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May 27, 2009 As some of you know from my previous articles, my husband has moderate Alzheimer's Disease. I won't go into the symptoms and everything else that happens to a person when they have this terrible condition, but I will tell you the exact moment when I began to feel that I no longer exist as a whole person. Last week was one of my grandchildren's graduation from high school. I have made it a point to attend every graduation possible where my grandchildren are concerned. This has become a goal of sorts. I actually dream, pray and wish for the ability to attend every single graduation of all seven of my grandchildren. I realize that this probably won't be possible with the two youngest who are babies, but I have always thought it attainable for the children who are within a ten year span of my current age. It was raining last Thursday when my granddaughter graduated and the affair was to be held outdoors. This didn't bother me because the weather is warm and I have never been afraid of a little rain. The problem arose when it became obvious that my husband could not tolerate sitting in bleachers among thousands of people and that after our last graduation (two years ago), he couldn't and wouldn't sit still for such a long period of time. He kept asking me when we were going home, how long would it last and complaining about sitting around for hours on end. It became a real problem for me and for my kids who were merely trying to enjoy the moment that their own children began their journey to adulthood. We had intended to go to the ceremony and had a ride there all planned when my son called and in a subtle and kind way offered me an out. He explained that he realized that his Dad would not be comfortable and that if we didn't want to come it would be understood and no feelings would be hurt. After I hung up the phone I thought about what he had said and understood exactly what he was saying. I also knew that it would not be a pleasant experience for any of us and especially for my husband. After fighting the urge to go and let the rest of it be damned, I called him back and declined the invitation that had been originally extended and we stayed home. Throughout the night I thought of my granddaughter walking up to get her diploma and the wonderful moments that I was missing. I also realized that I would not reach my goal of attending all of the ceremonies as I had hoped and prayed for. It was a tough night and I felt the extreme loss of an important part of my life as I once knew it...the ability to celebrate the happy moments with my children. While thinking about the situation I knew that this wouldn't be the first rite of passage or celebration that I would miss and I suddenly felt as if I no longer existed as the person I once was. That person was outgoing, friendly and had the ability to express joy and excitement. That person also looked forward to such occasions and considered them an important part of my life. That person was gone. The extent of my travels these days entail going to doctor's appointment, the grocery store and an occasional visit with friends and children in either their homes or my home. As the grandchildren grow older those occasional visits grow fewer and farther in-between. My grown children have busy lives and plans of their own. They often go to public places that are no longer feasible for my husband to attend due to his condition and that means that I can no longer go either since I am his full-time care-giver. I saw the pictures from the graduation yesterday and as I visualized that everyone in the family was present except for my husband and I, it was like a void had been created and that where I once stood hugging my grandchild was missing from the photos. I was missing.......like I didn't exist in their lives anymore. My husband has no memory that there was a graduation ceremony and had no regrets or sadness at not attending. He was relieved when I told him that we weren't going and I understand that. He is my first concern and that is how it has to be. The sacrifice is that I DO have understanding of what I missed and will continue to miss and that was a painful fact of life. The empty place in those photos was validation that in some way I no longer exist and that the adjustment to becoming a shadow is a difficult transition. To those of you who have family members with Alzheimer's, you will understand what I am saying and to those you who don't, I am writing this so that you will experience the little joys of life that most of us take for granted. Once they are gone they cannot be retrieved and it is important to appreciate them and savor them.
Exist to the fullest while you can.
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