We were encouraged to bring pictures that reflect Dave's personality, his hobbies, his family etc. The mistake they made was telling me, "You can't bring too many photos!", WOW!! I was super excited about this part, have you seen all the pictures I have?? We had such a hard time picking out just the right pictures, how many is not too many and how many are just enough for them to pick and choose which to include in the video? We did have fun and even though we had tons of printed pics we ended up going to the computer where the rest of the pictures are and ordering what we hoped were the best. It turned out that picking out the pictures was the easy part!
I know that part of the request for us to participate in the video had to do with Gabriella. The idea was to show that Alzheimer's is not just a disease of the elderly but that it reaches out its long slow arm and grabs the young "I have my whole life in front of me" kind of person. The person that still has young kids at home and who have very young grandchildren and young adult children. And you think you have your whole life to enjoy each and everyone of them. This disease doesn't care about any of that, it doesn't care that you have young kids at home who still need your guidance, adult children getting their start on life, nor does it care that you have grandchildren that you want to make memories with so when they grow up they fondly remember that fishing trip, the camping, the bar-b-ques, or the daughters who hope that you will still be "there" to walk them down the aisle and see them take their next step in life and most important that you will REMEMBER!!
There is so much that people need to understand about this disease so yes they will donate the money for research. Dave and I were very disappointed with ourselves after the taping of the video. We wanted to say so much about how we have been affected and how Gabriella (since she is the only child still living at home) felt. I don't know if we were nervous but I felt a little rushed, couldn't get my thoughts together, even though we had all day Monday to think about it, or if it had to do with the fact that I, as usual, got us lost!
So what would I have said? The person taping the "interview" sat off camera asking us questions like how we first met and why pick this person. (strange question i thought but i guess it was to speak about the personality). I only said a small portion of what I would have said, (since I am long winded I kept the answer short, probably too short). I saw Dave as a man of integrity, kind hearted, hard worker, someone who loved his sons, a man that didn't have a bad word for anyone,he accepts people for who they are, a man with a servants heart, and a heart for God! Of course I didn't say any of that except that he had integrity and I knew how much he loved his sons,ugh! why couldn't I say more than that?
Of course the big questions were next...how did you feel the day you received the diagnosis, how has our relationship changed and how has the Alzheimer's Assoc helped us? To go back and think of that day was surreal. How do you put into words all those feelings? With his family history we knew that it was inevitable Dave would some day receive the Alzheimer's diagnosis but we had no clue it would be when we were still so young. It was expected and unexpected all at the same time. All Dave could think about were what his parents were like at their end stage. I spent a lot of time reminding him how much the medical field as changed and that now there is medication to slow the progress, I tried my best to comfort him and didn't take the time to process my feelings. I just knew that this strong, smart, fun man would change. I had a panicky feeling because I didn't really know as much about Alzheimer's as I would like to have thought I did and all I could think about was "how long do we have before his mind is gone?" "how quick is the progress?" and on, and on. Nor did I say that Gabriella's first question was "will he still be around when I get married, will he be able to walk me down the aisle?" nor did I get a chance to tell them what my daughter-in-law said that my step-son said.."I feel like I just got my dad back and now this." How do people who have been mending broken bridges together side by side then move to only mending one side at a time while the other side can only do it part way? How do you put into words all the feelings that you feel, its like when people say, "my whole life flashed before my eyes", not only is it the life you lived already but the life you know you won't get to see or if you do will you remember?
How has our relationship changed? We all know how good it feels to have someone beside you to help carry burdens, and bask in the enjoyment of life. Well for us it is now lopsided. I don't believe that relationships are truly 50/50, there is a shift depending on who is stronger for whatever comes up or where your "talents" lay. I believe our relationship has been that way but now more and more of the responsibilities are on my lap all the time not just when I think that I am more capable. This disease takes away all of that relationship sharing and doesn't care that you may feel incapable. It doesn't care that you move from being partners in life to the nurse, activities director, financial wizard, in other words the caretaker plus on top of that you are still mom (or dad) to the children at home. You take care of schedules, screen phone calls so you tell your spouse who is calling so they can remember their name and who they are and still plan dinner and attend school functions and yet you have children who don't live at home and you can't figure out how to balance everything. I had a friend say to me " I bet your mind is always going." and she is right. It goes alone because even if you share the task with your partner they are incapable of coming up with the words to help make decisions and then they carry the burden of feeling like they are of no use, which is untrue. But this disease could care less it just keeps slowly moving on and on knowing that no one at this time can stop its growth.
There have been times in most people's lives when they are going through some tough times either because of illness, financial burdens, or just life stuff and we are told "there is a light at the end of the tunnel". Well for people with Alzheimer's and their families there isn't really a light at the end of the tunnel (except the light of our Heavenly Father calling). But with the support of the Alzheimer's Assoc we are at least seeing that there are lights you can turn on IN the tunnel. The journey will be lit with areas of peace and joy as you learn new skills and the partner with the disease can see how important they still are and how they can still contribute to their family. We know that we are not alone because we have family, and friends to support us and we have the Alzheimer's Assoc to advocate for people like us.
That is what I would have said yesterday if I had taken a deep breath and just talked.
Monica
Dave- "When we first got married we knew this would be forever. One of the things we dreamed about when the last of our children moved on to a life of their own was that we could do stuff we loved doing on our own. We sat and dreamed of all the places we were going to go and the things we were going to do. We knew we loved all our kids but we were looking forward to our time, this was going to be for us. When this disease hit us it most likely stopped all that for us.
You have heard from Monica how awful this disease is and what it is capable of, at the drs office we found out all this has changed. This disease takes away everybody and everything, leaves no one behind, it is a disease that will kill 100 percent! Everything is changed. How do you tell your kids that this will take away their father when they don't want to know that this is happening. They want to deny it as much I did at the first. We all know that there is a day coming so much sooner than we thought. How do you tell your wife how much you love her, you try to tell her that all her dreams are gone. It will be an empty house instead of being together.
This disease is a killer, it doesn't care who it kills or when it kills. She is a strong woman who can take care of herself, I have seen it in her and still see it, she will be by herself some day. Its not fair, the disease doesn't care. All the people will be gone that it touches. How do I tell my sisters, all our friends, all the people we know. What do we do knowing that my end is coming, I know that sounds gruesome but that is how I feel. How many more years will it give me, will it be 1 year, 2 years, 10 years? I know this and I accept this knowing this is how life is for me now. I have to prepare knowing this, how do you prepare care of the house, cars, the family and prepare Monica for single-hood again? I know this is God's plan for me, I don't always understand but I know its His plan and I know that who is left behind will be okay.
I can't say enough about how strong Monica will be. As my wife she has been there for me since step one, she couldn't be a better wife. She immediately took on the additional role of caretaker. How do I put into words how much it means to me all the things she has done, is doing for me. I love my wife, sometimes I just can't find the words. I pray that when I am gone that she will have a long carefree life. How do you say thank you to your sisters, friends, church, care group, family for all the love, support and care! I do plan on staying a long time and fight this disease the best we can.
I pray that everyone I leave behind knows how much I care and love them. I know that this sounds like I am dying tomorrow but I wanted to say this while the words are there for me to say."
