Dementia has become an epidemic in our society. This is a story about my mother-in-law Jean, but it is also the story of countless others in the same situation.
A CALENDER OF DEMENTIA
This calendar had become a lifeline in my mother-in-law Jean’s life. She carefully crossed off the days and used it as her personal diary. At ninety, death had stolen most of her friends, and dementia was now stealing her mind. As her notations suggest, life revolved around visits from myself and my husband (her son Rob) and a delightful young man called Nick, from Veteran Affairs. Nick’s job was to take her shopping, but her greatest pleasure was taking him out for lunch. She simply adored him. Despite the confusion in her mind, she always knew when it was Friday….Nick’s Day.
Sadly, the time came when her entire sense of logic began to fail. One day she rang me to say that the daily newspaper had been printed with the wrong date. It was almost impossible to convince her that the paper was correct, and that she was mistaken.
There is a mocking Australian expression, ‘He wouldn’t even know what day it was’, to describe someone completely stupid. It is hardly surprising that Jean became increasingly upset over her scrambled mind. For her, to remember the date was vital to her psyche; a fragile thread of normality in a world of increasing bewilderment.
You will notice that the calendar has the word ‘moving’ written on April 22. This was the day Jean left her beautiful Sydney apartment for residential care, fortunately just a few hundred metres away. It was a step she welcomed, fully aware that she was no longer able to cope. We considered moving her closer to us, in the Blue Mountains, but she has always been horrified by our choice to live ‘out in the sticks’. I don’t think she really believes we have shops here.
Jean has now been in her new home for 15 months. She is very happy there, and after some initial hesitation she now enjoys many of the social activities on offer. However, that battle with the days of the week has become all-consuming. In an effort to help, Rob bought her a watch showing the date, but she cannot associate a watch with a ‘calendar’. She also mistakes the station display on her bedside radio for the date, and makes a futile attempt to ‘put it right’.
The staff are unfailingly kind and helpful. If she doesn’t appear for a hair appointment, a social activity or a meal, they simply go and find her. But this doesn’t lessen her anxiety one iota. She has enough cognitive ability left to understand her deficits, and naturally it distresses her terribly.
Her once constant phone calls to us have dwindled to calls for help, ‘Hello, only me. Could you please tell me what day it is? It never occurs to her to ask a member of staff, or a fellow resident. Or perhaps she is just too proud and embarrassed to ask.
As the dementia progresses, her level of anxiety rises. Rob always leaves a few hundred dollars for her in an envelope. Last week he said casually, ‘I’ll have to give you a new envelope Mum, this one’s falling apart.’ She looks at him with frightened eyes and pleads, ‘ Oh no…..please don’t Rob, I’m used to that one.’ For some reason I find this so sad that I nearly burst into tears.
One day I take her some fragrant Daphne. I hope it will trigger a memory of when she grew it herself, years earlier. It’s fresh, citrus perfume brings the outdoors into her room. She smiles, ‘Oh, thank you Darling. I think I’ve been growing that here’, she says vaguely. Two seconds later she has forgotten the posy, consumed by worry over her printed schedule of events, and whether it’s Tuesday or Thursday.
Dementia also takes away the pleasure of anniversaries. Jean has forgotten all the birthdays of her friends and relatives….and even her own. For over thirty years a sweet card from her addressed, ‘To my Darlings, Rob and Pauline’, would remind us of our wedding anniversary, which we often almost forgot ourselves. Many of them were hand crafted from pressed flowers. They were printed with golden lettering after she taught herself calligraphy. Her final card was for our 35th, though she mistakenly sent a silver wedding anniversary card.
Yesterday she rang again to ask what day it was. She thought it was Monday. Rob told her it was Wednesday.
‘Oh, right. Thank you Darling… Wednesday. Have a lovely day. Did you say it’s Monday?’
‘No Mum, it’s Wednesday.’
I so hate dementia. What a cruel thief this condition is.
THE NEXT STEP IN JEANNIE’S JOURNEY WAS HER MOVE TO A NURNSING HOME, WHERE SHE MET A NEW, BUT VERY OLD FREIND. JEAN AND JOAN.
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