May 25, 2014 6 min read

If Jay Briggs has one regret, it’s that he never recorded his wife’s voice.

“I can’t remember Sandy’s voice. I should have taped her,” Jay said during one of the few times he was unable to hide the sadness in his eyes – or his voice – as he flipped through family photographs at the kitchen table of his Washington home.

“Memories. That’s the main thing,” he said.

Sandy Briggs died less than three months ago – on March 2 – of frontotemporal dementia, a disorder that left her mute for the last three years of her life. She was 57.

And it was Jay who willingly shouldered the burden of her care, ever since Sandy was diagnosed 10 years ago. Despite the sleepless nights, the couple’s inability to communicate and Sandy’s challenging behavioral outbursts, Jay would do it all over again.

“It’s a lot of work,” he said. “A lot of caretakers don’t know what they’re getting into. Some people are not cut out to do it. You lose your patience.”

On those occasions in the Briggs’ household, the self-described easygoing guy would just walk outside and take a few deep breaths to settle his nerves.

Jay, 56, has plenty of experience as a caregiver. He was a nursing assistant at Washington Hospital before joining its maintenance department, and he began caring for his mother, Shirley, when she was diagnosed with Alzheimer’s disease – not long before Sandy was diagnosed with FTD.

Until his mother moved to a nursing home, Jay cared for both Shirley, now 80, and his wife, taking them with him wherever he went.

“If there was a way to bring my mother home, too, I’d bring her home,” Jay said.

But he can’t. He continues to visit her once a week, even though she doesn’t remember her only child.

“I’m just the person who brings cookies and something to drink,” said Jay, who also helped care for his father-in-law and grandfather.

Jay and Sandy were neighbors as youngsters, started dating in junior high school and married soon after they graduated from Trinity High School. The couple would have celebrated their 40th wedding anniversary on Oct. 19.

The news of Sandy’s disease was “devastating” for Jay, and as the FTD progressed, Sandy became easily agitated and boorish.

Before long, she began to wander, and, boy, was she fast.

“She’d be sitting in a chair one minute, and then she’d be gone,” Jay said. Once, a friend found her walking along the interstate.

Since Jay could not afford to quit his job, he hired a caretaker to tend to his wife while he was at work. The caretaker also was available if Jay had to work overtime, and Jay tried to schedule his own doctors’ appointments immediately after his shift ended.

“I had to make sure she was safe,” he said.

But even the caretaker “lost” Sandy when he took her to Giant Eagle at Strabane Square to cash a check. He called Jay at work, apologetic and frantic. Jay made a few phone calls, but nobody had seen her. So, he got in his truck and started driving. He found her walking along Route 19 at Locust Avenue. She told him she was coming to see him at work.

Jay did all the cooking, cleaning, bill-paying and grocery shopping. He also quickly became the keeper of the calendar, writing down the anniversaries and the birthdays of his two sons and five grandchildren. Sandy previously had taken care of that.

Eventually, Jay had to give Sandy a shower, diaper her and feed her.

“Talking to her was like talking to a wall,” he said. “I would be feeding her, and if I turned my back, she’d take her glass of water and pour it on the floor. I’d say, ‘Aw, Sandy, what are you doing that for?’ It was part of life.”

Jay also learned to improvise, for his sake as well as Sandy’s.

Twice, when Sandy could still speak, Jay had to have surgery to repair a hernia and a torn meniscus in his knee. Both were outpatient surgeries, so he pulled double-duty at home, trying to heal himself while caring for his wife. He remembers using his crutches while Sandy held on to his belt for support as they moved from room to room.

When Jay could no longer lift Sandy from her wheelchair to wash her hair in the sink, he sat in the wheelchair, trying to figure out how to best maneuver in the bathroom.

One of the hardest adjustments, though, was watching Sandy just stare at him. “You wondered what she was thinking,” Jay said.

He often wondered if she was in pain, and when he took her to her doctors’ appointments, he would always ask. They couldn’t tell.

Last June, Jay enlisted the help of hospice, and in late February, a hospital bed was set up in the couple’s living room. It is where Sandy died one week later.

At Sandy’s funeral, Jay got to see his grandkids, Alex and Marissa, for the first time in five years. They live in Texas, and Sandy’s illness prevented the couple from traveling.

And there’s something else Jay has been able to do since Sandy’s death.

“I’m catching up on my sleep,” he said.