Even though he set out from the U.S./Mexican border in a northerly direction and will complete trek when he hits Canada, Scott Siegrist, is still crossing the country. And he’s doing it on foot. While juggling. It’s a labor of love to raise awareness of dementia, the disease that claimed his mother’s life last year.
“Just before she died, I was planning on coming over to take care of her, as I did for a couple of weeks every year,” says Siegrist, a California native who now makes his home in Switzerland. “[…] So the idea of doing something [pertinent] during the time I would have been taking care of her germinated. So I thought, ‘What can I do?’ Well, I juggle. And I’ve had the idea of going on a longer walk or walkabout for a while. So I kind of put those two things together and thought, ‘Okay, juggling across America.'”
Siegrist first came to take care of his mother after a 2006 car accident in which his father perished. He stayed for a year, with his siblings nursing his mother and helping run the bed & breakfast she had founded with her late husband, and during that time he watched her dementia—a condition he realized had taken hold of her even before the accident, despite the fact that she was not yet 60.
Ironically, the advancement of her dementia was not all bad news.
“After the accident, her character changed in a manner that made her more thankful, and she lived more in the present, not dealing with planning,” Siegrist says. “She was just happy to be, happy to enjoy life. […] She was easier to be around, in a way.”
By no means does Siegrist minimize the terribleness of dementia—the most common and well-known form of which is Alzheimer’s disease, which is nicknamed “the Long Goodbye,” due to the manner in which it slowly disintegrates the personality of the afflicted individual. Rather, Siegrist wants to help people understand that dementia often takes its greatest toll on the loved ones of the stricken.
“A misconception that’s out there is that people thinks it’s so terrible to have dementia for the people who have it,” he says. “It is when you’re aware that you’re losing it, and when you can’t fulfill your expectations of yourself. But once you reach a certain stage, where your self-awareness of what’s happening to you is gone, then essentially, while they’re obviously someone else than who they used to be, but they can actually enjoy life, as long as there’s a system [that allows them to], where the people taking care of them aren’t completely overwhelmed.”
Siegrist speculates that dementia is hardest on a spouse.
“You lose your partner that you’ve had for years, for decades. They don’t recognize you, and they’re not the same person,” he says. “That’s absolutely brutal.”
For his part, Siegrist says he was able to come to terms with his mother’s disease.
{loadposition latestlife}”I was sad to see my mom change, but I was able to accept it [relatively] easily,” he recalls. “[…] Obviously I missed being able to talk to my mother peer to peer, [but] I realized this was a step on her life’s journey. This was essentially the last change she went through, and my mother dealt with that change quite well.”
Siegrist says he is not sure how his mother felt about her increasing loss of function, but he says she never seemed consumed by it.
“What was interesting is that she really seemed to accept it, and it didn’t seem to bother her,” he relates. “That makes me think she wasn’t really aware of it. She was never a very reflective person. Maybe that was a good thing for her, that she didn’t reflect too much about what [was happening]. [… Near the end] she wouldn’t remember how to use cutlery. She would eat with her hands. She had more and more difficulty doing daily activities. But she didn’t get angry about it in general. Sometimes there’d be a little bit of anger, but not too much.”
What may have helped her is that Siegrist and his siblings did their best to relate to her present-tense experience, even when that experience was rooted in the past.
“Even in 2007, she would often call me her brother,” Siegrist says. “[…] I realized the way to get in touch with her [was,] if she saw me as her brother, to accept that, and we would talk about old times. I would let her tell her story, and that was a way she could express herself. Because at times she wouldn’t know what she did a half-hour beforehand, but she knew what she did as a kid. So that was a way of having a conversation.”
Siegrist wants Americans to become better aware of the possibility of instituting paradigms for caring for dementia patients other than the institutional one that dominates our cultural landscape, such as a facility in the Netherlands “that’s like a gated village for people with dementia, where they can just move around freely and do what they want (to a certain extent) in a safe environment. […] I think the American system, where basically you need money to pay for care or you basically do it yourself—which isn’t actually a very good situation—is [untenable].”
And because the American populace is an aging one, Siegrist says, for the foreseeable future there is likely to be an increased need for families to have pragmatic care options.
Siegrist also hope to bring more attention to lifestyle choices that may help prevent dementia.
“There’s debate about it, but there seem to be some thing that can be done to minimize the risk of dementia, he reports. “[…] From one of the studies I saw recently, it seems that being engaged socially is very important. The combination of [that] and getting out and moving […] having novel stimuli, those activities seem to have an effect.”
And he says juggling highlights one of those possibly preventive behaviors.
“When I juggle, I’m doing complex movements with both sides of my body,” he says. “And apparently [maintaining] connections between both [hemispheres] of your brain contribute to keeping you in a good state. I’m not saying that juggling is going to keep you from getting dementia, but I think activities that use both sides of your body are very important. That’s sort of my tie-in. [The connection between] my juggling tour across America and dementia isn’t random.”
Siegrist plans to come walk through Long Beach this weekend[1] along the California Coastal Trail, and he encourages people to come walk with him—for an hour or a day—so long as they share his interest in raising dementia awareness.
“The more the merrier,” he says. “[A crowd] could be a much more effective way to get the message out there. And it would just be cool to get people together out there doing that, sharing the experience with me.”
Notice is another reason for the juggling. A guy’s walking down the road juggling, and people tend to get curious.
“When I’m juggling, people will stop and say, ‘Hey, cool. What are you doing?'” he relates. “And then we get to talking, and I talk about the reason. And probably [nearly] half the people will say, ‘Yeah, I’ve got somebody in my [life] with dementia.'”
Siegrist understands that his potential contribution to the cause is modest, but he reasons that every additional bit of information and empathy that gets out into the world is helpful.
“I don’t think I’m actually going to make any big changes,” he says. “[…] But everyone has to be prepared that, at one time or another, you will have to take care of your parents, or be responsible for them. I realized that that’s where I was going to. […] I realized how difficult it is for people, if they don’t have a care system, to take care of people with dementia.”
Scott Siegrist welcomes any sort of help Long Beachers—or anyone along his northerly route—can give: a place to stay for the night, transporting his 40-pound backpack from one point to another, or making a donation to organizations like the Alzheimer’s Association (with or without referencing him). He’s also willing to perform at any homes for dementia patients in town, to provide a pleasant distraction in one small, present-tense moment.
To keep up with Siegrist, please visit his Juggling Across America Facebook page. To contact Siegrist directly e-mail [email protected].
[1] Currently he’s staying in Long Beach with a niece; the official walk-through is yet to come.