Sending out forget-me-nots
Residents and staff at the Frazee Care Center and Emmanuel Nursing Home in Detroit Lakes will be getting a special treat on Wednesday, May 18, in the form of a concert by Ely performance duo Pat and Donna Surface.
Pat is a singer-songwriter who has toured extensively with his band, the Boundary Water Boys, and on his own, performing at schools, colleges, churches and festivals throughout North America.
His wife Donna is a performance artist who combines American Sign Language with dance and mime, allowing audiences to "see the music" when Pat performs.
Their appearance in Detroit Lakes will mark the launch of a three-day tour of area nursing homes and assisted living facilities that they have dubbed the "Minnesota Memory Care Tour."
The name stems from the Surfaces' work to raise awareness and funds for Alzheimer's disease research and treatment -- a cause that is very dear to Donna's heart, as she lost her father to the disease in 2004.
But as she tells the story, the man she knew as "Daddy" had left them long before he finally succumbed to the effects of Alzheimer's.
"My dad had the disease for eight years," she said. "It was such a disturbing and tragic journey -- as it is with any debilitating illness.
"There are many stages... the first one being denial."
But it wasn't just her father who didn't want to admit there was anything wrong, Donna admitted.
"You see that there is something wrong with the person you love, but at first you want to write it off, that they're hard of hearing, it's just age...
"How many of our seniors are there who, well into their 90s still have brilliant faculties -- their bodies may be diminishing, but their minds don't.
"It's not a normal aging process for someone in their late 70s to start having personality changes, memory lapses.
"Early on, when Daddy was starting to change, we were all in denial -- this can't be happening. And then comes the diagnosis, and you're devastated."
Some of the changes were gradual, and some were much more dramatic. In the final, "catastrophic" stage, Donna said, her father underwent a "complete 180" from his normal, sunny personality, and became prone to dark rages that eventually exploded into physical violence.
"He was an amazing, joy-filled man... an athlete, a war hero, a musician, a bright light," she sid. "He never raised his voice -- the person he became with this disease was 180 degrees from my dad.
"Sometimes the transitioning is subtle, and sometimes it's like falling off a ledge -- so dramatic," Donna said.
"...He would turn around and be somebody completely different, with a completely different face."
Donna likened the transformation to a movie scene depicting someone who is possessed, "like Linda Blair in 'The Exorcist.'"
When he became violent, Donna was genuinely afraid for her mother's life -- both because she feared he might physically harm her, and because her mother had a bad heart, and the stress could kill her.
"I couldn't allow that," Donna said -- and so she had to make the decision to move him into a specialized care facility, because she knew her mother never would.
"My mom would have died taking care of him," she said.
Once her father had reached the final stages of the disease, where his wife could no longer care for him, it was difficult to find a facility that would take him, Donna noted.
First of all, she discovered that it wasn't just a matter of calling 911 and having the ambulance come to take him to a care facility.
"It's a police action," she said. "The police come and take your father to the psych ward at the VA Hospital."
Though that wasn't where he ended up staying for the remainder of his illness, it was the first stage of the final chapter.
"He never went home again," Donna said.
In the eight years that passed from diagnosis until the end of his life, Donna said, she and her family learned a lot about the process -- and she became determined to find a way to help others going through a similar ordeal.
She and Pat formed the Spiritwood "Forget Me Not" Foundation, a non-profit organization committed to "fighting Alzheimer's disease through the arts," as its mission statement says.
"There are many ways in which we do that," Donna said. "One way is by going into these facilities and performing for the people, bringing them some joy and fun and laughter, and even memories.
"Music is the last thing that is lost to this disease," she explained.
"Even people who seem to be in a completely catatonic state can be revived through music. It's the most astonishing thing to witness."
In addition to performing, the Surfaces' Spiritwood Foundation also supports caregivers and caregiver foundations, as well as organizing fundraisers and other events to raise awareness.
It is this organization, along with Dacotah Paper Company in Fargo, that will be co-sponsoring the Memory Care Tour.
The Surfaces will perform twice in the area on May 18, at 2:30 p.m. in the Frazee Care Center, and at 7 p.m. in Emmanuel Nursing Home. Both performances are free and open to the public.
For more information, please visit the foundation's website at SpiritwoodFoundation.org.