To those of you who read this blog for the pure entertainment value of reading about my lackluster love live and my mis-steppings along the way, I apologize for the bleakness of this post.
It has been nearly a decade since my grandmother last recognized my face. At first, it was barely detectible. “Emily, I mean Tia” she’d say in a somewhat flustered tone. Then she started misplacing things. Before long she’d go to gatherings and events and pretend to know everybody for fear that she’d forget someone she should know and would be detected. As the years passed, so did her memory, ever so painfully. By the time I started college, my aunt had forced my grandmother to move in with her. Just a few years later our family had to make the difficult decision to move her into a full time care facility for patients suffering from dementia. By that time, she no longer had control of her bodily functions. She did not feed herself, she did not dress herself, and she had become a merely a shadow of the woman we knew as mother, grandmother and teacher.
I will never forget the first time I went to visit her in her new care home. I walked into the room and she looked up at me. You could see a twinkle appear in her eye as if to say “I know you, you belong to me, and I am comfortable around you.” However, when she opened her mouth and began to speak, all I heard was incoherent babbling. At that point in time, she still had good days and bad days. My mom would call me on the good days and tell me about how grandma was telling her stories about the boys (presumably my cousins or her brothers – it was hard to tell). But as the months passed, those good days became fewer and far between and now they do not exist. The last even partially good day I can remember was three Christmases ago. We brought my grandmother over to our house for dinner. There she sat, in her wheelchair wrapped in a warm blanket; out of nowhere she began to clearly hum the tunes of familiar Christmas carols. Her humming was perfectly in tune and she seemed so much at peace. How, I wondered, did she remember those tunes so perfectly when she couldn’t remember her family members sitting right next to her?
Ever since then, every time I go home for a visit, my mom and I go to visit grandma. No more twinkle in her eyes, no more stories about the boys, and no more humming tunes. I fear, my family has lost her for good. The is so little we know or understand about dementia or Alzheimer’s. Many doctors have indicated that her symptoms appear consistent with Alzheimer’s but we will not know until an autopsy is done.
My grandmother was the youngest of nine children. My grandmother was a teacher. Growing up, I remember her vigilantly working crossword puzzles or playing cards. I would ask her why she enjoyed those things so much and she told me a story about a convent of nuns who did things like crossword puzzles to keep their brains active. She was doing the same thing. Before long I understood why she was so interested in that study. It was because she had watched as her father and more than half of her eight elder siblings suffered and eventually passed away with severe dementia. She did everything in her power to prevent what she feared was inevitable. Something that both my aunt and my mother fear will be an inevitable fate for them as well.
Dementia is crushing. There is nothing more sad and lonely than being in a room with someone you love so deeply only to feel as though you are galaxies apart. As far as I know, there is no known cure and treatment is palliative at best. We, like so many other families in the world, go on living, trying our hardest to hear through the babbling and hold on to the happy memories we still have.
This weekend I am waling in the Alzheimer’s walk, a tradition I hope to continue every year. Please keep in your thoughts and prayers, the individuals who suffer from severe dementia and the families who love them. If it is in your heart, donate to, or join in on a memory walk. Information can be found at: http://www.alz.org/memorywalk/overview.asp
Cherish every day that you have words to speak, visions to see, noise to hear and memories to relive.
