Editor’s Note: We’re less than a month away from the start of the 2017 Walk to End Alzheimer’s season. Register at alz.org/walk!
By Julia Leonard
Mardell Xavier remembers her mother’s lifelong passion for photography – especially taking photos of family and friends.
“She loved to take photographs of everyone and everything she did. I have boxes and boxes of her old photographs, and I was thinking that was her way of preserving the memories that she would not have someday,” said Mardell.
Mardell also recalls a happy, normal childhood growing up in San Jose. After finishing college and working in Human Resources, Mardell moved to the East Bay Area, but would frequently visit her parents.
“I found out about it (Alzheimer’s) kind of late,” said Mardell. “She was a wonderful cook and she would tell me two or three times that she burned something on the stove. One day, I had to take her to the doctor and as we’re walking out, the doctor said to me, ‘You know your mom has Alzheimer’s’ I was like a deer caught in the headlights. I didn’t know where to start, where to go.”
Mardell’s father soon became his wife’s caregiver, but after his passing and Mardell’s retirement from a State University in California, she and her husband moved to Washington state and brought her mother with them. As Mardell’s mother progressed through the disease, she began to have difficulties handling machinery and other types of equipment, including cameras. Still, Mardell and her mother would relive memories through old photos.
“One of the things that we did while she was in the various stages, was pull out some of her old photograph albums and go through them with her and talk about some of the people. Her long term memories lasted much longer than the recent memories, which is often the case. She was part of a very large family of 16 children. We would look at all her old photographs of her large family and my growing up years, and she seemed to really enjoy that a lot.”
After moving her mom to Washington, Mardell quickly became involved in a support group through the Alzheimer’s Association and found “all sorts of resources and wonderful support from the group members.” After Mardell’s mother passed, she became a support group facilitator and a strong voice for spreading awareness about Alzheimer’s disease.
“I’ve been a facilitator since 2003 – so quite a few years now,” said Mardell. “I’m an avid, passionate follower of any information related to Alzheimer’s and other forms of dementia. I have been very much interested workshops or reading materials that involve Alzheimer’s and how people are dealing with the issues. I have received wonderful training and support from Chapter Staff, and I have been blessed to have wonderful group members over the years who bring a lot of information to the group and support to each other.”
Mardell also became involved in the Walk to End Alzheimer’s on the Olympic Peninsula, a community with an inspiring resilience to hold the Walk each fall. Mardell recalls her first walk experience and how that set the tone for walks on the Peninsula.
“It was a real celebration of those who have Alzheimer’s and the people and the family members who are caring for them. I’ve really enjoyed the fact that I got to talk to other families who were caring for someone with Alzheimer’s. I would say, for everybody, it was a moving day where we talked about some of the things that we had been dealing with and encouraged each other.”
Mardell recognizes the challenges her community faces being detached from a metropolitan area, but also knows the resources and information on Alzheimer’s is crucial for educating those who might be dealing with memory loss currently or later in life.
“I think it’s so important for the Olympic Peninsula. If you’ve ever been out here, we’re quite isolated. We’re coping with things on our own out here. In addition, we have a large retiree population. There are a lot of people who are reaching the ages where they are more likely to experience the symptoms of Alzheimer’s or other forms of dementias. Sometimes the retirees that are here have moved far away from families, as we have, so we are on our own. I think it’s so important that they have some kind of anchor, some kind of resource here that they can turn to locally.”
It’s also important to have a support network of family and friends. Her husband has been a supporting partner throughout the care experience with her mother, and continues to be involved with her in volunteer activities involving Alzheimer’s and caregivers. Within her community, Mardell has continued to be a strong advocate for those who need information and resources about Alzheimer’s or dementia. Finding a support group played a large factor for Mardell in terms of accessing resources and information about Alzheimer’s. She wants others to know how important community and camaraderie are in combating Alzheimer’s disease.
“I also want people to know that they’re not alone, that they don’t have to be isolated. There should not be a stigma for them if they either have the disease or are caring for the disease. There are groups like our support groups all around. We really talk about how we can help out by becoming advocates, contributing to something like the Walk, or coming to meetings, and letting others know that the meeting is there. It’s free, it’s confidential, and it’s a place for Caregivers to come and say what they need to say and find out what they need to find out. All of those things are particularly important in a small community here.”
Join Mardell and the thousands in Washington and Idaho walking to end Alzheimer’s. Register at alz.org/walk.