to survive that day, but has so far pulled through, nearly a year later. There is remarkable strength inside her, though she is less able to communicate nowadays – another tragedy for a former singer, teacher, and lifelong chatterbox. But I’m grateful she seems content. She can no longer pick up food with her one good hand and swallowing is more difficult; she mostly accepts being fed, and still enjoys cake, custard, ice cream.
So this was her 93rd: resting in bed, barely awake in truth – but still here. Still loved. You might think these photographs somewhat grotesque, an intrusion of mum’s privacy, as I would have done in the past. There is admittedly an air of desperation in my attempt to look upbeat alongside her obvious frailty (below). When I started this blog, I didn’t post pictures of her with dementia, as a matter of principle – I didn’t think she’d want to be seen like that and I too preferred to remember her as she was before.
But in the intervening years I have come to see that every day is still precious, potentially more positive than those to come, however hard it might be to discern those positives at the time.
Anniversaries are generally important to us all; and when someone has a degenerative disease, it may be all the more meaningful to mark the passage of time. Above all, I think it’s important to record the truth. This is the story of my love for my mum and hers for me (when she knew me) – and of dementia’s impact on us both.
Anniversaries are generally important to us all; and when someone has a degenerative disease, it may be all the more meaningful to mark the passage of time. Above all, I think it’s important to record the truth. This is the story of my love for my mum and hers for me (when she knew me) – and of dementia’s impact on us both.
So to anyone else on this journey I would say take photos, video, make voice recordings, at whatever stage of the road: mark the days, not just the special occasions - the everyday, the commonplace. One day, they will be your legacy.
