Sandy, left, with her wife Rachel. Photos courtesy of Robin Harris Images.

By Annie Greenberg

“At 7:09 AM, I got a phone call that saved my life.”

As she recalls this particular memory, Rachel Tothill, 46, is sitting in what she jokingly calls “The Crying Room” at Alzheimer’s San Diego. It’s a cozy space where social workers often meet with families navigating this life-changing diagnosis. But today, the room has seen more laughter than tears.

It’s been a good day for Rachel and her wife, Sandy Gonzales – a fact they’re both quick to acknowledge and appreciate. They’ve had their share of bad days over the last six years, as Sandy’s memory has declined. First, she struggled to keep up in her career as a licensed Marriage & Family Therapist. Then she started getting lost.

Two years ago, right after her 50th birthday, Sandy was officially diagnosed with Alzheimer’s.

“I was shocked…I was stunned,” Sandy, now 52, explains. “Part of it was because I was so young. The other part was, you never think it’s going to be you.”

Rachel is a nurse – caregiving is in her bones. She’s spent years helping other families in their most vulnerable moments. But the instant Sandy was diagnosed, there was a painful role-reversal.

The night Sandy was diagnosed, Rachel couldn’t sleep. So she sneaked out of bed, went online and searched for dementia support. Alzheimer’s San Diego was the first thing that popped up.

“I sat there, looking at the website, and I just cried and cried,” Rachel says. “I saw there was a form that said ‘Contact Us’. I filled it out…and literally, it was the hardest thing I’d ever done. Even as a nurse, I felt like I had completely lost all my power. I thought, This is too hard. This is too much.”

But then, the next day, her phone rang at 7:09 AM. “At first I wondered – Who the hell is calling me? I answered, and it was Sarina (an Alzheimer’s San Diego social worker). She asked me how I was, and what she could do. And it was the most amazing 10 seconds of my life,” Rachel explains. “She didn’t even say anything earth-shattering. She couldn’t say it’s going to be fine, because it’s not. But by saying, Hey, we’ve got this. Let’s help you. What an amazing message to give someone.”

Rachel and Sandy met with Sarina that same day. They’ve been active with Alzheimer’s San Diego ever since, attending classes, support and discussion groups and participating in our annual Alzheimer’s walk, Walk4ALZ.

Sandy is a regular at Friday social activities and outings, and especially loves when they involve painting and dancing. Her sister, Sherrie, has even started volunteering.

Because of her age, neon highlights and general rockstar aura, people usually assume Sandy is at Alzheimer’s San Diego with a parent or grandparent.

“It’s always fun to see their faces when I tell them I’m the one with Alzheimer’s,” she laughs.

While Sandy tries to keep her mind and body active, going for walks and doing word puzzles, she knows where this disease is headed.

“Sometimes it’s scary, because I don’t know when I’m going to decline more. Or how quickly, when that happens.”

She says she’s been hurt and frustrated by some of the reactions to her diagnosis.

“Some people, when they find out you have it, they’re pretty ignorant and don’t know how to treat you,” Sandy says. “They’ll talk to you like you’re a child. I had a friend who called and said ‘I heard you’re demented.’ And I hung up on him.”

“That’s Sandy for you,” Rachel says, laughing. “What I find so insulting is when people say to me: Oh…are you staying with her? Of course I am.”

“In a lot of ways, this has been a blessing in recognizing the value of what you have. I don’t wish this blessing upon anybody,” Rachel adds quickly. “But Sandy is gracious and loving, and it’s actually brought us closer together. It’s tightened our relationships with our core people, and with family. You have to have a reason for going through something like this. So for me, this is the reason.”

You can help people like Rachel and Sandy take control of a new diagnosis. Visit alzsd.org/donate or call 858.492.4400 to make a donation today.