One Family’s Mantra — “Just Keep Swimming”

“I remember it like it was yesterday. Of course, I don’t really remember yesterday all that well.”

~  Dory, “finding nemo”

When the Disney produced “Finding Nemo” hit the movie theaters almost twenty years ago, it was Dory, the spunky, distracted blue fish who taught us all, in the face of adversity, to “just keep swimming.” This lesson is one which Caroline Cress of Mocksville, N.C. and her family have fully embraced to carry on the legacy of their mom/grandmother Marie Steed who lost her battle with Alzheimer’s disease in December 2018.

“Mom was an amazing woman,” begins Caroline. “She was so much fun, organized and on top of it.” Caroline says that not only did Marie enjoy teaching elementary school, but holidays and birthdays were a big deal at the Steed’s home as her mom made everything special. “Mom never met a stranger and was a friend to many,” adds Caroline with a smile. Marie and her husband Bill were married for close to 50 years and were parents to three daughters. Prior to teaching, Marie served for Eastern Airlines as a reservationist.  

In 2011, Caroline welcomed their first daughter Callie into the world. “As a new mother I was terrified,” shares Caroline. “My dad suggested that my mom come and stay with me for a few days to help me with Callie, and give me a break.” Bill brought Marie to Caroline’s house (living in Charlotte at the time) for what was intended to be a three-day stay, but Caroline admits that the first 24 hours with her mom’s presence was an absolute nightmare! “Mom was very anxious and kept wringing her hands,” explains Caroline. “I gave her instructions on feeding and burping Callie so I could take a nap. I figured since mom had three daughters of her own, this would be no big deal.” Caroline adds that her mother looked really frightened and behaved like she did not want to hold her granddaughter at all. Another incident occurred when Marie was holding Callie across her lap while having a conversation with Caroline. “We were talking and over about a three-minute time frame, mom’s legs began to spread apart, and Callie would have fallen if I had not reached over and grabbed her!” exclaims Caroline. “I was like ‘mom, you were holding Callie and almost dropped her,’ and her mom replied, ‘I had no idea, wow.’” Caroline adds that she was clearly overwhelmed by her mom’s behavior and calls her husband Joey balling crying. Joey and Caroline also called Bill to come pick up Marie as she was creating more stress for Caroline.

She shares that this wasn’t the first time her mother had done something like this but it was the first time that made Caroline think back to all the little things that may have been red flags. These flags, however, were not considered as such at the time as the family brushed them off as mom is just being a bit absent-minded. Bill and Marie were not only empty nesters, but the longevity in their marriage enabled them to do a really good job of ignoring what was really happening to Marie. After the incident with Callie, Caroline called her sisters to share what happened. A long discussion ensued over the culmination of the ‘little things’ such as their mom telling the same stories over and over, losing her keys frequently and unable to operate her new flip phone. Consequently, the family scheduled an appointment with Marie’s doctor to get a diagnosis. Caroline adds that it took a really long time to get it, almost a full year. “This was a frustrating time for all of us,” says Caroline. “There are close to 100 different types of dementia, and there are so many things that can cause memory loss.”  The doctors do not want anyone to jump to the conclusion that they may have Alzheimer’s and what was going to happen to them.    

Marie was diagnosed with younger-onset Alzheimer’s in 2012 at age 65. Caroline offers that she, as well as her family, had a million questions whirring through their minds. What’s going to happen to mom? How long is this going to last? Will we be able to take care of her? A friend of Caroline’s referred her to the Alzheimer’s Association website.   She found it to be a wonderful resource for her in discovering information on where to find answers to so many of the questions that she had at the time.  

Caroline also got involved with support group sessions through the Association. While she was grateful for the opportunity to participate in the sessions, Caroline struggled a bit with the fact that she was so much younger than other members of the group. With the help of the Western Carolina Chapter staff, Caroline was able to find other individuals her age to share experiences with. Another way Caroline channeled her energy was through the Walk to End Alzheimer’s – Charlotte in 2013 as a team captain and then as a planning committee member for the event.  She recalls that her parents had not yet shared her mom’s diagnosis with their closest friends or her mom’s family. “Mom was terrified by the diagnosis,” asserts Caroline. “But I think for my dad, it was like when I tell people it becomes real.” Caroline took the bull by the horns so to speak with her parents and was like, “Ok – this [disease] is affecting me and it is also affecting our family. What can I do?” Subsequently, Walk Team Just Keep Swimming was formed. Since Alzheimer’s disease is such a heavy topic, Caroline’s family believes that Dory (their mascot) brings some levity to the subject as well as a creative way for the grandchildren to participate. Caroline shares that the first year’s team members worked with her and really didn’t know her family directly. Additionally, her husband’s family and some friends joined them. When 2014 Walk rolled around, Bill and Marie and the Steed sisters and their families joined the team; however, it was evident that her condition was progressing at a rapid pace.   

“The Alzheimer’s Association was a wonderful resource for us when our family needed to discuss next steps with the safest living arrangements for my mom,” says Caroline. “They talked to my dad about places in the area that were good options for her.” They reviewed the environments of a long-term care community as well as what her journey might look like at home – giving them all the resources to make the best decision. Bill’s stress level was high in caring for Marie at home but he felt compelled to do so. Caroline shares that her dad battled internally over the decision to move Marie to a care community as he promised her he would take care of her, but was no longer able to do so (Marie began wandering, not eating and her personal hygiene was failing). “We got to a point where we were all suffering,” adds Caroline. “We found a wonderful place for mom. She was able to have her own furniture in her room and frequent visits by friends and family until her passing.   

This year’s marks the tenth year that the Just Keep Swimming Team will be participating but this will be their first at the Walk to End Alzheimer’s Winston-Salem since the family has moved to that area. Their cumulative total for all ten years is over $142,000 to support the Alzheimer’s Associations’ care, support and research programs. Caroline’s fundraising techniques through the years have included bake sales, donations from friends and family members, co-workers and businesses. Additionally, her daughters enjoy operating lemonade stands on the golf course. Caroline distributes a newsletter monthly that includes information about her mom (which Caroline finds to be very therapeutic exercise for her personally) and information about Alzheimer’s in general, how they can get involved, the upcoming Walks, etc. Caroline believes the Walks provide a powerful platform to share experiences and see the number of individuals who are rallying together to support the cause. “I can’t explain to you the impact that doing this Walk has had on my life,” concludes Caroline. “It’s become part of who I am and an outlet for me.” One might say, it helps her just keep swimming.

“Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim.”

~  Dory, “finding nemo”

LIKE THE CAROLINE, WE ALL HAVE A REASON TO FIGHT FOR A WORLD WITHOUT ALZHEIMER’S DISEASE. Join your local Walk to End Alzheimer’s today as an individual, team, or sponsor.

The Alzheimer’s Association hosts 17 walks across North Carolina. The Alzheimer’s Association Walk to End Alzheimer’s is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. Since 1989, the Alzheimer’s Association® mobilized millions of Americans in the Alzheimer’s Association Memory Walk®; now the Alzheimer’s Association is continuing to lead the way with Walk to End Alzheimer’s. Together, we can end Alzheimer’s. Your health and safety are our top priorities. We will continue to closely monitor CDC, state and local guidelines to ensure Walk events adhere to the latest recommendations.

Alamance County9/24/2022
Guilford County10/15/2022
Henderson County9/24/2022
Iredell County9/24/22
Mount Airy09/10/2022
New Bern10/22/2022
Unifour (formerly Hickory)10/29/2022
Triangle (Raleigh-Durham)10/15/22
Moore County11/12/2022

Alzheimer’s isn’t stopping and neither are we.

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