By Annie Greenberg
This is a love story.
The ending is already written, thanks to a cruel twist of neurology. But after 28 years and several lifetimes’ worth of adventure together, Thomas and Lynn Shaw are still crafting their middle.
The beginning of their new beginning started the Wednesday before Thanksgiving 2016, when Lynn was diagnosed with young-onset Alzheimer’s. The diagnosis – though shocking – made sense to both of them.
“I was afraid…my God, I couldn’t function,” Lynn says. “Sometimes I’d look at myself in the mirror and ask: What happened to you?”
On the surface, Lynn looks as vibrant and healthy as ever, a far cry from what you picture when you think: Alzheimer’s. As Thomas describes their first meeting – him unable to keep his eyes off her as she saunters through a popular Navy bar, her then angrily confronting him to ask why he won’t stop staring – it’s easy to picture, even a few decades later.
Thomas, now a retired Navy captain, talks about the difficult road ahead in a calm and measured tone.
“I know where this disease goes. It’s not going to have a happy ending, but we have to try and make between now and then as happy as we can,” he says. “It might be a little different than we’re used to, but there are things we can hold on to.”
From shock, to action
After the diagnosis, Thomas and Lynn sprang into action. They were referred to Alzheimer’s San Diego by a hospital social worker, who recommended the young-onset support group. They joined that group in January, and after speaking with an Alzheimer’s San Diego social worker, immediately enrolled in Take Charge. Thomas says the 5-week Take Charge program was a game changer, educating them on what to expect as the disease progresses, and helping them prioritize immediate next steps.
“It was great since the diagnosis was so fresh,” Thomas explains. “I don’t know how anyone would navigate this on their own. The amount of resources can be overwhelming, so having someone to walk through the process with is very beneficial. No one has any experience dealing with this until it happens – you just don’t know.”
Since January, the Shaws have become regulars at Alzheimer’s San Diego, taking a legal planning workshop, several communications classes and coming in almost every Friday for social activities. They especially enjoy the Memories in the Makings painting classes, during which Thomas exclusively paints cats. (The juxtaposition between his tough military exterior and fluffy muses is nothing short of charming.) They’re also currently going through the process to find an ALZ Companion, a program that matches families with free in-home respite volunteers.
“That’s another thing we appreciate from Alzheimer’s San Diego…there’s the education piece, and the knowledge piece, but there’s also the social piece,” Thomas says. “We come to social events here, and we’re in a group of people who understand us and we understand them, and there’s nothing to be embarrassed about.”
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Thomas and Lynn don’t have family in San Diego, so they’ve strategically built a support system through friends, neighbors and Alzheimer’s San Diego resources. While that’s made things easier, that doesn’t mean it’s easy.
“I’m not painting a blissful picture here, because no one who goes through this disease is enjoying it,” Thomas says.
They’ve struggled to find the right balance between accepting Lynn’s limitations, and respecting what she’s still able to do. They openly talk about a recent fight they had over an open refrigerator door. Lynn says she wasn’t done getting what she needed; Thomas kept closing it, worried she’d forget.
They’ve found a positive compromise with tasks like the laundry. Lynn can get confused by the process of running the actual machine, so Thomas takes care of that. But she’ll still fold everything, and put away her own clothes.
“We’re trying to find the right balance of me trying to help Lynn, her accepting the help – but (figuring out) what’s the right level of help,” he explains. “That balance is constantly going to be a struggle, and it’s always going to be a moving target. The disease changes almost every day.”
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Those constant shifts aren’t limited to everyday tasks. Lynn says she’s noticed a major change in her personality since her diagnosis.
“I don’t know what it is…ever since I got sick, I’m very easy to get hurt. What is that? I’m not like that, I’m strong-willed,” she says, shaking her head. “When he’s home, I’m a nervous wreck because I don’t want him to get upset.”
Thomas nods as she says this, acknowledging their journey is far from perfect – which is tough for a perfectionist like himself.
“I feel, like most caregivers I’m sure, like I’m really messing this up all the time,” he admits. “I’m very sensitive that I get this wrong probably as much as I get it right, of how much my behavior directly impacts Lynn’s behavior.”
“I’m human…there are times I get really upset,” he adds. “I don’t like that, because then that snowballs… and it’s on me to stop that process, it’s not on Lynn.”
In an emotional moment, Lynn talks about the guilt she feels, even though she knows this disease isn’t her fault.
“I feel sorry for my husband…he’s the one taking care of the finances, of the house,” she says. “He’s very kind, very strong-willed, very smart. He’s a good man. That’s why I do not want to leave him. It’s up to him to leave me — it’s okay, because I’m not selfish.”
“I want him to be happy,” Lynn adds, before Thomas interjects.
“Yeah, I’m not going anywhere,” he says firmly. And with that, there’s no room for doubt.
