Where Are We Now

So where are we now? I’m on this endless road that goes from paved to dirt, twists and turns, and has absolutely no signposts.

Yesterday was a good day, after a good night of sleep rather than the previous night from hell.

Yesterday, Larry was awake much of the day, rather than asleep most of it.  He was able to help support his weight a tiny bit when we did the morning transfer.  He wanted an English Muffin for breakfast (which he wasn’t able to eat because he couldn’t move it around in his mouth, but he still wanted it.)  He asked for his glasses and the sports page of the paper, (although I’m not sure he read it).  His breathing was relatively clear.

Is this an improvement or a momentary blip?  He said he was a 5 out of 10.  Several days ago, with awful symptoms, he said he was a 5.  Perhaps the symptoms don’t determine his state of mind.  I almost felt like yesterday was worse for him in the sense that he had more awareness of what he was going through.

I don’t know whether to be cautiously hopeful or worried about what’s coming next.  As I type this I think, “just stay in the present, Nancy, you will never know what’s coming next.”

Adjusting to a “new normal” has always been hard, throughout this disease.  Emotionally and logistically.  Are we in another damn new normal?  Are we at the end?  How many new normals can I stand?

The impending symptoms of death listed in the book given to us by the hospice are all symptoms of Multiple System Atrophy, things he’s experienced on and off for several years – breathing irregularity and congestions, urinary and bowel changes, body temperature fluctuation, difficulty moving food in the mouth.  A visiting friend experienced in hospice commented on his glassy, almost non-blinking eyes and said that’s often an end of life sign but its another symptom of this disease, one  that we’ve experienced almost a year.

Moving right along…

Yesterday was a good day in other ways.   The new hospice nurse was great!  He’s got lots of useful experience and had already read a bit on Multiple System Atrophy before he came. Hurray!  He arranged for me to have a liquid version of the Xanax so no more crushing pills in the middle of the night.  He lives not far from us so said it would be easy to stop by.

The awesome CNA started five days a week.  She can help me get him cleaned up, dressed and moved from the bed to his wheelchair.  I’ll hire the same person I had before for at least one weekend day.

Friends came over yesterday.  She took me out of the house for a little window shopping in Venice.  Her husband stayed with Larry.  He also fixed a bathroom faucet and ordered a part for a kitchen faucet.  They kept Larry company while I napped, then showered.  They cooked us dinner and helped me get Larry into bed.

Larry’s son Cody arrives tomorrow for the weekend.  I’m so glad!

I have a patchwork of support that has worked this week.  What will I do next week?

We give love, we receive love.  We keep breathing in and breathing out, putting one foot in front of another in this very long journey.