THE THIRD MORNING....

Today its been three days since Jean's passing.  Last Sunday, March 22, 2026 I was sitting in my chair next to him, letting him know that I was leaving for a short time but would return in time for his lunch.  The look on his face told me something had changed for him.  He said, "my lungs are worse, I feel more weakness in my arms and legs...its time to call palliative care."

Months ago we put a plan in place that he would live as long as possible, until he reached his "lines in the sand" per palliative care.  Palliative care comes before hospice.  They help you navigate a more peaceful end of life process.  In the State of Maine, we have the option for MAID (Medical Aid in Dying).  Not all states offer it so after Jean expressed his sadness for his disease by trying to drown in the pond we live on last September, we all (doctors/family) took his choices serious and pursued a way he could do things his way.  We weren't sure he would qualify with the FTD (dementia) piece of his diagnosis because if you have dementia, you typically dont qualify.  The palliative care doctor sent him to a psychiatrist who deemed him competent enough to make this choice. 

That Sunday was full of lots of tears as we all knew this day was coming but like they say, you're never really prepared for it.  I messaged the palliative team and MAID coordinator knowing I would still have to wait for business hours on Monday to get any response.  Monday morning an early text from Caz, Executive director of Maine Death with Dignity texted me..he apologized for the early hour but brought me comfort with his offer to help.  I needed that lifeline!

As the day progressed we learned that one of the doctors in palliative care was on vacation.  She was the key player who prescribed the lethal medications and we needed to access her for an assessment on Jean's competency before meds could be ordered.  Nurses, support doctors and Caz all reached out to her and she agreed to zoom call us weds.   He was so anxious and ready to be out of his failing body.  He would say he was going to "euthanize" himself and would tell anyone who walked through the door.  

Jean's FTD was not like a normal dementia.  He could remember most everything, except for what happened in the most recent past. (TV shows and familiar old movies he would watch over and over and still forget some parts he had already seen a million times).  His behavior was more child-like as he would talk in more simple terms, share tragic stories from the news and get really pissed if the Bruins didn't have a good game! For years he and I had discussions about what we would want if terminal and it was no question in my mind when we heard Maine had the option for MAID...we would pursue!  It would have been the same for me if roles were reversed.  

Jean was a classy guy.  His thoughts were planned before he said them and he carried himself with confidence in who he was and what he believed.  He took his management job very serious and would not let us post any photos of him on social media that were not becoming of a man who had worked himself up to this position.  33 years at that job, he could have run that place!  He knew the ins and outs and when he was fired for his behavior, I was so mad nobody contacted ME before this tragic ending of a man of his caliber!! (Its no surprise to me that 2+2 it was politics and small minded people behind it-if they only took the time to know him, his family would have been spared the sadness of watching him explain "his side" without even knowing what his diagnosis was at that time).   For months before I had seen changes but I didn't even think anything had spilled into work as it seemed to be going so well per our date night chatter.  The way the company handled this whole situation was unprofessional and painful for my family.  I would have loved a simple apology as his diagnosis came ONE WEEK after his firing and it all made so much sense!  

Jean was eventually granted long-term disability and ALS got him early and fast SSDI so I am able to keep up financially.  If you love your family but do not have a life insurance policy and your finances in some kind of order, call me for a name...I have been well cared for!

I talk about these things now that he is gone.  He would NEVER approve of me putting some of this out there...mostly his employment information but my heart is so hurt by the whole thing, I just don't give a F. 

Lets talk about my amazing kids.  They were all present for his passing.  With shaky hands and watery eyes, my oldest, Branden handed Jean the lethal medication he and Caitlin mixed up with careful instructions, rubber gloves and a face mask!  I watched my sweet boy (and he is the epitome of Jean - kindness, calm, well spoken, knowledgeable and loving) hand his dad the death drink and calmly instruct him with a quiet stern voice.  I asked him to do this because there was no volunteer available on a weekday with short notice.  I knew we were tough enough to make it happen for this man who had suffered long enough.  The pride I felt in the moments watching him will never be forgotten.  Cameron and Marleigh were right by my side and Makenna stepped away for the first few moments.  She has been his caretaker along beside me.  He listened to everything she suggested and she has deemed herself his favorite child.  This was not easy for any of them.....but they did it for him! 

He passed quickly and exactly as planned.  Surrounded by his siblings and their spouses, my mother and brother and the beautiful family we had created together. 

The day before, my amazing group of friends came over to visit.  Jean loved our friend group.  We called ourselves a "framily" (friends that became family) as we would celebrate the holidays together and travel as a pack.  Our first trip to Key West was epic.  Its where we all bonded and discovered we didnt need to have the same type of careers or interests to spend quality time together with plenty to talk about.  Jean loved that vacation so much he couldn't wait to do it again the following year.  They have a boat race in November so we got the guys a table on the water to watch the races up close and have drinks while the girls shopped and sunbathed.  He talked about Key West every chance it came up!  My friends reminisced about it and promised him they would take some of his ashes to waters of the Southern Atlantic for him.  He was so excited at that thought!  They brought food and drinks and stayed for hours and it brought me more peace than I can express!  Their husbands came along as the work days ended and all had the chance to say goodbye.  It was beautiful and I am so grateful to them!!

The diagnosis of ALS/FTD combination is no joke!  He got the worst combo I can think of.  His life expectancy after diagnosis was 2.5-3.5 years.  He lived 17 months.  FTD took away his ability to sympathize or show emotion.  It regressed his sense of humor to that of a child.  He was always very methodical with routines for daily living but these got a bit more intense as he progressed.  He would claim that a lot of the things he did made it easier for him so I never complained and tried to see the brighter side of it.  Because of this he wouldn't eat much and his weight slowly krept down.  That's one thing they dont like with ALS, it means the muscles are wasting.  Last September he made his wishes known....he did NOT want to fight this in front of his family and friends.  He knew his God, he adored his siblings and missed his mom and dad.  Its a small thing for me to make sure his eternal peace is in place.  He wouldn't hesitate to do the same for me!

I haven't cried much since Thursday.  Peace?  Relief?  I don't know which but when I woke on Friday I felt like a weight had lifted (like you hear about but don't realize what stress feels like until its not there on a constant basis). I said all the things I needed to say, he made his thoughts and wishes clear long before the diagnosis.  I know I'll continue having days where I just break down but this clear breathing and thinking are refreshing for me.  I was in the process of finding a counselor when all of this happened.  I was hoping for a relationship with one before I truly needed them.  I'll followup with that. Im not stepping back from work for much more than a week as I have the best job and the distractions are so necessary now!    

To all who have reached out to us.....my heartfelt Thank You!  The warmth of seeing someone taking the time to send their thoughts and prayers is what keeps me going.  I've read each post as Im preparing to try to sleep and I am so grateful for the relationships I have!!