Archive for February, 2013

An Anniversary

February 9, 2013

Last Thursday Freddie was on his way to the bathroom and his legs starting shaking and wobbling as they do by the time he reached the far end of the living room. He fell, but luckily he landed on a pile of dog toys and had no injury.

At the time I’d been lying down, giving in again to the intense weariness that comes to me so often these days. Between the general level of stress, depression, uncertainty about life, and those anti-anxiety pills the doctor gave me, it isn’t surprising that I’m tired much of the time. We talked about it when I saw him recently. The doctor and I both know the situation I face these days, and I suppose it’s the bargain I’ve struck while I wait for something to happen.

The only thing that is happening, though, is that Freddie is not getting better. Every day, slowly, he seems to get worse. That same evening while watching television he got up for the bathroom again.

“Do you need the walker?”

“I’ll be fine.”

And next he’s at the edge of the room, shaking, legs like noodles

“I’m bringing you the walker.”

“I need you.”

So I got up and ran. I held him from behind in a tight hug until he stabilized.

“I’m not always going to be able to follow around after you to catch you when you fall.”

To that, he has no answer.

Then I brought over his walker and sent him on his way.

And so, the walker. He does not use it. I don’t know if he forgets it, with his cognitive impairment, or if it’s too inconvenient in some sense of being less convenient than falling, or if it’s pride. Most likely it’s simply ingrained habit.

Whatever it is, it’s also a ticking time bomb with a hidden clock. One more fall, I tell him, is a broken hip or a concussion or worse. The choice is up to you, I say. And yes, he agrees. And then we go on as before.

Friday evening, same scenario, in the kitchen. He comes for a glass of ice tea but only makes it as far as the counter five feet away from his Laz-Z-Boy recliner. Once again, the tight hug to keep him on his feet. And then he’s back in his chair, I get the tea, I make another pitcher, then get back to bustling around the kitchen cleaning up after dinner.

We’ve owned this house six years this weekend, moving from a two-story historic home in a walkable tree-lined neighborhood to a single-story neo-traditional in a vast sea of similar suburban homes, fifty miles closer to Freddie’s doctors and preferred hospitals. The trees are small, there are no squirrels, and we must get in the car to reach everywhere we go.  With his increasing number of doctor visits and occasional hospital stays, we accepted this compromise. We knew – sort of – what was ahead for us. But we had no idea it would happen this soon, nor in quite this way.

Six years ago he was walking and active and there were no falls. That same year both my parents passed away. Freddie was with me every step, strong and supportive, even able to help clear out my mother’s apartment, lifting furniture and boxes, driving a U-Haul truck.

And now he cannot drive.

Oh, mirror in the sky, what is love?
Can the child in my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Well I’ve been afraid of changing
‘Cause I’ve built my life around you.
But time makes you bolder,
Even children get older,
And I’m getting older, too.

 Landslide, Stevie Nicks, 1975


Guest Post: Caring for the Love of My Life: Our Cancer Story

February 3, 2013

The following is a guest post from Cameron Von St James about caregiving and his experiences as a caregiver with his wife’s cancer.

The year of 2005 was unforgettable to my family. It was the year that my wife Heather was diagnosed with cancer. She had malignant pleural mesothelioma. That day, I became her caregiver, and life changed for us in many ways. I wasn’t ready to become a caregiver right away. It took a lot of patience and understanding. During this time, there was another life that I was also in charge of. Our newborn girl Lily had been welcomed into the world just three months before Heather’s diagnosis. While we had been preparing for a happy first Christmas, everything came to a shocking halt.

I didn’t really know where to start as a caregiver for someone with cancer. However, my journey began right as we left the doctor’s office. The doctor told us about mesothelioma, and laid out some options for treatment. There were three choices: a local university hospital, a regional hospital that offered excellent services but had no mesothelioma program, or a doctor from Boston who specialized in mesothelioma named David Sugarbaker. I remember looking at my wife wanting to know what she thought, but neither of us could speak at first. I didn’t know what to do but I had to speak up. I declared, “Get us to Boston!” This was one of the first decisions that I remember making as a new caregiver for my wife.
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