Cheryl Walsh

Musings on Ten Thousand Joys and Ten Thousand Sorrows: A Couple's Journey Through Alzheimer's, by Olivia Ames Hoblitzelle.

 

Finding meaning in the loss of the capacity to find meaning: that is the challenge for anyone whose life has been spent in the pursuit of meaning and who now faces dementia. Olivia Ames Hoblitzelle and her husband, Harrison "Hob" Hoblitzelle, both put the study and practice of meditation at the center of their personal and professional lives. Olivia's memoir of their life after Hob had been diagnosed with Alzheimer's refers to many of the difficulties they encountered, but she spends much more time describing and explaining the rewards of sharing, insight, and patience.

 

Hob and Olivia decided soon after his diagnosis to accept his condition and be open to the lessons it offered, and he spent much of his final years observing with curiosity the progress of the disease. It was meaningful to him, and he could share that with Olivia, and that sharing multiplied the joys of their journey together.

 

As I read it, I was a bit envious.

 

I have often wondered whether being more open with Bru about his dementia might be good for him, and for me. But his reaction to being told he had dementia was very different from Hob's. The diagnosis was deeply traumatic. For months, he refused to leave the house without me. He did not want to be alone at home, either. He was terribly anxious and grief-stricken for weeks and weeks. Only gradually did we claw our way back to a place where he could exercise a significant level of independence.

 

He has since lost most of that independence, but the intense anxiety has faded away. Thank God.

 

Though I was distressed by Bru's diagnosis—I knew he had some cognitive problems, but I hadn't realized he had already crossed over the line that defines dementia—I was traumatized by his anxiety. Now I rarely mention his dementia to him or in his presence. Really, only at the doctor's office. If we talk about his condition, we refer to his "memory problems." He knows he has lost many of his memories—he can't remember how we met, or some of the places where he taught, or colleagues he worked with every day. He knows he has trouble solving problems and can't find the words for what he wants to say. He knows his capacities are diminished, but he thinks of it as normal aging. Which it isn't, however common it might be among people in their late 80s.

 

Would it be better for him to find meaning in his diminishment? Would greater awareness in the moment be a blessing or a curse, a joy or a sorrow? Would it be both, and could I stand the curse for the sake of the blessing?

 

Though Bru didn't have as strong a commitment or understanding of meditation and spiritual journeying as the Hoblitzelles, he has long been a consciously spiritual person and did keep up a meditation practice for many years until very recently. However, he no longer understands the point of meditation.

 

He has found other, narrower, outlets. He still finds comfort in sharing contemplative spaces with me, for example, and he loves to study black and white photographs that he has made, as well as those of some of the great photographers he has known. He is often moved to the point of tears when he is fully immersed in an image or a moment. There is a deep joy in that, but the concepts behind such experiences are beyond his interest.

 

Bru's narrower outlets get narrower all the time. The narrowing seems to be the corresponding sorrow to my continuing joy in the beauty of our everyday. It is a mercy that Bru isn't aware of the narrowing as such. And I'm grateful for such mercies, though I still weep over them.

For all the time I've known Bru, he hasn't been religious. (He joined the Mormons as a teenager but left them after a few years.) I've been a Roman Catholic all my life, and for most of our marriage, he was quite happy to be left behind when I went to Mass. However, as his cognitive decline became more noticeable, his desire to come along grew.

 

I believe this began because he simply didn't want to be alone, but he often seems to enjoy Mass now. Always a people watcher, he observes how our fellow parishioners pray (or don't), how children behave (or don't), and how people dress up (or don't). He likes the music when it's well done, which is most of the time, and he really likes how one of the priests preaches.

 

Two Sundays ago, he seemed confused and a little upset before we left for church. This isn't unusual when we are leaving the house, but he seemed to have something on his mind that he couldn't articulate. He said he didn't feel well. This also isn't unusual, but I told him we could stay home, that if he felt sick we didn't need to go to church.

 

"No, I want to go to church. I've been looking forward to it."

 

As we walked to the church, he was close to tears and said several times, "I'm sorry," as if he had done something that had hurt me. I tried to reassure him that all was well, and the wave of emotion receded, though it swelled again when we sat down, and then receded once more.

 

The priest announced at the beginning of Mass that there would be an anointing of the sick after the homily. I wondered whether I should be anointed, to help ease the psychological strain I've been feeling, and I also thought how wonderful it would be if Bru were anointed. But I immediately dismissed both ideas because I didn't want to create any additional confusion for Bru. He's not familiar with the rite, and I didn't know if he would understand my instructions in the moment. So when the time came, we didn't stand for the blessing.

 

But as the actual anointing began, I could tell Bru was agitated and close to tears. I put my hand on his knee and leaned close to ask him if he was OK. He shook his head. Then something prompted me to ask if he wanted to be anointed. He took a beat to answer, but when he did, it was a very firm "Yes."

 

I whispered, "OK! Stand up, now."

 

I guided him to the end of the pew. Then I showed him how to hold his hands, palms upward. When the priest anointed his forehead, I said "Amen" for him, and when his palms were anointed, he said "Amen" for himself.

 

He became calm as we sat down, and I wondered briefly if a miracle would take place, if his dementia would disappear or his cognitive decline would recede like the wave of emotion after his anointing.

 

It didn't. There was no miracle cure. But something seemed different.

 

When we got home, he sobbed for a long time, regretting the difficulties his family endured when he was young. Afterwards, he seemed lighter, and he was more talkative and engaged than usual for the rest of the day.

 

We didn't talk about the anointing.

 

The next morning, he was positively chirpy. He was watching the squirrels in the backyard, and hoping some deer would come by so he could go out and shoo them away. He laughed at jokes and made very bad puns. And he was singing, a phrase here and there from old standards, usually triggered by a word or phrase from our conversation.

 

There's no miracle here. He doesn't remember his anointing at all. But since then, he has been lighter and happier. Not a lot, but enough to notice. I hope (and pray, with gratitude) that this new ease, whatever the source, will continue to give him more good days in whatever time he has left.

When you live with someone who has dementia, truth often becomes irrelevant. Lying is not only a practical necessity but sometimes the only humane option.

 

For example, more and more Bru asks me, "Where's Cheryl?" Until recently, I've always smiled, raised my hand, and said, "I'm Cheryl!" That used to be all it took for him to be assured that I was indeed present and accounted for. Now, however, he doesn't believe me. Not always, at any rate. If I insist that I'm Cheryl, it just frustrates him and makes him increasingly fearful that something has happened to me. The only way to give him the assurance he needs is to lie.

 

You would think that it would come easily to me, fiction writers already having an ambiguous relationship with the truth. But it turns out I'm not a very good liar. (Exactly what a good liar would tell you. I would imagine.) Lying well requires spontaneity—improvisation—and that's never been my strong suit.

 

With writing, you can take time to plot and shape your lies so that they are believable. You can control your tells. In fact, you can control the whole world as long as you're willing to create it! My instinct makes me want every lie to fit into a whole. The lie needs a backstory, and it has to lead to the next scene and eventually to the end game.

 

Lying in real time is dynamic and interactive, and I would just hate to be caught in a lie (probably why I have a lifetime's experience telling the truth). Whether suspicious or curious, there are bound to be questions. I keep wanting my lies to have a good backstory in case I need to improvise, so that I have something to work with. But I have to fight that instinct.

 

Making the lie as simple as possible is the key to keeping the questions to a minimum. I have to make it an uninteresting bit of banality that leads nowhere—the exact opposite of what you want in fiction.

 

The thing is, whether the lie is plain or fascinating, Bru won't remember it. And he won't remember any lies I've told before. There's no way I can build a world he would recognize, however much I might want to.

 

I have to enter his world and respond to his questions and demands as if his perception defined reality. When he tells me I'm not Cheryl, I have to agree.

 

So if I'm not Cheryl, where is she?

 

Taking care of some business in town—depositing a check, or doing research at the library. Or else I can say, "I'm not sure. She didn't say. But she'll be back." And I've learned to add: "She asked me to stay with you until she gets back. She knows you don't like to be alone."

 

That makes him smile a little and relax.  He says, "That's true."

 

He seems to interpret that little tag on the lie as meaning that Cheryl cares, that she is thinking about him, that he is loved, that he is not alone. And even if all that weren't the truth, I'd still say it, because that's what he needs to hear.

An appreciation of Victoria Chang's poetry collection Obit.

 

"My father's brain has died before him. It was surrounded by his beloved skull. What if the hinges on his skull break and his brain falls out? Do I give it back or toss it? What if we call the waiter over and God comes instead? Do we offer him a seat and a brandy or do we cover our eyes and hope He doesn't see us?"

~ Victoria Chang

 

I was starstruck by Victoria Chang's brilliant line, "What if we call the waiter over and God comes instead?" from the prose poem "The Obituary Writer" in her superb book Obit. Here are some of my musings on why.

 

It has been the basis of my most moving religious experiences that God is with us here and now in one another—one of us, and all of us. But there's something else going on in this line.

 

God comes not as an inherent part of the waiter's humanity, but instead. There's a sense of panic in coming face to face with God, and a sense of shame that we would rather avoid something that should be a great honor. Is it because I'm not ready for it? Because I'm embarrassed that I don't know what the protocol is? Because what I've ordered, or wanted to order, is something God would not or should not give? Or am I afraid He will bring exactly what I ordered?

 

Maybe God will tell me he has opened up my husband's head, pulled out his shrinking brain, and tossed it.

 

No, God wouldn't tell me that. Would He? (Would She?) Please don't tell me that was a "secret supplication of the heart" tracked by the Recording Angel.

 

Caring for, and grieving for, someone who is suffering from increasing dementia is not only heart-wrenching, it's exhausting. Sometimes I just want it to be over.

 

But of course I don't want it to be over. Though we've lost a great deal, there's so much left to experience and discover.

 

If only I had the time, energy, patience, and love to do this right, to appreciate everything Bru can still do and treasure every aspect of life we still have together. If only I could be, if not the perfect partner, at least a competent caregiver.

 

This is how I feel: conflicted, ashamed, disloyal, confused, beaten down, and embarrassed by it all. A failure at love and at care. And of course I know that my feelings do not define reality, real though they are. I know that I'm managing, that I'm doing much that is right, and that failing in the moment at a particular task does not make me a failure.

 

But still, do I really want to know what God might think of me? Will He give me what I ordered (which order?), or give me what I deserve?

 

Victoria Chang's poetry collection Obit largely comprises prose poems in the format of obituaries. It examines the extended and fractured grief that comes with the slow death of a loved one, as well the ambiguous loss created by dementia. In this book, many things die before anyone breathes their last: the father's frontal lobe, the mother's lungs, the poet (many times), language (many times), voice mail, the future, civility, privacy, and on and on.

 

I have my own list of things that merit a private obituary. The surreality in many of Chang's obituaries dovetails my experience of the way grief can distort and disorient as I deal with Bru's disorientation and declining abilities. In Chang's hands, the clarity of grief's distortion can be redemptive, and I'm grateful for her showing me that sometimes moments of beauty can be made of heartache, frustration, and anger. Obit is an important book, and I'm glad to have it on my shelf.

At the Associated Writers and Writing Programs (AWP) conference earlier this month (February 2024), I attended a panel entitled Grief: What Is It Good For? As I listened to the panelists' excellent conversation, one of the things I scribbled in my notebook was: "Maybe it's time I wrote about grief."

 

As if I haven't been writing about grief for decades. Unequal Temperament, after all, is in large part a story of a woman's grief over not just the loss of her father, but the loss of an ambition, and the loss of a life-changing opportunity.

 

Going back even further, my first novel (Our Trespasses, still unpublished) featured in one of its narrative threads the protagonist's unresolved grief over the loss of a relationship. For me, the breakup of a friendship, most especially one with a romantic attachment, is an ambiguous loss: the relationship is gone, but the person is still there, the connection feels like it's still there (and sometimes it is, albeit in different form). The grief is sticky, and I have never found the solvent that will dissolve it and let me wash it away. It erodes with time and the soft abrasion of other relationships. But the remnants are still there, still causing an irritation if not an outright ache.

 

I've written about and around my heartaches before, sometimes in essays but many times more in fiction. Writing is no cure for grief, but it's one way to contend with it. I was covered in terribly sticky grief throughout my 30s and well into my 40s, but I nevertheless achieved a lot during that time. I wrote Our Trespasses, for one thing, and though grief underlies one thread, there are several others that have nothing to do with loss. And my own life in that time was not about grieving. I was simply living with grief and, maybe, very slowly healing the burn that loss had made and that ambiguity kept refreshing. Or maybe it's more that I allowed ambiguity to keep refreshing it.

 

Before the AWP panel on grief got underway, the moderator asked all of us in the audience to turn to someone nearby and briefly name a person for whom we were grieving. Did I name my mother, who had died only a few weeks before? No, what popped out of my mouth was the name of my husband, who is very much alive.

 

Bru has dementia. He can talk, but more and more he can't find the words he wants. He can follow simple directions, but problem-solving is almost always out of his reach. He can read, but he can no longer read books, because he can't remember enough from one page to the next to make sense of them. He can dress himself, but I can tell he is becoming confused about the order in which he needs to put his clothes on. Bru is losing his cognitive abilities frighteningly fast.

 

And yet, Bru and I still laugh a lot together. He is still my Bru, even though he may not recognize me at times and lacks the confidence to do things that used to be second nature. His personality hasn't changed (yet), but he is no longer the man I fell in love with, that I married, that I built a life with. I can no longer have those stimulating, clarifying, problem-solving conversations we used to have, and I can't remember when they no longer became possible.

 

I am covered in a very sticky ambiguous grief. There are fresh coats being laid down all the time.

 

I need to stop trying to wipe it off and instead write about it. Or around it, or through it.