We celebrated a WONDERFUL wedding last weekend. Dave was able to walk his daughter down the aisle, and dance the father-daughter dance - he was in rare form! He did a little solo breakout that was fun to see! There was a glimpse of the man I fell in love with - we went dancing often when we were dating, and danced alot at our wedding! Late 70's and early 80's - disco!
Dave came back to see Kristin briefly before she was ready to walk down the aisle - I haven't been able to find out if it was his idea to see her, or if someone suggested it to him - but it was very sweet when he stepped through the door and saw her. He was quite overcome with emotion, and told her how beautiful she looked. I don't think he's said anything like that to her for years and years. He appropriately walked her down the aisle - I was holding my breath a little - and he stayed at the reception til the end - it was after midnight when we got home. I had a friend on standby to pick him up if he wanted to leave, but I didn't need to call her. He didn't talk very much to anyone, but he seemed fine throughout the evening! It was a good good weekend.
His 90 year old mother, his brother and two other family members came to the wedding. While he stated he was excited they were coming, he didn't show it. It was gone out of his mind unless I brought it up. I was glad they came. His brother hadn't seen him in about ten years, and it was obvious to him that Dave has troubles. His behavior was ok, considering what it could have been. He still went back to the bedroom rather than sit with them while they were over at the house in the evening, which was a little awkward, but it is what it is. He indicated his brother's grandson who was also visiting "is not family." I explained it to the young man, 14 years old, and I think he "got" it. It can be embarrassing...but that's life right now.
A wedding makes me think all over again about the wedding vows my husband and I spoke 37 years ago. While we didn't exactly say "for better or worse, in sickness and in health", that is what we meant. And when we said that, promised that, pledged that with all our hearts, unless or until it happens, we can't know if we'll be able to do it. I am trying. It's been fifteen years now, even though I didn't know until three years ago what was actually going on. It is so so difficult, and so lonely with this disease. I've lost my best friend, the witness to my life who is the only one who shared so many memories with me. He's still here, but he's empty. Most days I feel like superwoman, and I can do anything. But many days I don't want to do it any more. While the annoyances are pretty minor at this point, some days it drives me mad. I went to a movie last night with my niece - I don't know when I last went to a movie! Dave knew we were going, but my phone vibrated with an incoming call three times in twenty minutes starting at 9:30 pm, and each time he left a message. While a part of me was worried about it being an emergency, most of me figured it was about locking the front door, or my car, or something like that. I didn't answer it. He called a fourth time as we were leaving the movie. I answered. He wondered where I was, and would I be home soon, as he wanted to go to bed but felt he couldn't because of the dog....??? I assured him he could go to bed and the dog would be fine, that I was on my way home. Minor thing, right? It's definitely a new thing - the fact that he didn't realize the dog was fine, that there are times I'm out past nine when he's usually asleep, and everything is fine. But minor. Just breathe.
I was able to get us in with Dr. Scharre, a well regarded neurologist at Ohio Statue University. He's considered the "expert" in central Ohio with FTD, and I've heard him speak a couple of times at different events. We only have to wait until October. I'm hoping we'll get another MRI to see if anything looks different. If everything is the same, I'll know I'm in for a really long slow ride, for who knows how long. Do I want to know that? What can I do with that information? Not a lot. I wish I knew someone who has this similar experience. I feel guilt about wishing things would move along, and guilt that we seem to have it so easy compared to so many. Two people I've spoken with recently are experiencing a much fast progression. I frankly don't know if I can do this for fifteen more years. That is depressing! I should be so happy that things are going slow, but it is seriously sad to live with someone who doesn't really talk to you - doesn't wonder how your day was or how you're feeling. UGH! See? Complain, complain, complain! I need to be positive! Life is good! Tomorrow will be better! At least I'm not dealing with incontinence! Yay!
I feel like FTD is a sentence - doesn't matter how you've lived your life, if you're a saint or a terrible person, if you have friends and family - you just get a life sentence - Dave still thinks nothing is wrong with him, so he is really unaffected by this life sentence. Me, on the other hand? I think about it every single day - and the verdict? That will come afterwards? That's a verdict on me - on how I handle this journey - so I'm going to just keep hanging in there. Vent on this blog when I need to. Cry by myself when I need to. Smile on the outside when I need to. Put one foot in front of the other and continue to hope for more good days than bad. Make plans for things in the future so I have something to look forward to. Planning a little trip for me, whether it's to visit family or go see my grandson, while something to look forward to, also starts the guilt trip, the selfish feeling of doing it without Dave. Still have to figure that part out....inclusion. Working on it. Hanging in there.
