Adrift. That’s the word that floated into my teary vision as I sat in my car outside the facility my mother has resided in for the past seven years. These after-visit pauses have become part of my ritual in the past few months.
There is always someplace else I need to be, fitting in my mother’s care and comfort as I do between the over-arching needs of my autistic daughter and the other pieces of my life’s work. I just can’t seem to rush off the way I used to, though. I need these little islands of time and quiet to process the latest iterations of mum’s decline. The downhill roll has picked up speed, it seems, as she moves ever closer to the time she’ll leave her body.
My mother and I have talked about dying, death, and the afterwards for decades, beginning when I was a teenager. Sometimes in snippets, sometimes in long, deep conversations, we’d discuss some new perspective one of us had gained through a book, a life shift, or our individual growth. We share more than a few overlapping beliefs about the life of the soul. It’s a sturdy connection between us, a deep comfort during this time where so much is tenuous.
Mum’s body is weakening. At 93, cancer and several peripheral conditions seem to be simultaneously consuming her from within. Her cognition is variable, too—sometimes sharp and clear, her signature intelligence and humor intact and vibrant. Other times—more frequently by the week now,—she is confused, delusional. The combined body-mind decline makes it exponentially harder for her to complete simple tasks like getting dressed and staying hydrated. She chafes against what is happening, has told many in her web of family and friends that she’s lived long enough, has no intention of reaching her 94th birthday. At least once a week, we’ll have some iteration of this verbal volley:
Mum: This isn’t the way I planned for things to go.
Me: I know, but we don’t get to choose.
Mum: Yeah, but this is taking too long.
At which point one or both of us will manage a wry sigh.
Mum has been traveling a great deal lately. She’ll relay her trips to me and my siblings when we call or visit.
I’m exhausted. I was in England last night.
Oh? Where in England?
At the palace.
I was up in Maine with so-and-so. I had to sleep on the uncomfortable bed in the cabin. We couldn’t get back here until today. I am sooo tired.
Several times, she’s been upset, almost frantic, wondering where we (her four children) all are and what she is going to cook for our supper. There has also been frequent mention of a baby that she needs to take care of. She isn’t sure whose baby it is, only that the child is in her charge.
My late father has shown up a few times, too. Though they were divorced in 1976, his appearances seem benign, even welcome.
She will often be at least partially aware that she is describing an illusion, but each feels very real to her. I think she is straddling different dimensions, moving almost fluidly between them. I’ve said as much, and if the cloud cover in her brain is minimal that day, she’ll agree, or say maybe, but it’s not fun.
These past ten months or so have been all colors of challenging, fascinating, sad, beautiful, and draining. I’ve been aching to get some of it down on paper. Time, and concern for her privacy, have kept me from trying. A few weeks ago, though, when she was quite lucid, I told her that I want to write about it. I don’t want to be disrespectful, I said. I don’t want to intrude on your inner life or claim it. I just want to write about my experience of it, of moving through this with you. Her answer astonished me. How can it be disrespectful? she said. It’s what is happening.
Recently, she misplaced her lower dentures. Logic led me to look behind her bed, which is where I found them. She was amazed at this, and exclaimed that it must be my fairies that told me where to look. (I do often ask the angels for help when something is missing, and while I didn’t call on them that particular day, she remembered this.)
Mum: What do your fairies say today?
Me: They say ……. they say it is a honor and a privilege to help walk someone home.
And so it is. Only those that predecease their parents avoid this bittersweet reckoning, these fraught goodbyes that will render us orphans. It is gut-wrenching, but if that’s my experience I know my dear mother is living it one hundredfold stronger. I’m grateful to be there to help ease her way. When I’m wrung out and not sure how I can keep rising to the dual caregiving of daughter and mother, the fairies will be there to remind me— it is a honor and a privilege to help walk someone home.