Alzheimers – Page 2 – Laura Stavoe

Tending to Endings (nineteen)

It’s been strange these past couple months because while on one hand I have been reeling with everyone else with the rapid fire pace of Covid-19 and how it has dismantled much of everyday life, on the other hand, some of it feels familiar and like an extension of what started for me on November 6, 2018 when I took leave from my very busy job at a community college to go to Chicago to help my dad care for my mom.

Now that I have perspective on the arc of that story, I tend to forget that I saw my trip as fairly defined when I left Idaho for Chicago. Mom’s health was deteriorating due to Alzheimer’s, and she had painful wounds from radiation after her second bout with vulvar cancer. My dad and my sisters had taken her to specialists and the wounds still were not healing. She had even ended up at the emergency room. Also, my dad was recovering from hip replacement surgery.

My plan was to stay with my parents until they were both well enough to travel to their winter home in Maui, and then I’d help them get settled there and return home. I had a goal and twelve weeks of family medical leave if needed.

Just before I arrived, a doctor recommended a hyperbaric oxygen therapy for my mom that sometimes helps treat radiation wounds. I arrived just in time. My assignment involved waking up at 5:15 each morning and driving to the hospital and talking a woman with Alzheimer’s into sitting in a large metal tube for two hours. The therapy would take 20-30 sessions, depending.

My dad and I do well with goals, and we proceeded like we were training for a marathon. We marked each treatment on the calendar and sent each other high-five emojis from the hospital when Mom was safely in the chamber, the oxygen hissing into the capsule.

We overcame obstacles. An early snowstorm and icy roads closed the schools and kept all of the other patients and many hospital staff home one morning. But we made it, and waited for plows to free the chamber’s exhaust system from piles of snow so my mom could get her treatment. One morning my mom who was in pain didn’t want to get out of the tub, and my dad and I pleaded and bargained with her at the door until she finally said, “Fine, I know how important this is to the two of you.” And I helped her into her green scrubs while my dad brought the car around to the front of their condo building so we could make it just in the nick of time.

Weekend mornings we would stand over the calendar and calculate our progress. One day we saw were on target for making it to Maui before Christmas.

Only, my Mom’s pain wasn’t going away. Recently it had begun to seem worse. Her doctor prescribed stronger pain medication. Then, twenty-three treatments in and just after Thanksgiving, we took her to another specialist where we learned the cancer was back. My dad and I were deflated, defeated.

I’ve been thinking a lot about an essay I read recently by Elizabeth Outka published in the Paris Review about the literature of pandemics and particularly Kathrine Anne Porter’s, Pale Horse, Pale Rider, set during World War I and the influenza pandemic of 1918. The essay grapples with the questions of uncertainty the characters face in an ever changing situation. Outka writes,

The past is always another country, but the speed at which knowledge becomes outdated, naivete turns to realization, and basic truths change is dizzying during a pandemic. In “Pale Horse, Pale Rider,” Porter wove her own paradigm-altering experience into a broader meditation on the vertigo induced by such shifts…
One’s reality doesn’t simply shift in a pandemic; it becomes radically uncertain—indeed, uncertainty is the reality. The unpredictability of the COVID-19 virus and all we don’t know about it means we have no idea where we are in the story or even what story we are in. Is this the first wave of something even deadlier to come? Have we reached the top of the curve? What’s the scope of the tragedy? Is the economy the real story? What do we think we know now that may prove fatally wrong? The narrative of uncertainty causes many of us to turn to genre fiction and predictable movies (even if they are about disaster)—they allow us to pull down another story like a shade and sit in a place where we already know the ending.

I don’t know if being a writer makes me more prone to wanting to figure out the whole story when I’m still in the middle, or whether it is just being human. Caregiving it seems is particularly prone to this state of not knowing. And my tendency in the middle of it all is to grasp at meaning, to try and see the whole picture, as though in figuring out the story, I will know how I will be able to stand it.

My mom’s story shifted many times over the next six months, and mine did too. I remember for a while after we had made it to Hawaii and my mom was on hospice care, there was a stretch of time when she was not sleeping well. She would wake up in the middle of the night and feel like she couldn’t get air. The nurse brought an oxygen machine and ordered anti-anxiety medication and Dad and I took turns staying up, walking around the condo with my mom holding her so she wouldn’t fall. None of it felt ok and we were low on sleep and we didn’t know if she would ever be able to rest again.

“It is not like a marathon,” I told my dad, “because in a marathon you always know what mile you are on.”

Caregiving is more like being in an open water ocean swim with no shore in sight. It is disorienting to not know how far you have to swim or how to pace yourself. You can’t even hope for the shore to come into view because when that happens, it also means, you will no longer have your mother.

One thing that helped me then and helps me now is admitting that my current job is not to try to figure out the whole story. It’s not, as my mind always initially tells me, to fix the catastrophe, whether it is a pandemic or cancer or Alzheimer’s. Maybe that should be obvious, but as soon as I am afraid for someone or something I love, old habits tend to rear their head.

Sometimes I think humility is the sleeper of superpowers. When I let go of the thing I cannot control and give into the reality of not knowing, I can ask the question: Ok, I guess my role here isn’t to fix or even to steer the whole global situation, so what is it?

Always I find something in front of me I can do with my particular skills and sphere of influence. Invariably, it feels too small for the conditions. Still, I can begin. Finding purpose buoys me, and I can swim.

I think now about my mom and I during one of those sleepless nights. It was 3:11 am when I awoke to the safety alarm and found her standing next to her bed, too agitated to sit much less sleep. She wasn’t having any of my reassurances. She wanted to go home (she was home). She wanted me to let her put on her shoes (we did, then undid). We leaned against each other, walking like two drunks around the condo, her balance gone due to dementia and me, groggy, and exhausted, but the more sober friend, holding her up.

I talked about the ocean and the moon. I rattled off stories from her childhood and hoped the medication would kick in. She asked me again and again to take her home. It was almost dawn when she was willing to sit on my bed and we talked about the house she grew up in, each adding details about the different rooms until finally, we slept.

That night, I was there for her to lean against. For that small thing.

More Resources:

Comfortable with Uncertainty, by Pema Chodran

Pale Horse, Pale Rider, Katherine Anne Porter

“How Pandemics Seep into Literature,” Elizabeth Outka, Paris Review, April 8, 2020.

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Tending to Endings (eleven)

I generally don’t focus on regrets. My mom taught me that. There is no point to stewing over what you can’t change, she would say, unless you like to feel bad. And she’d give her small knowing smile. But sometimes the moments I wish I acted differently provide a helpful contrast, a non-example we would call it in education lesson planning.

There was a morning about five Christmases ago when my sisters and their families and mine met in Maui for the holiday. My mom, 75 at the time, did not seem elderly. She walked a couple miles each day. She was very involved with friends and community and life. But there were noticeable memory lapses, more than grasping for a word or mixing up grandchildren’s names.

On this morning, one of my nephews— I will call him Chris here—joined Mom and I in the elevator and was looking at his phone on the ride down to the lobby. When the doors opened, he said, goodbye to us. After he left, my mom said, “Chris didn’t even say good morning. You’d think he didn’t appreciate that we brought everyone here to be together.” I heard hurt and anger in her voice.

I was confused and a little defensive on Chris’s behalf. Mom didn’t believe in using guilt. The sentence didn’t sound like her. Also, we had just had a really good conversation with Chris. He had come to see her first thing that morning.

“I don’t think that’s how he feels,” I said, “We were just talking to him in the condo. He said good morning then.”

My mom stopped walking. “We did? I don’t remember that.” I could tell from her worried look that she really did not remember the conversation we’d had only about twenty minutes earlier.

“Yes, remember, we talked about walking to breakfast tomorrow morning.”

“I’m losing my mind,” my mom said. “I don’t know what’s happening to me.”

“You’re ok, mom. You just forgot.”

“I don’t feel ok.”

I don’t remember everything I said, but it was along those same lines. We all forget things sometimes. You are fine!

What I wish I was able to say in that moment instead is: Tell me more about what that feels like. It sounds like it might be scary and I don’t want you to feel alone.

Today I see that my own fears got in the way of being able to hear what my mom was saying. I couldn’t see the opportunity, that she was reaching out to me.

It was a year before my mom was diagnosed with Alzheimer’s, and even longer before I learned to not try to correct or adjust her perspective and instead listen to her feelings. (Something that has proven incredibly valuable in other circumstances if I remember to do it!)

Sometimes I think Alzheimer’s is going to be the thing that finally helps us to turn into a more compassionate culture—compassion for those with cognitive differences, compassion for caregivers and families, compassion for ourselves. One in three seniors dies with Alzheimer’s or another form of dementia. And with more and more of us living to old age, the number of people living with Alzheimer’s is likely to almost triple by 2050. Chances are high that each of us will at some point be close to someone who is affected.

Loving someone with Alzheimer’s means drawing close to a person who is undergoing profound loss. It is a heartbreaking disease that makes everyday life unpredictable. It is difficult to not let fear take over.

But not everything was as bad as I feared. I may regret moments, but I am so very grateful for all of the time that I did have with my mom and all that I learned. I found patience and open-mindedness and compassion are incredibly helpful. So is community. So is self-forgiveness.

Earlier this week a friend and I were talking about how before you know the disease of Alzheimer’s intimately, you think your loved one not remembering you would be the worst thing. It’s what people often ask—Did your mom know you? It was a question I didn’t even know how to accurately answer.

One afternoon my mom’s friend Pat came to visit. My mom wasn’t eating or drinking much. Pat had brought egg salad which had always been a favorite and mom ate spoonfuls from the bowl and groaned at how good it was.

Pat sat close to my mom who was reclining on the chaise lounge on the lanai.

Mom said, “We’ve had a lot of special times together, haven’t we?” I could tell she was searching. Mom had learned over the years to prompt people into giving more context.

Pat held my mom’s hands and looked into her eyes. “Yes, remember our parenting group when all of our kids were small? We’d gather in your kitchen.”

“Oh, I remember that,” my mom said. And I could tell from the glint in her eyes she did.

“And then later we used to come here to Maui and sit out on the lawn of Mahana and talk about books and try and solve all of the world’s problems!”

Mom laughed. “We have a ways to go on that one, don’t we!”

Dave and Pat Partlow and Jane and Ron Stavoe circa 1978

After awhile, Pat had to go, and I walked her to the door. When I returned to the lanai, my mom was staring at the empty chair where Pat had been, and continuing the conversation. “Pat, how are your children doing?” she said, staring intently at the empty chair. I slipped into it and smiled back. I held her hands. I answered as though I was Pat. My mom remained animated, happy. We talked and talked.

I remember that moment as a joyful one. It turns out, my worst fear was not that my mom wouldn’t remember me. It was that my mom would feel afraid and alone at the end of her life. I knew my mom had a very good life, and I didn’t want her ending to be tragic.

My mom had many challenges and difficulties at the end, but it was not tragic. She was surrounded by love and she knew it.

One morning a couple months before her death, my mom and I sat where we had shared coffee so many mornings. We looked out on the Pacific Ocean, the water and the sky still gray in the early light. She said, “It is so beautiful.”

“Isn’t it? Aren’t we lucky?” I said. And when she turned toward me, I could see from the searching look in her eyes, she wasn’t sure who I was.

“It’s ok if you don’t remember this—you have an illness that jumbles up time and place sometimes—but I am your daughter.”

“Really?” she said. “I don’t remember, but you feel familiar.” She smiled. “I have a warm feeling toward you.”

We sat, then, with our arms touching watching the surfers on their boards waiting for waves, watching the sky turn pale, then pink, then blue.

I think now about how close I felt in that moment to my mom, a woman who did not remember that she birthed me, yet knew me still.

For those in the Boise Area, the spring Death Cafe has been cancelled. You can find more info about upcoming related events on the Boise Death Cafe Fb page.

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Tag: Alzheimers

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