My mother has received treatment from the doctors at the Mayo Clinic for the past few years because she was finding that she was forgetting things and sought out treatment. She first went to see a neurologist at UF Health who diagnosed her with Alzheimer’s. She didn’t feel like she had a good connection with this diagnosing doctor though, and so she and my father went to Mayo Clinic for a second opinion. When she visited Mayo Clinic, the doctor sat down with her and my father and talked to them in a way that they could understand. They felt cared for and guided, which led to them choosing the specialists at Mayo.
The journey for my mother and father has been difficult in many different ways, some of which I can’t even really name right now because these dynamics go back into my early childhood. I can name some of the complications of how my mother’s journey has unfolded for her and my father. At first my mother experienced forgetting things that she would normally keep track of, but some of what she was dealing with was related to being the primary caregiver for my grandfather. And then my grandfather died a few years later. As she was dealing with her own health challenges, my mother needed to ask my aunt and me to help her with taking care of my grandfather. Caring for grandpa was stressing her out. And then some of the confusion and forgetting in her mind was a result of grief.
Another complicating factor was that my mother began experiencing different kinds of mobility issues. She started to have lack of feeling in her right leg, and she also began to have lack of balance, coordination, and weakness in her leg a she walked. She began falling down and shuffling as she walked. Some of the things that she used to do, like going to arts festivals and Florida Gator games, became impossible for her. We began to need to look for parking close to doors of restaurants. We probably should be parking in parking spaces for people with disabilities. And my mother should probably be using a cane and walker wherever she goes. The doctors mention it to her, and my three brothers, father, and I are starting to talk about this with mom. Her neurologist suspects that these limitations in her mobility actually are not related to Alzheimer’s Dementia. He has discussed the possibility that they are related to Lewy Body Dementia, another neurodegenerative condition related to Parkinson’s Disease.
All of this uncertainty, comorbidity, and ambiguous loss is hard to make space for for my mom, brothers, and father. It is confusing to not have a clear idea of what is threatening the wellbeing of my mother. It is also unclear as to how much time we have with her in her still fairly robust physical and mental condition. I have visited persons in facilities younger than she is who have the conditions being named, and I have seen many of them in much worse conditions. So, I have felt fearful about what my mother’s near future might be like. Since the early days of finding out my mother has the proteins that signal Alzheimer’s Dementia, I have found a way to settle into and accept my feelings of loss. I have made space for sadness and sorrow that arises in me, and I have witnessed this sadness and sorrow change and blend with happier emotions. I even feel a sense of joy in this leg of my journey as her son. So, I have found a way to keep seeing the freshness of my mom’s lived experience. She has immense resources on which to draw, including her warm relationship with all of her children.
What is so hard about this is that my mom is losing things in lots of different ways very quickly. All of the sudden she is unable to walk and be free to move about. All of the sudden, just a few years after my father’s retirement, she is struggling to live in a way that has the freedom to move that she had just a few years ago. And she doesn’t want to use the walker or can even though she knows she probably should. She doesn’t remember to do it on the one hand, and on the other hand a cane or walker symbolizes that her life has changed and very quickly. My role in this as her son and someone who is passionate about mindful dementia care is to be present and see her grief. I ask her questions about how she feels about using her cane, and I listen to her talk about what comes up for her. And from the grief, when we practice mindfulness, we can always appreciate the new life springing up, like a lotus from the mud. Mom does see goodness and richness in her life despite these new challenges she faces.
And so I keep reminding mom to use her cane and walker, and by my presence and my words I keep asking her, “Hey mom, what’s new and fresh?”
