We’ve been in Green Bay and Appleton for a couple of days ( I think). Today is Thursday and it was our turn to work the night shift with mom last night. My mother, who will be 92 on September 13, is incredibly mentally alert and sharp. However, she has spinal stenosis, a severe spinal compression that effects the body’s entire nerve system. Symptoms, I am told, are similar to the tingling sensation you feel when your arm or leg falls “asleep” and then “awakens” only more severely and without abatement. Over the years she has treated this condition with an ever increasing dose of pain medication as the compression is irreversible. Surgery is a possibility to lessen the effect but given Mom’s condition and age the prognosis was not favorable for the surgery nor the ability to pull through the general anesthesia. So, it’s an end of life situation. Mom has decided to play out her life on her terms, with the support of our family. And so what was expected to have been a gradual decline over 90 days or so has accelerated into a two to three week timeline.


With our small family coming together over the past couple of days, she has held center stage fully engaged in conversation despite an ever increasing regimen of fentanyl and morphine. Yesterday she wanted a party and within a few hours my sister, Carolyn; brother-in-law, Wayne; Barbara and I brought in food, wine, flowers and transformed her room into a festive environment! Mom had a ball!!


Since the end of life is never known, we are staying at Mom’s apartment and took night duty to give Carolyn and Wayne a break. I need to take a break right now. I’ll be be back.


Okay, back to the blog after a 12 hour hiatus. Once the medical support staff starts their rounds, etc., our schedule becomes secondary. One side effect to spinal stenosis is anxiety. This morning Mom had an anxiety episode. So what began as a normal start to the day quickly escalated to a struggle to keep her in bed while trying to manage her demands for more coffee and wanting to move. Eventually we were able to have medicine administered that helped suppress the attack but had to live through the wind down process and coordinate cleaning up the aftermath. Her vitals are strong. Her ability to carry on conversation in spite of the significant pain medication is unbelievable. We’ll need to go back to the boat and get more clothing, etc. if we’re to stay here much longer.


Speaking of which, we see our tentative move on date as September 3. We have to coordinate weather windows and destinations. It looks like it will require 4 days to reach Chicago. I’m anticipating stops in Sturgeon Bay, WI; Sheboygan, WI; Racine, WI, then Chicago. A favorable weather window looks to be developing beginning September 3. We want to spend a couple days touring Chicago before hitting the river system. We would like to be in Illinois River by approximately September 12-14.


So we’re trying to manage a couple of things right now: Mom’s health plan, and our travel plan to get through the Illinois River lock system before they close in September / October for three weeks.


It’s been a long day and another awaits tomorrow. My parting comment is a question asked by my mother, who tonight asked: “Why do we wait until the end to tell people how proud we are of them?”


Good night.