When my mother was diagnosed with Alzheimer’s, I had the good fortune, as a storyteller and dabbler in the arts, to be able to give up poorly-paid work and move into a kind of early retirement … albeit with an elderly dependent. Swapping poverty for poverty, not too hard! The rational was that we (my partner and I) would move in and care for Mum while her brain still lived at the same address as her body, in order to make the most of these precious years, much as some people decide to devote time to their children’s early years, only in reverse. Luckily Mum’s disease has progressed very slowly and in a benign way, and we now find ourselves in a four-generation “compound” with family living next door and a rainbow gate connecting the two houses.
As we see the gentle decline in Mum’s memory and awareness, so we also experience the grandchildren leaping ahead with new knowledge and skills, and are blessed with many moments of intersection e.g. her ability to read picture books meets their need to snuggle and listen. Not rocket science nor unusual in many cultures, but I guess I want to make a pitch for the value of getting off the omnibus sometimes, even if the stop is not the one you had in mind!
And not to be Candide, there are many grievings for the parent you once had, as well as frustrations and repetitions and repetitions and … well, that’s just the nature of the beastliness! However, reading and writing have been huge in my repertoire of coping strategies and sometimes I wish that in all those worthy studies and research projects about living with Alzheimer’s it was compulsory to have a poetry/art section whereby participants can express their world in ways other than the standard interview questions etc. I know that would be the first page I would want to read! To this end, I would like to share some of the writing that has emerged from our experience living in the A zone.
It is traditional, at a royal birth, to give fairy gifts. Intelligence, Beauty, Wit, a Sweet Voice (but loud enough for the servants to hear), Charm, Cunning etc. Ah, but at this birth Malzheimer, the uninvited fairy blew in on a wild wet-mouthed storm. Her gift was one of Memory … that would be totally lost at the age of 18 with the prick of needle, and a plunge into nothingness. Mwa hahahaha! She swirled off into the blackened sky.
When the dust had settled, the acrid stench dissipated, another fairy flew in, her wish still in the wings. Scriveena, always late, somewhat dishevelled and possibly dyslexic (she had the time wrong, again!) could not undo the tangled DNA. But her powers allowed her to reverse the age to 81, and for the sudden plunge to
become a pudding sponge, one that takes a very long time on a gentle boil. And the needle? Well there was nothing she could do about that, because old people need their flu jabs, and while ridding the world of pricks is a noble ideal, it’s not exactly practical!
So the years royalled by, the Princess/Queen/Queen Mother adored by all for her intelligence, wit et al. And her superb memory allowed her to help Scriveena record the stories and songs that make a person and a culture who they are. Spieling and spelling together, they made a formidable team and by the time the royal Matriarch was 81, her whole life was captured in a net of words, paintings, music and muscle-memory. So that when the Alzheimer’s kicked in, as was decreed in her destiny, her decline was indeed gentle and sweetened with a confiture of story.
Hurrah for Scriveena, scribble on sister!
Winter Is Icumen In
“Look at the trees” tumbling
Into warm autumnal tones
Crimson, russet, amber voices sing
With crisp brown edges
A choir of cannons Look! Look! Look!
“Look at the trees” flying
Fluttering foliage fumbles
Trying to catch my drift
Oh dear my dear
“Look at the trees” changing
Hue never know when
A sudden cold snap, synapse collapse
And memories fall free
Paper pennies from heaven
“Look at the trees” gyrating
Mutating, twist, turn, dark words fly
Migrating to another hemisphere
“the trees Look at” empty sky
Vast. Immense. Brain blank.
Save for a flotilla of up-floating leaves
The past is passed, the future fraught
Let us live in a golden present,
“Yes!” I say “Look at the trees!”
… “summer is around the corner my dear”
Alzheimer climate change
It’s all in the eyes
Shut them and you will see
A snow-white bird on a bold blue sky
Dipping and diving, swooping and soaring
Bead-black eyes bright with hope
Open your eyes!
See the draggled bird
Coated head-to-toe in slow
Thick Exon oil
Unaware she struggles
To fly the skies, her rightful dominion
And still her eyes shine tight
Its all in the eyes
Bird handlers take note
In order for your eyes to be truly open
You must keep them shut.
True story! One of the first things Mum did on arriving in Dunedin, walking past a scrubby section …
Four leaf clover haiku
White hair golden smile
She finds four-leaf clovers
Where the grey stones grow
Kaitrin McMullan lives in North East Valley, Dunedin (New Zealand). She is known around town as a storyteller and puppeteer. She also scribbles from time to time, mostly for her grandchildren, but has been published in the now defunct New Zealand School Journals as well as Poems in the Waiting Room and a children’s book. Her website is here.