One morning in April 2017, I was talking to my mom over the phone while standing outdoors under the sun, a soft breeze stroking my face. Something told me to pay attention to precisely what she was saying and be as fully present as possible. While inching out of her comfort zone, there was a sense of calm urgency and importance to her words. Over the years, I have grown and learned to accept that it wasn't easy for my mom to verbally share her feelings. But on this morning, the clouds cleared the way for her to sail the vast blue sea above with no restraint and bless me with loving words I will always remember. The soft tone of her determined voice and openness startled me and left me nearly speechless. I scooped out the emotional lump in my throat and offered my love and continued support through her decline. After we hung up, an overwhelming feeling came over me that this quite possibly was a farewell. Unplanned. Unexpected. Surreal. It was, in fact, our goodbye even though she is still living. Since then, an unfriendly ghost has been stealing her brain in an unnatural way that now directs our conversations differently.
My mom was diagnosed with Alzheimer's this past month. It is not a surprise. Even though a few years ago her doctor guessed she had some form of dementia, no formal testing was done in part because my mom was in denial and maybe felt a bit ashamed. But as things have progressed, I thought having answers would be beneficial for everyone involved, and I finally pursued a series of appointments and tests with a neurologist and neuropsychologist this past fall. When I received this result from the doctors, I paused and reflected on the last four years which have been pretty intense with helping my mom. I didn't have to do it. I could have walked away. I could have been selfish to make things easier on me and my husband and kids. I could have done things half-heartedly. But naturally, I am a caregiver. It is a piece of my calling; my dharma; my lifework; my vocation. When I know this, I can't ignore it. When I can't ignore it, then I take action whole-heartedly to focus on creating and offering a quality atmosphere for some of the most vulnerable-the young, the sick, the lonely, the dying, the elderly.
Alzheimer's is complicated. Understanding the disease is a never-ending task. Witnessing someone struck with Alzheimer's is one of the most fascinating and challenging classrooms. Keeping someone with Alzheimer's at home whose ultimate wish was to never move to a senior living community or a memory unit until she didn't know her name is a commitment and work of art. Coping with a loved one with Alzheimer's requires a great deal of learning, patience, self-reflection, and humility. Observing individual family situations where Alzheimer's exists should be only that-observing with respect and asking what help and support are needed while leaving zero space for judgment. Caring for someone with Alzheimer's is mentally, emotionally, spiritually, and physically challenging on caregivers and family. Living with someone with Alzheimer's when an angry trait is prevalent, is quite a different battle to conquer. On a side note, I've nicknamed this state, zangry. For me, it sounds a little softer than using the words belligerent or combative. When my mom gets in a testy mood due to Alzheimer's, it lightens my mood when I tell myself she's having a zangry moment and it's not her who is speaking.
There should be no shame in Alzheimer's or any of the various moods and conditions associated with it. As awareness of the disease grows, the more comfortable it will be to talk about it. I sure hope there isn't a stigma attached to Alzheimer's similar to when people felt uncomfortable talking about or saying the word cancer years ago. When my dad was struck with cancer 26 years ago, it seemed taboo to say the word cancer or people would ask, "does your dad have..."- the sound of the letter c barely spoken, the rest of the word left unsaid altogether.
I share this because someone who visited my mom a few months ago called me after her visit to ask me if we were dealing with "The A Disease." I wasn't sure I heard her correctly or thought she had said a word I didn't understand. Did she say "The A Disease" I asked myself? I was puzzled. Then I remembered my mom wasn't comfortable a few years ago saying the word Alzheimer's out loud either. Maybe it's a generational thing. Perhaps it's a societal thing. I don't want to dismiss the idea that for some people, mentioning the word Alzheimer's may seem like they are invading a person's privacy. But Alzheimer's is a real thing that deserves to be honored with full heart and voice to help dislodge it from the boulder of shame. Open conversation leads to better research, the hope for a cure, more effective ways to cope, and an invitation for empathy.
So, goodbye silence. Hello, Alzheimer's. Let me introduce you. As is many times the case, the beginning can be the hardest part of the conversation. But baby steps turn into longer strides that grow into a movement worth taking.