A Prescription for Caregiving

Dr. Azra Shaikh, a primary care physician in Cary, N.C., was accustomed to fixing things for her patients and taking care of their health needs. But when Alzheimer’s disease took control of her mother and her father began to suffer from another form of dementia, called frontotemporal dementia, she faced a problem that even her considerable skills could not immediately solve.

Like many others, Azra has watched the disease progress as her mother goes through various stages.

Known to her grandchildren as ‘Nani’, Azra’s mother began to decline slowly. An immigrant to America, she came with her husband from India and dedicated her life to being a wife, homemaker and mother raising Azra and her sister.

She was a ‘loving, caring, always-worried mom’, Azra said.

Nani became known for babysitting other children after the girls went to college. “She would treat them like her own child,” Azra said. “I’m still friends with moms of the girls she babysat.”

Friends were the first to notice subtle changes in her mom’s behavior and they let Azra know. Repeating the same actions, unwarranted suspicions and anxieties, forgetting things she didn’t normally forget, inappropriate comments — all these and other symptoms led the family to suspect the worst.

Azra felt helpless.

“I have diagnosed and treated many patients with dementia in my practice, but it was very frustrating to be on the other side,” she said. She took her mom to several doctors praying for a different answer, but it always came back the same.

Today more than 6 million Americans are living with Alzheimer’s. In North Carolina, the number is 180,000 with over 356,000 family and friends providing care. For many families, talking about diseases like Alzheimer’s can be a taboo subject. But Azra wanted to confront the challenge head on.

More than half (56%) of Asian Americans believe that significant loss of memory or cognitive (such as thinking or learning) ability is a normal part of aging, according to the special report on race, ethnicity and Alzheimer’s in America in the 2021 Alzheimer’s Disease Facts and Figures Report.

“In my culture, sometimes people don’t like to talk about these things,” she said. “They feel ashamed, or they feel like ‘we don’t want people asking our personal business’ or ‘nobody needs to know that’. But I feel very differently. I think it’s important that we do talk to each other about what’s happening and that we be open about it.”

She was able to do that with her mom’s closest friends who provided a solid network of support. Her mother had known several of them for at least 40 years and they were very involved in helping with her care early on.

And Azra believes her experience can also help others. People who knew about her mother began to approach her to learn more about the disease. “You know it’s a good day to be able to help somebody through it the way early on people helped me,” she said.

Azra has received valuable help and guidance from the Alzheimer’s Association, especially through its website. “Some of the things they helped me with were finding resources for caregivers that we could use like respite care, “she said. “Lots of different tools were available that I was able to find.”

The Association’s online education center with its free courses was also a tremendous help. Azra said awareness is one of the most important parts of the fight to end Alzheimer’s. “The one big thing about dementia is that you have to realize the person is changing,” she said. “And you’ll have to change with them.”

Like many caregivers, relatives, family and friends of those suffering from the disease, the Walk to End Alzheimer’s offered her a tangible way to help — a prescription for the emotional journey, if you will. She joined the the Triangle Walk in the Raleigh-Durham area in 2019 along with her fiancé, her two daughters and one of their friends.

“Mom was declining and things were going horribly. I felt completely helpless,” she said. “When the Walk came up I was like ‘OK that’s something I can do, something I can participate in.’ It just makes me feel like I’m taking some kind of action.”

And her actions paid off. Having a small team didn’t deter her from reaching big goals. In 2021 they raised over $1,600, much of it through social media. Her supporters included friends, acquaintances, family members and others.

Although she considered different names for her team, she finally settled on ‘Azra’s Hope.’ “That’s what we walk for. We walk for the hope that things will be better, and that we will find a cure,” she said. The goal is a brighter future for all those living with Alzheimer’s and their families.

When she put the word out on social media about the Walk, her parents and her plans to participate, the support and the donations came flooding in. She was amazed by how many people she knew who were willing to give. “It was just incredible. A lot of these people know my parents so it was very personal. And they were happy to help,” she said.

And the Walk was an experience she will never forget.

“I felt great walking,” said Azra. “My kids walked with me, and they were also really happy that I was doing something for my parents.”

The atmosphere, energy and enthusiasm made Walk Day extra special. “I love the concept and then you see all these people there and everyone with positive attitudes together and you know we share a common burden,” she said. “But at least you know that we are still hopeful.”

Azra livestreamed the Walk, which gave her a bigger platform and a broader audience. “I had people like family members in India who were watching and were able to connect,” she said. “I thought it was the neatest thing. I mean it was really cool!”

Azra is focused and passionate when it comes to the Walk and finding those who will back the cause. “The number of people on my team is not as important as the number of people who supported my team,” she said. “I wasn’t looking for a team with 200 people. The goal is to spread awareness…”

Azra’s Hope will be out there once again on October 15 at Walk to End Alzheimer’s – Triangle. Their goal this year — to raise $10,000.

As Azra shares on her Walk Team’s fundraising page, “As a doctor, I am a fixer. It breaks my heart to not be able to “fix” this. And so I hope for the day that there will be a cure for Alzheimer’s. My mom is the reason I fight this fight. When I was a child, I know she would do ANYTHING she had to do to keep me safe and healthy. And now it is my turn to do the same for her.”


LIKE AZRA, 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
Asheville10/8/2022
Charlotte10/22/2022
Fayetteville10/29/2022
Gaston/Cleveland/Lincoln10/8/2022
Guilford County10/15/2022
Henderson County9/24/2022
Iredell County9/24/22
Jacksonville10/15/2022
Moore County10/1/2022
Mount Airy09/10/2022
New Bern10/22/2022
Rowan-Cabarrus10/29/2022
Unifour (formerly Hickory)10/29/2022
Triangle (Raleigh-Durham)10/15/22
Wilmington11/5/2022
Winston-Salem11/5/2022

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


GUEST BLOGGER:
Kim Brooks
Kim Brooks is a former reporter who also worked in public relations and communication during her 30-year career. She became involved with Walk to End Alzheimer’s after her best friend’s mother was diagnosed with Alzheimer’s and she saw the impact it had on their family.

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