Life can be demoralizing sometimes. When you have been looking forward to something for a long time and it is over in one day, it can leave an empty space inside you. Take Christmas for example. We spend weeks preparing for the holiday. We decorate, we shop, we wrap, we bake and on and on. Then it is over, all those preparations and anticipation, all gone in one day.
It was like that this week. The annual AFTD Education Conference that I have been looking forward to for so long happened this past Friday. We actually started on Thursday night with a casual dinner for those of us with FTD and our caregivers. This night is so much fun. Get a bunch of us together when we don't have to worry about being judged by anyone and we really let our hair down. I started of by falling while trying to get into the door of the pub. That would not have been so bad, but once I got up and tried to navigate the low step again, I fell just like I did the first time! Now, that did become a bit embarrassing as a customer and an employee tried to come to my rescue. We didn't let it stop us. I was at the head of a group of about eight or ten of us. My daughter just grabbed my arm and told me to slow down and focus. We both focused and watched me lift and move my foot and I was in.
It got worse, once I was through the door, I asked, I think three times. how we get to the 2nd floor. Again, I hear, "Mom, we've got it." Duh, stairs or elevator. Go figure! The good part, no one laughed at me. Well, I was laughing at myself and my daughter was trying desperately to hold it in!
This wonderful dinner and chance to visit with so many of our FTD friends started the event off perfectly. The actual conference the next day was extremely well organized and informative. My friend from our online support group gave a wonderful welcoming speech to get things going. There was a lot of good news on things being done to help advance research into FTD and on things to assist those of us with the disease.
My daughter and I were one of three pairs of FTD'ers and their care partner. We rocked it! The session went very smoothly and was extremely well received.
Soon, the conference was over. I had learned a lot and met a lot of new friends. Yes, my daughter and I stayed a couple more days to see the sights and enjoy each other's company. But... the conference was over. This really hit as soon as my flight home was over. Just like my example of Christmas, it was quite a let down. I was back home to the same routine of every day life with FTD. No more being surrounded by people who truly understand what this life is like and by those who know much more about who generously shared their knowledge.
I was back to the people who don't understand or just don't care to understand. A couple days after returning, I went to our local hospital to have an MRI performed. This was for another part of my body, not my brain. I had been "pre-admitted" so all the questions had been asked and answered. Just as I gowned up, a young man steps up to the dressing room and starts asking me all the same questions. Obviously, he has been over the list many, many times. He was asking all the questions rapid-fire. I put my hand up and explained yet again, that I have dementia. I told him he needed to slow down and ask me one question at a time. He then started reading the questions at a very loud volume, but just as quickly. I stopped him again and said "I have dementia, I am not deaf!" He responded in anger and tried to tell me that was his normal way of talking. We eventually got through all the questions and he turned and started talking to one of the other techs... you guessed it, in a voice that was in a very normal tone and volume.
It is getting more and more difficult to put up with people like that. Especially with him being in the medical field, he should be able to understand. When I first asked him to slow down, I was very calm and polite. The second time, not so calm but still polite. If he continued to be the tech to work with me, I can bet that I would not have been so polite anymore. Ah.... life in the real world of living with FTD.
But, there is good news! Next year's conference is a month earlier, in March, in Chicago. I only have eleven months to wait!!! I must take a second here to thank the AFTD for all the work organizing and putting on this conference. I learned a lot and had a really good time!
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