My kids were in a trance staring at the television. I just finished cleaning up after feeding everyone dinner. My mom was staying with us for the day.
“He’s with Nana outside.”
I glanced through the kitchen window and saw them seated at the table. He was talking to her, and she seemed content. An Alzheimer’s playlist streamed through Spotify on his phone. Mom has long lost her ability to speak and communicate verbally, but she was engaged and entertained in his company. I wanted to bottle up that moment. It was the beautiful reminder I needed.
It is not easy to interact with someone in the final phases of this disease. My children struggle to engage with their Nana’s hollow shell, which tends to make me lose my patience. “Just sit beside her! You don’t have to do anything.” I know that her grandkids were her pride and joy. But while my kids withdraw, Brent draws closer. In the last few years, my husband has given me a tremendous gift. He has loved my momma well. She always smiles when she sees him. It is beautiful to watch their relationship unfold. A picture I snapped of him with Mom is his screensaver. “She’s just so sweet, Jaime.” His warm smile offers a glimpse of his heart.
There are times I have questioned why my mom’s illness has gone on for so long. She was diagnosed with early onset Alzheimer’s almost seven years ago. For the last five years, we have been celebrating her “last” birthday, anniversary, mother’s day, Thanksgiving and Christmas. She has been under Hospice care for more than nine months. It has been a slow, painful journey.
I sometimes question what it would have been like to know the truth. What if the doctor prophesied, “Your mom will live for seven years and three of those will be spent in a zombie-like state”? Instead, we were told the end was near. We expected it around every corner. Every text message or call from my dad brought a sinking feeling in my chest. This must be it.
Once Hospice became involved, I knew it would be soon. I was angry and grieved openly. Then months passed and the pain numbed once again. Waiting led to more waiting. Her atrophied, shrunken frame became the norm, no longer taking my breath away each time I saw her.
They say that losing someone drops the veil from your eyes and allows you to see and feel in a new, deeper way. Eventually, as you heal, the veil of protection returns. I feel as though my veil has been flapping in hurricane gust winds for seven years. Mom’s days have become about existing, not living. We float with the emotional tide - back and forth. Dad is dedicating his entire life to caring for her. “She stopped eating,” is quickly followed by, “She had a pretty good day.” I have emailed my supervisor on numerous occasions alerting her of my mom taking a “turn for the worse.” Despite the false alarms, Mom persisted.
I wish that I could take away this dreaded disease. I wish I could bring back my mom, but I must settle to find beauty in the ashes. Each visit and “last” celebration is one more opportunity to heap out love for the woman who brought me into this world. I believe that her kind spirit receives and processes my family's light and warmth.
Through her illness, Mom continues to guide me towards a better self. She has taught me to be more present and aware as a daughter, wife and mother. Mom subtly reminds me to let go and simply be. There is no need to rush away my life or stubbornly cling to a set plan. Her slow fade keeps the veil flapping in the wind, allowing me to glimpse and feel grief and love in an authentic way. My family serves as conduits of her light. From deep within the silence I hear her message to me:
Hey Baby. I'm not quite ready to close the book. Hold my hand, and we will keep walking towards the light.