Couple’s future in tearful turmoil after diagnosis of younger onset Alzheimer’s
02/23/2014 12:00 AM
02/22/2014 6:14 PM
First in an occasional series
Tracy Broshar knew that something was amiss by the fall of 2012. Her longtime partner, Jennifer Small, was only 49 then, but increasingly she was losing track of the details she used to be so good at handling.
Travel plans, for example. Jen loved to help map out their travels, researching what to see and do in the far-flung locales they enjoyed visiting. But when Tracy made reservations that spring for a trip to Kauai, Jen hadn’t seemed interested in making any of the arrangements, despite Tracy’s urging. Frustrated with her, Tracy planned their activities at the last minute as they flew to Hawaii.
“I thought it was menopause that was making her forgetful,” said Tracy, now 55. “I truly did.”
Together 15 years, Tracy Broshar and Jennifer Small, now 51, live in east Sacramento and own several rental properties together. It was Jen’s job every month to take the rental checks to the bank, but as 2012 progressed, she began to forget. At one point, she volunteered to paint the interior of one of the rentals, only to paint the same section of wall over and over.
“I thought she was was being passive aggressive,” said Tracy. “I’d say, ‘Just go, and let me do that.’ I’m truly grateful I didn’t scream and holler, but we got frustrated with each other a lot.”
Jen, who worked for the state, had no explanation for her behavior. She seemed surprised when Tracy pointed out her lapses.
“I just didn’t know anything was wrong,” she said. “It’s crazy. I thought everything was all right.”
At home one day that fall, Jen got upset trying to send an email. When Tracy looked over her shoulder at the computer, she saw that Jen was repeatedly typing the email address into the Google search function.
“Instantly, I knew something was drastically wrong,” Tracy said.
Jennifer’s co-workers had realized it by then, too. She agreed to see a doctor – but by the time the appointment came around, had forgotten why.
“She truly had no idea,” Tracy said.
And so they waited in the doctor’s office, hoping for the best outcome they could imagine – something survivable, something that surgery and rigorous treatment might cure: a brain tumor.
After Jen took a battery of tests, they sat together, stunned and silent, as the doctor told them that she had dementia. Although medications could slow its progress, there was no known fix for what had gone wrong with her. By the spring of 2013, a positron emission tomography scan of her brain verified the diagnosis: She has younger onset Alzheimer’s disease, which affects more than 250,000 Americans in their prime, before they reach age 65.
“I was numb that first day listening to the doctor,” said Tracy. “I’d turn away from Jen as the doctor spoke, so I could fight back tears. We went to IHOP afterward and sat there. One of us finally said, ‘I can’t grasp this.’ ”
Just more than a year later, Jen has lost touch with how she felt in those moments.
“I don’t remember,” she said.
One of the most unwelcome diseases of older age – Alzheimer’s – has intruded on the quiet domesticity of their middle years, bringing with it disbelief and sadness and shortening Jen’s life span by decades. The future they imagined, a happy retirement together, is gone. They don’t know how long this unexpected new journey will take, but they know that over time, the writing on the pages of Jen’s memory will disappear, wiped clean as her short- and then long-term recall fade.
Like all people with Alzheimer’s, she’ll slowly forget the people she has loved, the life she has led and everything that has mattered to her, eventually losing the ability to respond to the world around her. Alzheimer’s patients live an average of eight years after diagnosis. It is the nation’s sixth-leading cause of death.
In the face of their looming fears, this couple decided to embrace life and love. On Oct. 12, in front of 100 friends and relatives gathered in their small backyard, Jennifer Small and Tracy Broshar were married.
“Jen always wanted a wedding in the backyard, but I didn’t feel the need,” said Tracy. “When all this happened, I felt that getting married was my last way to tell Jen I’m committed to the relationship. I’m not going away, no matter what transpires.
“I said in the vows, ‘I’m here. I’m here. I’m here for the long haul. I will protect you.’ ”
Only about 5 percent of the nation’s Alzheimer’s cases occur in people who haven’t yet reached their mid-60s. That proportion has remained steady through the decades, but the huge age wave of the baby boom has ramped up the raw numbers behind the data.
“Many of us in this field are really noticing that the numbers of younger people with Alzheimer’s disease are ballooning,” said Elizabeth Edgerly, Alzheimer’s Association of Northern California chief program officer. “I’ve met so many more 50-year-olds than ever before with Alzheimer’s. It’s the baby boomer push. There are just more people now in that age group.
“And people are seeking help earlier. There’s more awareness now.”
Maybe that’s because behavior that can be dismissed at age 75 as forgetfulness or eccentricity – just another symptom of old age – seems outlandishly out of character at 50. Although some younger onset cases are genetic in origin, most early onset Alzheimer’s diagnoses, like Jennifer Small’s, have no known cause.
What researchers know for sure is that all cases of Alzheimer’s involve the death of brain cells, which are choked by abnormal tangles and plaques of protein. People with high blood pressure, circulation problems and diabetes are considered at higher risk of developing the disease, as are people with a family history of Alzheimer’s.
But science can’t yet pinpoint why some people with those risk factors get dementia and some don’t. And science can’t explain why Jennifer Small began losing her memory in her late 40s, decades earlier than most people with Alzheimer’s. Worst of all, science has so far found no cure.
‘Meant to be’
On a sunny winter afternoon, Tracy Broshar and Jennifer Small sat together in their cozy home, with Lucy the affectionate chihuahua snuggled in Jen’s arms and Abigail the watchful border collie barking energetically at any activity she observed outside. Somewhere in the house, their three cats were curled up, napping.
The two women met through mutual friends at a New Year’s Eve party as 1998 ticked down into 1999. Both lived in the Bay Area then. Tracy, the youngest of four children raised in Sacramento’s Curtis Park neighborhood, was a former prison guard who was working in the computer industry. Jen, an only child with a network of lifelong friends back home in Sacramento, worked in San Francisco as a supervisor with the state.
“We hit it off,” said Tracy.
“It was scary it was so easy,” said Jen. “It was meant to be.”
That Valentine’s Day, Tracy gave Jen an engagement ring as a symbol of their commitment. Marriage wasn’t possible then or for years to come, but they didn’t focus on having a ceremony. Instead, they registered with the state as domestic partners in the early 2000s, and they pieced together a patchwork of legal records – health directives and estate planning papers – to document their relationship. They bought property together. They named each other the beneficiary on their insurance and pensions.
“We learned a long time ago to take care of these things,” said Tracy.
“I tell my friends, you have to have things in place,” said Jen. “You have to have it, because somebody else can come and decide things for you.”
Tracy, now a personal trainer, was intense and focused, a self-described workaholic. And Jen was easygoing and chatty, the partner who liked to socialize and travel.
They moved home to Sacramento and found a way to blend their interests – Jen’s love of soap operas and cats and spending time with friends; Tracy’s devotion to her dogs and her grandmother and her affinity for fixing whatever is broken – as they invested in properties and made a cozy life together.
“We are as different as night and day,” said Tracy, “but with our personal values, they’re identical.”
Both understand the importance of taking care of the people who matter in their lives. In retrospect, the past 10 years have been for them a decade of caregiving and loss.
It began with Jen’s parents. Her mother, Jackie Small, had a stroke when Jen was 11, leaving her in frail health for the rest of her life. Jen and Tracy helped take care of her, visiting her frequently in the nursing home where she moved after being injured in a fall. She died there in 2002.
After suffering ill health for several years, Jen’s father, Chuck, died in 2004 with Jen and Tracy by his side. Two years later, Tracy’s widowed mother, Neva Broshar, died of lung cancer. And in 2009 came the death of Maxine Covey – the grandmother who helped raise Tracy – who died of Alzheimer’s disease at age 86.
In many ways, Tracy knows what she’s facing now, because she tended to her grandmother as Maxine slowly faded away over six years’ time.
“By the end, she only knew me,” said Tracy. “I don’t know if she still knew my name, but she was comfortable with me. She’d pout, and then she’d forget she was upset with me.”
At the time, Tracy and Jen lived next door to Maxine in south Sacramento so they could care for her. They shopped for her and cooked for her. They folded her into their daily lives. But they were caregivers who were in the midst of their own careers, not able to watch Maxine every moment. Maxine fell and broke her hip and was unable to call for help. It broke Tracy’s heart that she couldn’t protect her grandmother.
Those weren’t easy years, but there were also moments of joy. One day Tracy watched Maxine playing dolls with her great-granddaughter. Maxine Covey had grown up in Oklahoma during the Depression, married at age 12 and had her first child at 14. In an odd way, Alzheimer’s gave her the chance to have a childhood.
“My grandmother taught me lessons in what we’re going through now,” said Tracy. “It’s a long road. At some point, the new memories aren’t there. It was challenging, but it was also an honor.”
Letting go of tomorrow
Tracy and Jen came home from the doctor’s office that day in late 2012, and they cried.
Christmas and New Year’s passed in a haze. They put up holiday decorations, because that’s what they usually do, and they tried to celebrate. But the days felt hollow.
Jennifer can’t articulate in much detail how hard that time was: When dementia causes neurological pathways to begin evaporating, the paths that remain lead again and again to the same tried-and-true destination. In Jen’s case, she describes that time with the same repeated phrases:
“I cried my eyes out for a day and a half,” she said. “It tore me up.”
Tracy remembers being overwhelmed and not knowing where to turn. She was battling denial and disbelief, and for a time couldn’t even discuss the diagnosis with those closest to her. Uncharacteristically, she missed work. Always so energetic, so practical, she was swamped by depression. She slept a lot.
“Jen’s diagnosis encompassed my every moment alive,” she said.
Sometimes, even now, it’s too much for her to contemplate: Their lives, so close for so long, will begin to separate, not by choice but because of Alzheimer’s. Over time, Tracy will bear the burden not just of caring for Jen but for remembering their past together – and remembering who Jen once was, long before Alzheimer’s changed her. She’ll live with the pain of what they have lost. Jen won’t remember.
Through the numbness, the early days of 2013 flowed in slow motion. A month passed, and several more. And then came April 15 and the terrorist bombings at the Boston Marathon. Sitting transfixed in front of their big-screen TV, the two women watched the coverage, horrified by the sudden loss of life and limb, shocked at how quickly lives were destroyed. As they watched, they gained perspective.
“We watched the coverage, and we cried,” said Tracy. “And we thought, ‘At least, we have today.’ They’re gone. Their lives are changed.
“We cried so hard over that. We cried and watched. People lost children. But we have today.”
And they realized what hundreds of thousands of families touched by Alzheimer’s have realized before them: Today is as good as it gets. Tomorrow will likely be tougher.
So Tracy began putting into place the pieces of their new life together. She marched into the local Social Security office armed with a spreadsheet of Jennifer’s medical results, as well as a copy of her PET scan, and within two weeks, Jen was awarded SSI disability payments. She contacted the state to help Jennifer apply for early retirement, which she received; and a full disability retirement, which is pending. CalPERS requires a conservatorship when a medical condition affects an employee’s ability to make decisions on her own behalf. So Tracy has launched into that process, as well.
Last summer, in the months after the U.S. Supreme Court rejected a Proposition 8 appeal and same-sex marriages resumed in California, Tracy recognized one more thing she needed to do for Jen. They needed to get married.
“I knew I had to make it happen,” Tracy said.
‘With all of my heart’
It was a warm Saturday morning in October. They both wore black slacks they found on sale at Macy’s. Tracy wore a green leather jacket; Jen wore a flowing, spangly blue top. There were flowers in the backyard they bought at Trader Joe’s the day before.
Tracy’s best friend, Atchan Van Pelt, stood by her as her “best person”; Jen’s closest friend, Evangeline Shkidt, stood up for her.
“I was with Jen the day before the wedding, too, running errands and things,” said Evangeline. “I noticed she was always looking for Tracy, wanting Tracy there close by. She couldn’t make up her mind without Tracy. She was never, ever, ever like that before. Sometimes, she looked at me like she didn’t know me.”
The DJ played Shania Twain’s “From This Moment On” – and at the words “I give my hand to you with all of my heart,” Tracy reached out her hand, and she and Jen walked down the aisle together.
“You could see the devotion in Tracy’s eyes, how much she cares about Jen,” Evangeline said. “The focus was they were going to be together. That’s what it meant to them. It was a celebration of them being together and their bond and love.
The guests enjoyed the day. More important to Tracy, so did Jennifer.
“It was a great wedding,” Jen said.
In the months since the wedding, Tracy has noticed that Jen seems to be having more trouble with her memory. It worries her how fast it is changing.
“She has a harder time finding words now,” said Tracy. “I don’t want her to realize she can’t do something.”
But it happens. When they were putting up their 2013 Christmas decorations, Jen promised to set up part of the display the way she always had: putting the holiday banner on the wrought iron lawn flag stand. Jen had attached seasonal banners before, but now couldn’t remember how.
“She came into the bedroom and closed the door and crawled under the covers and cried,” Tracy said. “She said, ‘I hate my life.’ ”
There are occasional triumphs, too. Jen voluntarily gave up her driver’s license last June. But in good weather, she was in the habit of walking Lucy from their house to the supermarket every afternoon to pick up the ingredients for dinner. The other day, after a gap of several months, she did it again.
“And she had no problem doing it,” said Tracy. “I was very proud she went to the store.”
“I still know how to get there,” said Jen.
On a recent morning, Tracy woke early to train clients for a local fitness center chain. Jen made her coffee and assembled her gym bag the way Tracy likes, with the phone in one pocket and an energy bar in another. Jen surfed the Internet for a few hours, and when Tracy returned home, they got back in their pajamas to spend the rest of the morning together.
Tracy chopped onion, potato and sausage, threw everything in a big skillet and took it outside to the grill, where she scrambled the mixture together with eggs. Jen made the coffee and set two trays with silverware and plates. And they hopped back in bed for their brunch, with the dogs waiting patiently for the leftovers.
“We love this time,” said Jen. “We absolutely love this time.”
Within the coziness of their daily routine, they live with both sides of the Alzheimer’s equation, the dichotomy that patients and their families struggle to keep in balance: the sweetness of their days together, the nagging concerns over what’s to come.
“It terrifies me,” said Tracy. “I don’t want to be alone. Jen has been my soul mate.
“One of my biggest fears – we said we’d be very open here – is that I’m a recovering alcoholic. Jennifer keeps me sober. What happens when she’s gone? Will I be strong enough not to take that drink then? I don’t know.”
She began weeping softly, and so did the love of her life. They held hands, crying.
“I don’t know what I’d do without Tracy,” Jen said. “I know she’s strong enough to carry on without me. You always do. You will.
“Besides, I don’t plan on going anywhere soon.”
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