Bread has been broken, many toasts made, and lots of Mom’s favorite ice cream eaten every dinnertime.
Relatives and old friends have called to pray, sing, share their love, and make amends over the speakerphone on my cell that I hold up to Mom’s ear.
Parkinson’s dementia is generally not a disease where receptive intelligence is lost, at least in Mom’s case, even though her thoughts and speech were less and less clear and connected every month. She feels emotions acutely, and we saw her grimace and a tear well up in her eye when her brother, who’s barely been in touch during her life, told her how much he loves her and how sorry he was that they weren’t able to communicate well.
Each time the shift changes at her residence, the caregivers have been saying goodbye to her, not thinking she’ll see another day. I’ve lost count of the days since she’s had food or water. I wake up every hour on the camping pad at her side, startled alert by the apnea- up to minute-long gaps in breathing, only to see it resume normally after a few moments.
Somehow, she has no expected physical signs of dehydration, yet her bones have begun to protrude, which is not the way I’d like to remember her.
What’s beautiful about this?
That my mother’s made of more spirit than mattter?
My sister and her 13-yr. old son had to return to their home in the South, exhausted from grieving and waiting, and needing to get back to their lives and take care of themselves.
Even the hospice staff are stunned at this point that Mom can still hold on. I know she can hear me because of the way her breathing and facial expressions change when I speak to her. I tell her how strong she is, that I’m in awe of her. I also let her know I’m okay and prepared to let her go when she’s ready.
I try not to let her know that I’m feeling pummelled by this drawn-out process. Every night I sing to her before bed, letting her know I’ll be at her side through the night. Some nights I leave her residence for long stretches of time, in case she prefers to die alone. I know this is not about me, and I know that neither miracles nor torture can last forever, but the hours are slow, and her too many to count deep purple bedsores are threatening to burst open at any moment.
Every twitch or sound she makes elicits a heart jump, adrenalin rush, and then back to her steady breathing, filling up the room like a metronome. Its rhythm is so steady, augmented by morphine, that it can be creepy and surreal through the night. She’s here but not here.