Sixty-three year-old Brian Kamin will never forget the day he realized that his father Mel had Alzheimer’s disease.
It was 2010, and Brian’s mother Evie was in the hospital. So Brian went to check on Mel, who was a salesperson for a furniture and mattress company.
“I said, ‘OK Dad, let’s get ready for work,’” Brian recalls, and Mel — who normally dressed impeccably for the office — put on a grungy shirt and pants.
That’s when Brian realized that his mother had been dressing his father.
Suddenly, other things made sense. “He’d been telling us that he’d been getting lost coming home from work,” Brian says, by way of example. “And he was having issues using the computers [at his office] to punch in his sales.”
That morning, Brian called Mel’s supervisors to tell them that his father would not be coming in to work.
Then the family made arrangements for Mel to get tested for Alzheimer’s. Doctors confirmed the diagnosis a few weeks later.
Alzheimer's Association5.5 million Americans of all ages are currently living with Alzheimer’s disease. By 2050, the number of people ages 65 and older with Alzheimer’s may reach 13.8 million.
The Kamin family experience is surprisingly common. Every 66 seconds, someone in the U.S. develops Alzheimer’s disease – the most common form of dementia. Currently, five and a half million Americans are living with Alzheimer’s, including 92,000 Minnesotans.
In fact, Alzheimer’s is now the sixth leading cause of death among U.S. adults. Unfortunately, it’s also the only disease among the top 10 leading causes of death that can’t be prevented, cured, or slowed. And as the U.S. population ages, its impact is expected to increase exponentially.
Nonetheless, there are a number of supports available for people with Alzheimer’s and their caregivers.
Before Alzheimer’s disease, “my mom and dad were like a perfect circle,” Brian says. “My mom is sharp as a tack, has a memory that’s unbelievable ... But her body isn’t very good; she’s had physical ailments ... So she was kind of the mind of the outfit and he was the legs of the outfit.”
But as age and Alzheimer’s took their toll, this dynamic unraveled, and eventually Mel and Evie moved to an assisted living facility in St. Paul. But here, too, things floundered.
“It got to be where, even in assisted living, in a small place with basically a living room and a bedroom, that she would say you know, ‘go get this for me.’ And, when he went from this room to this room to get whatever it was, he’d already forgotten what it was,” Brian says. “And this ensued into arguments.”
Eventually, Brian and his family made the gut-wrenching decision to separate his parents. They placed Mel in a full-time memory care unit in Minneapolis. Evie remained in the assisted living facility in St. Paul.
disease by 2050
Now seven years after his diagnosis, Mel retains much of his long-term memory, often recounting his Korean War experiences. But his short-term memory is virtually non-existent.
“He can’t tell you what happened a minute ago,” Brian says. “If I was to visit him, and then go off to the parking lot to get something and come back in, he wouldn’t know that I’d just been there.”
In fact, Brian does not believe that Mel has made any new memories for five years.
“He went to my son’s wedding in San Francisco five years ago … But he doesn’t know that my son is married,” Brian says. “And we’ve got three grandkids and he doesn’t know who they are.”
These days, Mel has to be reminded to do basic tasks like brush his teeth and put on a new pair of clothes. And his physical health has begun to falter. “He’s starting to fall down because he doesn’t know how to use his walker; that’s a new memory,” Brian says.
Because of the risk of injury, it’s too dangerous for Brian to take Mel out of the memory care unit anymore.
Despite these challenges, Mel “is still the nicest, friendliest, happiest guy you’d ever meet,” Brian says. “In his case — being positive, everything is good, doesn’t complain — it’s not as bad, I think, for him. It’s worse for the family.”
The association has a free helpline (800-272-3900) that’s staffed 24 hours a day, 7 days per week, by professionals trained in dementia care. The helpline (which is available in 200+ languages) is an entryway to the nonprofit’s programs and services, but people can call for any reason, even if they’re just having a bad day.
The Alzheimer’s Association also offers free care consultations. The consultations are typically in-person sessions that last 60 to 90 minutes and allow families to delve more deeply into their case.
“[Care consultations] really give families a chance to sit and have all of their questions answered,” explains Olivia Tise, MSW, LGSW, a care consultant at the Alzheimer’s Association. “They learn more about the disease, learn more about what resources are available specifically unique to their case, and really, we put together a plan with some next steps.”
Tise says the needs of people she consults with vary. Some are newly diagnosed and want to learn about the basics of the disease. Others are seeking help with caregiver stress, such as strategies for communicating with someone living with Alzheimer’s. Some people desire respite services, like adult day programs or home care services, but don’t know how to access those services or how to evaluate providers. And Tise also sees people who are trying to make the difficult decision of whether to place a loved one in a memory care facility.
No matter what they discuss, “Our job is never to tell families what to do,” Tise says. “They’re the experts of their own lives. We just provide them with options so that they can make the best decision for themselves.” And, she stresses that it’s never too early to reach out, even if there isn’t an official diagnosis yet.
In addition to the 24/7 Helpline and care consultations, the Alzheimer’s Association also has volunteer opportunities, education classes, meet up groups, and more than 140 support groups across Minnesota and North Dakota.
Emotional support for caregivers is integral to all the services.
“The emotional support piece … is huge,” Tise says. “In my work I hear all the time that caregivers feel alone. So really the point of our helpline and care consultation services [and other services] is that you don’t have to be alone.”
These days, Brian calls and visits Evie regularly. And most Sundays, he takes her to visit Mel. “It’s nice to see them sit together and talk for an hour,” Brian says. “But it’s not a conversation of any substance.”
Still, Mel and Evie enjoy each other’s company. They often listen to music. And, although Mel doesn’t remember song lyrics, he likes to echo.
Brian, a wealth management consultant, also helps his parents manage their finances.
In addition to acting as a caregiver, Brian is trying to impact Alzheimer’s more broadly. Since May 2017, he’s been on the board of directors for the Alzheimer’s Association Minnesota-North Dakota Chapter. He’s focused on helping the association educate caregivers and fundraise money for research and development. “This will be an epidemic at some point, so we have to keep trying,” he says.
When asked what this experience has taught him, Brian says, “[Alzheimer’s] can happen to anyone at any time … It’s important as your parents age to pay attention to how they’re acting [and to seek care early] … Compassion is a big thing. It’s a way of life, and you have to have respect for people as they go through this, and to also have understanding for [the caregivers].”
Written by: Lori Imsdahl
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