I wish I had known what a marathon this is…battling Alzheimer’s disease is an endurance race, the likes of which I could have never imagined. Although people tried to tell me, I suppose I couldn’t quite appreciate at the time how valuable everyday is. Little things become so important. I remember marveling at how mom was capable of such amazing victories, such brilliant blessings in life. Whether it’s a disease or not, we tend to focus so much on what’s next, we forget to be present for what is now. I wish I had known how much I would come to treasure the sight of my mom heading out the door after she had dressed herself, slip on top of her blouse, two mismatched shoes and her purse over her shoulder.
I remember being home in my mother’s house in South Carolina helping her make the bed and she was watching my every movement closely and trying to mirror what I was doing and she stopped and looked at me and I said, “What’s the matter mom?” She said, “You’re a very nice lady. How do I know you?” And I just smiled and said, “You know me because today I am your daughter, yesterday I was your daughter and I’ll always be your daughter.” And she said, “Oh…”
I will never forget the day of my granny’s funeral. My own mother had just been diagnosed with Alzheimer’s disease and she now had to face losing her mom to the thief of memories. We were worried about how much mom could really decipher about the death and dying process. But the cruel reality was she was very lucid as she said goodbye to her mom. The scene that stands out most in my mind was seeing my granny there in an open casket, finally released from this cruel disease, finally peaceful and there was my mother looking into the eyes of her mother as I stood back and thought about my children watching me. It was an epiphany for me when I realized that the emotion which guided me was stronger than grief. It was the need to create change. I didn’t know how, I didn’t know when, but somehow I knew that I needed to rewrite the story.
I’ve always found my mother’s courage to be amazing. She truly was a steel magnolia. She faced her disease with all the grace and dignity she could muster day by day. And when she put her head on the pillow at night, I can’t imagine how that felt to fast forward into darkness. She showed me what living was all about, showing up doing the best we can.
In the beginning, we focused very much on hope and possibilities with my mother. We focused on what she was capable of and how we can enjoy being together. We laughed a lot and I think that’s the part of my mom that I miss the most. She approached this disease with humor, heart, dedication and determination, but she was not naïve. She had, after all, seen her mother die the same slow death. Mom gathered the family around and told all of us the words which were to become incredibly comforting as this disease progressed. She said, “When I kick and scream and call you names, know that is the disease talking. It is not me. And when I no longer know that you are my daughters, my son and my husband then you have to know that is the time that I no longer want to live with you. Leeza, I know you’re gonna want to try to fix it, but I don’t want to live with you, or your sister or your brother and you’re all going to have to help daddy let me go.” As a family we reflected on that often. It saved us from the internal fighting that often occurs where one sibling thinks they know best, or the siblings are trying to move the other parent in a particular direction. We had our marching orders and as difficult as they were, we carried them out.
As mom’s disease progressed, the caregiving challenge became hardest for my father. There were dignity issues and boundaries that had to be crossed which are uncomfortable for all families who deal with chronic illness or disability. I worried about dad when mom could no longer express her appreciation or her love, but instead lashed out with anger at almost everything. I worried about dad when mom would turn around in the kitchen with a spatula in her hand and start swinging at him. I worried about dad every night when he would go to his room and close the door, knowing we were losing him along with my mother. They were married for 55 years, but Alzheimer’s disease stole 10 of them. It’s because of my family’s experience we created Leeza’s Place and that’s why we offer free support services to focus on the caregivers. This is not a disease that is content to have just the diagnosed individual, it wants the whole family and it can suck you into a deep dark hole unless you take steps to bolster yourself physically, spiritually and emotionally.Last Modified May 28, 2009 @ 12:50 am