Finding Love Again After Alzheimer's Takes a Spouse

J

on Lucas sits down on a shaded bench and pulls a Ziploc bag out of his pocket. “I generally bring some treats. She likes M&Ms still,” he says. Jon is tall with an athletic frame that suggests he keeps pretty active. The M&Ms are for his wife, Sharon, who sits next to him. Sharon wears a black cardigan and slacks with sneakers. Her shoulders are slouched, and her expression is mostly blank.

“Sharon, do you want a candy? Look what I brought you,” he tells her, offering his hand. Sharon runs her fingers searchingly over his palm, like she’s reading braille and the M&Ms are the raised letters.

Sharon isn’t blind. In her mid-60s, like Jon, she’s been living for almost a decade with Alzheimer’s disease. Six years ago, Jon decided he could no longer be her sole caregiver, and he placed her in the facility where we’re sitting. It’s in Los Gatos, in Silicon Valley, about a half-hour from Fremont, where he lives.

According to the Alzheimer’s Association, Jon is one of more than 1.6 million Californians caring for a loved one with Alzheimer’s disease. A report published earlier this year by the California Department of Health says more people in our state die from Alzheimer’s than anything else, except heart disease. Much of the care Alzheimer’s patients need is considered custodial, so it’s not covered by most insurance — and funding for patients like Sharon with early-onset Alzheimer’s is even more limited.

By 2030, California’s senior population is projected to grow by 4 million people, and lawmakers are recognizing the urgency of preparing for this shift. In June, Gov. Gavin Newsom signed an executive order to create a Master Plan for Aging and, within that, a Task Force on Alzheimer’s Prevention and Preparedness, helmed by former California first lady Maria Shriver.

High School Sweethearts

Jon tries to visit Sharon a few times a week. He doesn’t bring it up in our interview, but it’s easy to see how he could feel conflicted about whether the benefits she receives from his being there outweigh the emotional strain the visits clearly inflict on him.

By the time she was diagnosed almost 10 years ago, he says, her memory had diminished so much that she couldn’t comprehend her illness. Now, on top of the memory loss, she’s no longer verbal — she stopped talking about a year and a half ago, he says.

Jon and Sharon have been together since she asked him to a Sadie Hawkins dance when she was 16. “She was young and beautiful with long copper-red hair. Very funny person, very lively. She continued with that personality all throughout her life until the disease hit her,” Jon says.

Sharon never had a great sense of direction, but in her mid-50s she started struggling more noticeably with finding her way to places, and becoming more forgetful. Eventually, one of their two daughters insisted he take her in for cognitive tests. “Sharon failed … miserably. And watching that was one of the hardest moments ever,” Jon remembers.

Looking back, Jon says he realizes Sharon was conscious of the shift she was experiencing. When he moved her from their home to her facility, he found stacks of Post-it notes she’d written to remind herself how to do simple tasks on the computer, and self-help books with tabs on the pages about memory improvement.

In less than a year from those first cognitive tests, Sharon was diagnosed with early-onset Alzheimer’s. Initially, Jon and his daughters, who were out of the house at that point, decided not to tell Sharon about the diagnosis, because they thought she wouldn’t be able to grasp what it meant and, on the off-chance that she would, it would just be upsetting.

“After about … two or three months of that, … it was gut-wrenching to us to try to keep it a secret and it didn’t seem fair to her,” Jon recalls.  “My daughters came home and we sat her down on the couch and … we had that discussion with her. That she had Alzheimer’s disease and it was a fatal disease and she had about eight or 10 years on average to live. We all had a big cry. Five minutes later, sure enough, she had forgotten it. And we moved on. But we felt better that we’d had the conversation, at least,” Jon said.

Life as a Full-Time Caregiver

Two weeks after Sharon’s diagnosis, Jon left his senior role at an electronics company and became her full-time caregiver. It was a trying few years as he took on round-the-clock duties on top of all the household tasks they used to shoulder together. Sharon’s disease progressed to the extent that Jon was able to sleep only if she was in the small area of the house he’d cordoned off where she could wander safely.

Their circle of friends dwindled. Jon started to recognize signs of depression in himself, and members of his Alzheimer’s support group encouraged him to find a care facility for Sharon.

A recent study shows that 18% of Alzheimer’s and dementia caregivers die before those receiving their care, and the toll that this process can take is a big focus of groups like the Alzheimer’s Association. Jon knew that his own health was in jeopardy, and he ultimately decided to move Sharon to Cedar Creek, the facility where she lives today, and where we’ve met to talk.

“It was the hardest decision I’ve ever made. And it was the most amazing feeling coming out of here. All the emotions that hit: Freedom. Guilt. Sadness. Joy. All of it coming down all at once. I just sat out in that parking lot for about 15 minutes and cried. And then I went home and started living my life again,” Jon says, his voice breaking.

Finding a New Path through Advocacy

With Sharon at Cedar Creek, Jon suddenly felt retired for the first time since he left his job. After a short spell enjoying his new flexibility and easing back into a regular social life, he realized he wanted to channel his experience with Alzheimer’s into productive use, and he decided to become an advocate for the Alzheimer’s Association.

At his first advocacy forum in Washington, D.C., he met Patt Martin. Patt’s husband, Bill, had succumbed to a form of dementia called primary progressive aphasia (PPA) after being diagnosed in his early 50s.

Soon after Jon placed Sharon at the care facility, Sharon’s mother gave him her blessing to date again. He was hesitant at first, and not sure how to ease back in when dating sites didn’t feel like the right fit for him. Patt had felt the same way. So it was a pleasant surprise to both of them when they each sensed a spark at the forum. When they both got back to California, they set up a coffee date through Facebook.

“We spent three hours talking to each other,” Jon recalls. “The crowd faded away. We forgot we were even sitting in a coffee house … it was a magical three hours. And then after that we just started dating more and we fell in love. And that’s been three years now.”

A Foot in Two Worlds

Jon and Patt’s shared experiences as caregivers have bonded them from the start. They have both weathered seeing their spouses become strangers to them. Since Patt’s experience caring for her husband is behind her, she feels uniquely attuned to what Jon is going through, both in the day-to-day, and as he anticipates Sharon’s passing.

“Jon is still in the midst of the journey with Sharon, and I understand that that journey is very difficult. I mean, he has a foot in two different worlds right now, and I can be somebody that he can … say anything to … I will understand it, wherever his feelings are,” Patt says.

In addition to the shared emotional strain, Jon and Patt have also both spent considerable chunks of savings on their spouses’ care — in Jon’s case, $550,000 just in the last six years.

By the time Patt’s husband Bill passed away, they had paid more  than $300,000 out of pocket for his care. “We were lucky we had the money to be able to do that,” she says. “Many people don’t have those kind of means. And I was totally unaware — I had no idea … that there wasn’t any kind of support for this.”

Jon and Patt have moved in together now, partly out of necessity for Jon because, in addition to dipping into his retirement and starting to take Social Security early to help pay for Sharon’s facility, he has  moved out of the house they shared so he can have rental income to contribute to those costs.

Because much of the care for those with dementia-related illnesses is custodial — meaning just guiding the person through personal hygiene, meals and the other ins and outs of their day — most insurance won’t cover it. For people like Jon and Patt with too much cash in the bank to qualify for long-term coverage through Medi-Cal, long-term care insurance can be an option. But it’s often expensive, and the Alzheimer’s Association and an insurance agent confirmed that once a patient is diagnosed with Alzheimer’s, they are no longer eligible to apply.

The requirements for long-term care coverage through a need-based program like Medi-Cal are complicated.  Assets, like a primary home and car, and certain kinds of trust accounts, don’t count against a family’s or an individual’s eligibility. However, each individual may have no more than $2,000 in what are termed “countable assets” to qualify. Countable assets include bank accounts, unapproved trust accounts and secondary vehicles.

Bucket Lists and Family Celebrations

With the untraditional relationship dynamics they’re balancing, Jon and Patt say they’re lucky that their children — they both have two daughters — have accepted the other into their family.

“I was so excited about meeting [Patt] that … I wanted to get on the top of the mountain and scream it out to the world, so I was really happy to tell the kids that I had met someone. I had some reservation about how they were gonna take it,” Jon says. The families have found a balance, but Jon says he’s had friends in similar positions whose children have been much more resistant to their new partners.

By their second date, Jon and Patt were comparing bucket lists, and now they’re ticking them off together. “We talk about the fact that we really are living life for four people because Bill and Sharon, they got robbed,” Patt says.

Sharon entered hospice in August. When the time comes, Jon says, he wants her memorial to feel uplifting for those who love her. “People have gone through this loss and grief process for so long with Sharon that I think it’s going to be a big relief to everyone once … she’s not suffering anymore,” he says.

Someday, Jon and Patt hope to marry, but Patt is conscientious about the way that she and Jon comport themselves as a couple to ensure they are respectful to Sharon. In the meantime, they’ll continue to advocate in Congress, where they’ve met with lawmakers, including congressman Ro Khanna, on behalf of the Alzheimer’s Association.

Right now, the two are focused on more funding for Alzheimer’s research, stronger infrastructures for early detection, and more support for caregivers — especially caregivers of loved ones with early-onset Alzheimer’s. In October, they’ll be side-by-side at the Silicon Valley Walk to End Alzheimer’s.