The morning of my 44th birthday I wake up to no breakfast in bed, no cards on the doormat, no presents and balloons. The morning of my 44th birthday I wake up at 6am, like every morning before it for three months. I get ready to take care of my mother, who has advanced dementia, caused by Alzheimer's. The morning of my 44th birthday, I wake up – in truth – feeling sorry for myself.
It turns out to be the best birthday I ever had.
With my eyes barely open, I gather the bedsheets – not the type you or I use, but the kind with the waterproof lining – from the washing line while coffee brews. The only other person in the house is my niece, and she was up half the night; I could hear her, next door. So she will sleep all day, like only teenagers can sleep.
I walk into Mum's bedroom, as I have every morning for three months: anxious about whether today will be a good day or a bad day. I want this to be a good day. It is my last day with her for a while. My sisters and I take turns looking after her and I won't see her again for a few months; I live in a different country and I need to get back to work. I want to feel more than anything that I am leaving her in as good a state as possible. Plus, it's my birthday. I need this to be a good day.
She is already awake, staring at the back of her right hand, held aloft in front of her face. Her own hands have become endlessly fascinating since the onset of dementia. As if she can't believe they are so old. As if she can't believe they are hers. She looks older in the mornings, when she is relaxed. It isn't the wrinkles or the bits of extra weight or the greying hair that make one look very old. No, it is a very particular slackening of the lower jaw that makes a formerly clever face look puzzled.
"Morning, Mum," I say in my cheeriest voice as I walk in. As soon as she hears my voice, the hand goes down, the jaw prepares for words, she turns her head and focuses on me. "Morning, Sleepy," she offers with a cheeky smile. My shoulders drop an inch, as a tension knot I didn't even know was in my upper back relaxes. She is together and cheerful. I can see she is in control of her body as she sits up. Limbs obey simple commands. Her occasional tremor isn't there. Her bed is dry. Today is going to be a good day.
As I give her breakfast, I decide to try my luck. "Do you know what today is?" I ask. "Today?" she ventures, playing for time, trying to make a neural connection that refuses to be made. "It's my birthday," I volunteer quickly, to spare her. Her mood turns on a penny. She is instantly tearful. This happens sometimes, on days like this, when she is sharp enough to know this is something she should have known, should have remembered, should have prepared for.
It is those moments of clarity, not the hours of confusion, that are the most hurtful ones of the condition. So I do what many dementia carers know how to do: "a reset". I reassure her until she is calm – it takes seconds – then walk out of the room, wait a minute, and walk back in. "Morning, Mum," I say with all the joy anyone can pack into a greeting. "Morning, Sleepy", she repeats with that grin. Her inability to form short-term memories – the thing that torments her – is also the thing that saves her.
As she finishes her breakfast, I feel self-pity circling me like a peckish tiger. I have learned it is vital to catch this feeling early and think it through quickly. Mum exists only in the moment. I am the only one who can infect our time with negativity. My sadness can become a feedback loop for both of us. So what if Mum doesn't remember my birthday? I remember it. I make a decision: I will make the day special for both of us. No good wishing for a good day when one can make it good.
So we make it a good day.
I call Anna – a patient and wonderful French hairdresser who does home visits. I abort the lunch I had planned and embark instead on Mum's favourite: a complicated dish of yuvarlakia – meat and rice balls in a white sauce ("snow hedgehogs" a friend calls them). Mum helps in the kitchen. And when I say "helps", I mean she places a stock cube on top of the sink tap, a ladle inside the fridge, and a peach in the bread basket. It's funny. We laugh and chat.
While I chop parsley, I tell her about the first birthday I have a vague memory of, my second. I wore a tiny suit, with a handkerchief folded up in the breast pocket. "Don't you look dapper," I remember Mum saying, but the memory is foggy. Is it real or invented? I can't know. One of the unforeseen consequences of your mother losing her memory is that there is no longer any way to check the facts of your childhood, to verify your early life. I wish I had paid more attention.
While lunch is cooking, we sit in the garden, among the flowers. I tell her about my eighth birthday, when I found a sparrow with a broken wing. I tried to feed it with a dropper, make a home for it inside a shoebox, mend its bone. It didn't last the day. I buried it in that same shoebox, in this very garden, a few hours later. I was inconsolable, but Mum held me close to her chest and explained that sometimes, when animals become too sick, it is better if they go to heaven, because god mends them. Will god mend you, Mum?
The two saplings we planted as a memorial to the bird that day are now two rampant bougainvilleas, towering over us, their branches meshed into a seamless canopy. Like our lives, they've grown together organically, randomly, messily, over many years, inseparable and symbiotic, making it impossible to distinguish where one ends and the other begins. Where do our parents end and we begin?
After lunch she has her hair cut; a beautiful, boyish, Audrey-Hepburn-in-Sabrina style. I give her a manicure, then a pedicure. I am determined to leave her in perfect nick for my sister, compelled by the same sort of urge that makes one spring-clean before important visitors. Subconsciously, I am terrified my sister might think I haven't taken good care of her.
We sit in the living room, the one we used to call our "good sitting room". The sofa used to be covered in plastic. Plastic covers the sofa again, but for a different reason. This is the room we used when people came to visit. Good friends, who rarely visit nowadays. How busy people get when one is ill...
I tell her about my 13th birthday, when I had my first party. We cleared all the furniture to the sides and put nibbles and drinks on a table down one end. My schoolmates and I danced to "Another One Bites the Dust", "Don't You Want Me", and "Down Under". Later, Mum left the room and I had my first slow-dance to "Every Breath You Take" with a girl named Katerina.
Mum is fascinated by every detail. My birthday history unravels before her like a mystery film in which she starred long ago. She asks questions. I answer. She asks the same questions again.
And then my niece walks in, bearing a cake she baked me. It's her first. That's why she was up half the night. It has a big "A" inside a circle, both drawn with squirty cream. We plop a thick white candle in the middle and light it. To an outsider it may look as if we're celebrating anarchy by lighting dynamite, but there is a poetic symmetry to the next generation unexpectedly taking care of me.
They sing their wishes. The Greek birthday song ends with the sentence: "May you grow old and spread the light of knowledge / May everyone say: There goes a wise person." It is a comforting lie, a best-case scenario.
Before Mum's bedtime, I give her a bath. Blissfully, inhibitions are often the first thing to go with Alzheimer's. Her inhibitions, that is. Mine took a few bathtimes to vanish. I wash her hair, just like she used to wash mine, in that same bathroom. I kneel and she stands, so I can wash her below the waist. She plays with my hair, twirling my curls around her index finger. "How black it is," she says, "just like my husband's."
Here I am, cleansing the very abdomen from which I came 44 years ago precisely; the torso which grew me from seed, the breasts that fed me. As the water cascades down her beautifully, ironically young skin, tears start rolling down my face. Today isn't just my birthday. It is hers, too. Today is the anniversary of a day that shaped both our lives. I was born as her son and she as my mother.
A sense of peace and cosmic wisdom enters my body; a sudden sip of sweetness, like communion wine.
I put her to bed and tell her the story of my 40th birthday – when the entire family came to visit me in London, saw me on stage together, for the first time. The last time she was truly well. Amazing to think how healthy she was then, still; only four years have passed. Amazing to think how insistently we fooled ourselves with "old people are forgetful" back then. How proud she was of me that day. This has been the most surprising and the keenest loss: I have nobody to disappoint or make proud any more. Not in that way. To whom do I run now, with news of my defeats and victories?
In a rare moment of absolute clarity, she turns to me and says, "I raised really good kids, didn't I?"
"Happy birthday, Mum," I respond. I kiss her on the forehead and turn off the light.
Want to read more from the Carers' Issue? Shane Burcaw wrote about the hilarious and incredibly awkward realities of being cared for by loved ones. Tom Chivers pulled together 11 charts that show how care will evolve in the U.K. over the next several years. Alex Taylor-Beal and Stephanie Crack talked about the change in their relationship when Alex became Stephanie's carer after she was diagnosed with multiple sclerosis in her second year of university. Halima Ali collected some of the secrets people caring for loved ones never tell you.
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