Dearest Doug
Sometimes I fear I’m losing you - the version of you that I knew, and loved, and married, and made a life with in Bath, and Cambridge, and North Bay. I sometimes have to pause when we look at scrapbooks together of our long walks in the UK, trips to Europe, gatherings with friends, everyday moments just us. I have been told that our memory works like a photocopier machine - what we remember is not an actual event, but our most recent memory of that event. I worry that in remembering repeatedly I’m over copying, the edges are blurring, the ink is fading- If I blink away the hint of tears, and focus hard, I can make the soft sharper, and add substance to the shadows. But it’s a stone skipping across the water, farther and farther away. An echo reaching the end of its journey round a cave. (A “deep cave paved with kitchen linoleum”* . . .)
“Feelings are neither right, nor wrong. They just are,” a friend reassures me when I talk about the guilt I feel on days I don’t visit you, and the worry about knowing I am losing who you were, even as I love who you are.
We had a quiet Christmas this year.
Even without the Omicron variant of Covid we would have had a quiet Christmas. It was unclear to me if you had any sense of the day, but you loved your turkey dinner and the Bûche de Noël. I didn’t do any holiday baking this year, but Mum did, and she’s filled my freezer with all the classic treats for you. Our family and friends all sent you cards (even Harley the dog!). Your sisters sent you presents. I gave you a book (it is impossible for me not to gift books), and a child’s game with pictures of cats on cards you can hold, and super soft stuffed penguin for you to cuddle. My sister and brother-in-law visit you often, and that is the most precious gift of all.
My sister also gently helped me admit that you are not ever again going to walk as well as you used to, and this lack of exercise means you’ve gone up a size (or two) in clothes. Replacing your wardrobe with bigger, comfier clothes wasn’t a present. Nor is the new wheelchair I’ve ordered for you. Not everything one spends money on in December is a gift. Sometimes it’s just life.
And then, on New Year’s Eve, our Best Man wrote to tell me that his wife has been diagnosed with Alzheimer’s. I am, as you know, not great at replying to emails. But this one demanded a response - it was as much a reminder to me as (I hope) a burst of love to our friends.
Oh D-!!
My heart breaks for you. And for S-. But it will be the worst for you. I hope she will be one of the lucky ones, and there will come a point when she is no longer suffering; you will never not suffer.
Unasked for advice: do EVERYTHING now. Covid be dammed, make it work. Whatever is left on her and your (plural) bucket list.
The time will disappear.
Be left with as few regrets as possible.
Whatever that looks like - travel, time with family, books to be read, wild passion, loving intimacy, sunrises and sunsets, conversations: please make the time. Lay roses at her feet while you still can.
The time will disappear.
When you want practical advice, or need to rant at the unfairness, or wish to talk to someone with lived experience, I am here. Midnight, 3:00 am, 2:00 in the afternoon. And when it reaches the point that you need respite, I am an excellent caregiver and only 3 hours away. I will come for an afternoon once a week, or a weekend once a month.
I cannot say “you are not alone” because you will, alas, feel very alone all too often. But I am always here.
When you are ready to do some research I’ll send you a list of books, websites, services I’ve found the most useful.
Please apply for a place on the Bruyere Research Clinic in Ottawa. I would not have managed our journey without Dr Andrew Frank there.
Contact your local Alzheimer’s Society. You will need them.
It is different for every single person. I am praying that S- is one of the luckier ones and it’s a long, long, slow progression. But that won’t make it any easier, or any less sad.
Your heart is going to break a million times. It’s so tough to handle. But never forget that you are tougher.
No one warned me, at the beginning, how bad it would be. Maybe there’s a reason for that - maybe I couldn’t have coped with that information. If you would like a preview (it is a progressive disease; it will progress), I can be gentle but honest. If you would rather not, I will point out only the silver linings.
I am holding you both close in my heart.
With all my love,
Louise
And there it is, in writing. I hope I’m correct, Doug. I hope you’re no longer suffering. You have good days and bad days, but you are cheerful often enough that I hope you’re more often cheerful than sad or confused. I am so grateful that I hold so many wonderful memories of our life together. I wish I could share them with you.
With all my love,
Your wife, Louise
*Munro (of course)
