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.

But they are. And they will continue to be.

During my good moments, I marvel at what this disease has done, and what it hasn’t yet done. Sky has lost his carpentry skills along with his common sense. His anxiety level escalates when a new activity is on the horizon whether it is part of the house building project or a long-anticipated event or excursion out-of-town. Simple, daily tasks are getting more challenging.

Yet. His intellect remains as it has always been. He’s passionate about keeping up with what’s going on in the world (as depressing as much of that is) and having deep conversations about it. His care and commitment for people and animals remains strong. His love of the natural world (which was already very strong) has deepened. He’s still busy doing crossword puzzles, reading and writing, only being held back by the double vision that strikes him at times, and tiredness that hits him at odd moments. The song lyrics are still there, along with names of movies and movie stars, musicians, and songs. (Stuff I can never remember!)

The brain is a mysterious thing. 

When I remember to be, I am grateful for what is still good about all if this. When I don’t remember, well, it’s all pretty bleak. Every day is different — heck, every hour is different. I’ve always prided myself on my love of change, and my ability to adapt to new circumstances….. but this is challenging me to the max.

Thank goodness for my garden, my cats, and my daily swim after housebuilding. It’s the little things that give me strength.

[And, despite all this, the house is coming along!]


  1. Jane, I love your honesty (and Sky's, too). Let's not mince words about this -- it totally sucks. AND you are coping with it pretty damn well, even though it might not always feel that way for you. One foot in front of the other, over and over again...

  2. What Judy said.
    Holding you all in my heart.