Being a caregiver for her mom after her dementia diagnosis was never something Usha Tewari expected.
“My mom probably displayed signs of early-onset in her 50′s,” Tewari said.
She said diagnosing the neurological disorder isn’t always easy because it’s not a one-size-fits-all disease. In some cases, it can be mistaken as a mental health disorder.
“So I reached out to the Alzheimer’s Association their 1-800 number for help, you know how to manage some of the symptoms like hallucinations and psychosis,” Tewari said.
“As a caregiver, it’s not every day, it’s like every hour is a challenge,” Tewari said.
The challenges caregivers have faced intensified during the COVID 19 pandemic.
Tewari said in March 2020 her mom was hospitalized at the same time visitors were not allowed inside nursing facilities. The mother and daughter ended up separated for about a month.
“It was a culture shock for both of us because she wasn’t talking for several weeks, you know, when she came home I think there was a lot of anger she couldn’t express. She thought I put her there intentionally, she doesn’t like to be separated from me,” Tewari said.
Speech therapy helped after her mom returned home, Tewari said, but getting words out was very difficult initially. Tewari has dedicated every bit of free time she has back to the Alzheimer’s Association after the program became her first resource for her mom.
“I advocate for state and federal legislation and that’s also a sense of relief for me to deal with my stress as a caregiver that I feel like I’m doing something not only for the current individuals who are dealing with it but also for the future generations,” Tewari said.
As a first-generation Indian American, Tewari has connected with other caregivers to break down social stigmas in some cultures related to the disease.
“To give people the courage to understand and to talk about it and be open and not bottle up, especially if they’re in that situation,” Tewari said.
Caregivers seeking more help can click here for resources.
The Alzheimer’s Association is hosting a Walk to End Alzheimer’s on Saturday, Oct. 23. The event starts at the Walt Disney Amphitheatre at Lake Eola, 195 N. Rosalind Ave.
Registration for the event starts at 8 a.m. and the walk is set to begin at 9:30 a.m. For more information, click here.