This Disease Stinks

“I’m getting high off a black Sharpie.”

So said Lindsay’s Facebook status update. She updated it on her BlackBerry as she sat cross-legged in her mom’s walk-in closet about 15 miles north of San Francisco. My wife, Lindsay, was helping (read: doing it all) her mom sort through her t-shirts, jeans, pajamas and dresses – a huge closet full of accumulated clothes – in preparation for her mom Deborah’s trip the next day to an assisted living facility.  She was writing her mom’s name on every item, much like she does in preparation for her daughter to go to summer camp.   I suppose “trip” isn’t the right word. It’s more like a journey.

Deborah, 63 years old, has suffered from Parkinson’s Disease and Lewy Body Dementia for the past 3 years, steadily but unpredictably progressing from slightly absentminded to more extreme moments of confusion.  A recent downward decline set things in motion for tomorrow’s move to the care facility just down the street from the home she has shared with her second husband, Steve, for the past 8 years.

Steve, a quiet, youthful looking man who everyone says resembles Richard Gere, is a successful CFO in the Bay Area. While Steve was travelling to the East Coast a few weeks ago for a business trip, Deborah went with one of her daily caregivers to get a haircut in nearby San Rafael. While walking through the town center, Deborah suddenly became confused and disoriented, failing to recognize her companion caregiver who she’s been with daily for more than 5 months.

“Who are you? I don’t know you! GET AWAY FROM ME!”

With a few quick shoves and uncharacteristic deftness and speed, Deborah turned and ran, evading the desperate pleas from her caregiver to stop, come back, and PLEASE realize who and where she is, all to no avail. About 10 minutes later Lindsay received a call on her mobile phone from the 

The Call No Caregiver Wants to Receive

“I can’t find your mom,” said the familiar voice on the other end of the line. After all, Lindsay helped interview and hire this caregiver, an immigrant from Fiji with years of experience caring for dementia patients. “I’m in the back of a police car and we’re searching for her. I’ll keep you posted.”

Lindsay hung up, her nerves causing her face to flush red, and dialed her sister Kara’s work phone number. Kara and her family live about an hour south of Deborah and Steve.  Kara’s proximity to her mom has allowed her to be very involved with Deborah’s care, and she knew first-hand that these “episodes,” as the family has resorted to naming them, can be scary and unpredictable. Past episodes have resulted in caregivers being locked out of the house or Deborah streaking down the steep hill outside her house and heading for who-knows-where.

“I’m on my way. I just need to run home and grab a few things,” said Kara.

While Kara fought traffic heading north through the city to San Francisco, she received a call from the police.

“We found her. She was wandering along the side of Highway 101.” 101 – only one of the busiest freeways in California. “She was upset and confused and refused to come with us,” the officer explained. “She was hitting the officer and we ultimately had to restrain her with handcuffs to get her in the cruiser. She’s a feisty one, your mom.”

Not Missing, But Not There Either

It’s guaranteed that was the first time anyone had used those words to describe Deborah. Feisty?

Who was this person? Was this the same person who worked as a business manager for Levi Strauss? The same woman who spent years as a high school math teacher in a Boston suburb? The same person who could perform complicated equations in her head and analyze multi-page financial spreadsheets for a multi-billion dollar company? An active member of her synagogue, interested in family, travelling, and putting together robust photo albums of her life, Deborah was now fighting with police while standing on a freeway as oncoming traffic bellows exhaust in her face and rumbles threateningly by.

It started with signs of poor coordination. “Why is it taking mom so long to come inside from the car?” Lindsay and Kara would wonder aloud to each other. It was almost a joke. Like how we’d be finished with lunch before Deborah would even come inside the restaurant. Soon after began Deborah’s inability to remember simple words, appearing as if she was losing her train of thought. Simultaneously, Deborah began occasionally reaching for things that weren’t there, hallucinating people and situations that didn’t exist, and waking at night screaming as she imagined people in her room that she didn’t realize weren’t actually there. On a trip earlier this year, Lindsay recounted to me stories of how she would find a box of crayons in the refrigerator; the dirty dishes unloaded from the dishwasher and put in all the wrong spots, or her mom suffering from some sort of make-up application disaster. To make things more incomprehensible, these acts and moments of absentmindedness and confusion were sprinkled through moments of absolute lucidity when Deborah would seem like her old self – aware, erudite and in full control. Perhaps that’s one of the most challenging aspects of Lewy Body Dementia – it’s not a straight downward progression. It’s more of a yo-yo effect, with ups and downs – times of lucidity beside moments of abject confusion. Unpredictable, teasing, and always difficult to comprehend.

After the Storm

Lindsay breathed a sigh of relief to learn her mom was at least safe and en route to an area hospital, but now needed to think about what to do next. Steve, somewhere in the air over the Midwest, was unreachable. Kara was en route but still an hour away, a slave to rush-hour traffic. Lindsay quickly thought of who she could call to get to her mom at the hospital and calm her down. Past episodes have concluded with Steve calmly talking Deborah back into reality. But with him away, could someone else play that role? Lindsay called a couple of Deborah and Steve’s friends from their temple and reached one who agreed to head to the hospital, thinking that a familiar face may help Deborah’s wild fantasy disappear into the recesses of her mind. By the time Kara finished her traffic battle and walked into the hospital, Deborah was fading into sleep, a result of the sedative doctors were forced to administer as Deborah continued to struggle and resist. But before she started to fade, she smiled at the familiar faces of her friends… Peace was restored, temporarily.

But that episode, the most severe to date, demanded that we, as Deborah’s family, answer some tough questions: Is Deborah well enough to live at home? Can her caretakers handle her while Steve is at work? Can Steve handle her care at night and on weekends while her caretakers are off? Is she safe in her own home? Kara’s stay with Deborah for the rest of that week while Steve finished his business trip revealed a new reality. Constant disorientation, remote controls in the toaster oven, metal containers in the microwaves, kitchen knives wielded at random, and dozens of other indications proved that Deborah simply wasn’t safe living at home. She needed constant supervision, a staff of professionals to ensure that she was fed, bathed and engaged in meaningful activities, and a place where she couldn’t simply turn and run out into danger.

The Only Thing Certain is Change

Lindsay flew out to California about a week later, observing for herself how drastically different Deborah was from the last time she visited, a mere three months earlier. After many conversations, deliberations, tears and second guessing, the family decided that Deborah simply wasn’t safe continuing to live at home. The preparations began for the move to her new home.

After a rough first week, full of tears and confusion combined with a clear understanding that she was no longer home, Deborah is settling in. She didn’t want to be there. She wanted to be home, able to enjoy her house and her pool and her neighborhood. But eventually she acquiesced, happy to enjoy frequent visits from nearby family and friends.

It is shocking to Lindsay and our family that Deborah is now living at a full time care facility. Even though we have come to know the horrors of the disease over the past few years, the chain of recent events happened so quickly. One moment she was doing ok, and then the next moment she was wandering alongside a busy freeway on the verge of doing battle with an oncoming car. Two weeks later and we moved her into a facility. Just like that.  There were no good options, but this seemed like the best one.  And like the permanent markers used to mark both her and her granddaughter’s clothes, it just plain stinks.