When Grandpa Talked

The other day, Kaleb tapped me on the shoulder. "Mom," he said. "I have been wondering. When Haley was little like me, did Grandpa talk?"

I hugged him when I answered so he wouldn't see the tears in my eyes. "Oh, yes, Grandpa talked. He used to talk so much you couldn't believe it."

He hugged me back and then pushed me away. "Haley is so lucky. All that talking with Grandpa. I wish he could talk to me!" And then he went on his happy little way, leaving me more than a little bit sad.

Because here's the thing: Kaleb never really did get to know my dad, at least not the pre-Alzheimer's dad. The day after Kaleb was born, Dad drove to the hospital on his own, and he got lost. My mom sat with me, waiting, for as long as she could, but she had to go to work. "He probably stopped to read the paper somewhere," she said, and I agreed, neither one of us acknowledging what had really happened. When he finally came into my room, he was matter-of-fact about it. "I couldn't find the damned place," he said. Then he held Kaleb, who didn't have a first name yet but whose middle name was already decided: Don, after my dad.

But here's the other thing that makes me equally as sad: Even if Dad didn't have Alzheimer's, Kaleb might still not have gotten "all that talking with Grandpa." Because, while Dad came to birthday dinners and holiday meals, he wasn't very involved in my kids' lives. He wasn't the sort of Grandpa who'd show up and take a grandkid or two out for a Happy Meal or a trip to the park. He didn't really talk to them on the phone much, or try to get to know them. He was passive in the relationship.

Really, "sad" isn't even the right word: "pissed off" about sums it up. How could he not make an effort? How could he not cherish and develop a relationship with his grandchildren? If you asked Haley, Jacob, or Nathan, I don't think any one of them could tell you something specific they loved or admired about my dad, because they don't have any specific memories with him. They hardly remember what he was like, pre-disease.

Maybe it is wrong to say that I feel anger towards my father. After all, he is ill, and disease should dissolve the past hurt feelings. It should offer at least that much: in the place of memory, absolution. I fragment of poem keeps repeating in my head: "What is elegy but the attempt/To rebreathe life/Into what the gone one once was/Before he grew to enormity." (Mary Jo Bang.) Alzheimer's tries to make him bulge into enormity: larger than life, impervious to anger. Immune to it. Blessed only for the good parts.

How odd that this is a damage the disease inflicts: it not only takes away the ability to tell the person you love you love him (and everything else good you should have said more often), it strips away the chance you had to say how could you? Your anger or disappointment cannot be expressed and so it hangs in your heart, a bitterness, a hook, a biting dark thing you are ashamed of.

Do You Remember? (A Post for Father's Day)

Dear Dad:

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Whenever I drive through Provo Canyon, a vague memory surfaces of you and me, scootching through trees down an angle of dirt towards Deer Creek. You’re holding a fishing pole and a tackle box. There is no context for this memory—I don’t know if we were there with others, or what we did before making our way towards the water. Did we catch any fish? Did we get wet? Did my young impetuousness scare away all the fish and make you crazy?

I can’t remember.

It’s just that image: moving down a hill toward water. The smell of earth: dirt, and growing things; lake, and sun. And emotion: anticipation, and a sort of fearful plunging-ahead (the sunlight, for a moment, nearly absorbed by the density of leaves), and innocent, utter trust that you wouldn’t lose me and that if I fell you would catch me.

I wish I could remember more of that moment. I wish I could call you up and ask you, "Dad, do you remember the time you took me fishing?" and then you’d talk about it for at least an hour. I wish—still—that we could share memories together again.

Like, do you remember the summer trips to Lake Powell? The hours spent skimming along the water, or sitting in the cool and shady overhangs, eating lunch while country music reverbed against the red stone cathedrals and sun shimmered across the water; the rough beauty of sandstone, summer sky, desert water. How can those memories be gone for you?

Or the day you taught me to water ski? It was in the marsh-murky waters of Utah Lake; you showed me how to slide the skis onto my feet, how to hold them up in front of me, where to put the rope, how to lean back into the support of the life jacket. In case it wasn’t enough, you stayed behind me, holding me up while the boat slowly dragged me through the water until I caught the feel of it, caught my balance, caught my breath enough to shout "hit it." What you told me was right: my legs really were strong enough. Remember that you forgot to tell me to let go of the rope when I fell, so I held on, tugged along with my face in the water until my arms couldn’t stand it and my swimsuit top had dragged down to my elbows? Remember that exhilarated and embarrassed laughter? How did I forget to tell you that you were the only person I ever completely trusted to pull me on water skis? Everyone else went either too slow or too fast, but you knew the exact speed to take me.

Remember the late-night shouting match you had with that boyfriend of mine, and how you told him if he respected me he’d make sure I was home on time? I thought I would die of embarrassment and anger, but now that I have a teenaged daughter of my own, I see your point.

Remember Jeramy? Remember? He was the topic of the last real conversation you and I ever had. You asked if I thought I would ever see him again, and I didn’t have an answer, and I was surprised (and thrilled) you hadn’t forgotten him. If I ever do get to see him, I will tell him all about you.

Maybe it’s good that you’ve forgotten the turmoil of my teenage years—the yelling and the rebellion, the moody music and the black clothes. I think you must have been completely bewildered by me. Sometimes I almost wish I could forget my dark years, except for the fact that they forged the person I have become. I wish I could explain what I understand about the darkness now.

And although the hours of sitting on a metal folding chair might not be worth remembering, I wish you didn’t forget all the gymnastics meets. I wish you could remember the version of me who could fly, who was strong and fearless. I wish you could know that while I never told you, your presence at meets always made me feel a bit more courageous—and more admired. I knew that no matter how I performed, whether or not I stuck my layout on the beam or chickened out on my roundoff dismount, or even if my vault was always the simplest one I could get away with, you’d still smile at me with that beaming sort of pride.

There are memories only you could share with me—how, for example, did you feel on the day I was born? The day you married Mom, or adopted my sisters, or Becky was born? How did you feel on the day your dad died, or when your son-in-law was killed? What was your first football game like—were you nervous? What was the last baseball game you played, and what did you love about the sport?

I cannot ask the questions anymore, because you can no longer answer them. You look at me, your pupils sharp dark holes in the universe of your eyes, and then you hang your head and wring your hands. Your body seems to say all that is left in your confusion is a sense of shame. I hold your hand, prying it carefully away from the other one it’s twined with. I pat you and I tell you: it’s OK. You are OK. We all love you. I hold your hand, knowing that you don’t know who I am anymore other than a vague concept of person-who-means-something. I speak words to you and I wish they could land like stepping stones in the dark waters of your wordlessness. I wish I could know that you know: I love you. And I won’t forget. As long as I can remember my experiences with you, I will.

I will remember.


Tonight I have been reading poems and thinking about my dad who didn't, as far as I know, read very much poetry. Still, sometimes a poem reminds me of him by the act of capturing some facet of him, even though the poet (obviously) never knew him. It is one of the magics of poems, how someone can write about death, and then when I read the poem I don't think so much of dying but of how my dad liked going arrowhead hunting in southern Utah. He'd go with one of my sister's husbands, or with his brother, and once he had gathered enough, after many, many trips, he'd assemble all the arrowheads together on a rustic board, with buckskin braid and maybe feathers. When he went on these trips, I always thought it was a little strange, and maybe even questionable. Where'd he find the arrowheads? Was taking them from where ever he found them a sort of grave robbery? Or just something that some people do?

Now that it's too late, though, I wish I would have talked to him about his trips. I wish I knew where he'd go, and how he'd find them. I wish I knew which were his favorites, what were his motivations, how he thought about his finds. Did he think what I do, when I hold one of those chipped, triangular stones, of the person who shaped it, wondering how he lived or what he killed, imagining a sort of connection between my modern-day self and that long-ago person? Or something else? Was the arrowhead hunting about connection, or about discovery, or about the rugged beauty of a perfectly-shaped spear point? Or simply the wild peacefulness of being in the desert, the stone a way of carrying home sky, heat, dry bushes, sere stone?

He is not dead, but he (the dad I knew) is gone. I still love the silent, confused man who needs help sliding his feet into his shoes, who seemed baffled by the bright sun at our last visit. We sat together on a park bench, and I told him how my kids are, how my last run went, what book I was reading. He didn't answer, of course, and I wonder: what does it feel like to be him? Where did the dad I knew go to? Is he lost somewhere in the dark, a chipped stone I could find if I knew the path through his personal landscape? Or perhaps he is a million little stones, scattered in earth, and I will never, no matter how much I search, put all his pieces back together. The arrowhead trips are just one stone, just one facet of what is lost and I am again left with the same heartache, the same regret of not asking, of not telling, of thinking I had as much time as I needed, of not knowing how much I didn't know. Not guessing that, one day soon, he would be curled in the dark of his mind, needless artifacts scattered around him; that I would need to become an archaeologist, sifting through time's refuse, to know anything much at all about him.

"Every Dying Man"

is a child:
in trenches, in bed, on a throne, at a loom,
we are tiny and helpless
when black velvet bows our eyes
and the letters slide from the pages.
Earth lets nobody loose: it all
has to be given back — breath, eyes, memory.
We are children when the earth
turns with us through the night toward morning
where there are no voices, no ears, no light, no door,
only darkness and movement
in the soil and its thousands
of mouths, chins, jaws, and limbs
dividing everything so that
no names and no thoughts remain
in the one who is silent lying in the dark
on his right side, head upon knees.
Beside him, his spear, his knife
and his bracelet, and a broken pot.

~Jaan Kaplinski

Sparks and Connections

  Even before I got pregnant with Kaleb, I hoped so hard for a girl. When I had my ultrasound and learned he was a boy, I had a whole series of conflicting emotions: I was excited to meet him, to learn who he was and to see what kind of person he'd become, but I also grieved---hard, ugly grieving---for the daughter I hoped to have. During those difficult post-ultrasound weeks, I had a dream I am just now starting to understand. In it, the baby I was carrying was about four months old. He was at that stage when they're just learning how to sit up by themselves, and he and I were sitting on the floor in his bedroom, near an open window. I propped him up into his awkward sitting pose, then carefully let go of his ribcage, and he managed to balance for a few seconds. As he toppled sideways onto a pillow, he looked up at me with a gleeful smile, full of pride and that sheer joy that babies have just from being alive---and he looked just like my dad. Using dream language I said out loud something I still struggle to put into words, something about how I'd had so much sadness over not having a girl, but this was the reason for it. It connected back to Dad. In the dream, I understood exactly how it connected, knew exactly why I wouldn't ever have the second daughter I'd hoped for. When I woke up, I no longer had the understanding, but I did have the memory of understanding, and that memory brought me some peace.
Kaleb was born on my dad's birthday, and his middle name, Don, is my dad's first name. He is my dad's seventh grandson, and maybe it seems odd that none of the previous six boys have their grandpa's name, but I know why it turned out that way. Kaleb was supposed to share the name. And it's not just the birthdate and the name; Kaleb and Dad have a special connection. When Kaleb was born, we all suspected Dad's Alzheimer's, but he hadn't been diagnosed yet. He still talked some, still could find his way to places, still could drive by himself. He came to see us in the hospital the day after Kaleb's birth. His hair was wild and uncombed, and there was a smear of something on his shirt. I wasn't truly comfortable letting him hold the baby without hovering near. But he took him into his arms,
Grandpa don and he smiled. He looked down on his last grandson and checked to see if his baby ears were floppy or not (as he has done with all of his grandbabies). "What's his name?" he asked, the question of the day. (It took us nearly a week to finally pick Kaleb's name.) I told him the first names we were considering: Max, Sam, Alexander. I told him that my first (and most beloved and I-still-try-to-not-be-bitter-that-I-didn't-get-my-way) choice was Baylor but that Kendell absolutely hated it. "But we're certain what his middle name will be," I told him. "His middle name is Don." And that smile he had on his face---the slightly confused one trying to hide his unsurities---changed. It became a smile that didn't hesitate, a smile that beamed, a proud and joyful smile. The same smile from the baby in my dream. The smile was a spark, and then a bridge of invisible light, connecting faltering old age to new life's unlimited potential.
Kaleb doesn't look anything like my dad. He is, in all honesty, Kendell's Mini-me, except for the brown eyes. He's got Kendell's temprement, too, which is nothing like my dad's. But they still have that connection. My dad wasn't ever a real hands-on kind of grandpa. He saw the kids when my mom did, on birthdays and holidays and family get-togethers. He didn't seek out his grandchildren, didn't do a lot to develop their relationship. I don't think my Bigs have many one-on-one memories with my dad. Kaleb won't, either. But the connection seems to be more about recognition than experience. Every time they are together, I can feel that spark flare up again. Kaleb loves to see his grandpa. The promise of a visit is enough to get him excited about getting dressed and leaving the house, which is saying a lot because he's highly attached to staying at home in his pajamas.
Yesterday, Becky and I went together to visit our dad. She had her two boys with her, and I brought Kaleb. My Bigs are stressed by the idea of going to see Grandpa at the rest home. They each, in their own way, communicate to me their sadness at how he has changed. But not Kaleb. For Kaleb, going to see Grandpa is never about being sad. He loves it. It hit me hard, yesterday, as Kaleb showed Grandpa Don his lion. Dad was lying in the awkward-fetus pose he so often takes up now, unable to quite get his body into a comfortable position, his face bewildered and lost. Kaleb stood by his bed. "Look, Grandpa. Look at my lion!" he said. "He roars." Dad's hand fumbled at the lion, unsure of its purpose. "You push the button!" Kaleb continued, taking up Grandpa's finger, pushing the button together. Kaleb laughed; Dad almost smiled. Sparks, not just between them but in my own mind, taking me back to that dream. A little piece of the forgotten understanding fell into place: I had Kaleb because Dad needed him. He needed Kaleb because they have always---not just during the almost-four years my youngest has been on this earth---had their connection, and he needed it in his life right now. He needed this little person who would love him because he knows him in a way I have forgotten knowing him, who loves him for who he is. Who doesn't ever associate sadness with Grandpa Don. Just happiness. He didn't know my dad before he had his disease, he doesn't remember who he used to be in this life. He just knows who he is now, and that is enough.
When we left the rest home yesterday, Dad was again curled up in his awkward position on his bed. "I love you, Grandpa!" Kaleb said before tugging on my hand to remind me he was ready to go. I kissed Dad on his cheek and then caught his eye. "I love you, Dad," I said, not expecting a response, but still waiting for one. He kept looking at me, looked right back at me. Seconds passed, maybe twenty, maybe half of a minute, and he kept looking at me. "I love you, too" he finally managed, in his creaky voice that is both old man and child. And then he looked away. I tried not to cry, because Becky wasn't crying and because we had a roomful of little boys with us. But I couldn't help it. I felt unbearably grateful that he can still tell me he loves me, that he managed to look back at me for so long. I felt that half-anger, felt the peculiar grief of here-but-not-here, felt the burden of all I can no longer say to him. Felt the untenable sadness that sadness has become what our relationship is about. I couldn't keep my tears away.
"You sad, Momma?" Kaleb asked as we walked down the hall. "Yeah, I'm sad," I told him, squeezing my hand. "Why?" he asked, and in his tone of voice I could hear him also say: what is there to be sad about? We just got to see our cousins, and some unknown lady gave us all popcorn, and we all did puzzles together. We got to see Grandpa. Where's the sad in all of that? So I squeezed his hand back. "I'm just silly, I guess," I told him. And a tiny bit of the ache I still carry, the one that goes with losing my other daughter somewhere along the way, lost its edge. Only Kaleb could remind me that there is joy, too, and that the joy is what really matters in the end.

Book Note: Measures of the Heart

You know how, in the Harry Potter series, Hermoine is the girl who always turns to books for answers? That's me, too. When new things come up in my life, for good or bad, I tend to read as much as I can about them, and Dad's Alzheimer's is no exception. Reading about other people's experiences with the disease helps me make sense of my own, so when our library got a copy of Mary Ellen Geist's Measures of the Heart (a book Becky and I had already talked about), I was the first to check it out. The book tells of Geist's decision to give up her job as a radio news anchor and return home to Michigan so she can help her mother take care of her dad, Woody, who has Alzheimer's. I wanted to read it desperately, not only because books are always where I turn, but words are, too. I wanted to see the Alzheimer's experience through someone's writerly eye so that I might better understand what my mom is experiencing as my dad's caregiver.
Despite the fact that I took the book home the very day it could be checked out, it took me forever to read it. Not because of any problems with the writing. It is a well-written book, absorbing and interesting. It tells the science behind the disease as well as the personal cost of caring for someone with Alzheimer's. Geist's training in radio and television news is obvious; the book reads like an episode of 20/20, moving easily between the author's personal story, medical research, social implications, and other people's experiences (other caregivers, doctors, social workers, writers). She negotiates a wide range of ideas, from helping her father shower to helping her mother pick out a care center for him. You learn exactly what is entailed in being the caregiver. "The benefits," she explains, "are that your heart expands. You find out who you are when you stop moving so fast. You retrace some of your life and try to get it right this time. You go through old photos with your mother and learn more about your family and where you came from. . . . You realize what you're made of. You provide comfort for both your parents in a way you never could before." Of course, she also discusses the troubling part of caregiving. It is an exhausting, never-ending task. I had imagined it as taking care of a child, and she describes it that way, too. Only it is, in a way, the opposite of being a parent, because rather than looking forward to new milestones being achieved, you are always looking backward: yesterday, he had this skill, and today it is gone. Geist's use of language, her way of thinking, is similar to my own, that way of looking at something that I call "writerly," fed by wanting to use words to understand something, to use your own history of reading to make sense of the world. I get that. I needed it, in fact; looking from the writerly stance at Alzheimer's makes it more bearable. It is a filter that pulls out some of what is painful.
There were plenty of times when I shook my head, agree with Geist. "Sometimes, your wonderful idea of how to help," I would have underlined if it were my own book, "doesn't work. In fact, sometimes you have to admit that the idea is more for you, to help you pretend he's the person he was before the disease took hold." When I read this, I immediately flashed back to my first reaction after hearing Dad's diagnosis: I'm going to get him to tell me everything right now. I bought him a notebook and I asked him to write something in it every day. My faith in words was this: he'll still be able to write something. He'll still have something to tell me. If he has a pen and a notebook, he'll finally tell me the thing I need to know most from him. But already, he couldn't do it. I asked him to write about his memories of his dad, and told him to type it instead. Eager to please, he tried. The result was a hodgepodge of words, a few lucid sentences, but nothing that gave me what I needed. I put myself in his shoes and imagined that, if I had Alzheimer's (far, far from the last time I have worried at just that), I would still want words. I would try to use words for as long as I could to make as much sense of it as possible. I put that need inside of him, thinking it was helping him. But I realized later: it wasn't for him. It was for me. It was my way of making myself feel like he was still there.
That's just one connection I made in this book, one shaking-my-head-in agreement moment. It was full of those connections, but it still took me months to finish. Why? Quite honestly, the marked difference in Geist's family's approach to taking care of their father. They are able to focus on what is left of Woody; they are able to be sustained by the "sort of gems" that come in the experience. In the few times I've helped with my dad, I have experienced those gems, too; they are moments of brightness, of surprise, even of laughter. Moments that you could never have had any way other than by being a caregiver to a person with Alzheimer's. For me, the gems haven't been enough. For me, there is a sort of almost-anger that builds in me whenever I am with Dad. A desperation---a surreal, complex knowledge. There he stands in front of you, looking almost like himself (Geist describes the Alzheimer's face as leonine, a word I have used in my journal, too); he's there, a physical presence. But he is not there; he's not there, a personal absence. Some other man has taken up his form, has taken away everything he used to be, and it rises up in me, the almost-anger. Go away, I want to tell the person Dad has become, let the real Dad come back.
The Geists don't seem to have any of that go away emotion. Instead, their experience seems to be based on there you are, a realization that, while it comes in smaller and smaller doses, is still enough to sustain them. I want my experience to be like that---I don't want to feel that pushing away. I want the gems to be enough for me. I even felt some envy of Geist, that her life was such that she could give up everything to take care of her dad. Maybe if I could have been more active in his care, I would have had enough of the gems to sustain me. Maybe it is only by immersion that you're able to find what you need.
I'm glad I pushed through and continued reading, though; I'm glad I finished. Near the end of the book, Geist quotes a psychologist, Carolyn McIntyre, who continues to work with families immersed in the Alzheimer's experience. Grieving for someone with Alzheimer's is a unique sort of grief; "you have to grieve the person you once knew. . . you're saying good-bye and then the person doesn't leave." That's exactly it; every time I see Dad, I say good-bye again while I also try to say hello to the other person he's become. It is complex and surreal. It doesn't make sense. McINtyre's small statement opened up a door for me and for an instant I felt like my grief was OK, simply because it is mine. That maybe I don't have to feel guilty for feeling angry, because it's not really Dad I'm angry at---it's the at the disease itself. So, even though I left the book feeling more sadness over my family's response to Dad's Alzheimer's, I also got a little bit of relief from it, too. It gave me a label to put on one part of the grief: I am saddened by the fact that I couldn't help more than I have. My life right now wouldn't allow it, and that truth means I lost out on the gems I could have had. It left me feeling like my grief is something I can own, something I can name and describe, feeling like it is normal to have the feelings I do. It is a measure of my own heart.

A Very Long Post with an Eventual Point about Scrapbooking

Here's the thing about being busy: I've got plenty to blog about, but no time to write. Like: teaching again, today, just for the afternoon; General Conference and the Saturday Miracle I Didn't Know I Needed (that is the official title, by the way); book exchange book reviews, along with about ten other book notes that are piling up in my brain; a Halloween stupor of thought; my attempts at being crafty for church; eye surgery. Oh, and, get this: over the past 24 hours or so, Kaleb has eaten three apple slices. Three. In his life, when any part of an apple making its way into his belly is unheard of, three slices is another miracle.

But what really keeps coming to my mind is the revelation I had on Sunday. My mom had dinner at her house, and honestly: I was a little bit anxious about going. The last time we had a big family dinner was Easter, which was sort of disastrous in my eyes, one of the first times in my life I've felt truly uncomfortable in the presence of most of my family. I didn't want to feel that way again, but it went smoothly, an afternoon that found me laughing a bit, and wishing I'd worn a sweater, and enjoying cheese potatoes with gusto.

My mom is just barely beginning the process of cleaning out her house; now that Dad is in his rest home, she has finally decided to sell and move closer to the rest of us. Since Mom is—well, let's put it frankly, a pack rat—the next few months will be interesting. She started the cleaning-out process in the closet of the bedroom that Becky and I used to share when we were really little, and then was just hers; later, when Dad’s snoring got to be too much for Mom to deal with, it became his bedroom. The closet is full of her overflow of clothes, as well as stacks and stacks and stacks of books. She'd pulled most of Dad's books out of the closet and spread them out on the bed, a display that felt like an odd sort of Christmas morning. I suspected there'd be a lot of Stephen King, and I was right; there were also some surprising things, like books by Ted Kooser and Edward Abbey. Sadly, his copy of Desert Solitaire was missing its first five pages or so, or I would have kept it. I did grab a few books, including my old copy of Bevington’s Collected Shakespeare.

That pile of books gave me pause; it is a sort of catalogue of Dad's mind, the stories that entertained, the ideas that resonated. I flipped through a few of them, wishing he were a carnal lover of books like I am---wish he had written something in them. His book choices would say something to someone who didn't know him, but for me it was repetition; I wanted to learn something about him that I didn’t know before. Can our possessions do that, can they tell someone something we forgot to tell them ourselves? I'm not sure, but staring at the accumulated store of my father's reading material made me think about my own stuff, my own mortality. When I am gone, will anyone care that I did write stuff in my books? Will they know my code: a bent-down corner means I loved something on that page but didn't have a pen to underline it when I was reading. My thoughts pushed out: will my other possessions matter to anyone, once I am gone? Will anyone want to keep, say, a quilt I made, or my recipe book? And what about my journals and scrapbooks?

I turned my back to the bed and started taking from the shelves the stuff that Mom hadn't, mostly a rag-tag collection of old books from our childhood. Two out of the seven Chronicles of Narnia had been buried in that closet; seeing the covers was like standing in the room with my elementary-school-aged self. Half of On the Banks of Plum Creek, half of Mandy, half of Ballet Shoes with my name, written in clumsy cursive, in the back. Where did the other halves go? Just one of my used-to-be-complete (and very much loved) set of Anne of Green Gables; some picture books I remember vividly. I also found my favorite childhood companions, Bubba and Sissy the rag dolls; Sissy was missing her pinafore and Bubba was completely naked, but I am happy to have them back. Oh, and the flapper costume I wore for a dance recital sometime in the early 80's.

The last thing I took from that bedroom was a stack of old magnetic photo albums that had belonged to my Grandma Elsie, my dad’s mom. Once I got home that night, I looked through them. And that was when I finally had that revelation. As I flipped through the photos she thought important enough to use a frame or two of film on from 1986-1989, I thought about the slight relationship I had with her. She wasn’t very involved in my life. I don’t know that anyone could tell me why, and I suppose it was a mix of stories I don’t know. I didn’t question this, as a kid; she was just Grandma Elsie, with her walls full of every cat calendar she’d ever received (each turned to its correct month), who we saw at Christmas and on birthdays and a few other occasions. I didn’t wonder why I felt much less important than the older cousins; I just knew I was and that was just how it was.

So I’ve never really thought about her impact on my life. But flipping through her photos, I realized that maybe I am more like her than I know. She took pictures and wrote about them. Granted—not enough words, in any way. I'm left wondering, for example, how she broke her kneecap during her trip to Canada, or how she felt about Bryce Canyon. But still, putting her pictures with words was important to her. And, get this: she didn’t just take pictures of her grand kids and her trips with friends. She took photos of snowy landscapes, of flowers, of her house. She had pictures of the mountains in her albums, too.

This felt so much like me. She stood at the same spot at Bryce that I did; she took a picture. I flipped through her photographs in my dark and quiet house, thinking about Dad’s books, about bits of my childhood stacked up in a messy closet, about mortality, about the world going past me. About whoever will come after me who might want to know me, too. In the exhumations of the closet, I didn’t learn a whole lot about Dad that I didn’t already know; I reacquainted myself with things I’d forgotten. I did learn something about my grandma, though, and it gave me an answer to one my persistent questions: is time spent scrapbooking wasted time? I don’t think so. Maybe time spent agonizing over little scrapbook details is a little bit wasted (the lack of accents or embellishments in Elsie’s photo albums wasn’t even noticed), but the writing + words thing? Never.


He still answers the phone with the word "hello." But the voice he uses is no longer his; it is the voice, simultaneously, of an old man and a three-year-old. The "hello" is a question: what is it I am supposed to do with this ringing thing? I know there is something? Hello?

I try to say something he will understand. "Hi, Dad" or "It’s Amy," my voice reassuring and calm, trying to sooth him. Sometimes I start the awkward, one-sided conversation with "it’s OK, it’s OK." As if anything I could say would help him understand. What does the concept "dad" mean to him at this point, anyway? Or "Amy"? I try to carry on talking to him over the phone, my voice getting louder and louder, my subconscious thinking it must be volume that’s the problem, until he answers: "OK."

I ask him to put Mom on the phone. (Who is she to him now, my mother who helps him eat and tries to shave him, who has to teach him every time he showers how to wash himself? Who bugs him about leaving used Kleenex in piles on the floor? "Wife," too, must be an unfathomable concept now.) Sometimes he says "OK" and hangs up the phone; others I hear him wandering through the house, calling for her. When I do manage to talk to her, that conversation is stilted too, a different sort of awkward. I can no longer pay the emotional currency of "what are your plans?" and "how can I help?" now that all those conversations have ended in procrastination. I am emotionally spent on the topic; all my words of advice are gone. Instead, I keep the conversation neutral, asking about Dad’s health and about hers, telling her about a new quilting project, talking about work. Although neither one of us has Alzheimer’s, it still diseases us.

"He told me today that he doesn’t want to get the paper anymore, because it is too hard to read," she says. This makes me cringe—Dad reading the newspaper is a quintessential bit of home for me. Things slough away every day, but the concept of him not being able to read hurts me most. And there is the worry, too. What if he falls down the stairs while Mom is at work, breaks something, and cannot get help until she gets home? What if he lights something on fire? What if he wanders away and we can’t find him? Burn, pain, cold, lost: more concepts his mind can’t understand anymore.

I don’t know what the spark was. The newspaper? His recent fall down a shopping-mall escalator? The way time seems to not mean anything to him, so that thirty minutes after he gets dressed, he wants to take his clothes off and go to bed? Something pushed her past her procrastination. Today, she didn’t use the phone. Instead, she stopped by my house, Dad in tow, to tell me that tomorrow she is putting him in a rest home.

It’s a sudden move, an abrupt decision. Probably the quickness is a good thing for Dad, whose random-rewind mind tonight stuck on one concept: I don’t want to go there. In his old-man-little-boy voice: Can’t I stay home? "Home" is one concept he still understands; what it really means to him is another thing entirely. Is it home because it has sheltered him for thirty years, because he painted its walls, repaired its roof, buried mourned-for cats in its deepest dirts? Is it home because of his possessions, the flannel quilt my mom made for him, his closetful of books, the arrowhead displays he made and hung? Or maybe it is home because in the corners and the window ledges, little bits of memory have floated down like dust, the years of Christmases and holidays, the echoes of old arguments and crazy daughters, laughter and crying and how many meals. Maybe what I’ve always believed—that home is something you carry with you when you leave a place—isn’t true at all. Maybe he will never feel at home again.

The concept of something is always different than the reality. I’ve been trying to convince Mom that Dad needs to be in a rest home for six months, but tomorrow it changes. Tomorrow it is real. Maybe it is harder for the rest of us than it is for him. Maybe with his quilt and a shelf full of books, maybe with his arrowhead display on the wall and visits from Mom, he’ll be OK. How much does he really understand, by now, of any of this? Despite that trace of old man in his voice on the phone, he is more child now, and what he needs, like any child, is to feel loved. We can love him anywhere, and it seems that loving us back is one of the other concepts he still gets. Because he never fails to hug everyone before he leaves a place. His hugs are sincere, void of pretense; they mean, somehow, more than a hug. He cannot tell me what it is he’s trying to say, and I cannot fully read his meaning. But I always hug him back. I always end the quick embrace feeling like it was his last parental thing he can do—that it is his way of saying "it will all be OK. Don’t worry." For a second, I feel I have a father again, a concept I wish I could hold on to.

Neil Diamond Was My Childhood Soundtrack

On Sunday, we had Haley's birthday dinner. It's our tradition that for the kids' birthdays, we have both sets of grandparents come for dinner. The birthday girl/boy gets to choose the menu. I love this tradition we've developed, and the kids do, too; they look forward to it for most of their birthday month and there is much time spent discussing what they want to eat. For Haley's dinner, she chose her absolute favorite thing lately, my pasta salad. We had Caesar salad (another of her favorites) and chicken salad sandwiches, too. Definitely a salad-rich meal!

When we were outside on the patio eating dessert (Key lime bars instead of the traditional cake; I spelled out the "Happy Birthday" with whipped cream), I found myself staring at my dad. His Alzheimer's has manifested itself in silence; he very rarely says a word. But when I'd handed him his plate, he'd said "thank you, Amy." And he looked me right in the eye. I started to wonder: who is he, now? Or maybe the right question is where is he now? I have this image of his psyche as a sort of wilderness, crowded with trees and cliffs and a tangle of trails, each of them leading nowhere. But in that image, his soul is curled up, a cat in a soft bed of ferns, comfortable and quiet while his mind wanders. As I watched him eat his dessert, I wondered: what does it feel like to be him? Is this image I've created for myself anywhere close---is there a spot in him of peacefulness amid all the confusion and horrible silence? He looked up and caught my eye again, and he didn't look away, but he didn't really look, either. Our gaze, between two sets of brown eyes, was a one-way path. Nothing came back from him, and all I could do to not cry was to remember that he still knows my name.

Those few quick moments of looking into my dad's eyes have got me really thinking about him this week. My dad was far from the perfect dad. In our family, my mom was the go-getter. She made things happen, while my dad seemed just along for the ride. I have very few memories of him doing stuff with me. He took me fishing once at Deer Creek. He taught me how to water ski (I never trusted anyone else but my dad to pull me on water skis). He took me and Becky to the library. But he wasn't the kind of dad who helped with homework, or sat down and talked to me just to talk (until we were older), or took me with him to the hardware store. He never taught me to throw a football or catch a baseball. And he made quite a few bad financial decisions, which had enormous impacts on my own decisions.

But despite his shortcomings, he still managed to teach me things. I credit him with my love of reading, and he's half responsible for my love of flowers (the other half came from my Grandpa Fuzz). He liked to take pictures, and so do I. There's also a way of looking at the world that I think comes from my dad. Plus, my dad was an A/V geek. He had an enormous stereo, with speakers both upstairs and downstairs. I remember boyfriends admiring that stereo. I also remember the great Beta vs. VHS debate. In our house, it came down on the side of Beta, so my family was among those people in the late 80s who only got to rent a select few videos, the ones that came out in Beta. (That Beta player is still in my parents' basement, by the way. If you were curious.) We could listen to our Beta movies through the speakers instead of just through the TV. We had a custom stereo installed in our (very old) boat, too. We'd be hanging out under a shady overhang in Lake Powell with the stereo booming, his musical choices bouncing off the sandstone.

I didn't ever appreciate his stereo obsessions and possessions, though, because I was always so annoyed with his taste in music. What trying-to-be-cool teenager wants to listen to Kenny Rogers or Roger Whittaker? The always-dreaded "Put Another Log on The Fire"? Or the very special women in our musical heritage, Dolly Parton and the Mandrell sisters? Seriously. I hated his music. But here is a confession: I never minded Neil Diamond. (That's harder to admit to than liking Richard Marx.) "America" sounded especially impressive in the Lake Powell sandstone acoustics.

So last night, when the American Idol people sang the Neil Diamond songs? Here's another confession: I knew every single song. Even the ones David Cook sang. I watched the entire show. I sang along (much to Kendell's surprise) and then I got in the tub and had a good cry. Because I realized: I never told my dad I didn't mind Neil Diamond. I never told him I was grateful for that enormous stereo and the cool-with-boys status those huge speakers gave me. He doesn't know that part of the reason I still listen to music almost as much as I did as a teenager is because of his example. And that's just the beginning of a long, long list I could write, a catalog titled "what I should have told Dad." He doesn't know the things I am still deep-down angry over, or the things I have long-since forgiven him for. I never told him what I admired about him or what I wish he would have changed. I never even apologized for all my adolescent shenanigans.

And that is what I hate most about this disease: having a diminishing version of this person you love, watching him vanish by fractions, but he's still here, his brown eyes staring back at you with an awful blankness. Is this horrible to say? But if he were dead, I could imagine him at peace. I could have conversations with him in my head and imagine he could hear them. If he were gone I could picture his spirit as something more than a cat curled up in ferns. I could know he was doing something besides simply lingering on the edge of things. Out of all the baggage that comes with Alzheimer's, the worst thing is having this man sitting at my outdoor table eating dessert, knowing he looks like my father but no longer is my father. Knowing that my idyllic soul-setting is probably nothing close to the truth, is a construct for my own sense of peace, and that probably his sense of self---his soul---is a tormented and confused psychic scrap. Knowing I am helpless to do anything but watch the decline and wish I had even once just opened my mouth and told him what I wish he knew now.

The Scent of Memory

Someone emailed me a few days ago to ask how my dad is doing, and I realized I've not written much about him on my blog lately. This is because his illness has been uncovering some deeply-buried fault lines in our family, and while I think about Dad a lot, as well as how things are shaking out, I've just not been able to write much about it. I once said that going through the experience of someone you loving suffering from Alzheimer's is like looking at your life with a magnifying glass. Another metaphor that seems appropriate, lately, is that Dad's disease has been like a spark dropped into a field of dry grass; suddenly we see how weak we are, just before we all go up in flames. What I can only hope for is the restorative power that fire can have, and that when it is over, we will be lush again, and stronger.

But that is how the Alzheimer's is affecting me; how it is affecting Dad is to make him even more silent. His standard answer to anything is "OK" (a trait he shares with Kaleb, oddly enough), followed by a confused silence and then sometimes a different answer. K_and_d_brick_oven_2 What surprises me most is how child-like he has become. A few weeks ago, we were swimming at my sister's pool, and Dad got a hold of a water gun. He was shooting people and grinning and he reminded me, in the innocent way he tracked his target and the happiness he got from hitting them, of my boys. And then there was the moment, when Becky and I took him to lunch at Carl's Jr., when she was telling a funny story about passing out when she's hurt, and he laughed along with us. He didn't seem to be laughing just because we were, but because he thought the story was funny. It was a bright moment.

Which is good to have, because there are dark ones, too, like last week when I went to spend the day at his house (our trees were being sprayed for Japanese beetles which our city is trying to eradicate---I'm not a big fan of pesticides but as this was mandatory...). At first he seemed OK; he asked me why Haley wasn't there, and whether Kendell had fun on his trip. He thanked me for bringing him lunch. But when I proceeded to stay after lunch, something made him uncomfortable. "I need to go outside while you're here," he said, and then he went outside to weed the vegetable garden and refused to come inside. Once I was ready to leave, he said "good, so I can come back in now." I don't expect any logical reason for how he was acting, and of course I'm not angry. But this was, I think, a small taste of how it will feel when he doesn't know who I am anymore, and all I can do is try to lift up those bright memories to hold the darkness away.

Last week, the newspaper published an article about how problems with detecting scents can signal the early stages of cognitive memory problems (like Alzheimer's and Parkinson's diseases). This idea has haunted me, because for me, scents are the strongest memory triggers I have. Some scents are so strongly connected to an event that it's not just the scent reminding me, but that the scent is the way that memory feels. So it makes perfect sense that the disease goes for the sense of smell first; take away smell and the memories themselves start to wither.

I don't have any idea what my dad's favorite scent might have been. I don't know what memories he had attached to scents. Or if he ever knew that every time I smell a petunia, I return to the age of ten, in our backyard flower garden, posing for a picture on a rock island in a sea of magenta petunias, their warm velvet petals swirling us with a fragrance so strong and sweet it is heartbreaking. So, I have a challenge for you. Right now, write down a catalog of scents that are strongly attached to a memory. Keep it on your computer so you can add to it as more things occur or are remembered. And ask someone you love, too. Don't forget. Don't let it be lost.

A Magnifying Glass

Last week was busy because my mom had to have surgery. She had several ulcers in her intestines, which had been causing her severe pain. The surgery went well and she's now home recuperating. The issue, though, was who would take care of my dad while she was in the hospital. My three sisters and I tried to divide it up evenly. I had him at my house during the day. It's been a long while since I've spent this much time with him and I am amazed at how much he has deteriorated. He hardly talks at all anymore, and when you ask him a question he'll almost always answer "no" before he can figure out what he really wants to say. He did have a few very lucid moments when he asked me some astonishing questions. It's hard to grasp how he couldn't understand what I meant when I asked him if he was warm enough in the car, but yet he could ask me about things that happened more than 16 years ago. We even had a couple of conversations about his disease. It was an enlightening few days, during which I came to understand a little bit of what my mom feels as the main caregiver, I realized (again) how badly I failed at really listening to him before, and I had reinforced the importance of recording my stories and my children's.

But I also had a few "ah ha" moments that related directly to me and how I live my life. I hope I never have to really understand how it feels to have Alzheimer's, but one of the images I have in my head is that it is something like looking through a telescope backwards. Everything is too small, hard to see and understand, even though it's all right there before you. Experiencing the disease from the other side of the telescope, though, it is more like being underneath a magnifying glass. It catches everything in its power and makes it larger. This was a week of plenty of family drama, and suddenly all our foibles and weaknesses and issues seem enormous to me. Alcoholism, procrastination, marriage troubles, selfishness, fear, money problems, and just the everyday issues of trying to live a normal life: these all seemed magnified that week.

So this week, I am trying to do something with that magnification. The thing about seeing things larger than life is that you can examine them more closely. In particular, having seen procrastination and its effects in the lives of some of my family members (I am being vague and not naming names so as to not hurt anyone's feelings), I can recognize my own affinity for it. I have this glimmer of self-understanding, of how I use the small, daily things in life---things like housework and laundry, and even good things like being with my kids, or spending time with Kendell, or scrapbooking---as excuses for avoiding the real work I tell myself I want to do but just never get around to.

Really: my dad is miserable. There isn't much we can do to help him, aside from small kindnesses like meals and companionship and photographs (he really does love looking at pictures). He is stuck on the wrong side of a telescope, and I am helpless to free him. But I am filled with determination to at least learn from his experiences---to make of this life that he gave me something good and strong and lasting. Maybe that's the only thing I can do in the glass I am stuck under. No more just thinking---it is time to act.