Balancing Life Amidst the Challenges of Alzheimer’s Disease

“After being together for 33 years, that was the first time I had ever seen my husband cry,” recalls Jeanette Martinez of Jacksonville, NC.  William ‘Willie’ Martinez, 55, had just been diagnosed with younger-onset Alzheimer’s disease in 2009.  While this news understandably shook the Martinez family to its core, Jeanette knew she needed to be the pillar of strength for them both and replied, ‘We’ve got this.”    

“Willie was not only wiz with math, he was phenomenal with numbers,” shares Jeanette. Retired military, he worked with computers at Camp Lejeune and Jeannette worked at the high school.  She began to notice changes in Willie’s behavior and increased forgetfulness. He shared these symptoms with his family physician during his annual physical.  The doctor gave Willie a seven-question test which he passed with ease; therefore, Willie believed all was okay and he did not pursue it.  Sadly, the forgetfulness increased and Jeanette learned that Willie’s best friend at work was covering his mistakes.  Subsequent family physician visits led Willie to Wilmington Memory Clinic for further testing that confirmed his diagnosis.   “Willie was the sweetest person. Not only was he my husband for 44 years, he was my best friend.  We ‘liked’ each other as well as ‘loved’ each other. We did everything together.”

Hispanics/Latinos are about 1.5 times more likely to develop Alzheimer’s disease than older white Americans. Both Puerto Rican, this placed their family at higher risk. While they grew up in the U.S., Jeanette’s father and Willie’s grandparents were born in Puerto Rico. “Latino families are known for being very close-knit. Since we were in the military, we didn’t live near any family. When Willie was diagnosed [particularly as the disease progressed], I looked at moving us back home to New York. Unfortunately moving there was not financially viable for us,” said Jeanette.

Willie’s brothers came to visit him. The younger brother in particular had a hard time seeing Willie because of the effects that Alzheimer’s disease had taken on him. Jeanette reiterates that being in the military created a different set of circumstances for them. While they had many friends who offered their support, it was not the same as having family nearby.

Jeanette readily admits that she had no idea how difficult her family’s journey would be with Alzheimer’s, but rather than embracing the mindset that they were being punished, she chose one of levity.   “I knew caring for Willie wasn’t going to get any easier as his Alzheimer’s progressed, so I always found ways to cope by using a sense of humor.”   Caregiving can be a tough, time consuming job, but Jeanette believes it is of the utmost importance for the caregiver to make time for themself.  “Take a break, go for a walk, do a craft,” offers Jeanette. “I became so involved with caring for Willie, that I had stopped living for Jeanette.”  Luckily Jeanette recognized that she needed more balance in her life before resentment could creep in.   

“Susan Grochan invited me to an Alzheimer’s organizational meeting about six years ago and asked me to take notes,” shared Jeanette.  “Every person there had a connection to the disease, and it was interesting to hear their stories as everyone’s experience with Alzheimer’s is different.” The committee provided Jeanette the support and compassion that she needed.  “It was comforting for me to know that these individuals understood what I was going through.”    Susan and Jeannette became co-captains of their Walk to End Alzheimer’s – Jacksonville team, Call to Mind, in honor of Willie and have been active each year since its inception.  “Our walks may be small, but we do them up big,” laughs Jeanette.  “We enjoy the opportunity for fellowship, to raise awareness about Alzheimer’s and all other dementia and to share information.”   

The team has been successful in fundraising through a variety of initiatives.  Jeanette has a daughter Jessica, 34, who has Down syndrome.  Unfortunately, persons with Down syndrome have a higher likelihood of developing Alzheimer’s disease.    While Jessica took her father’s passing in 2018 particularly hard initially, she was able to channel that passion into organizing a golf tournament in his honor in April 2019 that raised over $4,000.   This year the team has hosted a virtual Pampered Chef kitchen show that was successful and has other ideas in the works.  Jeanette welcomes this year’s Walk is Everywhere format as she was recently diagnosed with breast cancer. Yet another hurdle for a family that has already carried so much.  This year’s walk provides her the opportunity to participate in an environment with the flexibility that is so important to her right now. So she looks forward to participating in Walk to End Alzheimer’s – Jacksonville in her own way on Walk Day, October 17.

“Walk is not only my way of remembering what took my husband away from me, it’s a great way to inform people about the Alzheimer’s Association,” affirms Jeanette. “It is happy day that is full of energy and you have the feeling that you are surrounded by love.”   

During Hispanic Heritage Month (Sept. 15-Oct. 15) the Alzheimer’s Association is celebrating Hispanics and Latinos who are bravely taking on the fight to end Alzheimer’s. Their dedication to their loved ones and the community inspires us all. Jeanette and the entire Martinez family are a shining example of such courage. Hispanics are the fastest-growing population in the United States. By 2050, the number of Hispanic elders with Alzheimer’s and other dementias could increase more than six-fold, from nearly 200,000 today to as many as 1.3 million. Despite their increased risk, Hispanics/Latinos are underrepresented in clinical trials, making up just 1 to 7% of all clinical trial participants. The Alzheimer’s Association wants families to know they are not alone when navigating Alzheimer’s disease and other dementias. The Association offers free Spanish-language resources, programs and services including:

  • A free nationwide 24/7 Helpline (800.272.3900) staffed by specialists and master’s-level clinicians who offer comprehensive information, care consultations, referrals and real-time support – translation services available in more than 200 languages.
  • A comprehensive Spanish-language portal of information on Alzheimer’s and dementia, care and support, research, ways to involved and to find a local office

Funds raised through efforts like Walk to End Alzheimer’s, which Jeanette supports, helps the Alzheimer’s Association pursue research into health disparities like the impact on the Hispanic/Latino community.

LIKE JEANETTE WE ALL HAVE A REASON FOR WE ARE FIGHTING FOR A WORLD WITHOUT ALZHEIMER’S DISEASE. Start your own team or join an existing team for one of our nineteen North Carolina Walk to End Alzheimer’s events:

The world may look a little different right now, but one thing hasn’t changed: our commitment to ending Alzheimer’s. This year, Walk to End Alzheimer’s® is everywhere — on every sidewalk, track and trail. Your health and safety are our top priorities. We won’t have a large in-person gathering — instead, we invite you to walk in small teams of friends and family while others in your community do the same. Because we are all still walking and fundraising for the same thing: a world without Alzheimer’s and all other dementia.

When you participate in the Alzheimer’s Association Walk to End Alzheimer’s®, you’re part of a community that cares — and that community, which starts in your backyard and stretches across the country, has never needed us more. With the dollars we raise, the Alzheimer’s Association® can provide care and support during these uncertain times while advancing critical research toward methods of treatment and prevention.

Register today at alz.org/walk and join the movement.

2020 WALK DATES

Alamance County – 9.26.20
Asheville – 10.10.20
Charlotte – 10.17.20
Fayetteville – 10.31.20
Gaston/Cleveland/Lincoln – 9.12.20
Guilford County – 10.17.20
Henderson County – 9.26.20
Hickory – 10.24.20
Iredell County – 10.10.20
Jacksonville – 10.17.20
Moore County – 9.26.20
Mount Airy – 9.12.20
New Bern – 10.25.20
North Wilkesboro – 10.10.20
Robeson County – 10.24.20
Rowan-Cabarrus – 10.24.20
Triangle (Raleigh-Durham) – 10.10.20
Wilmington – 11.7.20
Winston-Salem – 10.3.20

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