I recently met an Alzheimer’s psychiatrist, Dr. O, who works in a special facility where problem patients from memory facilities and nursing homes get sent. It is Dr. O’s job to get them stabilized and send them back. She is often successful, I think because she seems to be a meticulously observer, and also, as she says, because she stays very studied-up about medications.
It’s the meds that people usually think are the issue and sometimes they are. But Dr. O. says not always. She told me the story of a patient who came in because she turned violent in her facility. She was old and small, but quite capable – like one afternoon during music therapy she leaned over and bit a huge hole in the person sitting next to her right in the middle of You Are My Sunshine.
Back at her facility, this patient had loved to stay in her room arranging and rearranging bits of junk (magazines, scraps of paper, articles of clothing) she collected, like a hoarder. Often she would arrange them into piles that made no sense and were downright disturbing looking, especially to her family. They could not stand to think of their mother alone in her room, day after day, doing this horrible meaningless activity. With the family distraught, the facility seized upon the popular notion that isolation is bad for Alzheimer’s sufferers. So they locked the woman out of her room, which agitated her. Dr. O. sent the woman back to her facility with the Rx that they let her stay in her room and putter as she wished. Peace ensued and continues to this day.
Dr. O. is not one to make sweeping generalizations, but she sees this kind of thing a lot and she thinks there can be great wisdom in letting Alzheimer’s people alone. Of course they cannot be too alone. Like when my friend J almost burned down her house, that’s too alone. But it does make sense that as a person disappears into Alzheimer’s, the activities they wish to pursue are satisfying to them in a way that the healthy mind simply cannot comprehend. And even more importantly, these activities may be healthful to the patient’s peace of (Alzheimer’s) mind.
So why can’t families and friends just let this kind of thing go? I ask this question as a can’t-let-goer myself, I have such sympathy for the family of the pile maker. My friend J sometimes makes a sound that sounds so damned Alzheimerzy. I have heard other patients, much further along, make that sound and when J does it, everything in me wrenches shut. I swear to God, if someone ever tells me to just-let-go, in that situation, I will hit them. Because that sound (or that incomprehensible pile of crap or whatever) is proof positive of the gulf widening between me and J – and I love her so deeply, and I miss her already, and I cling to every amazing thing she has ever said to me – some of it since her diagnosis.
Like, on one of my visits, J started saying we should write a song together and my heart just broke because of all the writers I have ever known personally, she’s my favorite. We had always meant to write something together, but somehow never got around to it. So I’m about to lose it when she suggests we write a song, but I manage to say, all bullshit-Mary-sunshine, “So where do we start?”
And J says, totally without irony, “We start right where we are, here…” She smiles and geatures to the sunny dayroom containing a dozen people in various stages of decline. And then she makes the terrible Alzheimer’s sound, and I lose it – “Jesus, J, we’re too old to write a song, we’re living across the country, we can’t even talk on the phone!” J takes both of my hands, looks at me, her eyes like a really patient preschool teacher addressing a tantrum-ing 3 year old – “It’s just where we start,” Randee,” she says encouragingly.
We never wrote a song, but we did spent the rest of that afternoon talking about limitations. J believes that when time is short things get compressed so that the worth and sweetness of everything is concentrated. When things are unlimited, we tend to squander them, but when they’re limited there’s the possibility of savoring. Ok, Ok, I’m sure J’s right about that. But still, I am not ok with this Alzheimer’s limitation. I hate every indication of how J is becoming lost to me. And this fact that she needs to become lost to me in order to become found to herself – hate it.
I have a girlfriend who says that when people upset her she tries to “detach with love.” This always sounds so mechanical – detach with love – like something on the space station, a little whir, a metallic thunk, and the two entities drift gracefully apart. It’s so much harder with humans. For the family whose mother makes piles, for me hearing J’s Alzheimer’s sound – this work is almost too hard because everything is so mixed up, the love and the dread and the regret for all the hours and years wasted and gone.
But that particular day, I was able to detach enough to not run weeping from the facility when J made the A sound. So we got to spend the afternoon together, walking around the property and talking about limitations, pausing to savor, yes savor, flowers and sprouting things. It was a knockout day, perfect temperature, blue skies, little breezes, a spring day. At one point we walked under a newly leafed-out live oak, and a tiny caterpillar-ish creature dropped down in front of us on a hair-diameter thread of silk. He paused a moment lolling gracefully with the breeze, then something, another breeze, or maybe something he did himself, set him turning. In the space of a second he went from graceful lolling to frantic spinning, as if he were in charge of holding the entire universe together with these earnest, manic revolutions! He was so hilariously serious, and J and I burst out laughing, the sweetest, longest laughter.
Originally posted 2016-07-10 00:12:30.