Sunday, July 26, 2009

Controlled fall

Steve's been struggling with increased weakness all over, shallow breathing, shallow coughing and weak voice this weekend.

This morning when it was time to help him walk (with his walker) from the bed to the bathroom, we had some trouble. It took him more tries than usual to stand up from the bed. The walk was slow and unsure. I had to provide more support than normal and move his left foot and leg the entire journey.

On the walk back to the bedroom, Steve's walker got too far ahead of his body. He didn't feel stable and said he needed to sit down. Well, I knew that that wasn't a great idea, but there was no arguing with his body, which was slowly moving to the floor.

I helped guide him to the floor and made him as comfortable as possible on the half tile, half carpeted area. Then we thought about what to do next.

There was no way I was going to be able to lift him from the floor myself, and there was no way he was going to be able to rise on his own. So I started making phone calls to as many of our nearby guy friends as possible.

Jason answered the call and scooped up Steve with seemingly little effort. I grabbed his feet, and we carried him to bed, where he's been ever since.

I spoke with D, our hospice social worker, to let him know about the controlled fall and to get advice.

It was a difficult conversation.

You may remember that D visited us just yesterday. He told me on the phone today that he is concerned with the weakness he sees in Steve compared with two weeks ago.

He said that, based on his experience, we've started a decline that isn't reversible. (D has been with our hospice group for about six months. Before this job, he was a social worker at UT-SW and worked directly with Dr. M and her patients.)

Steve is in bed most of the day. This is out of necessity. He's not stable enough or strong enough to be out of bed. When he sits in his wheelchair for a few hours one day, he's spent the next.

Being in bed most of the time makes him weaker. It makes it more difficult for his respiratory system to heal. It makes his breathing more shallow.

It's an awful cycle.

D wants us to be prepared for some rough weeks ahead.

It's frustrating that even though the Damm Spot is stable we've got these other battles to fight. Battles that aren't easy to win.

I feel just awful that I can't fix this. I ache for my Steve, who is still so full of life and charm and wit and spirit and love.

(Today, after Steve was back in bed, Julie was helping me adjust his position in bed. He wasn't wearing a shirt. "I'm too sexy for my shirt," he sang to Julie.)

I ache for Cooper and Katie. At the same time I'm so proud of how they adjust. Our bedroom has become the new family room. We spread a blanket on the floor between my bed and Steve's bed, and the kids have picnics right there, so they can eat next to Daddy.

My bed is the new reading spot. The three of us (often plus furry Margie) snuggle on my cozy twin bed while I read aloud (we're in the middle of On the Banks of Plum Creek). That way Steve gets to listen, too. Tonight we all watched a movie together, with Steve's oxygen machine providing ambient noise.

I ache for me and for us, too. My heart aches as I watch Steve struggle.

I can't tell you how many times in the last 17 years I've revisited our first date and first kiss in my mind. It literally takes my breath away.

That memory is even sweeter now.

We know how blessed we are to have found each other. We know we were meant for each other. That unbreakable love is what makes this whole experience so painful and so bearable at the same time.

We haven't given up hope or traded in optimism for pessimism. We will continue to fight as much as we can. Steve has always wowed us with his Superman qualities.


Chitnis and Chahal said...

You and Steve will never be pessimistic. For those of us who are also blessed to have the special kind of love that you and Steve shares, this is heart ache as well. Love like this should last forever. I hate to see Steve struggle also. I will have to make more frequent visits to help out and see you. Hang in there. Your posts really tug at my heart strings, they help me be a better person and deal more patiently with Rahul and Juhee. You guys are really incredible.

Laura said...

My dear Tyra, you and Steve and your adorable, loving children are in my thoughts, prayers and heart. Keep your spirits up and enjoy every one of these blessed moments.

Anonymous said...

There is so much beauty in your words, Tyra. And in all the ways you, Steve, Cooper and Katie are there for each other in this journey. God bless you all.

Mary G

noelgross said...

You paint such a vivid picture. The kids picnicking at Steve's side is probably the best medicine of all!

Dusty said...

My heart aches for you and your family. This isn't an easy road that you are traveling, but you have amazing strength, love and compassion.

Anonymous said...

After reading your post it nearly brought me to tears thinking about the same scene I was remembering 27 years ago with my mom and her fight with cancer. I was the same age as Cooper, my parents room turned into a small hospital room with a twin bed over against the wall. My heart aches, just as yours does, thinking about it nearly 27 years later. I know the road ahead, especially for Cooper, and I know how hard it is and will be. I hope you know we are committed to help whenever you need us and we will lift you all up in prayer.

Phil M

Anonymous said...

oh, Tyra, (((((hugs))))),,, I feel your pain,,, not exactly, but part of it,,,I call my Dad is "Steve-Superman" too!!!! which makes me smile to write :) I so wish we lived closer so the 'Steve-Superman's" could meet :) I think of you so much,,,the parallels in what is happening with your Steve and my Dad is quite amazing...You are an amazing woman, beautiful person, just unbelievable, really,,,Hang in there, my friend,,, Love you, Angie (in AZ)