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.

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.