Update - DH56 with FTD

I am so incredibly grateful for all the love and compassion and guidance you have all given to me. I'm sure you can all relate when I say that I am losing track of the days. Time is just floating by and I feel like time is like a ticking bomb right now. I know things will not get easier - different in a horrific kind of way - but until I can get these urgent tasks completed, it feels impossible to get to the most important thing - living. This means creating a new life for us to try as hard as possible to enjoy while we can. For us, this will mean a routine, staying active and visiting with loved ones. We will have little to no money to do most of the things on our bucket list and I am slowly coming to accept this.

I am someone who thrives when things are neat and tidy and organized. Yeah. You get it. I've got a million tabs open on my computer, papers scattered all around the house as I take phone calls and move around a million times trying to find privacy so I can focus. I say to myself in my mind that I have got to get organized so I can keep it all together and not lose my sanity, but two seconds later, something else demands my attention. It's like… woah. My head hurts. The laundry is piling up, the kitchen looks like a bomb went off even though I JUST cleaned it, the frig is empty, I can't remember the last time I changed the sheets, the special needs dog needs grooming, the in-laws are texting about Mother's Day, Oh. My. Goodness. Will it just stop for two seconds? Nope. It's 5/4 and I have to pay the bills! And then I start thinking about finances and around and around we go. So much to do and too much stuff in my head, which needs to get organized. I just need him to be somewhere safe and happy so I can get grounded in all of this. And then I worry if that time comes, will I drop from exhaustion and not be able to do what I have to do? I know you've all been there and you understand.

DISABILITY Thank you to everyone who replied to my post and sent me private messages. You are the best tribe ever and I feel like I have found "my people". I can finally get that started without fear of making a terrible mistake. I was so hung up on whether or not I needed to hire another attorney that we cannot afford for fear of losing money that will be essential. I have the appointment with the CELA at the end of the month for all the other essentials. My next decision regarding disability is do I go ahead and do it online or schedule a face to face appointment? Will his diagnosis be enough with just the MRIs and MRA and neuropsych evaluation or will we need that PET scan insurance may not cover? Will we be able to pull off the PET scan before our crappy, impossible insurance (Harvard Pilgrim - Elevate) runs out at the end of the month? The PET scan brings up a lot of fear. I don't want to think about proteins and what this means for my boys. I just can't go there right now 😭. Do they call the workplaces to investigate why DH was let go multiple times? Do I call his former employers and try to explain what was going on in an effort to save his dignity and reputation and also solve the mystery of why he was the way he was? Should I even care? So, so many questions and so many people involved in this dumpster fire.

RECREATION
My husband was a very active man for most of his life. He wants to go play "lunchtime soccer" with the team he played with for over 20 years. He hasn't played with them in four years. Is this safe? Should I tell the team manager? He wants to go on fat tire bike rides with the local meet-up group. Is this safe? Should I tell the organizer? I just don't know what to do. I don't want him to be discriminated against if he can truly enjoy these activities right now. But I also don't want to put him and everyone else in a bad and potentially dangerous position. Honesty and transparency seems best, but feels awful too. He was driving an hour to work just two weeks ago. It's so hard to discern what is the right thing to do. And honestly, I don't know who to pose these questions to. The neurologist was rushed and unhelpful at the last appointment. It was really strange because he was amazing at the first one.

FINANCES This ugly disease has destroyed our finances. I have shared that I have been at home for over 20 years since our first child was born. I have a degree and a resume that feels like a dinosaur. I think getting a job is unlikely at this point. It infuriates me that I have to worry about every cent and asset we have keeping us from getting benefits he has worked a lifetime for. It infuriates me that this disease has made it so it will be painful to live through this journey. He worked SO HARD for everything we have/had. When the boys were little he had four things going at one time (his main job, two side jobs and he coached for a professional sports organization). Having me at home with our children was so important to him. We paid term life insurance for the past 20 years. It was planned out perfectly. It was something we could afford until I went back to work, which was the plan for 2022 (Covid, his behavior, our dog's failing health (bloat, anxiety and Wobbler's Disease) and helping two sick family members made that extremely hard for me to take on and now here we are). The life insurance ran out this year and we could not afford to renew it. It went from $365/quarter to over $4,000!!! We're so screwed it's hard to believe. The 401K was drained to pay off all the "FTD mistakes". What's left in our checking account is all we have to survive on until disability kicks in and most of that will need to go towards paying off the CARE credit card and our high deductible bills that will be streaming in any day now. Honestly, it's just too hard to believe. We have four vehicles. Yes. Four. Another "FTD thing". My vehicle is a 2004. He has a truck he turned into a monster truck, a commuter car from the long-term job he lost in 2020, and the big one… a supercharged Camaro - his dream car we always planned to get him when the time was right (minus the supercharge thing that makes me feel like I'm going to have a heart attack when he starts the car up). The idea of selling them gives me so much stress. And I don't know if this will work against us too. I don't know why I'm sharing this. Maybe in hopes that anyone else that has experienced this financial distress can relate and offer advice or hope. Also because our financial situation is such a reflection of his disease and most people I have confided in don't get it. They don't get the trauma of it all and what it's like to be the spouse who watched it all happen while trying their best to hold on and keep everything together. All of this and I have managed to keep his credit perfect to this day and all for nothing. It's maddening. Okay, that was a lot. But that's where I am.

I'm sorry that was so long. I just needed to vent to people who TRULY understand all of this. As someone on this forum said perfectly, I have been living in the Twilight Zone. For several years now I have woken up each day and thought, "Where am I and what has happened to my life? And who has stolen my husband?" It's just so hard to believe and it's going to take some time to wake up from this nightmare, I think. So much love and gratitude to all of you who are navigating this journey.