Even from my own backyard, the clouds present an ever-changing story.
In the past few months, a lot has changed between me and my mom.
My mom is battling advanced dementia. No, not Alzheimer's; she has a lesser-known memory loss disease called Lewy Body Dementia. The best way I can explain the difference is to say that Alzheimer's is a heavy, wet, wool blanket that smothers the brain's most recent memories and pushes the sufferer's mind deep down into memories of the past. In contrast, LBD is an erratic pendulum that swings unpredictably back and forth between reasonable coherence and utter confusion marked by anxiety, hallucinations, and paranoia.
This past winter, her symptoms worsened with shocking speed. Though she was still living in her home, Mom now required 24-hour care and her dementia-trained caregivers needed to help her maintain her most basic routines, including her daily phone calls to me.
Then, as winter turned to spring, my mom fell and broke her knee cap.
Technically, she split her patella right down the middle, with a three-centimeter gap. Surgery was required to wire the pieces together, then she was suited up in a soft cast and sent off to rehab to heal.
When I caught up with her in mid-April, the surgeon had bad news. The bone fragments were not healing properly, and sure enough, by May, she needed a second surgery to reset the knee cap. That meant a full reboot to the recovery process and a move to a different care facility.
The physical distress of the broken bone took a huge toll on my mom's mental abilities. While I was with her in April, she would scrutinize me, confusion written all over her face, and say, "You're the mother."
"Look at me," I would say. And when she was looking straight into my eyes, I would point at my face and gently remind her, "I'm the baby." Then, shifting my finger toward her, I would add, "You're the mother."
Her eyes would soften. She would smile. And then she would always say, "That's right. You're my daughter. And I'm your mother."
These were sweet and tender moments.
They reveal an infinite variety of white puffs, wisps and streaks,
A week after my visit with Mom, I flew off to India. Thanks to the miracles of Verizon, I set my phone up with an international calling plan that allowed her to call me in India using nothing more than my basic American digits. During my three weeks in Hyderabad, my mom reliably called me three or four times a day; predictably, our conversations ranged back and forth between calm, coherent discussions of my work with the Indian princesses, and paranoid hallucinations.
Half a dozen times, during those middle-of-the-night-in-India calls, my mom would demand angrily, "I looked out my window today and saw you getting out of your car. Why didn't you come to my room? "
"Oh, Mom,that wasn't me. I'm in India, remember?" And I would hold my breath, wondering if she could possibly retain the details of my wild adventure to tutor Indian foster children.
"That's right!" she rationally recalled each time. "How are those girls doing with their reading? Are they enjoying the books you brought them?"
And these were sweet and tender moments too.
Surprising and unpredictable.
Two days before I left India, her phone calls suddenly stopped.
During the next few days, as I flew back to the US, picked up my daughter in Arizona and drove her home to Seattle, then jetted off once again to Vietnam, my mom and I talked only once or twice. I wrote off the irregularities as a short-term blip, and figured that once I settled down again, our phone calls would get back on track.
On my second night in Danang, Mom called me and we talked briefly. I don't recall exact details but I remember she was upset about something, and I did my best to soothe her as I stood on the noisy sidewalk outside Luna Pub, where I had been enjoying a scoop of Bailey's gelato. After she abruptly hung up, I consoled myself, "She'll be alright and I'll talk to her again soon."
But this, too, was a sweet and tender moment, though I did not know it at the time.
But the sky which holds them remains constant and forever blue.
Because that was the last time I talked on the phone with my mom.
She has never called me again.
And though I still ring her several times a week, she no longer picks up.
I don't know why. I can only assume that the disease has crept further and deeper into her mind, corrupting the place that remembers our phone calls, that knows she can call me any time, and that I will always listen to whatever she wants to say.
This silence has left an enormous hole in my life. I've struggled to figure out how to accept this void, to trust that she is alright, to believe that there is nothing I can or should do for her now.
And that is where I stake my claim.
And this the only thought that brings peace to my heart:
My connection to my mother, mysterious and profound, is in transition. She is leaving this world; I daresay that even though her stubborn body ticks on, her soul has turned toward heaven. This distance between us now is painful, yes, but only temporary.
Like shifting clouds in the sky, the circumstances of our relationship are blown about by winds that neither my mother nor I can control. But as sure as the sun will eventually break through the gloom and shine in a clear blue sky, I know without a doubt that we are destined for eternity together.
And I trust not only that everything will be okay someday. I trust that everything is okay right now.
Every day challenges me to hold to this promise. And when I get my head wrapped properly around this truth, and feel in my soul that my mom and I really are okay; well, that is the most sweet and tender moment of all.
Diane thank you so much for sharing your absolutely beautiful explanation of dementia. I am going to print it off and give it to a friend of mine who is going through this with her own mother and mother-in-law. We just talked about it today.
ReplyDeleteI am so happy if my story can help anyone who is struggling with this horrible disease. My mother-in-law suffered from Alzheimer's and passed away in May, so I can really relate to your friend's double whammy. Please tell her that I am praying for her and her moms.
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