Friday, August 10, 2018

Jane: Changes, Changes, and More Changes

You try building a house with someone who has dementia, and see how it goes. Sky and I have built six houses together, many outbuildings, renovated two, and offered our services in New Orleans and the Gulf Coast helping people rebuild after Hurricane Katrina. All this work was challenging (especially my first time building!) and, in the end, very satisfying. To create something new, something beautiful, something useable, and something that will last is great.

And, we’re at it again. Only this time, Sky can no longer take the lead, be the “contractor” holding all the pieces together, know what has to happen next. It’s my turn.

And he can’t do most of the carpentry tasks that he has done time and again, even long before I met him. He’s frustrated (at times) and so am I.

The other day I realized that when I get angry about his inability to follow directions or anticipate the next task, I’m not just mad at him (for something he really has no control over), but I’m mostly sad. Sad that he can’t do these things anymore, sad that we’ve lost our beloved partnership in construction, sad that I’m the one that’s solely responsible for this project. I don’t want things to be like this.

Saturday, August 4, 2018

Sky: Let's Talk about Death

Part of living with a terminal condition is, well, living with a terminal condition. Those of us on the dementia continuum have an excuse to look ahead and imagine our final days and hours. We’re on a special detour that leads only to death, right?

And, as an excuse, it’s not even a very good excuse. For many of us, myself included, our deaths feel closer now than before we made the acquaintance of Dr. Alzheimer. But it’s a phony excuse because, last I heard, demented people aren’t the only humans who will die at the end of our lives.

Monday, July 9, 2018

Sky: Long Time

Long time, no write.

Is something wrong ?

Nope, mostly I’ve been enjoying living in the present in summer mode, even though it means sharing time with my all-too-constant companion, Professor Alzheimer.

This is my 68th New England summer, give or take a few, and I’m getting used to the routine by now. A routine of no routine. Bits and pieces of every weather, as the natural world warms around and within us. Swimming. Yet another building project.

Sunday, June 17, 2018

Sky: At Least I Know

Last night I was visited by an Alzheimer’s factoid so simple and haunting that it wouldn’t let me sleep. It was passed on by Meryl Comer in her memoir, Slow Dancing with a Stranger, her story of caring for first, her husband, and then her mother, both with very high-needs Alzheimer’s dementia. Hers was a harrowing journey of well over 20 years of non-stop, sometimes simultaneous, home care for two very difficult family members. Protected by his good-old-boy colleagues, her husband, a world renowned scientist mentor to scores of fellow scientists and researchers, went undiagnosed for years. In the meantime, his personality changed disturbingly, and he became physically and emotionally abusive and paranoid.

Non-demented readers may remember that I started this story alluding to a troubling bit of Alzheimer’s trivia, and now what am I doing telling this whole other story?

Good point! I can only answer that the various pieces make some sense to me so far, and I’d like to ask your indulgence to listen as I try filling in some blanks.

Wednesday, May 16, 2018

Dana: Song Lyrics

This is a guest post by Dana Dwinell-Yardley, Jane and Sky's daughter, written for Sky's birthday this past April. To listen to the songs described below, follow the individual links or check out the playlist at the end of the post.

When it comes to traits I share with my father, Sky, many of them are readily distinguishable as products of either nature or nurture. Extraordinarily nearsighted blue eyes, teeth unfairly prone to cavities, light brown hair that, upon reaching one’s ears, prefers to grow straight out from one’s head instead of down? Pretty sure you can chalk those up to nature. Love of hiking, relative fearlessness about driving in bad weather, and the fact that I always carry band-aids in my wallet? Gotta be nurture.

But there’s one trait we have in common that I’m not sure how to categorize. You might say it’s environmental, but sometimes I swear it’s genetic. It’s the singing thing. By which I mean: Sky and I both have brains that absorb song lyrics like a sponge and wring them back out readily in response to the smallest of stimuli.