Caregiver’s View of What Will 2019 Bring

What will 2019 will bring?

The holidays are officially over.  On Wednesday with the help of our CNA I dragged the Christmas tree to the curb for pickup today.  Last night a neighbor put our boxes of Christmas stuff up on the garage shelf.

Putting away the holiday decorations has been bittersweet.  Last year I wondered if we’d have another year to celebrate together.  This week as I put them away I didn’t think about next year, just that I was happy we’d had this year.

New Year’s Eve we went to a party – first time in many years we were out past midnight.  Friends brought the ramp from our house to the house of the party so Larry could roll right in their front door.  He got confetti bombed at the stroke of 12.  I keep finding glittery squares around the house as they fall out of his wheelchair and they make me smile.  It was kind of a normal night.

It’s easy to get jealous of friends who are in London or in Paris.  Friends who celebrated with family.  Friends who are headed out on their winter cruise.  Family who are skiing.

So I muster my energy and get us going.  We went to the beach in the golf cart for a sunset.  New Year’s Day I took out the kayak for the first time in about 9 months, and  I got Larry on his recumbent bicycle.  He struggled keeping his feet on the pedals and he pedaled very slowly but he made it down the street and back with me and the dog trailing in the golf cart as an emergency pit crew.  Two nights ago, we had a picnic dinner by the firepit.  Yesterday came with me to walk the dog for the first time ever, rolling the wheelchair out the garage and down the street to the paths that meander through our community.

What will 2019 bring?  I have no idea.  I can’t imagine it will be a good year.  What do I wish for?  Maybe less energy fighting the medical system and more time enjoying each day.

I asked Larry what he thought 2019 would bring?  What did he hope for?  He said “to make it to February.”  His symptoms have been pretty controlled recently so his comment shocked me.  “I’ve always hated February.  I just have an instinct about it.  Black February,”  he said as I questioned him more.  I asked if he’d ever felt this way before and he said no.

His comments sit heavy with me.

He’s seemed in pretty good shape.  But it can turn so quickly.  All of a sudden yesterday morning his breathing was awful.  He was gasping, panting rapidly.  Here we go again.  The day was full of challenges. In the bathroom. Eating.  On and off gurgling breathing.  A rough night.

Today is better.  Our first hospice volunteer from the Transitions program is visiting.  She brought us Indian food for tonight’s dinner.  I’m writing this in a rocking chair on the screened porch of the little town library.

Who knows what 2019 will bring for any of us.