Wednesday, July 27, 2011


Dad is so stiff now, I've noticed. He sits almost bolt upright, turning his head only a little to look at what's on either side of him. He walks very slowly now, feeling each step; barely even lifting his feet at all, actually. The doctor thinks the nerve signals from his feet to his brain that tell him how to walk and whether there's solid ground under his feet are fading. He was never the most graceful and easy-moving of men; in fact, I can remember several crashes while skiing and a lot of awkward hugs, but he was athletic and strong, and I know he appreciated that. I remember running alongside him, when I could still run, for miles, and I remember the joy he took in bombing down mogul hills in the snow.

When my fiance and I took him for a ride in our Corvair, I noticed then, too, how hard it was to bend him to get him to sit in the seat, and how his body hardly moved going around corners, only stiffly swaying from side to side. I don't know if its the Lewy-Body or what, but I think his entire body's proprioception is no longer working.

Proprioception, as I understand it, is the term for how the muscles and ligaments of our limbs move and are aware of themselves in space and in relation to other limbs. His muscles are so stiff now, and seem as lost as he is, in a way. He reacts stiffly to everything, to every movement. The other day when I visited, I watched him sitting bolt upright in a lounge chair, unable or unwilling to relax, to slump a little. I see the elderly in a lot of facilities slumped down in their chairs, a victim of gravity. It seems my father has gone the other way, but I still feel sad to watch him, hardly moving, because I still see underneath the man with the powerful arms, breaststroking for miles down the lake.

Saturday, July 23, 2011


What is age, anyway? I was faced with this question the other day when I went to visit my Dad. He was asleep in his special chair when I got there, so I quietly sat down next to him and just enjoyed the peace. I found myself investigating his face and thinking about the fact that he'd just had his 73rd birthday-a number that it took me a little tortured mental arithmetic to come up with but I finally did it, and then was amazed! You see, he just doesn't look 73!

His hair is completely grayish/white now, although still thick, and there are a few age spots on his skin, and the flesh under his chin has fallen, but in general, the man looks like he just celebrated his 63rd birthday! He has very few age lines and his skin is still fairly taut, at least on his face. He certainly isn't a mass of wrinkles, although I suppose everyone ages a little differently. But two things occurred to me.

The first one was that, for me, he'll always be kind of stuck at 65 because that's around when my life started becoming so entwined with his. That's when his disease really got bad and all the years he's lived since don't seem to compute in my mind in a way. He'll always be the age when he stopped being my father, and started being something else, something without an official name but that resembles a child in that I'm in control of his entire life.

The second thing was to wonder whether one of the effects of being unaware of the stresses of the world, and the input of your own past and regrets and hopes and emotions, and the sometimes difficult input of others, might just possibly cause one to age a little less visibly. He has few worry lines because he has had few worries over the last eight or nine years, beyond whatever internal demons the disease caused. His face is slack because his mind is. From what I can remember of my grandparents, they looked a lot older at 74 than my father does now. I guess this might be one benefit of this terrible disease, although not one he'll ever get to take advantage of.

As I sat there with him, communing quietly, studying his face and thinking these thoughts through, I couldn't help but think that this couldn't possibly be what he thought his septugenarian years would look like. This wasn't what he would have wanted, and I'm pretty sure he would have traded looking younger for a few more years of being aware.

Saturday, July 16, 2011


It's July 16th today and tomorrow is my father's birthday. Every summer growing up, my mother would arrange a little party for his birthday, ordering an ice cream cake one year, making it herself another. She would take us out shopping and we would comment yet again on how difficult it was to buy for my father, who wore neither cologne nor shorts; completely eschewed televised sports of all kinds; didn't play golf or any other game of leisure; didn't read popular novels; and, in short, was impossible to buy for. We were left with candy, tools, of which he had many but always needed more, and that classic standby-ties. He never minded, I don't think, not being a very acquisitive person, but I do think he liked the little celebration.

I remember it always being warm, as summer in childhood always seems to be, and we would eat our dinner out on our deck, sitting around the splintery picnic table. Then out would come the cake and the presents and the obligatory singing and my father would sit sheepishly, yet pleased, I think, as we fluttered around him and forced him to enjoy his birthday. I don't think, left alone, he would have even remembered his birthday.

I can't remember the last time I celebrated my father's birthday, but I remember the day each year as it comes around. When he went into Assisted Living, the facility made a big deal of birthdays, and if I couldn't make it on the day, I would see the pictures after of Dad with a birthday hat on, a cake in front of him, grinning to the camera in that same sheepish way I remembered so well. For a while, I sent him a card every year, as well as one for Father's Day, and just because I like sending cards. But I started to notice that the cards would go unopened and forgotten. Dad didn't care about things like birthdays anymore, he was too occupied with the fight to hold on to what was left of his brain. And gradually, I stopped sending cards, because he doesn't know what time of the year it is, and I'm not convinced he needs to know. I prefer to let him wander in whatever time or space he now inhabits.
But each time July rolls around, I'll remember for him what Dad's birthdays used to look like.

Monday, July 11, 2011

Summer Time II.

Sorry for the length of time between posts-I've been out of town for the last week and a half. Thanks for continuing to check in!

It seems to be summer again, thank goodness. It's funny how summer when you are young seems like an endless golden moment where you were the happiest, and nothing but good things happen, and the sun was always shining and hot. You can never get back to that wonderful time.

I had great summers when I was little. We had lake front property and I spent every day with my sister swimming in the cool water. When Dad got home from work, he would shed his work suit and pad down to the lake in his shorts, thongs, and a towel. One of my best memories is of him ducking underneath the water and letting me climb up onto his shoulders as he crouched down, then standing up quickly with me on his shoulders so I could then dive off. I loved that. Dad loved the lake, and even after his dementia was becoming worse and worse he would spend hours at the water, watching the ducks and staring at the horizon.

Summer was when we took three week long family vacations in our camper, crossing the country some years; other years going down to California and the beach and Disneyland. If you've read the book, you'll know about the summers we spent in the mid-West, looking at airplanes; again, something that involved my Dad in a vital way.

Summer also has bad memories for me. It was summer when I got sick for the very first time, and the second time, as well. And it was August when my mother died, taking her last breath late one sweltering night as we crouched around her. I've had other friends die in the summer, too, more than any other season. Something about summer means hardship for me, although it's still one of my favorite times of year.

When I have gone to visit Dad this summer, I can't help but think each time about all those other summers I remember him in. Strong, swimming for miles, driving the camper, making us walk until our feet fell off. And now I see him, sitting quietly and guardedly in a button-down shirt and sweat pants, something he never, ever wore in his life, but a garment that is easy for the caregivers. I don't know if he even differentiates between the seasons anymore and summer, a season that he once loved and looked forward to, is now just another day in the succession of days he endures. And all I can do is remember for him.