It's been a long time, but a busy last five months. We sold our house we'd lived in for 26 years, and purchased a one floor ranch about four miles from our old house. Not sure why I'm saying "we", because it felt very much like a one woman effort! Dave did his best to help, but just doesn't have it in him to participate in packing and unpacking. We moved in the end of March - still have boxes to go through, but we're getting there. It's been nice to have the projects, like painting the kitchen cabinets, figuring out where to hang pictures, best place for furniture. Fun!
I was very concerned with some behaviors I observed during the whole process of moving and settling in since I was spending quite a bit of time with Dave - more than usual on a daily basis. He didn't seem to get that we had to take everything out of the house - we couldn't leave stuff we didn't want to use anymore! He had quite a bit of problem finding words for a couple of days - that was scary. He had a tough time having patience with "finding" things - I couldn't get it all unpacked as quickly as he would have liked, but it is what it is. The word finding has improved, and he has settled back into a routine - things he uses regularly now have a place where he knows where to find them, but there are still things I haven't come across yet - things he NEVER uses - but he doesn't know where they are. We'll get there. I have to say I was pretty anxious for a couple of weeks watching this happen, and wondering if I'd made a terrible decision to move. But one floor has been great. I'm getting quotes now to move the washer and dryer up to the main floor. I hadn't realized how much strength he's lost in his legs until we were carrying things to the car to take things back and forth. He couldn't take a step up or down if he had anything in his hands. He needed to be able to hang on to something. Our first couple of days in the house, he went to grab the towel bar in the bathroom to help pull himself up off the commode and tore it right out the wall. He quickly figured out that was not a good idea! Top on my list when we see our family physician is to ask if there's a way to tell if this is from the disease, or is this something that physical therapy might help? He shuffles, barely picking his feet up off the ground.
No neurologist yet, but not sure we need one until I notice BIG changes. I notice little ones, at least I think I do. I think that is why I haven't written for awhile - not a lot of change. Not that I want things to get worse for him - he is perfectly content and mostly compliant - but it is so so difficult to maintain my focus on learning everything I can and watching for changes when any decline he may have had over the last couple of years has been so slight. I don't know any more what I'm looking for! Part of the reason for this particular quote in the title is that none of us in the elite FTD club know exactly where we are going, and the roads and journeys we all take have similarities, but are so different. It's a little strange to write this, but sometimes I feel guilty that my husband is doing so much better than so many other folks with this disease - I feel I haven't paid my dues! Even though this has been going on now for at least fifteen years - people I've met with diagnoses in the last year have progressed SO fast and surpassed any problems my husband has. It is weird.
Anyway, I think I'm back to feeling like I want to write more regularly - even if it's just to note that things are pretty much the same. I did do a webinar with AFTD regarding four pretty distinct patterns of atrophy in the behavior variant FTD, and the groupings of symptoms with those patterns. I'll post the link next time.
It's already June. CRAZY! Wedding is only about six weeks away. FUN!
