Let's hang on to what we've got

Don't let go, girl; we've got a lot

Got a lot of love between us

Hang on, hang on, hang on to what we got

Dooh doo, dooh doo, dooh doo ...

In the video posted on YouTube, that classic 1965 song by The Four Seasons plays while a woman giggles and sways to the music. Although the lyrics are significantly poignant, the woman doesn't sing along. She can't, because dementia has impaired her speech.

The woman is Elaine Morrison, and the guy behind the video camera is husband Terry. For almost a decade, they journeyed together through the obstacles posed by frontotemporal dementia disorder until Elaine died in March of this year.

This is their story.

Boy meets girl

Terry and Elaine met as students at Worthington Junior College. Terry had just been discharged from the U.S. Air Force. Elaine had come there from her hometown of Windom.

One of Terry's friends pointed out the pretty girl with the almost waist-long hair while a band was playing in the college Commons.

"'See that girl?' She kind of likes you,'" recounted Terry about how his friend goaded him into talking to her. "So I asked her to dance."

One of Terry's favorite pictures of Elaine was taken by a Daily Globe photographer during a peace rally they organized on the steps of the Nobles County Courthouse.

"We had kind of that hippie vibe," said Terry. "We lived together for two years, and then she got pregnant. My dad said, 'You've got to get married.'"

Finally heeding dad's proclamation, Terry and Elaine were married in 1971 and had three children: Lee Morrison, who now lives in Staples; Jada Morrison Walker, Westminster, Colo.; and Ryan Morrison, Sioux Falls, S.D.

Terry and Elaine were both employed in human services, beginning their careers as house parents of the McMillan Street group home for the disabled in 1976.

"We always worked as a team," said Terry. "Even at home, we always shared the housework, although we each had a few preferences."

Eventually, Elaine became the director of the Ridgewood group home for the disabled, and for the past 23 years Terry has been administrator/CEO of New Dawn, which also provides services for disabled individuals. Together, they coordinated Worthington's Community Thanksgiving Dinner for 22 years.

The onset

Changes in Elaine's speech patterns first signaled something was amiss.

"I would guess it was about 10 years (ago) that the disease began making itself known," Terry estimated, "although it was probably already happening before that. ... When the speech started, we realized something was wrong, and then her driving got to be odd. Jada has a story about when they were going somewhere together, and Elaine just let go of the wheel and bent down to get something."

Initially, Elaine was diagnosed with Alzheimer's disease, but Avera neurologist Dr. Carol Miles changed that after watching some video footage that Terry shot of Elaine's behaviors.

"She sat and looked at the whole video -- how many doctors take the time to do that? -- and then she wanted me to restart it," Terry recalled. "Miles wasn't buying the Alzheimer's anymore. She took Elaine and walked her up and down the hall."

The neurologist narrowed the diagnosis down to three possibilities, and further testing determined it was frontotemporal dementia.

"I looked it up, and it was dead-on, just so accurate," Terry said. "... It's a little bit rare and may strike women a little more than men. It's different than Alzheimer's -- all of the dementias are different, have different effects on the brain -- but people tend to lump them together."

One of the distinguishing characteristics of frontotemporal dementia is its effect on the person's language skills. According to information from the Mayo Clinic, "Frontotemporal dementia is an umbrella term for a diverse group of uncommon disorders that primarily affect the front and temporal lobes of the brain -- the areas generally associated with personality, behavior and language. ... Some people with frontotemporal dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally different, while others lose the ability to use and understand language."

Staying home

From the onset, Terry was determined to care for Elaine at home, no matter what the dementia brought.

"We tried a few of the early meds, but didn't see any effect," he said. "So we just said the hell with it -- no medication. It's not going to cure it, anyway.

"There are all these phases, and with each new phase, you have to think about it and prepare for it. I went through denial. I was not going to accept it for a while. I had to work my way through the denial of the changes. ... At first, Elaine would just watch TV. I would be gone to work, and Elaine would watch TV, but then the wandering started."

On one memorable day, Terry got a call from a local eye doctor's office, saying Elaine was there, brought there by an unknown woman because she had a bill from the doctor in her hand.

"She was our first angel," Terry credited the stranger. "You think of angels with wings and a halo, but this woman saw Elaine standing on the corner, and Elaine had this paper in her hand, this bill. Elaine would do that, had this thing with papers, and somehow she found this bill. So I asked (the receptionist) to put the woman on the phone, and after she explained what happened, I asked if she would take Elaine home."

While her husband was involved in a special work project, Jada and her children returned to Worthington and lived with her parents for a year, providing Terry with extra help and a sounding board for coping with Elaine's issues. They determined hiring a home care worker would be the best course of action. Initially, they hired two people from a large group of candidates, but it became apparent that one of the workers had a great rapport with Elaine.

"Brittany Mejia was our backup, working one day a week, and we asked if she'd take over," Terry related. "She became our angel No. 2. She was very interested in doing things with Elaine. ... Brittany just fell in love with Elaine. One day I asked her to come over so we could discuss something. Elaine was standing by the front window and saw her car pulling into the driveway. She turned around and had a big smile on her face and almost ran to the door. That was all the validation I needed."

While there were good days and bad days, caring for Elaine at home was much easier than it could have been as her dementia progressed.

"She made it easy in so many ways," Terry reflected. "I'm the one who set the goal for her to stay at home and not go into a treatment setting. She made it as easy as could be."

Maintaining a daily routine and keeping a daily journal of activities and behaviors helped Elaine and her caregivers cope with the dementia process. Terry would find things in which Elaine found delight -- a song on the radio to which she could dance, soap suds from the kitchen sink, a tiny Hot Wheels car that he would scoot across the countertop -- and many such moments were captured on YouTube videos, as well as one of the infrequent emotional outbursts.

Being his wife's chief caregiver posed some interesting situations for Terry, particularly when they ventured far from home.

"... I took her everywhere I went -- on trips to Colorado, doing things with the grandkids," Terry detailed. "After 2½ hours of driving, we'd pull into a rest stop, and I'd been helping this woman with virtually everything, but which bathroom do I take her in -- the men's or the women's? If I took her into the women's, I figured the women would get a bit upset about a man being in there, but I figured if I took her in the men's, the guys would probably look over and say, 'Whatever.' I would always peek in and make sure there weren't a bunch of guys standing at the urinals. ... It's funny the things that you get used to doing."

Terry's own work in the human services field helped him cope with some of the more hands-on aspects of Elaine's care.

"If I'd been an insurance salesman, it probably would have been more difficult," he said. "But I also tend to be patient and calm and have a way of tuning out in stressful situations. But it's one thing to have that background, and another to deal with the emotional part of it."

The decline

Eventually, Elaine began to eat less and less and was dramatically losing weight. Terry consulted a dietitian, who encouraged them to let Elaine eat whatever she wanted -- even a steady diet of fast food, if necessary.

"I'd say I'm now an expert smoothie maker," Terry said. "I'd make them with all kinds of different things, and she would drink those. Some days she'd eat well, some not. ... I went and looked deeper into frontotemporal disorder and found out it affects your swallowing reflex. She really got thin -- looked like the photos you see of people who were in Auschwitz, and I realized this is more than a phase. She would barely drink juice."

After consulting with medical professionals, Terry decided it was time to pursue hospice.

"Brittany did not want to hear the word hospice," Terry recalled. "She worked really hard to get her out of that phase. I emailed the kids and told them, 'In my opinion, your mom is dying' and encouraged them to do what they needed to do. ... When a person stops eating and drinking, you figure they've got three weeks, four weeks at most. So they came, and during that week, they helped me help her die."

Son Ryan moved the bed from upstairs to the main living area, and they filled the space with flowers, candles and new-age music. One day, she was able to sit on the couch for 20 minutes and watch one of her favorite TV programs, "The Andy Griffith Show," and the next she went into a coma.

"After a week of this struggle, I got a little (mad)," recounted Terry, adding that the kids had left the house at that point. "I would never call myself a religious man of intense faith -- I've always been faith-challenged, not that I don't have faith -- but my few earnest prayers have almost always been answered. So there I am, on my knees, asking God, 'Why does this struggle have to continue?' and 10 minutes later, she died."

After initiating the calling tree process that had been decided upon, Terry changed his wife's clothes, combed her hair, put pennies over her eyes to help them close and called the hospice worker who had to confirm the death. He also called the funeral home, but asked the director to hold off on removing the body.

"The kids arrived, and they each had some time with her, alone and together, and this is where I have an epiphany," Terry related. "We're going to get three chairs, a bottle of wine, and sit there and talk, and that's what we did for about seven hours. There was this big bouquet of flowers, and Jada took one flower at a time and arranged them over her mom's body. As she did that, Elaine's face just changed -- it softened, and she got a little smile."

The Morrisons also took an unorthodox approach to Elaine's funeral arrangements -- including being hands-on with the cremation process.

"(The funeral director) told me, 'If you want, you can put Elaine into the crematorium,'" Terry said. "I thought, 'What the heck? I've done everything else.' ... So I finished putting her into this thing. It was really clean and white. I just envisioned it like the grave. ... There was one last button to push, and I pushed it."

Instead of a funeral or memorial service, the Morrisons planned a celebration of life for Elaine, including readings by her children and grandchildren. Granddaughter Emma played "Amazing Grace" on the violin. For the lunch following, they served tuna and noodle casserole -- one of Elaine's favorite dishes to cook.

It's now been four months since Elaine's death, and Terry continues to deal with the grief process that began with her diagnosis.

"I used to say to people, 'Elaine isn't there anymore,' but later, after she died, I realized I was wrong," he reflected. "What was there, that's the real pure person, not the intellectual stuff. Parts of her personality had changed, but the raw, real person was still there. She made it easy for all of us, and I regret saying that. I didn't realize it wasn't true until later."

Daily Globe Features Editor Beth Rickers

can be reached at 376-7327.