Judith Lowe helps her children look past their grandmother's dementia to the person inside.
"We don’t want to go there again." My heart sank when I realised my children were actually frightened of visiting my mother in her nursing home. Not surprising, as it is a secure unit for dementia, but sad, as I so desperately wanted them to have contact with their grandma, who lives in England. In fact, our trip from Australia had been planned so we could visit her.
While my children had met their grandma when she was well, it was too long ago for them to remember. What they now knew was that she didn't hug or cuddle them like their other granny, and that the noisy residents' lounge was a strange and bewildering place. The care staff were kind, supplying juice and chocolate biscuits, but my little ones clung to me as other residents tried to touch their hair and shouted disconnected sentences.
Mum was diagnosed with early-onset dementia aged 65, and by 70 had progressed severely enough that my father could no longer look after her at home. This happened after I had moved to Australia, so it all seemed distant to me at the time. My sisters in the UK chose a wonderful care home for her, visiting regularly with their children – I had never appreciated the difficulties this involved. Unfortunately, with the increasing age at which our generation is having children, and the rising prevalence of dementia, many more families will face this kind of situation in future.
The easiest option would have been to find a babysitter while I visited my mother alone. However I wanted my children to get to know her, and to understand that she had moments of clarity. She also benefited from seeing them. On the last day when they stroked her hair and I hugged her tight, she whispered, "Come back".
I was at a loss as to how to remedy the situation, when my sister came to the rescue. We talked with my children about Granny Jean's illness and gave them activities to do when we visited, such as brushing Granny's hair, massaging lotion into her hands, feeding her soft pastilles to ease her dry mouth, drawing pictures to remind the staff how loved she was, and simply curling up next to her on the bed and sharing the cuddly toys she now held so tight.
My sister scoured the photos at home and produced personal books for each of my children, briefly explaining Granny's life and illustrating areas through which they could relate to her, such as her love of animals, her childhood as a wartime evacuee and her full and productive life as a doctor, wife and mother. We still read these together regularly, and plan to create updated versions in a couple of years to match my children's changing developmental stages and understanding.
Our experience also led my sister to write a book about Granny Jean, which describes the events leading up to Mum moving into the nursing home, and visits by my sister and her young daughter. Reading the story to my children has been so valuable in helping us explore our feelings about the situation through the characters, opening the doors of communication about this sensitive issue and providing some reassurance that other people survive similar difficult situations, too.
My children haven't faced the grief of losing a grandmother they had known, but I still wanted to bring about a clearer understanding of the fullness and depth of my mother's life and personality, so the frail figure in the nursing home wouldn't be all they could remember. I feel I have succeeded, and it is a positive outcome of what could have been an overwhelmingly sad situation.