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Headed into Christmas...

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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...
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Sometimes I just cry....

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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 ...
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The power of chocolate chip cookies!

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  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....
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Looks are NOT everything and Makeup covers a multitude of _________ :)

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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...
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Recap the last few weeks...

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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 ...
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All Good here!

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...
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Love my teams!

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...
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