Dementia awareness month

In the beginning

Once upon a time there was a lovely lady. In her early seventies her brain started miss-firing. She began repeating herself, she forgot how to start her car and took her dog’s medication instead of her own. 

Portrait of Anne in Fremantle for Dementia awareness month
My mum, Anne

During her earlier life she had read widely, travelled extensively and was a very kind and caring person. She ate healthily, practiced yoga regularly for years, loved gardening and spent a lot of time visiting friends. She was married for 44 years and had two daughters and three grandchildren. Her symptoms of dementia  became unmistakable a few years after her husband died and so began the slippery slope into confusion, agitation, desperation and fear. Despite her deterioration she worried that she was a nuisance. She longed for the security of family or friends and she knew that her constant mental fog was an anomaly that robbed her of getting back to some sense of normality. 

Today she lives in the dementia wing of an aged care facility where she is well looked after. Her sense of humour remains a delightful beacon of her personality, as does her caring nature, her penchant for playing with words and her love of singing.  And her unwavering love for her friends and her family. 

This is my mum, Anne. As she looses words to narrate her life, we are filling in the gaps with photographs.

Negotiating Covid lock-in

We have been lucky here in Western Australia. As Covid swept onto our shores the residents at Anne’s home were locked in for only 8 weeks or so. Mum spent her 80th birthday inside. The staff arranged a lovely birthday cake and send us some photos of mum smiling. We had a video call with her and wished her happy birthday but she became distressed and walked away from the iPad, mid-zoom. 

As the doors re-opened I could visit for 30 minute, twice a week. The first time she looked up at me as if nothing had changed and said, ‘hello love, it’s good to see you. I’m so lucky you visit me so often’. Silver linings!!!

On her first trip back to our house she knew it had been a long time since being ‘home’. I asked Anne to model for a lighting style I was trying to work out. She always obliges. She likes being photographed. It is something we can do together without needing to talk too much, which is becoming harder. Anne has no problem talking, per se, but cannot remember what she wants to say nor seems to be able to think of anything to say. Conversations are very short and transactional. 

Later, once Anne was back at her place and I was editing her photo, enlarged on my screen so I could erase a blob of tissue stuck to her jacket, I could see a tear rolling down her face—frozen by the click of my camera’s shutter. I hope it was a tear of joy. Or just an allergy-induced leaky eye.

Good days

Some days are better days. There is energy and lightness and a few laughs up for grabs. Last Saturday I collect Anne in the morning. We stop at the Deli for milk and a newspaper on the way home. We haven’t visited the Deli for a long time. Since she moved into a home (Feb 14th, 2017) spending Saturdays with us was the norm. We always stopped at the Deli. She would go in solo—a last bastion of independence—buy the papers possibly some milk, maybe a packet of biscuits. As the seasons came and went her abilities flickered, intermittently on and off like a  light bulb. Sometimes just minor aberrations that restored themselves, lingering tantalisingly longer than anticipated, yet invariably turning off again. 

I began to check that she had money, dropping coins into her purse as needed. I started having to watch when she came out of the Deli as she couldn’t always recognise the car and would walk off down the street. Sometimes she was just too tired to go in, so more frequently she would sit in the car and hand me her purse—always keen to pay. So, this Saturday I park in front of the Deli. Anne rummages around in her handbag—traces of habit kicking in—trying to find her wallet. Instead she pulls out a bottle of ‘Mum’ roll-on deodorant and hands it over to me. “Here you are, lovey”, she says. “That should be enough. Maybe get the kids something naughty”. “Last of the big spenders, Mum!”, I say. She wags her finger at me and says “There’s no pockets in a shroud, Mand! You can’t take it with you when you die!” I am left with an image of  an apostle-era figure, wrapped in a shroud, pockets all over, with bottles of Mum Roll-on sticking out the top of each. 

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