The ROYFAM Story

Yep, 79 days...just over two months...I ask Chat GPT all the time because I find the days feel like one long one sometimes and when I am in the mood to ask how many days, I don't even have the mental capacity to look for myself.  Im grateful for computers I can just ask....I do know when its the weekend though...I hate it!  Weekends used to be for family, for rest and hanging together and now I hate them.  I fill the week with busy work.  Gardening, groceries, yardwork, reinventing my gardening and yardwork...then Friday rolls around and my head goes into the clouds.  I miss my constant date.  Not gonna lie, sitting here at 11:00pm on a Saturday night I just hate being alone.  Quiet house, nothing good on tv and hanging onto any and all messages from people reaching out to me but feeling bad I'm such a bummer so I try to close the conversation so I don't sound pathetic.   I know people understand.  I get invited to do things but sometime...

 Monday was Jean's birthday.  Full of emotions and indecision about what to do to celebrate him.  I decided to keep it normal.  His favorite meal for dinner and one of the only times he would partake in sweets was on birthdays (besides his love for @theblushinghen bakery stand/Tracie's chocolate chip cookies).  Got his favorite Alfred Tracks ice cream from Shaker Pond Ice Cream to share with the kids.  No song, just steak tips, roasted potatoes, asparagus followed by the treat.  I miss him so much! Thursday made 8 weeks since his passing.  How is it even possible....time goes on...etc etc. you know what Im saying!  I sold his boat that day, no surprise, I cried again.  Kids talked me into a burger for dinner at a local spot after the sale and I was glad to get out.  Saw some familiar faces and didn't cry until I was back in the car for home.  It’s the quiet times that my head screams the memories and I honestly can't believe th...

 The days will pass and its over a month before you know it.  I've had some hard days and I've had some days I feel so loved its easier to carry on but I wouldn't erase the love we had for these hard days! It's 4:51am as I write this.  I woke over an hour ago from my sleep with my brain rushing with thoughts of things I still need to do.  Its a never ending list in my brain.  Can't shut it down and really, don't want to.  It gives me a needed and wanted feeling and right now, things are just a little lonely sometimes.  My kids give me so much strength.  I have always told them with life comes death.  Didn't expect I would get more than my fair share of unexpected loss so close to my heart: my dad, my sister-in-law, my own battle with cancer and my soulmate.   I could wallow, walk around sad and depressed all the time but life means more to me now than ever....leaving me to think, did all the loss teach me anything about my own life....

 Sundays are for rest.... Today I took it slow.  I purchased some yellow flowers for the planters in the yard.  Im feeling I need the pop of yellow to pick me up, not my normal go-to.  I'm a really big fan of pink...but today yellow pansies.  I saw Allison and Tracy and chatting with them was great.  I am too social and generally happy to stay home in a ball.  I'm trying to get away from saying I'm "hanging in there" and today I said "I am so grateful for the amazing love I have been shown...almost 40 (combined) years with an amazing man, our grown children handling these last few years with more understanding and support for each other than some adults I know!  I find myself going back to my 19-year-old self and her struggles when my dad died in a plane crash and took our family by shock.  How I processed the situation then and grew to teach my children to speak of death, expect it will come and know they will be okay!  They know they h...

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....

I have to finish this bookwork for taxes.   I now need to secure insurance for Jean and me...again...long story. I have sessions to edit. I need to clean and vacuum the house again. My laundry is waiting....SQUIRREL!  Need to update the peeps! He's doing pretty good!  Driving, yes. My chauffer mostly but he does venture to Hannaford, Home Depot, Dunkin Donuts (remember everyday at 8am), Aroma's and other local jaunts for a list of items.  Its funny to write that...another ah-ha moment!  Marleigh's graduation party last June.  Jean was wandering aimlessly most of the morning as the rest of us scurried around prepping.  I asked him to prepare the drinks in a cooler, get ice and a few cases of soda.  He wandered and I was fuming! One hour before the party I asked him when he planned to get the ice and drinks...he looked at me wondering.  His reply (a cover-up) was I need a list!  I told him that Marleigh had texted it to him..."oh, I d...

I don't re-read my previous blog posts so I apologize if I'm ever repeating myself.  I talk to lots of folks who ask how we are doing and I forget who I told what so just scan with your eyes.....blah blah blah! These last few weeks have been about the same for Jean.  I notice he repeats his questions more...and gosh he really gets into the headlines!   You need news info, he's probably your guy because he gets excited over it all and sitting here a good part of the day watching TV he's well informed!  His routine is so grounded its comical.  Wanna run into him?  Go to Lyman Dunkin Donuts around 8:00am....or Alfred Aroma Joes in the 2:00 hour!  He loves little errands and just getting out for drives (he is usually running my errands or chasing down a marketplace find for me!)  I feel so grateful he's so with it!   Last week he had a pulmonology workup at the hospital.  I told him several times it was a longer appointment but he ...

I’ve been silent - because I’ve been sick and now I’m officially silent because I have no voice!  This cold or flu whatever it is just hanging on makes me crazy!  Today I feel more normal - except the voice and the cough still lingers.  Jean as avoided it so far - tells me he doesn’t get sick so he won’t catch it! Where’s that palm to face emoji when I need it!  He’s actually doing so great!  He’s finding things to keep himself busy - I mean, I’m finding things to keep him busy.  It’s so strange this place we are in. He’s always had an extensive to-do list of his own - no matter the weather outside.  He always kept the garage cleaned and somewhat tidy but now he doesn’t see it or feel the need to tend to any of it.  He did fold my laundry for me - always grateful for the help!!  But it’s strange to watch your person change.  I’m so glad he’s kind and gentle I have seen some stories I hope I never have to experience.   Last week he b...

2/5/24 Jean woke me at 1am…he couldn’t sleep.  I could tell he was stressed - I’m sure worried he will fall back into that hell hole again.  He asked if  he should take a gummy (THC) and I immediately replied yes!  He used to take a half and now he doesn’t waste his time - the guy slept until just after 7am.  I’m truly so happy to see him sleep!   Yesterday we saw cardiology.  Along with his FTD/ALS he was diagnosed with HCM (hypertrophic cardiomyopathy) in that first hospital visit in October.  Lots of younger athletes die from this - the valve in the heart is a bit longer than normal and when the blood flow is fast the valve blocks the flow so they medicate him to slow his blood rate allowing the valve to perform as it should.  Doc was happy to see how well Jean is doing.  The last visit he was in his sick phase.  That carbon dioxide was creeping into his system.  He does want to send Jean for a CT scan to be sure no damage w...

Thanks everyone who took the time to read my posts.  I’m happy you’re here and grateful you want to know what’s up with my guy and our family.   When Jean was in the hospital I ordered a bed - it’s like a hospital bed but aesthetically pleasing 😜 He needed to be able to raise the upper body slightly and pillows weren’t cutting it.  I didn’t hesitate when my friend Robyn shared that she’d done all the research and this was the best one for the money.  I have NO regrets!!  This thing is perfect!  I loved my old sleep number bed so much I was struggling to change but elevating the head for sitting up blogging, finding inspiration and watching reels is a game changer...oh and Jean can breathe and sleep next to me again!  Head up, feet up, little massage…Jean doesn’t like that part - weirdo!  Says it bugs him! It’s ok I just use it when he’s not in bed.  I fell asleep writing this!   First of all, I haven't blogged in years, let alone f...

I got a great night of sleep.  Made my way to the hospital much later than the day before as the hospital does a briefing at 7am and they prefer to have the halls quiet during that hour.  I respect that.  The staff there was incredible to us! They were compassionate and informative.  Jean was already awake and looked so great!  Still tubed up but nurses said they were hoping to take it out and see how he responds.  They seemed confident and that scary feeling of two options, neither of which were ideal, didn’t seem to play into things as they did just 30 hours before.   I missed the untubing and walked in on him coughing and wiping his mouth.  The nurses were impressed with him, not only how he handled this but everything leading to it!  Many who had attended to him over the past few days came in to check on him, amazed he was alert and without a tube!  His voice was so funny when they removed it.  Branden was with me and we laughed...