The Connecting Thread

Memory binds us all, even when it is slowly fading away, it is never severed.

An illustration of two people holding hands in front of a tree. // Illustration by Roshan Capewell

Written by Clifford Heberden

Losing recollection of a dream on a morning when it all first felt so clear is a disorienting moment for those who pain to hold on to it. The feelings brought up by a once solidly defined memory now lost, mostly arouse confusion, frustration and sometimes helplessness.

But this is only the short story of a morning’s lost dream. The experience of patients suffering from Alzheimer’s disease, whose memories of life are slowly fading, is one that can be hard to grasp.

It can only be understood through time and the experience of those learning to care for them.

The Alzheimer’s Association said that as of 2020, an estimated 120,000 people live with Alzheimer’s disease. The disease, still without a cure or form of treatment, manifests as changes in thought, memory, reason and behavior. Gradually, the disease causes the loss of memory and the capacity to engage in everyday life.

Marlene Bronson, 71, was diagnosed with Alzheimer’s and vascular dementia about four years ago. Her husband, Howard, said she had been having problems for about seven years; of which you could noticeably see her decline over time.

Sitting at his dining room table, while Marlene ate a plate of scrambled eggs in front of the television, he recalled how her diagnosis impacted him when the results first came in.

“I just knew at that time where things were gonna go and just mentally prepared myself,” Howard said. “Because before that, we had retired and had gone on a cruise, we were going to keep going on cruises traveling down and that just kind of all went out the window.”

Going on vacations and taking trips to visit family members began to become more taxing for Marlene. The couple mostly stays home now as Howard takes care of her full time and tries to take things day by day.

Helene Zaslow, 67, is a retired nurse that worked in hospice in Whatcom County for 29 years. Her mission as a nurse was to educate and be present for her families and her patients suffering from Alzheimer’s disease diagnoses.

“It was really them going through it with their loved ones,” she said. “If I could help make it better for them, that was my goal of care.”

Sitting in her armchair, petting her dog Taki, Zaslow recalled seeing families come into her facility, lost and confused. It is difficult for caretakers to understand the disease and how to care for loved ones who are being affected.

“Families needed to see what the hospice team brought so that they could mimic that behavior, because it’s very foreign to be able to accommodate their loved one in a way that they needed to be cared for,” Zaslow said.

She has seen caregivers mentally, physically and emotionally exhausted. According to Unicity Healthcare, most Alzheimer’s caretakers experience increased risk of physical illness, social isolation, decreased emotional well-being and an acute financial toll due to care or facility costs.

“I understand that now that I’m a caregiver,” she said.

Zaslow’s husband, Steve, 76, was diagnosed with Alzheimer’s in 2016. His symptoms first appeared when he began to get lost on trails he had paced so many times before. He was an avid climber and mountaineer that summited the Aconcagua in the Andes and knew his way around every local slope and trail.

It wasn’t until he got lost on his way to visit his brother that Helene realized something was wrong.

“My husband is way smarter than me, and he used every bit of his intellect to figure out how to not face what was going on with him,” she said. “And I didn’t know, I mean, I just thought he was being peculiar.”

Helene said that once he got lost and she began noticing that he was driving unsafely, he was amenable to getting diagnosed for certain.

“Now I’m guessing he had it for quite some time, and even as a nurse, I had no clue,” she said.

Howard said Marlene’s symptoms were progressive and he didn’t really catch on to it at first.

When she retired, she started taking care of her grandchildren. All of a sudden, Howard said she was often falling asleep and couldn’t remember what they were doing that day.

At first, he thought something was not quite right but assumed she was not getting enough sleep; or maybe having the kids run around all day was tiring her more than usual.

“And then I noticed that my bank account was really screwed up, because she liked to do the bills,” Howard said. “That’s when I knew something was really wrong, but it took quite a while to get a diagnosis.”

Howard and Helene both expressed their spouses’ diagnoses have been difficult for the people in their lives to grasp. They have either retreated or don’t fully understand the disease and how to care for the people affected.

“It’s hard for people to come over and visit,” Howard said. “Some people get it, some people don’t.”

“Being present is more important than anything, being present means you’re sitting and open to anything that the patient might want to express, even if it’s silence,” Helene said. “Sometimes people feel they have to fill every silent void, and then leave. But really just being present and patient with an Alzheimer’s patient, I think is the best way to be intimate with that person.”

Steve is now in a care facility. Helene said that it’s hard for the family to visit, as he does not recognize them. Sometimes she goes and he doesn’t recognize her.

“I just pretend that he does and tell him I love him and I am his wife, but it’s pretty tough for family and friends,” she said. “But when they come they talk about old times, because we just had adventure after adventure. So there’s a huge catalog of fun memories that people can sit and chat with him.”

Recently, Helene has had to limit visits because of the toll it has had on her.

“You know, before I go, I’m kind of sad. And then when I visit him, I embrace the moment with him and wherever he’s at, I’m there with him and really focused on holding his hand or hugging him and taking a walk with him,” she said.

But when she leaves, it tears a piece of her heart.

“It’s hard to think that you’re leaving your husband, that your husband’s not coming home with you.”

“Even though I kind of let that go when I’m visiting him, I’m just his wife, I’m just his lover and friend, and we just had such a great life together, it’s tough,” she said, sitting back in her chair looking around her living room.

Through the impacts of the disease, both caretakers still find space to relate to their loved ones, feel their presence and give them their undying love.

While Marlene doesn’t often speak anymore, she’s able to spend time with Howard and they reminisce over family photo albums and music, which brings her joy.

“That hasn’t gone away and she certainly remembers early parts of her life,” he said. “It’s just that she doesn’t remember what we did last night but as far as the rest, she’s very aware of all that.”

Howard said they’ve been trying to focus on everything positive. They cherish every moment and make the most of the present. Nothing much has changed between them, even restaurant outings.

“She still makes fun of people,” he joked. “I know that she’s still around, still reacting to the world around her.”

Howard finished his cup of coffee and got up as Marlene walked over to the table. They hugged. Smiling, they both stood there, looking into each other’s eyes.

Helene said that Steve doesn’t have much of a vocabulary or ability to vocalize his words, but she can tell by his face when he likes something or if a memory she mentions brings him joy.

By her coffee table, Helene recounted lobbying for the Arctic National Wildlife Refuge in Washington D.C. and knocking on doors in Florida for President Obama’s first campaign as one of the many adventures she shared with Steve.

“He gave me a lot of depth with what’s important in the world,” she said. “And so I owe a lot to my husband, as I describe myself.”

Not long ago, as she was going through some of their things, Helene found some of the cards he had sent her when he was working on fishing boats in Alaska.

“He’d write me letters that would just melt your heart,” she said, smiling. “I just can’t let go of those, they are the gems of our relationship and they’re of more value to me than anything.”