This is how I spent a few years as a teenager introducing myself to my Grandma. She was diagnosed with dementia in 2002, and by the time she was in a nursing home, she could only understand who I was by being prompted with a few “code words”. My way-in was to remind her of my association with the old public baths. My Grandma still had some recollection of me as the girl who always smelt of chlorine and wanted to tell her about the most recent competition; while my sister used to say, “I’m the one with the rabbits.” On one occasion, after her diagnosis but before the illness really took hold, my Grandma and Grandad came to stay at our house for a few days to look after the rabbits while we were away. According to my Grandad, she enjoyed sitting and stroking one of them (the nice one) on her lap. These small reminders – the swimming and the rabbits – shone a dim light onto my Grandma’s failing sense of recollection and recognition, and for a brief while she was able to grasp a vague notion of who we were.
I thought about my Grandma last night as I was sneaking some chocolate out of the kitchen. (Some people my age have emigrated or had children, I’m still stuffing Quality Streets in my pocket to get past my mum.) In my head, I heard her say, “Oh, go on, a few boils won’t ruin her supper.” She always carried sweets in her purse – ‘boils’ as she called them, which sounds like she was offering me a dose of the plague before dinner. I don’t know why it suddenly came to me then, as I haven’t heard that phrase for well over a decade.
My Grandma had a great sense of humour and a warm face. And she could talk to anyone – it used to be the embarrassment of my dad’s life as a young boy, the fact that his mum couldn’t make her way through the supermarket checkout without first extracting the life story of whoever was serving her. She moved down from Scotland before the War, but still had a strong Scottish lilt when I knew her. She wore bright colours and had wonderful shoes, made the best puddings, and let me turn up her Westlife CD really loud and dance to it in the living room.
She is so vibrant and alive in those memories, which is what makes the more recent ones even more poignant: her confusion as she looks at us all visiting her in the care home, aware that something is not right but unsure what ‘something’ is anymore. Sitting with her and repeating the same lines every ten minutes, because she has already forgotten who I am and what I’ve said. Eventually the blank stare, with no recognition; not even the trusty “code words” able to dredge up hidden clues as to who she was, and who we were in relation to her.
Eventually my dad stopped taking me to visit her in the care home. She was not the wonderful woman we knew anymore. Dementia had slowly, over an excruciatingly long period, stolen first her memories, and subsequently her personality, and ultimately her sense of self. Her appearance also changed – when I last saw her, she was very small and frail. Early on in the illness she used to go walking for miles. I’ve heard this from other’s accounts of their affected family members – it is referred to as ‘wandering’. A few times she got up in the middle of the night and walked into completely different towns and counties. My Grandad put all her details and contact numbers in her handbag, which she never used to go anywhere without, but soon she started leaving it behind. I think that was the point when it was decided that she would be safer in a care home, and would ease some of the strain these wanderings were causing my Grandad.
She kept that infamous sweet tooth for a while; my Grandad regularly used to provide her with multi-pack KitKats in the home. But otherwise she ended up eating barely anything at all. This was the woman who once flew to Moscow with a giant ham in her luggage, and to Switzerland with portions of homemade spaghetti bolognese, presumably not convinced that the people in these countries did, in fact, exist on what is commonly accepted as “food”. Her physical appearance started to mirror what was happening to her mind: she was shrinking away from us, into herself, and there was nothing we or science could do to reverse it.
Although my Grandma died a year ago, she had been gone much longer. Dementia doesn’t really allow the sufferer to die with any dignity, if you believe that dignity is maintaining a knowledge of and belief in who you are. My Grandma no longer knew who she was when she died; she had no recollection of having two sons; and she didn’t recognise my Grandad, who visited her nearly everyday she was in the home. It is a cruel and drawn-out process. I am glad that I still have my memories of her, in ways that I’m sure she would like to be remembered, and that, like the “boils” quote last night, they can crop up without me even consciously recalling them.
The mind can be great like that. But equally, as I saw in my Grandma, it can really suck, too.