Our FTD/ALS story - long post!
I’ve been sitting on this idea of blogging for some time now. I can’t find another family going through this so I’m putting my thoughts down hoping it helps someone. I am sure some will think I’m oversharing but it’s my attempt to keep those who want the updates informed and stop any potential negative chat about my family.
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For quite some time now Jeans been changing into someone I was struggling to recognize. He would drink more heavily than normal and other personality changes would happen. Hard to describe but there were times I would feel ignored, jealous, embarrassed and lost because in our 30 years of marriage I never expected I would have these feelings. He loved me and respected me, I was confident in that! He didn’t have time to have someone else in his life and we have such a great group of friends that we see each other weekly (or at least try).
I knew my battle with breast cancer was crap on everyone but he held things together and was the epitome of a rock to me! He comforted me and cried with me. When it came time for my decision to have a mastectomy he supported it because he knew it’s what I wanted.
A few years after my battle, his best friend Rick was diagnosed with colon cancer at 45. Shocking because it was an early screening his wife sent him to because insurance had finally decided not to make people wait til 50! He had a major surgery and chemotherapy and Jean was not as present for his friend as I had expected him to be. I wondered if my fight was enough for him and he wanted to keep distance of the stories/reminders. I would ask why he didn’t call to check on Rick and he would answer “he will call me if he needs me.” I assured him that’s not how friendships work but I also knew how raw the breast cancer journey was.
A year or so went by and I found myself feeling distant and sad about where we were. I thought our beautiful fairytale-like relationship was over and I couldn’t figure out where things had actually fallen apart. Was it the mastectomy, was it my weight bearing down on our relationship as much as it was on me personally, was it the fact the kids really didn’t need us much anymore? I knew there wasn’t anyone else - well I was pretty sure he didn’t have time for anyone else - I knew where he was all the time. He worked and never took time off. He was dedicated to that job and the people he worked with. He didn’t feel that was reciprocated anymore - when ownership changed hands he felt the shift in the whole company.
Spring of 2024 came along and Jean was still drinking when we would go out socially and I started to dislike him more and more. He wasn’t necessarily mean to me but he didn’t act like the guy I knew, my Jean. He would have moments when he seemed like himself but more and more I felt us pulling apart.
I talked about our fairytale life - we had mutual respect for each other, we showed our love, we raised our kids as a team and we covered for each other when we needed to divide and conquer. We bought our home in Lyman and I know almost every night I thanked him for what his hard work brought us. We would go to bed discussing stories about the kids and always said “we are so blessed, they are amazing” before going to sleep. We aren’t perfect, I’m not saying that - we both loved each other enough to live in peace. I was a crazy mom with yelling and screaming when the kids were little and chaos ruled the day raising four of them but it seems a shift happened when we moved here and peace took over the chaos. Again, never perfect…
This past summer my Jean didn’t want to do much anymore. No yard work, no combing the woods for fallen branches and clearing the land like every other summer. Looking back to summer of 2023 he was more obsessed about cutting the wood and burning an old pile he had for years. I’d find him out there at 6am sitting and staring at the fire with his 80’s rock music streaming from his cellphone in his pocket. Our relationship continued to feel strained but I love him so wasn’t willing to give up - we didn’t really fight - we just didn’t really talk much anymore. Like roommates.
There were other things I noticed about his personality. He wasn’t emotional about things that typically he would be. His brothers passing and his mom’s placement in assisted care. I would get emotional discussing the changes between us and he wound assure me he loved me…all while watching the road ahead as most of our talks were in the truck. He didn’t want to help me with some of my projects and his answer was no longer sugar-coated. It came with a straight up “no”. I struggled a lot with this because he always helped me. He never seemed annoyed or bothered when I asked for his help either so those first few “no’s” were tough!
There were a few instances where he would tell off colored stories at times and I wondered “what, where did that come from?” It was very much like living with a stranger. I thought he was going through a midlife crisis.
My mom sent me a video of him telling her one of his stories from his childhood. She said the story was not typical of Jean to tell and she was concerned about his breathing as it seemed heavy as he was sharing the story and he hadn’t really done anything physical to make him breathe heavy. I watched the video and noticed it for the first time myself and then I became obsessed with watching him. My phone is full of the videos and stills I’ve taken over these last six months!
I made notes of all the things I noticed and then I tried so hard to get Jean to call the doctor for an appointment. He refused so I started messaging the doctor myself. We’ve been seeing him since Branden was a baby so 28 years I was sure he would be helpful. He suggested an appointment and I got Jean to go willingly once it was set.
The first visit doc noticed he was different. My smiley guy had been replaced with a part-time half smile. He was thinner - had lost almost fifty pounds, his amazing arm muscles were gone and he was having strange twitching in his arms just above the elbow in the front. Easy to see in a tshirt. We talked about possible Lyme disease from being outside but doc wanted some blood work done. He also wanted to get some cardiac tests done and perhaps a consult with neurology. That appointment was in September and after that Jeans twitching got more and more and the heaving in his chest was bizarre. He said he didn’t feel pain but it was tough to breathe sometimes.
October 12 we attended Ricks fundraiser for cancer support. It’s a drag race outside at Oxford Speedway. A bit of a drive but Jean felt well enough and I was determined to help out! It was so cold that day! The wind was blowing right though us! Jean was already complaining of being cold and even with all my prodding he didn’t bring a warm enough coat to wear in the stands. We couldn’t stay the entire race he was just too uncomfortable.
Later that night Jean couldn’t go to bed. He wasn’t comfortable sleeping - his breathing was labored and he was too nervous to lay down. I took him to the ER. They kept him for three days. They ran every test imaginable. I told them my feelings about Lyme disease and they ran more than the usual tests to be sure they weren’t missing something.
He was so anxious to return to work. Cardiologist in the hospital advised against it but because Jean doesn’t lift or do physical work he agreed it would be ok. Jeans boss left the week before for new employment and left Jean to control the production floor so he was concerned about orders. He worked his regular work week/coming home so exhausted he would have to lay down in bed for a while. This went on the whole week. Our wedding anniversary came that Monday and we spent the day together driving through New Hampshire - something we love doing together. The ride was quiet and we only did half of the normal route because Jean was tired.
Tuesday came and he returned to work. He had a follow up appt with cardiology so I was meeting him there at 8:30. When we arrived he was standing outside his truck and told me he had been fired. Normally I would have thought it was a joke but something’s been off. I will discuss the firing of this exemplary employee of 33 years another time. He deserves more and I want to fight for him!
Today is Tuesday the 28th of January and we have fallen into a new routine. There’s another hospital stay in the last few weeks but I’m going to close this day here. More details will come. I wish I was writing about Marleigh’s cute little antics like the last time I committed to blogging. She was fun to write about and it made me pay attention to daily life more. I’m grateful for that!! If you’d like to read some of my older posts I see some are still online here: http://kellyroyphotography.blogspot.com/?m=1
Goodnight and thanks for reading this far!
~kel
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