The daily around here.

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 from my Iphone, while sitting in the coziest place on earth.  I used to wake in the early mornings before my family to blog my thoughts from the previous day.  I would pay attention to the world around me so I had stories to tell...Ms. Marleigh sure did make for some good memories for me!  Treasures for the future! 

I have been at my desk all day, bouncing around filling out insurance paperwork, updating the website and trying to tackle last years taxes - I seriously despise doing them and should find a bookkeeper. (know anyone?)  I am organized, everything is in folders and printed longform because, well, I'm OLD school.  I gotta be able to put my hands on that document!  

Jeans life insurance policy has a terminal illness clause in it (I guess a lot of them do, I didn't know this.  Another thing you don't think about when you're young and healthy).  We are going to try to access that.  I remember Jean wanting to cancel this policy shortly after we purchased it for a policy from a company he heard advertise on the radio!  I immediately thought "he's lost his mind" he was so fixated on it, calling into their number, he got a gentleman who was so sweet to him, kept him on the phone for what seemed like hours (probably was) and Jean was requesting the quote/documents and I told him, no commitments, we need to discuss.  The next day he went to work and I found those notes and destroyed them.  Phone number, contact, etc.  I was so upset he would do this.  I was confident in the policy he currently had and trusted the agent who sold it to us....so did he!  It was just one of those ahhh-haaa moments I look back at and think, so weird I noticed then he was changing!  I typically let Jean make most of the decisions about financial/insurance things but lately I was the one deciding more!

Alcohol made him so bizarre.  I didn't recognize that man, I didn't even like him much!  It was a tough time!  He didn't drink regularly, just a few times a month but when I saw the beer come out, I knew I was going to like him less the next day!  

Another thing I was noticing...anyone who knows us, knows I am the dreamer and often (still) ask Jean to make me lots of things for my house and studio.  Like woodworking/benches/tables etc.   He never told me no.  Always asking if I was all set...be it for something to drink or projects I had started.  It was just over a year ago, I was thinking of expanding my studio, moving out of the upstairs place I was renting for almost 17 years and finding something I could all my own.  Prices for properties was crazy and I looked in many directions for something that would fit and it always came back to "The Barn" at my mom's house.  It was officially a garage but we referred to it as a barn based on its design and the fact it housed a horse and a pony for several years.   Mom supported the decision and wanted to see me make a go of it.  I talked with Jean, always my cheerleader, who said "no".  He didn't want to spend the money when we were getting so close to retirement.  I understood that but I felt confident it would be a good move.  My gut screamed at me to get this going.  I contacted a life coach who gave me 30 minutes of her time and took every excuse I had away from chasing my dream.  I'm too old - take your age out of the equation, its all mindset she would say.  I had the numbers and the means so I called the bank.  They did the paperwork for me and I called Jean to tell him to meet me at the bank at lunch.  He never bucked.  He showed, signed and never said a word more.  So so strange!  BUT I RAN WITH MY MONEY and pressed on to find a crew to build my dream!!   Fast forward to "The Barn @ Kelly Roy Photography" today and he is the first one to praise the changes and take the compliments for me!  During the build I asked him to help me with painting, something he could do so fast and precise before was taking so long, had so many runs and he left the tape on far too long (he would be the first to tell someone this).  I am always grateful for his help.  I know there's a lot I can do on my own but he has always been better at EVERYTHING!  

Its so weird how I can see it now.  At least two years of just watching him slip away.  The conversations, the compliments, the support, and the caregiving.  I was so upset when he let my brother cook burgers on our grill!   He didn't even stand around in a man circle drinking a beer and visiting, he hung inside just watching us pull things together.  The understanding of the disease makes it so much easier to give him the room to be who he is becoming with grace.  I've been reading posts on support pages and I'm devastated at the things I read. The vile behavior, some divorces (even though they know their loved one has dementia) and I am grateful I have a gentle soul to live with.  I hope this continues.  I did just tell him I feel like my chest hurts...probably gas and he said "Oh".  If that's any indication of where we are! 

He no longer drinks beer or any alcohol for that matter.  If you ask how he's doing he will say great...sometimes he pats his chest and says "I've had some heart issues" but nothing about his diagnosis.  Not that he's denying it.  He can't deny the hospital stay anymore but his brain wont accept the future/diagnosis/prognosis, whatever.  When I talk very frank with him about what the future can be, he says "well hopefully it wont be that bad/ALS".  Dementia is never talked about.  We just answer him like its the first time.  Kids are so great at this too! 

For now we don't have a lot of change or decline from the hospital.  He's well rested, fed and hydrated so he's thriving.  Who cares that we go to Dunkin' Donuts every morning and Aroma Joes every afternoon because its part of the routine.  So happy he's  here!  

~kel~