For many and various reasons, it has been an age since I posted anything here. I’ve not been writing any Blue Jai’s Vignettes because I’ve been concentrating on editing my novel, and am glad to say I have only four chapters to go before that process is finished (for this run through, in any case). As any writer will tell you, the editing process can seem interminable, but it was necessary to strip thousands of words from my manuscript and I am glad to have persisted until the end is in sight.
But enough about that — I thought it was also high time to provide an update in our Travels with the Professor.
Yes! The Professor is still alive. Nearly ten years after his Alzheimer’s diagnosis, and just over a year since he finally went into care in a wonderful group home, my father remains with us in body. That body is now considerably larger than it used to be, because The Professor now struggles to walk or move, and generally gets around in a special electric wheelchair. It is also because Alzheimer’s is often accompanied by an ever-sweetening tooth, and the Professor is now particularly fond of ice cream.
His mind, of course, is another story. The Professor, once so voluble, has lost the ability to speak to us. He communicates using gestures, if he can, or with his eyes — which can still appear famously hawklike if he’s not happy.
Weirdly, however, the Professor has retained the ability to read aloud, which has led to my mother and I having one last shot at a different form of communication: I’ve started writing him letters. Nothing too long, printed in a decent sized font, and always including a picture of something relevant to whatever has been going on recently, like my daughter’s high school graduation. My wonderful mother then prints these letters out, and takes them to him to add to a display book so he can look through them when he wants to.
The other thing I am including in each and every letter is a paragraph assuring the Professor that we are all doing well, that we are looking after each other the way he would want us to, and that — in particular — I am making sure my mother is OK. We’re not sure what is keeping the Professor with us, but we hope that this information will somehow filter through the tangled passageways of his brain and let him know we’re OK with it if he decides to shuffle off this mortal coil at last.
Ten years is a long time to live, if you’re slowly but surely slipping away.
There is really not much for me to report on how he is going, or what he is doing, because doing so would revolve around lengthy descriptions of an old man nodding off, napping, or being fast asleep.
So, I thought I’d finish this post with some random musings about what I’ve learned in the decade since the Professor’s diagnosis.
- A human mind is a strange and unusual thing to possess, especially when it is being ravaged by disease. Witnessing the changing parade of residents at the Professor’s group home has shown me Alzheimer’s and other forms of dementia affect people in highly individual ways, destroying some neural pathways (such as the ability to see, swallow, or speak) while allowing others to persist. You can never be sure what will short-circuit next, or what will unexpectedly connect.
- I am surprised by the things I can accept as being normal. For example, I am no longer bothered by the fact the Professor does not recognise me. I genuinely thought that would be heartbreaking for me always, but it turns out it’s not. Similarly, I am not worried by the fact that the gifts I give him now are appropriate for children — like fidget poppers, soft toys and helium balloons. I have to meet the Professor where he is at, which means giving him something to do with his hands or providing him with something to look at.
- Grieving for someone while they are still living is weird, and sometimes unsettling. Please understand I am not writing about this to garner sympathy, but to point out that it can be disconcerting to find yourself overcome by feelings normally associated with bereavement when the person you love remains resolutely alive. Simply put, my father is still living, but my Dad has been gone for many years now. I miss Dad, and I mourn him — even when he’s right in front of me.
- And a final thought, which there is no getting around and never has been: Alzheimer’s completely and totally sucks.
And there you have it. As I said, I’m not writing this to attract attention or seek sympathy, but to draw awareness. If this post makes it easier for even one person to understand what it’s like to have a loved one lose themselves to Alzheimer’s, I know that would make the Professor happy. And if my story is similar to your own, and this post helps you feel like someone out there understands a small part of what you’re going through, that would make me happy.
Mind yourselves,
BJx
