The ROYFAM Story

I’ve read that intubation was the final step for ALS patients so I was incredibly sad.  This all happened so fast and though we had conversations about what to do if this happens I wasn’t prepared.  I texted the update to JoJo and my mom. I made the hard call to Branden telling him to wake his siblings and tell them I needed them with me.  He was calm and collected like always and said he would gather them and come to the 4th floor.   Seemed like they were all there within minutes. We were only allowed in Jeans room by twos.  Taking shifts to and from the waiting room throughout the day.  So many friends stopped by I needed them and they were there!  JoJo stayed in the waiting room all day! It was one of the saddest days of my life.  The kids and I went home that night as the hospital suggested I had been up all night and they didn’t have a great solution to offer me.  We cried, I showered, we cried some more. My gut was turning at the though...

 Over the holidays I was watching Jean decline rapidly.  He wasn’t sleeping.  He would attempt to go to bed, wiggle and thrash and then get up and tell me he was going to the living room to sit in his chair.  At first he would try to sleep in the chair and when he couldn’t settle he would turn on the lights and the tv..  I then learned he was making himself coffee in the middle of the night because he just couldn’t sleep.  His breathing was labored and he said that laying down in bed made it harder to breathe so he needed to sit up.  I got him a recliner so he could be partially upright.  Still I would check on him and find him hallucinating and sitting in the tripod position with his head down.  Talk about feeling helpless!   I didn’t know what I could do for him!  We tried gummies and they worked for a short time and then we called the doc for a prescription.  He prescribed trazodone.  I kept him on that for a few weeks ...

I’ve been sitting on this idea of blogging for some time now.  I can’t find another family going through this so I’m putting my thoughts down hoping it helps someone.  I am sure some will think I’m oversharing but it’s my attempt to keep those who want the updates informed and stop any potential negative chat about my family.   I'm Kelly,  a portrait photographer in Southern Maine.  Mom to four of the best kids a mom could ask to raise!  Wife to the love of my life (after I wore him down and convinced him I was a good catch!)  We are just a family of grownups now coming together to spend quality time loving up on my awesome hubby a/k/a Jean/Dad.  For quite some time now Jeans been changing into someone I was struggling to recognize.  He would drink more heavily than normal and other personality changes would happen.  Hard to describe but there were times I would feel ignored, jealous, embarrassed and lost because in our 30 years of marri...