three musketeers

When Beverly, Mom's PT, walks through the door, she asks Mom in a cheerful, bouncy voice--"How are you today?" I am always intrigued by questions such as these, confused at times how they should be answered. What is it the questioner wants to know? The truth or some sugared version of the "truth"? When confronted with inquires such as these, Mom often says intriguing, amazing things--bits of truth that escape her lips, despite the dementia. So, I listen carefully for Mom's answer, not wanting to miss a revelation.

"I'm here," Mom says, with no smile whatsoever. Beverly and I both laugh--we see the bones of fact bared within Mom's brief reply. She is still here and, at this point, this is probably all she expects. Mom's reality talk sinks in, makes me ponder my own expectations, what I think I will encounter when I walk through her door. I can remember from one day to the next how Mom was, what she said, what she did--I keep notes of this, in fact, just to make sure I can remember, Mom, on the other hand, feels no such compulsion to plot her own story, find continuity from one day to the next. It's me, her daughter, who can't help but keep track of the threads that run through Mom's life--her ups and downs playing pick-up with brightly colored cones, the number of minutes she can balance at the side of her bed, the meals she eats or decides not to, the bowl movements she has or doesn't, the temperatures and aches and muscle spasms she takes Tylenol for, the clarity or confusion in her thinking, her speech. All of these things get charted by her caregiver, Lorna, and by me in my note taking. We are all watching, waiting, worrying. And Mom, she is just being. Existing. Her view of the world shifts by necessity from one day to the next, without expectation. When she wakes up, the only think she looks for is Lorna. Beyond this, everything is a mystery or, perhaps more accurately, a clean slate.

Today is not a good day for Mom. The minute I come through the door, she asks me where she is. I say "Seattle, Mom, you know this, right?" Instead of accepting my rescue, she continues to register her disbelief--"Hmm...I really didn't know this." I continue with--"You're at the Mirabella, right?" And she says--"No...no...I don't think so....they sold this." While I'm not sure what "this" is, I continue with the assumption that Mom is talking about the Mirabella and I assure her that the building she is in was just opened in the last year and that no one is selling anything. I wonder, however, at where she's gotten this information from and why it resonates with her.Mom's question confirms for me what I've been wondering all along--how aware is Mom of her surroundings? Several days ago, she turns to me and says--"what is that noise out there....voices" and I think--holy cow, Mom is hallucinating voices now? "What voices?" I ask her. "You know," she says, "that...that...talking." As she says this, Mom points towards the partially-cracked door. "Mom," I answer her, "no one's talking her, it's just Lorna and me in your room." She says--"No...no...hear that." And as Lorna and I listen again, we realize she's talking about the commotion in the hallway, the low clatter of voices and dinner trays and medical appliances on wheels that accompanies a facility such as this--doctors and nurse's aids and activity coordinators and food science managers and therapists all taking stock of their patients and determining their next course of action, their next agenda item. "Mom," I say, "it's just the nurse's aids talking outside in the hall." "Oh," she says. "Oh....I forgot." "Forgot what Mom?" I ask her. " "Thought I was...you know...there." "Where Mom?" "Home," she says after a pause, a word she utters with a bit of exasperation, like how could I be so dense as not to know she's home or thinks she's home. We are silent then, as I take in her answer. Her words confirm for me what I have suspected--that Mom is not exactly aware that she is not "home." Course where "home" is may not be entirely clear. Lately, I've begun to wonder whether anywhere can be home for her, as she continues to miss her old residence in Medina--the one the State purchased from her in a condemnation during this last year. She calls our now-demolished family homestead in Medina "home home," meaning her real home. Her other more recent purchase--the "home" where daughter-in-law and family reside in Clyde Hill--is "Terry's home" or "your home." Not Mom's home.

Despite our rocky start, I'm determined Mom and I will have a good time, as today is the day that thirty to forty second and third graders from Spruce Street School are coming to the Medical Center at the Mirabella to "trick or treat." Mom and I have been planning for this--yesterday I asked her--"What should we be?" And she says--"the three...you know...the three..." "Oh you mean the three musketeers?" I ask her. "Yes...yes" she says, nodding vigorously, or as vigorously as she can considering her limited neck mobility. Then ensues a complicated conversation (full of many irretrievable words and pauses) where Mom tries to communicate what we three should wear--Lorna, Mom and me. I think about red handkerchiefs, you know the ones like what cowboys wore in the movies. Then I think--I don't have any of these--got rid of them when my horse-owning days were over back in the 80s and early 90s. And where would I get something as mundane as red handkerchiefs? Nothing comes to mind. It's only later that night that I think of what to do--I'm so excited I call Mom, though I don't tell her what my brainstorm is, as I want it to be a surprise. Instead, I say over the phone--"I have it figured out Mom...our 'costumes'" "Oh" she says in a vague voice, and I can tell she hasn't remembered our earlier dilemma of how to dress for Halloween. But this doesn't matter--I just explain it to her again and then remind her that I have purchased the treats--Reece's Peanut Butter Cups and Kit-Kats. As I get off the phone, I can hardly wait for tomorrow when I can surprise Mom with my idea.

So, once we've gotten over the issues of where Mom is at the moment I get right to the point. I haul out the candy--two large plastic bags full of chocolate and sugar--the smell is almost nauseating. When I trick or treated as a child I never ate my own candy. I just liked the challenge of collecting it. My brothers got the sugar shock and the cavities, as I readily gave them my caloric hauls. Mom is suitably excited as she fingers the miniature bars as well as the suckers the Mirabella has provided. We place them in a large Tupperware bowl and leave them there for our guests. Next, I take out the plastic UW bookstore bag that stores our 'costumes'. "Close your eyes," I tell Mom. "Here it comes." The closing her eyes part is easy, as it takes work for Mom to open her lids and keep them open these days. When I reach into my bag, Mom's eyes are wide open, waiting. "Ta...Da!" I say like a magician. "Here they are." Mom laughs with glee as I pull out of my bag the orange trimmed hats we bought at the Pike Street Market, as well as a third furry winter turban I rounded up from my dresser drawer for Lorna. "The three musketeers ride again," I giggle with Mom. She gets it--the three hats and the three musketeers. Mom is supremely happy, just for this moment at least.

When the children come to our room, we're ready. We can hear their boisterous voices long before they arrive. It's a sound of bubbling good humor that is not often heard in our corridor. Their teacher supervisors send them to us in groups of two and three, so the tricking and treating goes on for some time. Mom is thrilled! While I do most of the talking, I am looking over to Mom every few minutes, making sure she's engaged, watching. I ask each one of them--"Tell me about your mask," as they each have come with a handmade mask that replicates an animal of their choice. The variety and imagination is amazing--giraffes, tigers, lions, five different renditions of cats, penguins, rattle snakes, crocodiles, panda bears....even a gecko (this last one is my favorite). No two are the same. The kids have covered their masks with construction paper, paint, feathers, pom pom balls of different sizes. We are stunned and can't help ooing and ahing over the masks as each present themselves to us. Mom is fascinated too, and she keeps moving her lips, uttering sounds like--"My...my" or "Oh...oh. "

It takes a good half an hour to greet all our guests, talk with them, offer them their treats. When we are done, Mom and I just sit there, huge smiles in our faces. We are satiated and filled with good humor.

Soon, Lisa, Mom's speech therapist, comes for her visit. Mom is eager to tell Lisa about our masked adventure. Lisa asks Mom lots of questions about the masks Mom saw and the candy the kids choose. Mom works hard to try and tell her our story, how we've spent our last thirty minutes. When she's finished with her answers, Lisa asks her--"Can you list the kinds of costumes people dress up in for Halloween?" Lisa is working on the listing game--having Mom come up with objects that are all part of the same grouping. This is something Mom has done many times before, but just not with Halloween costumes. Mom starts to answer quickly, telling Lisa about "masks" and the various animals the children replicated. Lisa says--"But what about costume in general, Dorin, what kinds of costumes do people wear for Halloween." Mom looks at her and begins again with the "masks" and the animals. It's as if she's telling Lisa for the first time. This happens once more and I realize then that Mom cannot cognitively distinguish between Lisa's questions about Halloween costumes and her recent experiences with the masks. Lisa realizes this too, and soon turns to a different task, describing objects on the table until Lisa can guess what the objects are. This goes poorly also, as Mom is calling the "things" on her table "boys" and "girls" and suggesting that Dixie cups are edible like candy. It's heartbreaking. Really more than I can hear. I busy myself with looking through Mom's cards stored in a leather box, cards collected from the last twenty to thirty years. But even this task can't completely distract me from the confusions at hand. When Lisa leaves, silence is a relief.

This is how Mom's been--moments of clarity and connection and then dry spells of heartbreaking confusion, sometimes all within the same hour. I know this is so and I know to expect this. Only knowing and expecting seems to make no difference for me. It hurts all the same. I know what I need to do--shift my perspective, just allow Mom to be who she is on any given day. I need to walk through her door each day and meander with the current, being grateful for whatever there is left of Mom, being grateful for the gift of my Mom--the fact that she and I have another day to sojourn here together in her room, in the four walls of our making.

Before I leave, I help Mom with dinner--"Red Snapper with Lemon and Yams" which again she is not interested in eating. When we get to the ice cream, she grins though, sporting her cream mustache. All memories of her earlier frustrations and confusions are wiped clean. Just before Lorna reaches to napkin her mustache away, I say--"No....wait please"--and snap a photo. This is what I want to remember about our day--to be here, present...content with the joy given.

My mother is a gift, each day the most precious gift received.

Deeply, a mother's daughter
--this is a lifewithmom--