NADAM 2017
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In My Community
Steve Schultz - Caregiver of 2016
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(Steve and Peg Schultz enjoyed travel before Alzheimer's disease changed both their lives)

Steve Schultz is still scratching his head about being named “Caregiver of the Year” in 2016 by the Alzheimer’s Association.  “I don’t think I’m the caregiver of any year,” he said with a shy smile.  “I think I failed at a lot of this.”  Anyone who knows Steve personally admires his modest nature and his will to succeed at whatever he puts his mind to.  But what Steve learned from being a family caregiver to his wife Peg, who lives with Alzheimer’s, is that caregiving is the hardest job he’s ever encountered.  Success is hard to define, and it can fleet at any given moment.

What the Alzheimer’s Association saw in Steve Schultz is a man who could put aside his caregiving challenges and the personal disappointment of being unable to keep his wife living with him at home and could unselfishly wrap his arms around an entire community of caregivers facing the same struggles.  “Being a caregiver is lonely,” said Steve.  “Many of the things in life that you could formerly share with your spouse – your best friend – and have intellectual conversations about, you can’t anymore.” 

Several years ago when Steve and Peg first came to the Alzheimer’s Association they attended a support group for individuals with early-stage Alzheimer’s and their care partners.  There the couple met a wonderful core group of new friends…people who were experiencing some of the same emotions and situations they were.  “Alzheimer’s disease is really hard for friends and relatives to understand and to watch,” said Steve.  “Alzheimer’s is not contagious, but it can be scary for others.  It was great to know that there are people out there who are just like us, and will not be afraid of us.”

The group became its own social circle, with members meeting for dinner every Thursday.  They started attending art programs together, and went to the Milwaukee Public Museum’s SPARK! program each month. And the group expanded, welcoming any and all new participants into the fold.  Members searched for new, fun things to do together.  Before long, the group had its own identity, complete with a name, a logo and a t-shirt.

“It all started with Harlan Mueller getting us a block of half-price tickets to a Milwaukee Brewers game,” said Steve.  “The Brewers would put our name on the scoreboard, so we needed a name!  I was driving to the lake, and I thought of my favorite restaurant in Hawaii, Duke’s Canoe Club.  I envisioned a canoe – a really big canoe.  A canoe so big you could never manage it by yourself, but if friends paddle together, some could rest.  That was a start.  And of course the Alzheimer’s color is purple.”  From Steve’s highway brainstorm, the Purple Canoe Club was born.  The name was featured on the Milwaukee Brewer’s scoreboard that summer.  Steve went on to create a logo and worked with printer Mark Schmalling to produce a signature purple t-shirt.  Hundreds of t-shirts featuring the Purple Canoe Club logo have since been produced and distributed. The group also has a Facebook page with over 60 members. “We didn’t want the Alzheimer’s label,” said Steve.  “Part of the awareness of the Purple Canoe Club is explaining it to others…not struggling with Alzheimer’s, but living with it.”

Over the years, these new friends have become more like family.  “I’ve been on many a late night phone call – 11p.m. or midnight,” said Steve.  “Or we text.  We bounce our troubles and solutions off each other. You need to find other caregivers and you need to do it early.”  But Steve also reinforces the importance of letting the person living with the disease make their own friends.  “All of our spouses are so relaxed with each other,” he said.  “When our group started, our spouses were all in the same place.  We could do carpools and attend caregiver support groups together, while leaving our spouses together.  We knew they would be fine.”  But family dynamics tend to change over time. It is a difficult reality that Steve has found hard to accept.  Several of the spouses, including his wife Peg, are now farther along in the disease process and aren’t able to fully participate any longer in some of the social engagement opportunities.  But on days when Steve is not able to steer the big Purple Canoe, he knows that he can lay back and rest, because someone else in the group will pick up a paddle. It is a very big canoe, and everyone is in that canoe together.  And even on a bad day, Steve Schultz is most likely wrapping his arms around everyone, caring for them all.

Steve Schultz poses with his 3 sisters and nephew at the 2016 Annual Meeting 

(from left) Joan Wolf, Steve Schultz, Jason Philps, Barbara McNary, and Rose Friedt 


 

Alzheimer's Association

Our vision: A world without Alzheimer's disease®.
Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.