The ROYFAM Story

I've had some emotional struggles these last few days.  I was getting ready to call it a day when I noticed my girl had made a post on facebook.  Im copying her words here for those who dont have facebook.  I am so incredibly proud of these kids of mine!!  They are tough!! The past 17 months have changed our family forever. Watching my dad go through ALS and FTD was something I can’t fully put into words. What he carried, physically and emotionally, was more than most people will ever understand, but he did it with so much strength, honesty, and love. As a family, we did everything we could to support him. Being a caregiver for someone you love means wanting to do anything and everything to help and keep them. My mom carried that in every moment, and alongside my siblings and I, we stood by him through every step. But through it all, my dad knew exactly what he wanted. I was always amazed by how strong-willed and certain he was in that. My dad was always clear about ...

You can never imagine the moment...but then it happens...and then its gone.  Today I decided to clean the closet, just to keep my mind occupied.  I've been procrastinating taking care of my side and trying to take over his side for years!  I was fine with pulling his button shirts of hangers and gathering the jeans but when I opened the drawer that held his t-shirts, underwear and keepsakes, my eyes welled up.  But I refuse to wallow...we knew what was coming and we were all pissed about it too!  We were blessed with an extra 14.5 months with him and we did not waste it.  We said what we needed to say, we teased and laughed.  We aren't perfect by any means but the atmosphere here was healthy for all.   I can't believe its already been a week!  I'm sure he's walking with old friends, his parents and hopefully spending time with God.  You know, his mom wanted him to be a priest when he was young!  He attended Catholic school, was...

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 t...

Headed into Christmas and not taking this one for granted, that's for sure!  Its simplified...the tree has only glitter ornaments, none of the usual ones we hang every year...I have no reason why, only that I didn't feel up for going through the boxes and I had the glitter ornaments here at the ready from a Hobby Lobby trip a month or so ago. Kids decided that since they are all "coupled" up this year, exchange names by couples..one big gift for both with $150 limit!  Sounds easy...but my gift giving ideas SUCK!  My girls are so great at it...I always hope I don't disappoint! So what's new here?  Not much I am happy to report!  Jean's progress is slow now since the bipap machine in January!   He has NO ALS/FTD medications and takes a THC gummy to help him sleep...which he does 10PM-6:30AM every single day!  His life is like clockwork.  6:30 shower, 7:00 treadmill for 20 min, sit for 10 after the walk to catch his breath (breathing is still ro...

I'm sorry if it makes you uncomfortable.  I can be mid sentence and tear up.  My heart is aching, its a heaviness all the time.  I will be ok but sometimes I cry out of nowhere.   It's hard enough to know Jean's body is failing him...sometimes in ways he doesn't share with me. I have to ask him very specific questions or ask Makenna to ask because he's more open with her.  I don't know if he is trying to protect me or if he feels I'm over-reactive to his issues and will report to the doc (that's usually what I do as symptoms drive the disease and remedies for the symptoms). But this dementia thing with a man so young is cruel!!  Our youngest JUST graduated last June and here we are preparing to watch this long goodbye ending.  I'm really mad about it all!  Trying to prepare financially, socially, plan for adjustments to the house to prepare for wheelchair accessibility, all the questions of what will happen first, who am I now, who will I be ...

  Giving a post like this a title isn’t easy.  I decided not to start with a title and move to the body of the writing and then I will decide what title will work. This weekend sucked!!!!  I struggled a lot with emotions, memories and my thoughts got the best of me at times.  I pushed through and was honest with my girls about how I was feeling and they are so kind to me with extra hugs and chats.  I’m so glad they are here!!  I need the distraction of chats.  Chandler is so awesome at chatting - I’ve definitely met my match in the gift of gab department and I just love his honest approach - most of the time.  Haha. He makes my heart happy and is so willing to put his emotions out there!  If he ever reads this, thank you for choosing my girl - I love that you had to chase her love down like I did Jean - I wish you as many amazing years together!! It makes you really cherish them! Some of the details of this disease I choose not to share here....