I am my mother’s voice. An unfortunate cocktail of prescription medication put her in a near coma several years ago and has gradually led her warm, expressive and oh so loving voice to become robotic and almost imperceptible. I still can hear the old one when I call her cell phone and it goes to voice mail. “Hi, it’s Deanna,” she lilts, “please leave a message.” Now, I more often hear a flat and low, “I…appreciate…all…you…do” sounding like a bad AI bot with the volume set too low. Still trying to express love with the words despite the lifeless delivery.
The first change I saw was the slight vacancy in her eyes, tightness in her smile, and tremor in her right hand. Then she began to struggle to find some words. Then she began to struggle more. Her tremor intensified, getting worse when she tried harder or was stressed. We have always been close, sisters many thought when we both were younger. I have been able to finish her sentences since I was a teenager. I started doing that more to relieve her anxiety, and we would laugh at my accuracy.
I began accompanying her to doctor’s appointments and inferred from what I already knew, or her frown, or the tempo of her tremor or the trail of often nonsensical words that spilled from her lips, “no, yes, yes. I don’t want that” what she really meant. She would beam and smile as I got it right. It was easy then. I often got it right. Because I live in Colorado and she in California, sometimes I was on the phone during these visits, but still could use the cues to speak for her. And she could text to prepare me, sending a list of questions or what she really wanted out of the visit. Weirdly, she thought clearly when she texted, just not when she spoke. I knew I was asking the right questions, giving the right answers.
But that was nine falls ago. It is harder now. Texting has stopped. It is almost impossible to talk on the phone. My communication with her now is through her caregivers or during the time I am there – every month or every week depending on emergencies. I sometimes am not sure what she wants to say – even when I am with her. In the week we spent together after my father’s death last month she was trying urgently to tell me something one morning. I kept repeating what I thought she said but her response was “No.” And the same thing again and again and again. And then she started to giggle, and I did too. And then we were laughing, with tears rolling our cheeks, at the ridiculousness of our situation.
Yesterday I was on speaker phone with the hospice nurse as she told us we should really have 24-hour care, something my mom has long resisted. I tried to explain my mom’s wish for some say in her life and her worry about the cost. The nurse pushed back, mentioning her obligation to keep her safe and a veiled threat to call adult protective services were my mom to fall at night when no one was there. “NO, No, NO,” my mother said. I felt my mama bear hackles rise. “My mother is going to die. As her advocate, it is my responsibility to ensure that she has agency over how she lives the days she has left. Having her ‘safe’ and unhappy is of little use to us. We will continue to revisit but this is her decision.”
At five this morning I got the call from my sister-in-law that she could not see Mom in her bed (we have a movement activated camera to monitor her at night). She headed over and found her on the floor. She was unharmed, but we were all shaken. On speaker phone as my sister-in-law helped her back into bed, I told her that maybe the hospice nurse had been right. Didn’t she think, deep down, that she needed and even wanted someone to be there? Would she agree to that? She did and neither of us mentioned the fine line I was walking between being her voice and inserting my own.
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