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Mom longed for the out-of-doors. She had always been a walker, a lover of nature. The constraints and losses of Alzheimer’s didn’t change her longing. If anything, what was most important at the core for her may have been highlighted.
Jim and I learned quickly that we needed to take her out to St. Catherine’s rose garden as often as possible—either with her walker, while she was still able to use it, or in her wheelchair later on.
The rose garden overlooks the St. Johns’ at its widest point. In that childlike way of Alzheimer’s people, she was always delighted by the three mile expanse of the water before her—as if seeing it for the first time.
The beautiful thing about these visits was that we could sit with her at length, watching the water, holding hands or not, not needing to talk. Once she could no longer speak, we still knew each other’s presence—by sight and by touch and by sharing the river.
In July, six months after Mom’s death, I wrote in Bereft [see Note] about the paradoxes of grief.
Rationally [Crippled Wolf] understands what death is, yet that deeper animal part of him continues not to understand.
How can a person simply stop being?
I closed that post with the following:
Crippled Wolf doesn’t know if there is any continuity of the “self” after death. It’s a familiar, traditional belief, yet he is not one of those people who—as the Quakers say—”knows this experimentally” (that is, experientially).
That, perhaps, is part of why he continues to be confounded… She continues in memory, yet he doesn’t know where she is.
Memory is the mystery—and the recurring surprise.
Many things can trigger that memory.
This is one:
Note: Crippled Wolf is a quasi-autobiographical storytelling persona.
Jim and I sat with Mom for the last couple hours of her life last night.
Before sunrise on Wednesday, I had awoken from a powerful dream, in which the vibrant, out-going Mom whom I haven’t seen in several years was holding everyone’s attention at a party with her three brother and other family and friends.
Later that morning, when I visited her at St. Catherine Labouré Manor, I found her in her recliner in the sunny hallway outside her room, her head pillowed against the hand rail since she could no longer sit up straight. As often happened, when she awoke and saw me, she lit up.
I told her briefly about the dream, and she smiled and nodded. We sat for a while. Once I saw that she was drifting off to sleep again, I said, “I love you.” She mouthed the words back to me.
Last night, the nurse phoned us to say that Mom had labored breathing and very low blood oxygen. We sat with her as her breaths became slower and shallower, until she stopped breathing around 10:17 PM.
We are grateful for the time and love she has given so many of us.
1924 – 2011
And so it is.
It’s been a bittersweet year for us here in Jacksonville.
In April, my mother could still walk with a walker, feed herself and converse with relative normality. Due to Alzheimer’s, she has declined in rapid stages since then.
She no longer remembers how to walk or do self-care, and she rarely speaks—perhaps a few words, if she just speaks before trying to think out what she wants to say. She sleeps much of the time.
One rainy afternoon, watching the St. John’s River, she said to my brother and me: “Someday we’ll all remember sitting together on this day.”
My sister and her husband came from Pensacola in November. Mom was speaking much less, yet we had several sweet visits.
My sister told Mom that hearing the hymn “Beautiful Savior” was the first thing she remembers from childhood. She sang all the verses, and Mom watched her intently.
Jim’s sister stayed with us for Thanksgiving. We brought Mom to the house so she could watch Chef Jim in the kitchen. I fed Mom, and, though she wasn’t speaking, she was clearly enjoying the dinner.
Jim’s sister said how much she had wanted to visit. Mom looked her in the eye and said, “Thank you.”
The sweet side of the bittersweet, then, is that Mom still recognizes us. When we speak to her and hold her hand, she gives us very clear eye contact and smiles.
We have never believed that mortality is a punishment—painful as it is. In some ways, the heart of the salvation God brings to us is this news:
“I am taking on your mortality so that you will know it is not a punishment. I love you and will carry the burden along with you.”
And so it is.
For my mother, recovered from hospital yet confused and afraid as Alzheimer’s steals her memory.
For my partner, since she is his mother, too.
For my brother and sister and their families.
For my father, whose last, eldest sibling has died.
For my friend whose mother has just died.
For my friend whose father is failing.
For my friend whose husband has a recurrence of cancer.
For my friend and her husband, both wrestling with chronic health issues.
For so many others.
I have no words.
Being of melancholic temperament, my Quaker practice is occasionally reduced to long periods of inner struggle between faith and circumstance.
These are not periods of doubting God or of doubting that I can rely upon God.
Rather, they are periods during which I have difficulty finding God’s reassuring silence in the midst of my own emotional noise. Or, sometimes, in the midst of a kind of emotional shut-downness, when prolonged distress has dulled itself into exhaustion.
As readers of my other blog, Walhydra’s Porch, will know, for the past two years my sister and brother and I have been watching our mother’s rapid decline into Alzheimer’s.
In March, my evangelical Christian angel of a sister took Mom into her family in Pensacola. Since then, my brother up in Massachusetts has been helping me weave my amateurish way through the labyrinthine process—so familiar to him—of fixing up and selling Mom’s house back in South Carolina.
All through this, my dear spouse Jim—whom Mom calls son—has grieved and held me when I cry at the drawn out loss of my lifelong best friend.
I share this family snapshot to unmask some of the mystery which has confounded me over the past several months. In order to stop myself from minimizing how central this grief is to my life right now.
Because the human habit of survival, day to day, is to minimize, to normalize, to deny how much grief affects us, to convince ourselves that—through faith or whatever—we are coping with it and going on.
Well, we do do that coping. If we have any sort of faith, we acknowledge the hurt, we honor our tears, and then we continue.
But the animal in us, the body, remembers that the loss is still part of the present.
Three weeks ago in waiting worship, I was struggling with a profound sense of both personal and global vulnerability.
Jim was flying to a professional meeting in Utah…so I feared losing him. My mother’s Alzheimer’s and my father’s age and ailments and my own mortality were all very much on my mind. And the news was full of war and genocide and housing foreclosures and market collapse and city budget cuts and library staff resignations.
I longed for the relief of getting into the present in worship…but could not. My need did not feel like vocal ministry, yet finally I had to just speak it out loud.
How vulnerable and mortal we all are. How we tend to live in this fantasy that, if we just discipline ourselves to do the right thing, we will somehow avoid loss and death…but we remain mortal. How almost every hurtful thing we do to ourselves or to each other arises from our efforts to avoid or deny this mortality.
How I needed the prayers of my meeting—for all of us.
No one else spoke during worship, yet at the rise of meeting the stories poured forth. What members or their acquaintances were struggling with. What brought them stillness or hope or, at least, perseverance. And so on.
The paradoxes of human consciousness are so convoluted. There’s a loop which can play itself out between physical and imagined experience.
I notice this: the bodily symptoms of emotion come first—waking, for example, with a dulled anxiety clutching at my sternum.
Being human, I search for a reason. Being a successful human, my mind is able to find or imagine several. These “reasons” aggravate the emotion and its physical symptoms.
It has taken me a lifetime to learn to notice this loop and to interrupt it with deep breathing or meditation or prayer. But I’m not very good at interrupting it. It’s part of my temperament, part of my basic humanness, to apply imagination to symptoms—instead of just listening.
Two weeks ago, back in waiting worship. I seem to have temporarily burned out on worrying about mortality. Now I just want to stop squirming and center down.
So, of course, I squirm for most of the hour. Relax this muscle. Release that hip joint. Drop that shoulder. Stretch out that calf. Now…. Oh, just breathe. Now….
It’s not really different than the week before. Physical squirming rather than mental, yet still the dominant notion is: “If I can just….”
An image comes of kayaking on a turbulent river, overly intent upon keeping my balance. If I don’t manage this, I’ll fall over and drown in the river.
But—the thought comes—God is the river.
Maybe we don’t get hold of self-discipline as a way of receiving grace. Maybe self-discipline is a gift of grace.
Not seeking silence, but surrendering because we are unable to become silent.
On these worst days of anxiety and grief, when I have so much practical business to do, when I have to stop and pray throughout the day just to keep going, sometimes the answer is this: “Be still. You’re just not going to get anything done today.”
This past First Day. Waiting worship once more.
For a month I’ve been reading Larry Ingle’s 1994 biography of George Fox, First Among Friends. Somewhere in the discussion of Fox’s disregard for theology—I can’t find the passage now—I came up with the phrase: “Not belief, but faith.”
Now, sitting and waiting again. Not getting quiet again.
And, halfway through, a dear Friend voices a truth which annoys my ego with its platitudinous character:
I asked for my heart to be open to the world. But for this, my heart must be broken. And when the break is healed, my heart is stronger.
Grr, I think.
Then, in a series of quick flashes, inner Light reveals some missing pieces….
Nine years ago, my heart was wholly committed to counseling and caring for what felt like an extended family of mentally ill men in the South Carolina prison system.
A new, reactionary state government shut down our four-year-old program and abandoned these men to the negligent handling of a for-profit corporation in a rural prison.
I fled my clinical career for the imagined safety of the library world…and still don’t want to be open to the street people I now face daily in this different state and city and profession.
Still not healed…and resenting, because I fear the hurt, the presence of needful people.
As this opening subsides, I glance around the meeting circle and welcome the sense of present-ness.
Ah, we’re all just sitting here together.
Just before rise of meeting, the same Friend speaks again to tell about when Mother Theresa was once asked if she prayed.
“Oh, yes,” she said.
“And what do you ask for?”
“Oh, I don’t ask. I just listen.”
“And what does God say.”
“Oh, God just listens too.”
And so it is.