“Will Granddad forget who me and Finn (the dog) are?” A question my son, aged about 14 at the time, asked me about Dad not long after he received his diagnosis. “I hope not” I answered “but if he does he will always know you in his heart.”
It’s been a few years now since it became clear Dad was becoming uncertain of who I was. Me and my son were staying with Mum and Dad. Dad had been uptight and went to bed earlier than us, I nipped upstairs and called into his room “I’m just nipping to the bathroom Dad.” My mum came downstairs a while later and said “Your Dad has just asked ‘Who is that woman calling me Dad?’ .” We all cried – I suppose I had doubts for some time that he always recognised me but this incident felt a very harsh confirmation. My son was devastated, he was old enough to understand if Dad did not recognise me as his daughter then he would not recognise his Grandson, it didn’t need to be said and who knows what he made of the dog?
And yet over time I have just had to adapt to this new reality. Another occasion proved a turning point for me and my communication with Dad. I was visiting him in the residential home he now lives in. I was telling him all about my recent holiday at the coast. “Dad we’ve just been away to the coast” … Frown… “You know the beach we walked on the sand, paddled in the sea” … Frown… I thought he was trying to recall the coast so turned up the description “We watched the gannets, you know those sea birds with the big wingspans, diving into the sea for the fish.”
Frown… then he said quizzically “Dad?” I had to laugh once I had worked out our miscommunication. He must have been becoming more and more irritated with my increasing descriptions of all things coastal, when he was clearly trying to work out who this over-talkative middle aged woman was calling him Dad. “Yes Dad, I’m Jane your daughter, the daughter you had with Eileen your wife.” No recognition, just puzzled amusement … “Oh dear” I said “Have a just invented you a family you didn’t know you had?” “Yes!” he chuckled but I felt the unease and discomfort as if he were trying so very hard to make sense of the situation. It was from then I have called him by his Christian name most of the time. It is a name he is familiar and comfortable with. It feels slightly odd for me but I feel it does not confront his reality so harshly. I’m not sure if it’s the ‘right’ thing to do but I think it’s ‘right’ for Dad, it may change in the future but that’s where we’re at in the present.
It’s hard for me to accept that Dad no longer recognises me as Jane his daughter but we still have a connection. I know he likes me, I think he finds me amusing quite often, I’m certain he feels safe when I’m around – I think he knows me in his heart. All of these things feel more important than presenting Dad with a term he finds bewildering and unsettling.