Alzheimer’s is a wicked and vicious disease. There are no two ways about it. No life threatening, debilitating, wasting disease has any redeeming features about it, but Alzheimer’s takes the biscuit in how it gradually engulfs a person, a personality, and an individuals individuality with it’s silent attack on the stuff of memories, speech and recall; with its unrelenting impact on relationships, robbing not just the sufferer of themselves, but robbing friends and family of the person they knew. The person who gradually changes, gradually withdraws, gradually disappears. And finally can hold on no longer.
My father is in the early stages of Alzheimer’s disease. Well, I say early stages, but the signs and symptoms have been there for two to three years, yet defied diagnosis until recently. My father is still there though, and he is still self aware, so he knows what is happening, he can’t necessarily put his fears and worries into words, but he doesn’t have to – I can see it on his face, I see it in the old man shuffle of this once proud and upright man. He clings on to dressing himself well, yet even that is beginning to wane, and for a man that put appearances above almost anything, this demise is cruel.
My father was a practical man. I use the past tense, because he has lost much of his ability to fix things and do things with his hands. He must find that loss hard to bear, he is so aware of it that he has begun to clear out his garage-cum-workshop and give various tools away – tools that have been his friends for fifty years or more. Tools that I grew up with. I will probably keep them, though I have no clue how to use many of them, but it doesn’t seem right to throw them away – it would be like consigning my father and his practical past to the waste basket. The time is coming when he will no longer be able to drive, and that final bastion of independence will be the hardest of all for him to give up, he knows in his heart that it will be soon, yet he clings to the car keys like a talisman. A lucky charm that keeps him independent, that staves off the march of the time driven disease that attacks him. He holds on.
Yet there are positive moments. Moments of sheer clarity that shine through his confusion and forgetfulness, like a beacon to the man that he was – to the man that he still is deep down. My father has given me much advice over the years, a great deal of it that I have not agreed with, an awful lot of which I have gone against – and to be fair my decisions have not always been bad ones when I have chosen not to heed him. Last week though, he gave me some advice that is probably his best ever. Discussing my job, and how hard I work, and the fact that I am now in my fifties, he told me that he took early retirement at the age of fifty-nine, because he just couldn’t stand the rat race any longer, he had run out of things to prove, he had been successful, made his money, and at almost sixty years of age he didn’t want to chase the numbers any longer. He said to me “when you recognise that time is coming for you, put your financial affairs in order, do not ponder too long, and just let it go”. If you knew my father you’d realise how significant his words were, as he has never been one to obviously plan in that way, he is always caught up in practicalities and just “doing stuff”, so to express advice that is more about quality of life is quite unusual. And that advice may have come with regrets, you see (and if you read my very first post on this blog you will know) my father lost his wife in April 2014.
My father and I have discovered a new trust, a new way of relating to each other. While I, and my sisters, have to do much for him, he trusts us to do that. He trusts me in ways that I never thought he would, he trusts that we will care for him and make sure he is cared for, of course he fights tooth and nail if he feels we are doing anything that erodes his independence, but ultimately he has trust in our decisions made on his behalf. He still relates to me as his son, but we hug now, and he expresses his love more now than he ever has, he seems prouder of me now than at any other time of my life. Of course he gets angry, he gets stubborn, and he gets frustrated – but honestly, who wouldn’t?
Fortunately or unfortunately, depending on how you look at it, because of my profession I know much about Alzheimer’s, how it progresses, what the disease does, how treatments work (or don’t work). So I know what is to come, but I know that he will hold onto his self awareness as long as he can, though I also know that he will ultimately lose himself as the disease envelopes him. As we watch this uncomfortably unfold, we manage his life for him, and we hold onto those moments of clarity, wisdom and advice, just as we treasure family photographs as memories of happy times, we will cling to words as well, because that is how you hold onto the person in those photographs.
Despite what I know, I look for the positives as well as accepting the inevitability of his decline. Learned behaviours are often the last to be affected, so he can still teach us the basics of ballroom dancing, an echo of his and my mothers dancing past (they once danced on the TV programme “Come Dancing” in the 1960’s) – and we have a had a few laughs doing that. He practices the piano twice a day, an instrument that he has played since he was a young boy, and he can still read new music, we’ve played boule and his hand-eye co-ordination learned and developed in his county cricketing days is still there – I am the only one who can beat him – because as a youth he taught me to be an even better cricketer than he was.
So I still have my father. He’s there. Sometimes the best of him is buried beneath the fuzziness of the low moments of the disease. Other times he rises above the disease and we have more of him.
Hold on Dad, just hold on as long as you can.