(Navigating the Decline of My Mom – Story #1)
It has been several months since I’ve had a good cry about my mom’s health decline from the effects of ALS (Lou Gehrig’s disease) and Pick’s disease (a form of frontal lobe dementia). Every time I think about her situation, I feel tears rise to the surface. I allow myself to cry briefly but then push my emotions back down, just to get through my day. As a result, I feel depressed and my energy feels heavy. From experience I know I need to release my grief to feel lighter and to be more present in my body and in my life.
Over the past few months, it has become more and more challenging for my mom to speak. During my last visit with her at the full-time care facility where she lives, she mumbles her words so much that I have difficulty understanding her.
“Mom, why don’t we use the communication board the ALS specialist gave us to practice with,” I suggest while pulling out the board.
I ask her to point to letters and phrases to spell out a sentence such as a question she might normally ask me about what is going on in my life. As her fingers are permanently bent under, she uses her thumb to point to the words and letters. Quickly she loses interest and motions for me to put the board away.
“Do you want to go for a walk?” I ask hopefully, as I feel uncomfortable with our stunted communication. It’s a gorgeous warm spring-like day, very unusual for January, and I think the fresh air would be good for her. She shakes her head “no”. She wants to play dominoes. Sitting across the table from her as we play, I notice that her eyes look dull. Her usual spark is gone.
After we finish playing, it’s time for her dinner and for me to go home. As part of our routine, I wheel her from her private room to the dining area, a small room with about fifteen to twenty residents, separate from the main assisted living dining area. This is where the Alzheimer’s and dementia folks eat.
“Bye Mama. I love you. See you next weekend,” I say while leaning over, looking her in the eyes and kissing her on both cheeks. Over the past couple of years, as her health has declined, kisses have become very important to her. She kisses me on the lips and then both cheeks.
I leave the room and punch in the three-digit code to exit the secured part of the building. A mix of sadness, guilt and relief washes over me. I hate leaving my precious mom in this depressing place, where death seems to be looming around every corner, and I am constantly reminded of my own mortality. On the other hand, I can’t wait to get out of there.
During my drive home, I contemplate the decline I notice in my mom’s health since our last visit two weeks ago. It is harder to understand her, and her life force energy appears to be dimming. Soon, she will have trouble eating, and breathing. I turn the radio on to distract myself. It is too depressing to think about the trajectory of her illness.
The next morning, I wake up feeling tired and heavy-hearted. I remember a dream in which I am angry about my mom’s situation. I share with Mark over breakfast what is going on with me.
“I feel sad about my mom,” I say, as tears well up in my eyes.
“Is there anything I can do to support you?” He asks.
I start to cry. He gets up from the table, walks over and hugs me. Tears stream down my face and then evaporate quickly as I melt into his arms.
“Thank you honey. I feel better,” I say, but know there is more. I need to have a good sob.
After breakfast, I decide to attend dance church, a free-form dance event where we are encouraged to express our authentic selves. It happens every Sunday morning. It is my spiritual practice as well as my connection to community. Maybe I can move my body which will help me move my emotions.
I arrive at dance church feeling raw and vulnerable. Initially, I don’t want to dance or talk to anyone. After doing a few stretches on the floor in the corner, I curl up in a ball and cry. I release a few sobs. A part of me wants to have a temper tantrum, run around the room and scream. But I don’t want to disturb the other dancers, so I don’t.
Instead, I stand up and have a short dance with a friend. This begins to open me up. Then, another close friend approaches me with a smile on her face and open arms. Standing in the back of the room, we embrace, and I feel my body relax. I start to sob. “I’m so sad about my mom,” I share.
She continues to hold me. Mark joins us, adding his embrace. Surrounded by their love, I relax and let go even more deeply. I bawl uncontrollably for several minutes, while visualizing myself having a temper tantrum. My mom is going to die and there is nothing I can do about it! I can’t believe this is happening! This f**ing sucks!
When my chest stops heaving and my tears stop flowing, I take a few deep breaths, open my eyes and look into theirs. They are both completely present with me despite the loud music and movement of the other dancers. I put my hands over my heart and thank them for their support.
Feeling much lighter, I join the dance. Smiling at the other dancers, I notice that my joy and vitality have returned, and I am reminded once again, the way out of my grief is to go deeper into it.
A week later, I visit my mom again. This time, I feel lighter, more present and better prepared for what she is about to ask me. She communicates by motioning for me to go through the newspaper. I page through it, wondering what article or story might have caught her attention. When I get to the Life Tributes…the obituaries, she makes a noise and points. She points to it and then to me.
Nervous, I ask, “Mom, do you want me to write your obituary?”
She nods her head, “Yes.”
I don’t know what to say and mutter, “I’ll do it, but I don’t want to.” I then lean over and give her a hug, squeezing her tightly, harder than usual.