Time is weighing heavily. We have minutes and hours and days to measure the distances the passage of time. The measures are failing me.
I don’t know how to use my time, how to feel about my time in any given day. I’m both bored with too much time on my hands and stressed with too little time – AT THE SAME TIME! How is that?
My time is out of my control. My time is unpredictable. My time is non-rythmic (is that a word?).
I generally think of time as linear – if you visualize it the past is on the left, then the present, the future on the right. I believe that Asian cultures who read right to left see their timeline reversed, with the past on the right, the future on the left. When I worked in Alaska I was told that many of the Alaska native tribes envision time as a circle with the past, the present, and the future always around you.
I see only the present. No future. No past in a way. Neither is relevant to our present. How much time do we have left together? A day? A week? Many months? He wants the hospice doctor to tell him. I want to have enough left in my reserve tank to help him through. How much time?
In any given day, I know I will wake up around 7:15 (because if I don’t the dog jumps up on my side of the bed and bats me with his paw.) I know Larry will wake as I get dressed and will want help with his catheter. Then I feed and walk the dog.
After that, who knows? Larry might need a breathing treatment in bed. He might want to go back to sleep right away. This Tuesday the hospice CNA called at 8:13 and said she’d be here at 9:00 (though I’d asked for a late morning shower for Larry as he sometimes doesn’t wake up again until 11.)
I treasure that quiet time alone before he gets up. I’ve always treasured that early quiet. I make a cup of coffee. I meditate, write, look out the window at the early sun and the long shadows. Now that he’s so weak, I dread getting him up – NOT having him up. It’s the heavy wrestling to get him from the bed to his wheelchair, get clean clothes on him, etc. Once he’s up the hard work is over. It’s just little things that come unpredictably, whether a glass of water or a new symptom.
I can’t really leave for any length of time or start anything that can’t be left. I do some chores, empty the dishwasher. He wants the bathroom. I keep checking to see if he’s done. I get his pills ready, his coffee ready.
Finally I can help him clean up and get dressed. And the day for us starts.
I know I should do my back exercises but I don’t have the energy to make myself get down on the floor. I do a little painting, but have to stop to help him wipe his hands after he finishes breakfast. My painting is awful. Where’s my coffee? Where are my glasses? Did I take my pills? Where’s my phone?
Then he needs nothing for hours, so what do I do with myself? I didn’t know I’d have this time.
Then I have something I need to do and I can’t find the time.
Okay, I’m sick of complaining. How much worse it all is for him. And he never complains.
I’m going to work on gratitude. Ten things:
- I’m grateful that the mornings are almost always sunny.
- I’m grateful that I get to have mini-visits with neighbors who are out when I walk the dog and they are all very caring and give me hugs.
- I’m grateful we have the dog so I have to get out of the house for at least two walks a day and two other quick outings.
- I’m grateful we live in a beautiful neighborhood with wonderful people who are making dinners for us every other night.
- I’m grateful we have three fabulous kids who love us and check in regularly, caring family, along with many many friends.
- I’m grateful we don’t even notice the heat because we have air-conditioning that works well since we replaced it two months ago.
- I’m grateful my brother-in-law has been here to help for a month (he leaves on Wednesday.)
- I’m grateful I am healthy.
- I’m grateful that except for his Multiple System Atrophy, Larry doesn’t have any other health problems or any dementia.
- I’m grateful I have a book to read next to my bed that I haven’t read before.