Wednesday, March 28, 2012

An Introduction

My husband, Patrick Gannon, was diagnosed with dementia in December 2004. We had been married for three and a half years. Everything I knew as normal stopped with that diagnosis, though I didn't know it at the time. He worked steadily for another year and sporadically, with me as carpenter's assistant, until the fall of 2008. Now, he listens to music, watches movies, whistles (a lot) and wishes he could take up router and level and go back to work. My heart breaks so often that I don't always notice. But a word from him, a sad look can reveal the rip and grief tumbles out like rocks in a landslide.

A few months after our wedding, I was reading an article about a woman whose husband developed frontal lobe dementia a few years into their marriage. A physical chill ran through me. I remembered this incident when Pat was sitting with the doctor, talking through what dementia meant for him, for us. 

Life is stranger than I ever imagined it could be.

The now normal:  Walking up in the night to find him pacing at the foot of our bed,muttering about gas lines running through the bedroom; shoehorning him into the car and fastening his seatbelt for him before I run around to the driver's side in the pelting rain or snow; helping him find his fly, or the toilet, or the bathroom, always looking out for unisex bathrooms, or sneaking him into the women's room, hastily explaining our situation to other astonished users; finding shoes in the fruit bowl, the broom wedged against the door, the dog's dish atop the front gate; explaining again and again the contents of a pile of photos I keep for him to rummage through; listening to James Taylor morning noon and night; watching old Fred Astaire movies every day; finding no time at all in 24 hours, even when I'm at work and he's with a caregiver, that I am not tuned into his need.

So much has been written about the traumas of caregiving for people with dementia. I don't want to go on and on about the awfulness or the quirkiness. What I want to do in this blog is to honor Pat and others like him, to write about the particular needs of caregiving spouses, especially those of us who are relatively young, to advocate for national reforms around this issue and to ponder the spiritual dimension of these diseases. For what I've found is that my husband is still very much the man I've loved since the day I met him. People with dementia do not become less than human, or unrecognizable to those who love them. They can still make new friends, enjoy good food, care about politics and the state of the world. I want everyone to understand that, to know that these are not "throw-away" human beings, but people longing, as we all do, to make sense of things, to be useful and to love and be loved. 

Hope you enjoy the entries to come. I welcome your feedback at any time.