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.

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.