“Good morning, love.” I move around the bed to help my Bert out even though he can manage by himself.
“Who are you?”
“Same old me,” I say with a smile.
“Do I know you?” He is teasing me. He is a master at that. I laugh and look up. He must want a hug.
My Bert looks back at me. The vacancy in his eyes seems more evident today. More apparent that he sees without seeing. Perhaps the macular degeneration has progressed, I surmise. I reject that thought. His last check-up was better than the previous one.
I hug him. “OK now, chop chop, it is club day and Tee will soon be here to get you ready for the day.”
There is no response, no return hug, and no acknowledgement except for a querulous, questioning anxious look.
Reality is a sucker punch. I do not want to believe what is slowly dawning.
My brain is lethargic, refusing to process. No. This cannot be. It is too soon. My Bert’s brain is being ravished by Alzheimer disease but he is still here. He still makes me laugh. He is steadfast, true and reminds me so often that he will love me forever. Is there love without memory? Forever is not, cannot be today. Please, not today.
I am a fish, a flounder, perhaps. There is no graceful sinuous, gliding, smooth movement in my usual element. There is no buoyancy, rather, I am beached. Floundering.
I am an open wound. I am hurting, mentally, physically, emotionally.
My learned mantra which up to now has helped me navigate the Sturm und Drang of caring for a loved one with dementia is a platitude. That formerly helpful phrase: “It’s the disease; it’s not your loved one,” has become a cliché that has lost all its weight and substance to console.
This is my Bert. How can my Bert not know me? In rapid rewind motion I see our entire life together. The highs and the lows, the ordinary and the extraordinary experiences of lives lived well. So rich a life; such an interesting journey; I must hold on to that or lose my very self.
My brain tells me this is the natural progression of the disease. My heart refuses to understand. My hearts does not have room for this new phenomenon. I am floundering. A spectre hovers. It walks with me and whispers: “Yes, this is your new reality.” I am walking covered in a veil of sadness which seems firmly attached. There is no escape. I fear this will be my constant companion. It is called grieving.
Another cloak has descended on my shoulders. I must know me for my Bert to know me. Even as I note the convolution I realize that as I have been living for two now I must also love for two and be a mirror of myself for my Bert. It will be a show and tell of our love, our life, our togetherness.
My ship has listed, my world tilted. The shadow grows. The light is dimmed.
The Meander: Today my Bert is my Bert. I am exactly who I am and should be. All is well. Tomorrow? Well ‘tomorrow is another day.’ I may be me or who knows? I may be someone else or no one, whatever the disease chooses. I know in my Bert’s heart I am forever his Paula. That certainty is my ballast.
Remember: “It’s the disease, not your loved one.” “It’s the disease, not my Bert.” Repeat.