I noticed it it at first in his driving. Very subtle changes, like forgetting to shoulder check before changing lanes. That was years ago. And then, 6 years ago my dad had a stroke. Physically, he came out of it unscathed (aside from a wee bit of instability for which he sometimes uses a walker), but cognitively he’s changed, lack of insight into his own limitations being the most significant change. At first we thought I thought it was a post-stroke sort of thing. I suppose, as the years passed and my mum shared with me dribbles of his decline, I clung to this notion. It’s the stroke. It’s only the stroke.
And then, one day last winter he went out to the store and bank. Mum received a phone call from the maintenance dude at the apartment building where they used to live (and lived for many years). He’d spotted my dad, laying on top of a snow bank. Think Winnipeg, in the winter … -20 Celsius. Mum went and told some of her lady friends in the building, who went to pick dad up and bring him back home.
He vehemently denied having gone to their old place and lain on that snow bank. Despite having just done it! My only response to mum when she told me this story was “… are they gonna put him in a home?” Her knee jerk response was, “no.” But this did set the wheels of my mind in motion. It’s coming. That something. It’s coming. And I cannot stop it.
And then, about 2 months ago, I heard the “A” word. Alzheimer’s. My heart broke when my sister recounted to me dad’s response to the doctor: “But I can’t have Alzheimer’s, I’ve got a masters degree.” At first I believed I was taking the news quite well. But as the minutes and hours and days passed, as I began assimilating this newly acquired knowledge began through a sort of mental and emotion osmosis, I felt a sort of thick, inky blackness envelope me, and lock on, like some impenetrable membrane. This plagued me for days. Weeks, I think.
I’m very timidly emerging from this abyss. By grasping hold of the only bright light of this entire Alzheimer’s diagnosis grief and struggle ~ the desire to know my dad, tell his story, and the knowledge I have in my very blood that he is still there. I decided I will endure having to travel this terrible journey through story. Once I could shake enough of the inky darkness out of my brain to think straight, I began researching Alzheimer’s Disease.
I’d experienced AD from the clinical side of things, for 10 years as a nurse’s aide and then as a registered nurse. It frightened and upset me. It didn’t prepare me for the personal, individual experience of AD, an entirely different entity altogether. And so, I sought out personal stories. An Elegy For Iris is one I’m currently reading. A true story, and written by her long time husband, it contains such lyrical language and reinforces my intuitive belief that dad is still in there, even amidst the strange and occasionally disturbing behaviours.
Next on my list will be Still Alice, because I feel so heart-wrenched about what it must feel like to lose one’s mind, particularly when one never has before, and particularly when one’s mind has become a very important symbol of one’s identity over a long life, as is the case for dad.
As I read An Elegy For Iris, I can glimpse into the intimacy that exists between my parents in a way I never have before. And I can see just how much of my dad’s story has become intertwined within her own. And I can glimpse that a very important piece of dad’s story is her piece, her perspective, her own, pure, reflective perspective. I have this sense that telling the story of travelling this harrowing journey will be healing. For her and for me.