In memory of memories

For Jamie Barnwell Phillips the Alzheimer�s Association is more than a good cause. It�s about educating those in the fight against dementia � patients, family and caregivers � about the resources available. Resources she wishes she and her father would have known more about years ago as their mother and wife battled the disease.

On Sept. 15 the local Walk to End Alzheimer�s will be held at Cape County Park North. Some attendees have been diagnosed with dementia. Others will be there in memory of a loved one, as a caregiver or supporter.

Regardless, the message being shared is clear: You�re not alone in this battle.

Jamie�s story begins in 1998 when her mother Anna Kathryn Barnwell started to experience what she now realizes were symptoms of dementia.

Jamie and her father Ralph Barnwell knew Anna Kathryn had been in car wrecks years earlier. And in 1998 she had a small stroke. But they did not anticipate dementia had started. That is until 10 years later when they began to notice other significant changes.

�We didn�t ever really get a true diagnosis,� Jamie said in an interview this week. �Doctors that we found, they are more educated now than they were, but they�re still not super educated on Alzheimer�s and dementia itself.�

Disclosure: Jamie is the project and event manager for rustmedia, a marketing agency that is a sister company to the Southeast Missourian.

The decline in Anna Kathryn�s health started with simple tasks like following recipes. A private person, there wasn�t a lot of discussion about these changes. But soon Anna Kathryn voluntarily quit driving.

�She started to ask more questions, short-term memory loss. Things that just didn�t seem normal,� Jamie said.

Her mom was prescribed medication that helped with the symptoms for six months. But, as Jamie described, her body adjusted and the medication was less effective.

Anna Kathryn was able to remain at home with her husband until February 2016. Ultimately she became combative and the family made the decision for her safety and her husband�s health to put her into the nursing home. She died one month later.

Jamie was determined her mother�s battle with dementia had to serve a larger purpose. There were too many things she did not know about the disease that could have helped the family.

�There is so much that we didn�t know, that we went through, that we wouldn�t have had to go through if we had known the resources available to us,� Jamie said. �If we had known the different paths we could have taken as opposed to just medication. Services we could have gotten my dad who was her primary caregiver up until a month before she passed away.�

It wasn�t just the memory loss that caused the family heartache.

�There were a couple of things to me that were so much bigger than the memory loss. Just the way that her personality changed. The way she interacted with me. Not being at home all the time, I wasn�t a familiar face to her anymore.

�For me, the biggest thing was remembering that no matter what I saw at that moment she was still my mom. So I just went into it every time like she was the same person.�

She said it�s important to understand the person is not the disease.

Services through the association include everything from respite care, support groups, education and a faith outreach.

As for Jamie�s involvement, she joined the walk in 2016 and became part of the planning committee in 2017. Next weekend she will be back at it when the association holds its 21st annual walk.

She�s upped her fundraising goal each time, including hosting her own event this year which raised $700 through a family-friendly event at Arena Golf. Other volunteers have held their own events as well, including a golf tournament.

Registration for Saturday�s fundraiser kicks off at 8 a.m. The ceremony and walk will follow along with refreshments.

The goal this year, as reported by Joshua Hartwig in the Southeast Missourian, is $105,000. And it�s a goal within reach. Organizers told the newspaper they expect 500 people to turn out. And they welcome walk-up participants.

You can learn more about the organization and the walk on the association�s website, www.alz.org/walk.

Jamie knows a few hundred � even a few thousand � dollars won�t solve the problem. Nevertheless, maybe it�s enough to help one person fight another day. Or enough to help one family get the support � financial or emotional � they desperately need. That�s a driving force for her today. One walk, fundraiser or education event at a time.

Lucas Presson is the assistant publisher of the Southeast Missourian.