Heavenly Stairs vs. Physical Ones! – June 15, 2009

So, if you picture the stairs that we run up and down all the time, Craig would have easily made it to the top of the staircase sometime this weekend. This morning when I commented that the climbing seemed to be going very slowly, he agreed! So, the only conclusion I can reach is that the heavenly variety works a lot differently than the earthly kind! He says he is still being accompanied up the stairs by the same people though. The emotional push and pull for everyone of this process of preparing for him to die and then him continuing to live is exhausting.

He spent the weekend wandering between here and “there”. Friends flowed in and out visiting, saying prayers, and singing for him. He shed tears often in the process. He spent some time up in his wheelchair. Yesterday we sat on the back porch for an hour or so holding hands and listening to prayers set to music. I shed a few tears then as well.

I realized that I needed to have friends come almost more than Craig did. Sometimes the alone time is a blessing. However, sometimes it’s very hard to be here alone doing everything. It was good to have Holly here with me on Saturday evening/night/morning, and up with us during the night helping. I’m struggling a bit more with taking care of myself right now. Patterns of sleeping, eating, exercising, etc. are all more random. Usually I can get back to sleep after being up with Craig, but at times, it’s difficult once I’m wide awake.

Craig is now very shaky and losing his balance, even sitting on the edge of the bed. So he now requires support and assistance with virtually everything – eating, using the urinal, getting positioned in the bed. I gave the caregiver (and us) the weekend off, but he’ll be back today to help. There’s a pile of bedding to launder and dirty dishes to handle, so good to have help back.

One of the interesting challenges now is that in trying to reduce Craig’s head pressure discomfort from the growth of the tumor, we have increased the steroid levels. The side effects of this drug include increased appetite, thirst, and urination. So, at a time when all of these had begun to significantly decrease, they are back increasing again. This drug is not intended to extend Craig’s life, only increase his comfort, so we are questioning whether that is really true. We meet with our nurse later today and will discuss this together.

Love,

Susanne