For people with dementia, it's increasingly hard to feel merry amidst the expectations and chaos of Christmas. Those who want to keep connecting with them learn to treasure brief random opportunities. Photo: Margo Pryde
With his brain running critically low on energy these days, my dear 76-year-old dad Tom is usually tired or restless to the extreme.
After he showed us last December that festive gathering is something he can no longer do, none of our family will be with Tom this Christmas Day.
But in late November we did get a special shared gift at the place he now lives - a care home in Dunedin for high-needs people living with dementia.
On an evening visit, for about an hour, my dad was able to relax and engage with four of us as much as he ever can these days, at a properly fun and spontaneous party.
"Theyre going to bring him down here? Well, that’s nice, hopefully" - Tom improvises a pleasant phone chat at our impromptu party. Photo: Billie Pryde
My mum Margo, sister Bonnie, 10-year-old niece Willa and I had made the three-hour car journey from Queenstown to the multi-storey retirement village where Tom lives for this visit.
At the reception we find something new and funny to check out on the wall - a photo series of residents' one-on-one encounters with a visiting lamb. Next to this is a good spot for our Where's Wally?-style scan of the white heads in the living/dining area for his specifically shaggy one.
We eventually find Tom at the end of a hallway, standing outside the locked door of the staff room. He is foggy-faced at this late stage of the day and wearing a khaki polo shirt and brown trackies that read LEISURE from the inevitably communal menswear collection.
Tom very much likes to feel that he's in charge but when he's willing to be led - as he is this time - we usher him into the Family Room, a haven that is both lockable and scent-free.
Into the small sparsely furnished room this night, we bring The Beatles Chill Out, which Willa dances to, BBQ Copper Kettle Fries and Coke. In a nearby closet, we find - as if left by party angels - a set of golden toy crowns and an unplugged, old-fashioned telephone.
Christmas 1991 somewhere in Southland or Otago. (Left to right - Margo, Bonnie, Billie and Tom) Photo: Supplied
Recently, when I mentioned Tom's name to him, he said: "What's she got to do with it?' But today, something happens when Bonnie hands him the heavy two-headed phone handle.
Unlike his eldest daughter, our dad was always beyond keen to pick up a ringing phone and give his full attention to whoever was calling. As a lawyer, that was quite often someone with an urgent and complicated problem they wanted him to solve.
On clasping the phone handle to his ear, "Tom Pryde speaking?" flows off his tongue just as it did thousands of times before cellphones. An imaginary conversation touching on a large money transfer, an interpersonal situation that needs delicate handling and the date of an important delivery then begins..
Now living in a world where other people don't make sense anyway, Tom has a clever workaround for giving himself a sense of conversational control. When he's feeling chatty, what comes out of his mouth are very natural-sounding sentences about the specific yet unrelated logistical details of an unfolding situation he's in charge of sorting out.
This self-scripting allows him to be part of real-time conversation and at the same time perform what seems to be his role of a lifetime. In improvised meeting-style sentences, he advocates for unity, tolerance, patience and compassion. I like to think these might be his core values.
Tom's days, from what we can piece together, are mostly spent scanning words, dozing, puzzling over objects - sometimes with his gentle-faced friend Ray - and trying, in his way, to sort out some of the people and situations he comes across.
When he has enough brain energy, he tries to make friendly conversation with whoever's around with a commitment to chat that is really impressive. Even the occasional grunt from a nonverbal tablemate is enough to keep him rolling: "Sorry I didn't quite hear what you said, really. Well, I sort of did but…. [on with the chat]."
Tom at Invercargill Middle School in the 1950s. Photo: Supplied
In 2021, Tom was diagnosed with a combination of vascular dementia and Alzheimer's. As hard as it is for our family watching him get sucked away by a kind of internal identity theft, for a good amount of time and in several ways the effects of dementia also brought him closer.
Superdriven by his passion for sport and service - which scored him an NZ Order of Merit - my dad was often, in Margo's words, "burning to get out the door".
When dementia took down his capability and confidence, he was grounded him at home. Stationed at the head of the kitchen table, often with an adult colouring book or The Southland Times, he was around.
The year before Tom's diagnosis - which happened to be when the world was locked down - Bonnie moved to Queenstown from Canada with Willa (then 5) and Kaay (then 10).
Our dad quickly grew close to Willa who arrived just as his conversational abilities were fading and his sense of humour becoming more silly. Without the changes to Tom's daily life and relational style that dementia delivered, Bonnie thinks their playful and loving bond could not have been forged.
I also feel like a side of Tom that is more tender and heart-centred was revealed by the effects of dementia on his brain. As it took out some of his Southern Man identity programming, he became more emotionally sensitive.
Because I'm quite that way myself, I felt newly seen by Tom. In his last years at home, we shared many chill hours together, doing our own things in parallel and listening to music. When confusion made him distressed, '60s & and '70s folk favourites were a medicine sometimes just as effective as anything else we had on hand.
This Christmas Day, although none of us will see him to confirm it, I'm going to trust Tom will feel that he's in as safe a place as any.
I hope on 25 December - if he has the energy - he'll relish some kind of pudding, add a line or two to some carol-singing and maybe play the in-house piano.
Last winter, the night before Tom left his own home to live in dementia care, he performed a single Beatles song in his more poignant post-dementia piano style.
I think its message is worth remembering at Christmas time, especially for families with a dementia-affected person in the mix. You guessed it. 'Let It Be'.
"He's funny now, he is less fussy and he eats things he didn't used to like" - Willa on her grandpa Tom's dementia. Photo: Bonnie Pryde
