So, it's been awhile. I cancelled the pity party - made plans for a four day weekend and took a road trip with a great traveling companion up to see my brother in upstate New York and his six lane bowling alley he's renovated and opening up. It was just what I needed - the only kind of decision I had to make was whether to sit on his front porch, or back porch. Nice! There's something about leaving my situation behind (which I know I am very fortunate to still be able to do with not too much planning since my son lives with me), being on the road for eight or nine hours, stopping when I choose to stop, not being at someone's beck and call - what a relief. And with the natural catastrophes happening all around the United States - hurricanes, fires - I was able to get back to realizing I have a lot to be thankful for - simple things like a roof over my head, a job, food to eat, and family. I feel realigned - ready to face this life I'm living.
I had the time to think about what makes me most crazy about have this disease as a member of my family. It's that feeling of having no control over my future. I don't feel I can make long term plans, set goals, have any ambitions for the future. In any normal every day life (whatever normal means anymore), we don't know the future - we can't know the future - but we can assume life will go on as it is, unless we decide to make a change, and we can plan for a year or two or three down the line. Since FTD came to live with us, I have a glimpse of my future, and it's not pretty. So one would think I'd put everything into living for every moment I do have, right? But I feel trapped - don't want to unnecessarily spend money I may need, want to save any paid time off I've earned at work in case things all of sudden pick up speed and I need to be off work to do more personal caregiving. And yet, time's a-wasting! But....I have to be cautious! I have to save more! I need to be able to support myself when Dave's disease beings to progress! Because that WILL happen, right? This can't go on forever, right? When we first received the diagnosis, we were told six years was the average life span after diagnosis. But it doesn't seem like Dave has progressed significantly at all. I have met and talked with others who have had diagnoses in the last year or two, and their husbands have progressed so much faster than Dave. We are stuck in this middle ground where enough has happened to change my husband permanently, and my life permanently - but nothing big has happened with his disease for awhile now. His progression is very atypical - probably started about 18 years ago - so when he was 49 - and while yes, things have progressed, the speed has not been near the norm in any way. So maybe he'll be 90 when he dies! Which means I have 20 plus more years of this! I've tried to look at this all from a number of angles to see how I can plan, what I can plan. I end up more confused. So I'm just going to keep mulling it over and see what comes my way.
We have seen the new neurologist, Dr. Scharre, who is an expert in his field. He has experience with FTD. He is doing his own new assessment of Dave, and after our first visit with him for about an hour and a half, he's not convinced yet that it is FTD. He hadn't seen the MRI films yet, so when we see him again in two weeks for some more testing and evaluation, he may have changed his mind. He did state if it is FTD, that Dave's is very atypical - yup - I knew that! He had some cognitive testing done with Dave in another office while he asked me some questions and took some history. He is doing a number of blood tests to rule out some things. I still feel once he sees the MRI where there is significant atrophy, that he'll confirm the diagnosis. Or - maybe he'll have other ideas. Maybe it's some other form of dementia. This feels like the right thing to do - have this second evaluation - and a confirmation is expected. But who knows?
There are times when I wonder what if my husband was always like this? Maybe he was always not so smart, and often not appropriate. It has been so long, I'm not sure any more. I contacted the county agency he worked at for 18 years before being fired in 2002 to see if I could find out exactly why he was fired, and if performance had been declining for awhile before then. They were very helpful, and since it's a county agency, personnel records are a matter of public record. So I recently received copies of his performance evaluations and disciplinary actions. Glowing reviews the first fifteen years of his job, promotion to a lead position. Then a lapse in judgement; some notations of not following directions; a year or so later, a two week suspension for a BIG lapse in judgement; talking in Spanish to people when he knew they didn't speak Spanish; inability to read cues from others' comments or behavior. Yup - that sounds like the beginning of it all. What was great and hard at the same time was to read his responses to his early evaluations. They were so well written; so well thought out; so obvious that he cared about his work with kids and knew what he was doing. That's the man I married! That's the man I knew for the first twenty years of our marriage! Reading his writings made me miss what might have been for the last fifteen to seventeen years if this disease hadn't paid us a visit. I was reminded of how much we had - how much fun, how much love. It was good. But it was sad.
So I'm in a good place for now. Making efforts to go somewhere - to the river for a walk - on a drive to southern Ohio to see the fall leaves changing color - me getting on the road, Dave getting out of the house. My first effort was a success - a win-win - I got to go some place I wanted to go - Dave went along. His enthusiasm was short lived, but that's ok. We just headed home before I would have wanted to, but we can't always get what we want now, can we? I can hang in there, keep trying something new to see what works for now - as things WILL change. I can have some control over today and tomorrow for now - but not much past that. Still working on finding that balance of living for now and planning for the future, without stressing out over life as it is and life as it may be. That's my challenge for now.
In the mean time, happy fall! My favorite time of year. The holidays will be upon us - I plan to be realistic about expectations, thankful for what I have, and hopeful for the future!
