Small Steps

Tuesday sunshine streams through the front door glass and through the windows.  As I sit here in the new office space, the sunshine through the window lets me see that the yard needs mowing again, so that’s another chore to add to the never-ending list.

Yesterday was a good day, all in all.  I talked to Dad’s primary-care physician finally — and we’re waiting to see a few things before decisions about hospice are appropriate, she advises.  First, does his mental state improve once he’s off the Duragesic patch?  Second, can we get his pain under control?  And third, what does his nephrologist say?

By last night, with the patch off for 24 hours, he was clear and himself.  We had a good conversation, and he recognized my cousin Carolyn immediately, which was great.  They had a chance to talk, and that was good for both of them.  He was tired, but clear-headed.  He hadn’t had any pain meds since 11 a.m, but it was also not a dialysis day; this meant that he’d had PT in the morning, taken the pain pill, and been in bed all day.  We’ll see what the pain is like today, when he has PT, then dialysis.

Today will give us a better sense of how the pain is.  Dad’s doctor is waiting to have her call returned from the nephrologist, so we’ll see what happens then.  She doesn’t want any decisions made based on his mental state on Monday, when he started pulling needles and tubes out at dialysis.She and I talked for a while, agreeing that Dad’s pain level was our key here, and his quality of life our guide, coupled with information from his nephrologist.  So we’re on hold, sort of, waiting to see what happens.

But she knows I’m under no illusions about the future, too.  I’ve talked to cousins and aunts now, and they’re aware of the changes, the talks with doctors, and the decisions.  I texted everyone on Monday, after talking with Kay and making decisions about actions.  By yesterday, I’d talked to everyone.  Decisions will be made, but not necessarily in the next few days, which is a great relief to me, at least temporarily.  Those decisions will get here soon enough.  I have space to breathe, to work, and to think now.  And — fingers crossed — to enjoy Dad, clear-headed and conversational.

Yesterday I made progress here at home, with my friend Patty helping me.  I worked in the kitchen, clearing more cabinets, wiping them out and cleaning them, and sorting through food, spices, dishes, and everything else that was crammed together indiscriminately.  Now the food items are all together in the new little pie safe I bought in Lake Charles at an antique store/flea market.  Spices are in one covered container.  Only the cooking oils and salt and pepper and chili powder are in the cabinet near the stove.  In the narrow cabinet space between the refrigerator and the stove, where all sorts of things were shoved and way out of date, more cleaning was necessary — lots of mouse evidence from gnawed bags, loose beans and cornmeal, and so on.  Now that’s where the boxes of storage bags, plastic wrap, aluminum foil and garbage bags now get to stay.  They’re organized, easy to get to, and centralized; they’re no longer scattered in three places.

We’d stop and talk.  It’s the first time she has ever been here to Egan, so she was interested in everything.  She got to experience my day, with people simply walking in the house and chatting.  She met my good friends here and got to talk to them.  She and my cousin Carolyn talked.  After she left, I turned to Carolyn and said “Bessie Cobb.”  Carolyn smiled and said “I’d already thought that!”  Bessie was one of our grandmother’s oldest and dearest friends, a short little round woman from New Jersey who was just as straight-talking and direct as they come.  Bessie was just another one of our family, and Patty has always reminded me of Bessie.  Now I have confirmation of my impression.  Shared memories and experiences with Carolyn anchor so much for me.

We’d talk and visit.  Then it was back to work.

Typically, I was hoping for more, but then I always do.  Patty got the clothes washed, dried, and folded and worked on Kay’s room while I worked in the kitchen.  She’ll come back on Friday, and by then I hope to have other progress evident.  Now I’m washing Dad’s clothes.  I’ll do a bit of work here in the office area while the clothes are washing and then drying.  Maybe, only maybe will I get back to the kitchen area.

Small steps and progress — I can see this, though there are moments when I look at all that is left and get discouraged at that.  I forget just how much has been done in a short four weeks.  That’s me — I typically expect more to get done than is truly possible in a given amount of time.  I’m learning, though, to keep focused on the progress.

So . . . today:  clothes for Dad, more organizing of boxes in here, more garbage bags of “toss” and more boxes of “donate” — and then maybe the yard.  If the riding mower is working properly.  We’re supposed to get more rain on Saturday, and I want to get the yard done before another deluge.  The ground is soft, but it isn’t too boggy for mowing.  Not yet.  The clover is attractive, but we don’t live in a wild meadow, after all.

Sometimes I feel as though I’m one of those kid’s toys, the Weebles.  I get knocked around, knocked down, but keep popping back up after a little while, back in place.  Now, though, I think I’m a Weeble on a roller coaster.  The roller coaster ride differs every day now, with one day bringing me to the very depths of things when Dad is in great pain and moaning that no one should have to live like that, and the next taking me to the top for a little while — for a moment of respite when he’s pain-free and clear and talkative — before the track plunges down again.  I know the roller coaster won’t last forever and that at some point it will even out and glide home and stop.  Until then, I’ll breathe, and like the Weeble I’ll roll around, bounce around, and stabilize.  Repeat.  Repeat. Repeat.

Visits like the one yesterday from my cousin mean so much. She’s always been more like my older sister; we’ve always been very close.  I talk about needing a “Carolyn fix” at times, and those are always good for me.  We talk about all sorts of things.  Our mothers were sisters; they’re both dead now.  Our grandmother is dead.  Our aunts are gone too.  Her sister Terry has been gone for few years.  My sister is 7 years younger.  Carolyn and I talk about being the family memory now — and her children and Terry’s look to us.  It’s a sobering thought when you realize that you are now one of the family elders.  In our rather matriarchal family that’s a big responsibility.  A joy at times, but a responsibility.  As much as we talked to our mothers and our grandmother, there are still questions we’d love to ask, mysteries we’d love to get solved.

I’m energized today.  Tired and allergy-eyed, but energized and mobilized.

Progress yesterday.  Progress today.  Small steps.  Big gains.

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One thought on “Small Steps

  1. Jim

    Dr. Ware,

    Enjoy keeping up with your labor of love. Emailed you last week re: buying you dinner in Lake Charles, plus paying a bit of my debt…but didn’t hear back. Would next weekend work?

    I’m attaching a link that previews my cookbook. Should have the actual website up next week, and, the entire table of contents.

    Regards, Jim

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