I have always believed you have to experience something personally before you can sympathise or empathise with someone. For instance, when I had my first baby, I couldn’t help but question the knowledge and advice being handed out to me by a midwife who had never given birth or for that matter raised children.
But having raised my children, I now find myself at the other end of the spectrum dealing with the closing years of my beloved father’s life.
None of my family imagined in our wildest dreams that things would end up like this. No one, or very few of us, think about our last years on this earth. Perhaps more people are now considering writing a Living Will but when my sisters and I were growing up, it never occurred to us that we would have to watch the slow disintegration of a parent, so we were in no way prepared for what was to come.
My father’s life has been so colouful with a short spell in the Parachute Regiment, a brief acting career, running a successful cafe and then joining the agrichemicals industry. He was bright, articulate, intelligent and along with those qualities he was very particular about his appearance and personal upkeep.
His decline was gradual to begin with. His GP said “oh yes, he is a bit dotty” when I expressed my concerns about his failing memory.
But from that point on the rate of descent into the hell hole of dementia increased dramatically with other symptoms starting to creep in including the inability to sleep, night wanderings and becoming confused and disorientated.
Things came to a head when his behaviour became erratic and unpredictable, at which point we had no choice but to place him in care. That was 10 months ago.
When I visit him, I am doing it out of duty because he is my father, but there is nothing familiar there. We can’t chat about ‘life’ or the latest news, the Olympics passed him by completely as did the Jubilee.
As a child I would use him as my soundboard for all my written work; often I would creep downstairs well after bedtime so my mother wouldn’t hear me and recite my poetry to him to see what he thought.
Then as I grew up I knew I could always go to him and talk about the major issues that were impacting so heavily on my existence; boyfriends, holidays, college life, you know the sort of thing. He was always there to advise, discuss, debate and argue with.
It was this level of communication, understanding, knowing I could talk to someone who knew just how I ticked that made our father/daughter relationship so very special.
But now when I go to see him, he sometimes smiles and says hello, although I don’t think he knows why he recognises me. I have to speak to him as if I am speaking to a baby who is just beginning to understand words, often repeating them slowly, sometimes having to think of alternative words that are more easily understood.
His smart appearance has become shabby and unkempt, the shirts and jackets replaced with a top I don’t recognise and his hair is dishevelled. He sits in a high-backed chair in his bedroom just waiting for the next event which is usually either medication or a meal. He of course has to eat what he is given, so the healthy salads and glass of water have been replaced with spoonfuls of cottage pie followed by apple crumble accompanied by a beaker of purple coloured drink. All the crockery and cutlery are plastic.
I try to be upbeat and talk about things, but it’s a struggle to get beyond the second word in any sentence before he loses concentration.
I leave, each time usually in floods of tears.
I make regular phone calls to the home and very soon became accustomed to their terminology: ” he has been agitated” is said more often than not and I know that means he has been awkward when they have tried to get him to do something. Occasionally he has become so frustrated and upset he has lashed out, even a skeleton has some strength.
The staff offer empathy, assure me he is all right, say they understand.
They don’t, they cannot possibly understand. They didn’t discuss the merits of a line in a poem, they weren’t there when I packed in my first boyfriend, they have no idea what I talked about when I was faced with problems at work.
They say they understand, but then that’s what the midwife said.
A final word, my father died on 26 September 2012: my mother keeps asking me “do you think he realised what was happening to him and that he was dying?”
Of course I always say the same thing, “No, not at all. Towards the end his brain would not allow him to think rationally, he had no way of knowing what was going on.”
But that’s a lie I tell her, every time; I lie to her because the truth is too awful to bear. The fact is he did know, he knew early on that his brain was dying; sometimes he would make light of it and joke about his ‘silliness’ but at other times, when he was able to think sensibly and rationally, he was so afraid.
When he was in the last days of being alive, he had exhausted himself with the fight to retain his mind and body. I watched my father die, first the death of his great and brilliant mind then the slow disintegration of his body.
No one is going to tell me that is the best way to say goodbye.