It's been a good couple of weeks. I had ten days off of work - and my son's family came to visit with my wonderful grandson - it was SO much fun. He's ten months old, and such a happy guy. You can't help but smile! And it brought out a side of Dave we haven't seen for a while. He was quite taken with the little guy. He didn't interact a lot with him, but would notice him and called him smiley. It was very sweet.
He also interacted more with my son - Michael noted that his dad seemed much better - he wasn't certain if it was because I was less stressed than a year ago, or that Dave is much recovered at this point from his surgeries early last year. Both are true - I'm less stressed, and Dave is fully recovered from the surgeries. Dave did seem more engaged. We had a few awkward moments when people were visiting to see Michael, Jordyn, and the baby - my niece has three children that were here for a bit - the dog was a little excited and I asked that Dave put the dog outside in the back - Dave suggested in a loud voice that maybe the kids should leave. Awkward. My niece was very gracious and took it well. Even gave him a ride to church a little bit after that!
A few weeks before their visit, I discovered when talking with a financial planner that considering Dave's disability, his life insurance policy may have a waiver of premium in case of disability - I checked, and it did! So I've been trying to gather the paperwork from our neurologist - it's a gray area because there's no date to pinpoint when it all started - not like a car accident or a broken leg - I'm hoping they'll go with what Social Security came up with - April 2013 - which means we'd get about three years of premium back. That would be helpful. The waiver of premium ends this next October, so hopefully this gets wrapped up soon. I hate bugging the neurologist's office - but it's been a couple of weeks and I don't have anything back from them yet. That will be another call to make this week. I need a personal assistant!!!
Last weekend I attended a conference in Philadelphia on Frontotemporal Degeneration put on by the Penn FTD Center, a part of the University of Pennsylvania. I really enjoyed the long drive - had an audio book or two - it was great! There's something about being in a car on a long trip - a feeling of freedom - to do what I want when I want - a nice break. And the conference was very interesting. I didn't get a big chance to talk to other caregivers - but the information was validating. They reviewed the latest in research, and several experts gave overviews of each of the kinds of FTD as well as common symptoms. A caregiver and her son spoke in the afternoon - her husband was diagnosed back in the 90's with Pick's disease - he died within four years. She became a founding member of the Association for Frontotemporal Degeneration. She's served them for many years as a volunteer, and runs support groups in her area. Very impressive and inspiring. Also very sobering. Several other professionals spoke about the caregiver taking care of themselves; tips for tracking behaviors of your loved one; and the importance of taking care of legal aspects related to the future.
I had the chance to speak with someone from the Penn FTD Center whom I'd been communicating with by email about getting Dave involved with their studies. I'm hoping to get him in there for an assessment and testing for the research. They consider themselves the best - and they do ONLY deal with FTD. They don't want reports from other doctors - they prefer to start from scratch and draw their own conclusions. They seemed a little intrigued that Dave is atypical in that his onset would appear to have been at least thirteen or fourteen years ago when he began getting fired from one job after another, he has reportedly significant atrophy, and yet his progression has been very slow; plus he has had many other things going on in the past year with the vision problems, and Raynaud's, and more recently the psoriasis. I'm excited to have his diagnosis confirmed, and also to hear their opinions on his progression compared to the hundreds of folks they have seen. I also want Dave to be a part of their database and studies. Contributing in some way. Hopefully sometime this summer, that will happen. The Penn FTD Center is considered one of three centers of excellence for this disease. So - we're forging ahead.
The journey continues - I feel mine is easy compared to many, at least for now. It does get lonely - and frustrating. Sometimes I think he's beginning to have trouble finding words - but I'm not sure if it's what all of us do sometimes as we get older, or a part of his disease. So I'm starting to write examples down and the date, so I can see if it's once a week, or every other day. I hate being the recorder of behavior. I want things to be how they were. Like this weekend - a holiday weekend - nice weather - in the long past, we would have had something planned to do for fun - whether a short road trip, or a movie, or a project to work on together. But it is not that way. I still want to do things, but can't count on Dave's "help" - it's not fun anymore - just a chore. And I don't want to do something social with him, because it is also not "fun" - boo hoo for me! Pity party time! It takes away the fun of a long weekend. SO - I NEED TO PLAN FOR MYSELF! I need to plan a project at home I can do by myself realistically, and I guess hire out the other things that need to be done. But where is the money coming from for that??? I'm beginning to feel a pinch - and don't want to start pulling from savings other than for things like the furnace we had to replace a month ago - that's always fun - and the painting of all the trim on the house - long needed. Don't know how long this can last - if this continues for many many years. And how guilty I feel for even saying this. But I'm making considerably less money than my last job, and working fewer hours because I need the flexibility with the hours for his doctor's appointments and so he's not at home so long all alone. I don't know what else to do. Maybe get a second job a couple nights a week - a FUN job. I don't know. I am starting to feel the financial impact of this disease - if Dave had been able to stay at his old job with the county, we would have had the last ten to twelve years making more than twice what we are now, saving for retirement, paying off the parent plus loans ahead of time, six years to playing off our original mortgage - but it's been refinanced, and I'm checking in to refinancing again to see if I can get the payment a little lower to give us some breathing room. AAAARRRRGH! Poor me!
We are doing well - but I have my days when I worry about the future. At least we have a future, right? And it WILL BE a good one. Tomorrow is a good day to have a great day! Thank goodness there is tomorrow. It's supposed to be sunny and beautiful. Can't wait!
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