Wednesday, June 5, 2019

Jane: We are What We "Do"?

The other day Sky said to me, “I can’t do anything anymore.” Of course, that isn’t true — there are lots of things he can still do. What he meant is “I can’t do many things that I used to be able to do easily and well,” like carpentry, gardening, reading, writing, crossword puzzles, board and card games.

We all learn how to do many different things in our lives. I remember vividly learning to read, learning to swim, learning to downhill ski, learning to ride a two-wheeled bike — none of them easy to learn, but oh so satisfying once I got the hang of it. My horizons opened up — so many books to read, lakes to swim in, mountains to glide down, and roads to ride. Life was full of endless possibilities.

I can’t imagine what it’s like to have your world begin to shrink, to have the endless possibilities disappear one by one. I’m watching Sky’s world shrink, and while it’s painful for me to watch, I know it’s more painful for him. So many activities he’s enjoyed for so long — gone.

Other people lose the ability to do things they love — it’s not just folks with dementia. Accidents or illnesses that cause injury, chronic pain and fatigue, or paralysis take away certain physical abilities. A paraplegic can’t run marathons anymore, but they can do so many things with their minds. A blind person can’t read books anymore or drive a car, but they can listen to audio books, learn Braille, and start hiring drivers or take advantage of the good will of friends to get around. More naps help keep up stamina, certain diets help with energy and clarity, technological solutions provide answers. People learn to cope with their new reality, and make adjustments.

But for people with dementia, the skills are gone forever, and, in many cases, cannot be substituted for. Sure, audio books will work for a while, but the day will come when Sky's comprehension will be gone. Sure, Sky can go into the garden and enjoy looking at the plants, but that’s not that same as tending them. Sure, Sky can watch the rest of us do carpentry, and remember when he could, too…. or he can walk away and find something else to do to avoid the pain. Sure, he can still ride his (new, lighter) bike, but the day will come when he won’t even be able to do that, and he’s wary of being taken out for a ride in a tandem trike pedaled by his son. (I think it’s a great idea — don’t you?)

For many people, the things that we “do” define us as people: I’m a lawyer, I’m a doctor, I’m a mechanic, I’m a teacher, I’m a chef, I’m an architect, I’m a Bridge player, I’m an athlete, I’m a journalist, I’m a knitter, I’m an artist. Many people struggle when they retire from paid work — when they lose that particular definition of who they are. They have to re-make themselves in a new image, find a new definition, find a new meaning.

But what if you can’t “do” anymore? How do you define yourself as a person? How do you find the core of your being? How do you know who you are anymore?

We are so much more than the things that we “do” — take all those “doings” away and what have you got? You’ve got a person who loves and is loved, who sees and is seen, someone who is unique in all the world — whether or not they “do” anything.

So, Sky, whether or not you can do things anymore is beside the point. You are still you, and you are loved.

(And I want that bike!) 


  1. Another beautiful post, Jane. I admire your (you & Sky's) grace in dealing with this awful situation, but not for a minute do I think that grace is easily come by! The progressive theft of Sky's sense of self, as much as his actual capacities, is rotten, unfair, stinky shit.

    On the subject of bikes ... HO (The Perfect Boyfriend) has been unable to ride a bike - or drive a car- since his pelvis fractured at Christmas time. He can barely walk, either, but it was the lack of bike riding that hit him the hardest. The fracture is due to a metastasis, so won't heal.

    However last week he got an electric-assist three wheel bike. It has a semi-recumbent seat, relieving pressure on his pelvis - so the model is known as the 'Easy Rider'. While he would have scoffed at such a thing a year ago, the freedom it's given him, the joy of riding around, and the sense of being part of the 'functioning' world again is enormous.

    So YES - I do think that a tandem trike sounds like a fantastic idea. Good for your son for thinking of it. Hugs.

  2. Sky, you are still "doing" great work. In addition to coping with and adjusting to life with dementia--no small feat, that--your blog posts are enjoyable, thought-provoking to read, and well-written. Jane, what a blessing you are as a life partner! I appreciate the teamwork evident in Alzheimer's Canyon, and am mindful of the profound losses you are experiencing now and anticipating. I send your family my love.