We went home after our appointment - I was a little dazed and confused. It was so much information to take in - and so different then what I expected to hear. My husband seemed oblivious to the diagnosis - said it sounded complicated - I heard words like "degenerative brain disease", "progression"; "no treatment"; that it wasn't the car accident at all; it probably started back further; probably has been happening for thirteen years; see an attorney about end of life instructions; see a financial planner about probable long term care in the future; everything swirling around in my brain. The MRI pictures were so bizarre - to see his in comparison with a "normal" 53 year old brain, even a normal 86 year old brain - with my husband's in between - there were big empty places! Places that looked like chasms! What???? He wasn't going to improve at all - he wasn't going to stay as he was - he was going to get worse. And I had to think about a whole new future for us.
I immediately got on line and started googling - hoping to find something about this disease - something that sounded like it fit my husband's actions over the years - almost hoping that it just could not be - they'd made a mistake - but I had to go back to work for about an hour, which somehow felt like a better alternative then sitting at home with him, watching him watch a game show. I needed to "tell" someone - the whole idea of it was so foreign to me, I had to say it out loud to someone else to really believe it. There were no tears on my part - it was more just trying to wrap my head around the idea. What did it all mean? How should I feel? How do I tell my kids?
When I got home from work, I first talked with my oldest son - he's 32 and living with us right now. He was a little surprised - we both agreed it was good to know what's going on. There was some relief to know that all the frustrating things over the years, the feelings that he didn't care - none of that was his fault - it was the disease. He has had no sense of anything being wrong. He is content with his life as it is, only because he doesn't realize what he is missing - he'll never realize it. And it seems that is a blessing for my husband - it seems it would be much harder to deal with his tears and distress over what the future might hold for him. He doesn't really seem to get it. There is grief that all I thought we'd do together in the future won't happen. Or at least it won't happen how I've always pictured it. Our "best days" are behind us - far far behind us. It is hard to put aside the hope that things would get better. Interspersed in all that is the niggling idea that maybe they are wrong ..... I guess that is what I hope for.
I did more research that night, and texted my daughter to stop by the next day after work so I could tell her about the results. That conversation was harder - she began to cry, saying she felt so badly for me. I explained to her that my husband hadn't really been a witness to my life for many years. Part of his disease is a sort of apathy toward others. I would be okay. Along with my son, we talked about having a different perspective now, as caregivers. That changes everything. Instead of frustration over his actions or what he says or doesn't say, we will try harder to make moments count, knowing that today is his best day for the rest of his life. We will all be in this together. I emailed my youngest son about the results - he is in the service and only reachable by email.
When I read about symptoms of this disease, it seems to line right up with so much of what I've experienced over the last ten years. I would guess he has the behavior variant type of FTD. But I don't know! I've thought of many questions since we met with Dr. B. Does his MRI look really bad? Does it look like early stages? Moderate stage? Getting toward end stage? Since this affects hearing, is it at all responsible for his hearing loss? Is it what gives him his shuffling walk? Or is that more likely his arthritis? Is the pursed breathing a part of this? He's just started to smack his lips occasionally - is that part of it? I'm starting to wonder if I'm looking for symptoms I've read about, or am I taking symptoms and trying to find them somewhere in all the articles! Most alarming to me is the prognosis of an average 5 - 8 years living with this disease, but can range from 2 - 20 years.....so does that mean he only has 6 or 7 years left? That just doesn't seem possible. I mean - he's not that bad. If I stop and think of how he was 15 years ago and how he is today - just a snapshot in time - there is a huge difference. If you met my husband today, he would say hello in Spanish, ask if you knew Spanish, and probably finish with "Ay Caramba!" or "Hasta la vista, baby!" He'd be holding your hand the whole time. You would think he's a sweetheart, a really nice guy, and you'd probably think there was nothing wrong. It is only through further association you would pick up on what this disease has done to him. Sometimes I would get frustrated with comments like "oh, he's fine" or "you're being too critical." I did not want to sound like a complaining wife - I just knew something wasn't right.
We love this man - we had SO much fun in our life together - and I couldn't have chosen a better father for our children. We all miss who he was, the parts of him that we don't get to see anymore - and we'll be walking with him through what comes next. We'll find the moments that are good somewhere in the unknown that is to come. We will love him no matter what, as without him, none of us would be who we are today.
Enough for now - I'm getting teary eyes. They just seem to bubble up some times.
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