I have been asked by a new friend in Germany to re-post this so that some of her friends can see what it is that we are facing with a diagnosis of Dementia. She got her diagnosis two weeks before I received mine. She is an extremely nice and polite woman, who always has the most kind words for me. The one thing that really strikes me is the fact that this is not isolated to just men, or just women. It is not just here in the states, it is all over the world. My heart goes out to her, and all that are facing the challenges that this is going to bring to them. It is also going to bring challenges to the families and care givers of these people affected with this unforgiving journey that we are about to embark. I want her to know that despite the geographical differences between us, she is by no means alone. I hope that this will inspire others to take on this challenge with hope, and with the mindset to always make the best out of every single day. Spend extra time with loved ones and friends. Take the time to go to the baseball game, go shopping, take that class you always wanted to take. To always, in the words sang by Tim Mcgraw, “Live like you are dying”.
It all makes more sense now. For the past couple of years, maybe longer, I have known that something was off. I used to be so good at remembering numbers and knew all of my family’s license plate numbers by heart. It was a game I played when we took a ride. I prided myself on being knowledgeable about agricultural equipment and all the parts and part numbers associated with them. I seldom had to look up parts because I already knew them and where they were in the store. My customers knew it too, and a majority of them would wait for me to get freed up so that I could help them because I was so fast and so accurate. I grew to love the compliments and the customers. I started to forget little things at first, like calling a customer back or ordering parts. As time went on, the occasional forgotten task became more frequent and even though I was absolutely certain that I had done something, I hadn’t. A customer would come into the store and ask if their parts were there and I couldn’t even remember waiting on them the day before. My mistakes were becoming very evident to my coworkers and they would tell me that I had in fact taken the call, waited on the customer, or worked with one of the shop mechanics but I would swear that I hadn’t. I attributed this to the fact that I was overwhelmed, stressed and just plain worn out. I never once gave thought to the fact that I was developing Dementia.
After 17 years at my place of employment, I was fired and I felt completely blind-sided. Now that it is almost 2 years later I can understand why they let me go, but at that time I was crushed. I have lived in the community that I worked in for most of my married life, raised three childern and held a Selectmen’s position in the very same town for a number of years. My reputation was on the line and I felt like I was the talk of the town. I hated being in the spotlight, especially like that. The thing that hurt the most was that everyone abandoned me. In the two years since I was fired I have only seen two of my coworkers. I miss them.
For 5 months things looked up, and then I lost another job. That was when my wife took me to the doctors. A week later, I was told that I had dead spots in my brain. I was stunned, but in some ways I was relieved to have an explanation as to why I was becoming so forgetful. I will never forget the day that my doctor gave me the diagnosis of dementia. She cried, and then, so did my wife and I.
As time has gone on I am slowly seeing things that I am doing, or not doing. Little things like not remembering to do the list that my wife left me with, and never finishing anything that I start. We have an island in our house and she tells me of a time that I once walked around it eight times asking the same question on each rotation. I am noticing that crowds scare me to death, I shake when over stimulated, and stutter a lot when I am over tired or overstimulated. I become extremely confused now. People have to continue to remind me of what it is I am doing because I don’t hold onto thoughts for long. I appreciate how patient people are with me, and how they don’t be-little me.
I know that my wife and I will get through this regardless of what it takes to do so. We have had to completely change our retirement plans, since the average life expectancy of someone diagnosed with Dementia is around seven to ten years. We have met with eldercare lawyers, taken my name off the Life Insurance policies, 503B, and my wife’s retirement paperwork, as well as the deed to our house.
The hardest part about the diagnosis is not the medical part, or the financial strain, or the legal issues. The hardest part is what I think about when I wander around our nightlight filled house in the middle of the night. I worry about my family. I have spent an average of three hours every night sitting up in the still of the night thinking about them. They are my life and I feel so bad for putting them through this. I have found out that losing sleep is normal, but three hours seems very long when your sitting up all by yourself. I allow myself to go to places where my mind should not be going as a 48 year old. I’m working on that. I walk around the yard thinking about how the place will look when I am gone. Will my gardens be taken care of and who is going to keep the driveway plowed out? Who is going to tell my kids everyday that he loves them, the way that only a father can? I know that I need to stop letting my thoughts go there. I’m working on that too. I have learned that the further this disease progresses the lesser my worries will be. My biggest hope is that just because it might seem like I am not aware of what is going on around me, I will. Most days I can’t tie my own shoes and I have to ask someone to do it for me. The hardest part of that is that I am aware of it and I feel embarrassed, even though I know it’s not my fault. Yeah, I’m working on that too. I pray that my family will still know how very much I love them and how proud I am of each of them. My wife is the strongest person I know and I am getting through this because of her. She is a school teacher and has taken on this new challenge just as if it were one of her lessons. She has plans drawn up just like her lesson plans in school. She is constantly making pros and cons lists for the tasks that we have ahead of us. She has created a task chart for me at home outlining my day and what she wants me to do for that day. And, that works great assuming that I remember to look at the dry erase board! She has charts for every single one of my doctors, the meds that they have prescribed and dosages, phone numbers, addresses, pagers and every other form of communication known to man. She has left absolutely nothing to chance, and that to me says just how very much I mean to her.
One more thing I want to mention is that I am so thankful for my church family and friends who have come along side of me, and my family, and supported me through prayer, food left at our front door with no name. Wal-Mart gift cards in the mail, again, with no name. Mysterious money in the mail from unknown givers. My in-laws who have been more than I could ever ask for. People who have stopped by just to check in, and have brought me to tears more than once. Not in a bad way, but just the opposite. Cindy’s school and her friends there have been extremely generous to us, because they think the world of her and know that by giving to us they are telling her that they love her and truly want to help. I have a very special friend who has taken it upon herself to give monthly so that we can buy groceries. I can never express to her how much that means to me, and how much we love her. There is goodness in everyone if we just take the time to look for it. Everyone has a story, and right now people are starting to hear mine. I hope and desperately pray that I can someday hear yours, and that I will be of sound mind enough to understand it. I cannot begin to express my most heartfelt gratitude to everyone who has come along side of me and my family as we start this journey into the unknown. I know that my God will never allow me to go through this alone, and I thank him today for bringing people into my paths that truly want to help. Until next time, God Bless everyone of you today, and during this upcoming Christmas season.