Caregiver shares how she cares for mom with Alzheimer’s at home

(Aging Untold) — Ty Lewis, a dementia practitioner, takes care of her mother, Gertrude, who is in the end stages of Alzheimer’s while raising her children. She has been sharing her journey online with a community of more than 120,000 people online.

Lewis, a member of the “sandwich generation,” spoke with Aging Untold expert and gerontologist Sam Cradduck about what it takes to care for two generations and what the online community means to her family.

Why Ty Lewis chose to keep her mom at home

Lewis and her husband decided against a memory care community and became Gertrude’s primary caregivers, keeping her in their home.

“She was already staying with us during COVID, and so it just made sense for us to keep her at home,” Lewis said. “One of the things that we decided as a family was that we wanted to make sure that she aged in place.”

Lewis said that decision meant spending time together as a family, showing her mother love and using research-based strategies to support her.

“We never wanted her to go to a memory care community because we always wanted to do life with her,” Lewis said. “Our whole motto is, we want to be the ones to usher her into heaven.”

How Gertrude is doing now

Lewis said her mother is “steady” and she is grateful for that.

“It’s crazy because once they start declining, it’s just so quick. But mommy has been steady, and I’m thankful for that,” Lewis said. “I truly think that goes back to my background and my expertise, and us just working with her as a family.”

Lewis said her household has built routines around her mother’s care, including music therapy from her youngest daughter, who is a singer, and dance sessions with her oldest daughter.

“Mommy is doing well, if you will, with her being in the last stage,” Lewis said. “When the doctors and nurses come because she’s on hospice, they come every Tuesday to the house and they’re like, we cannot believe how well she’s doing. No sores on her body, and she’s just staying stable. We’re so thankful for that.”

Building an online community around dementia caregiving

Lewis said that sharing her family’s journey online has been meaningful for her, her family and her mother.

“Developing a community has been so amazing. When I started the community, I wanted to build something that I did not have,” Lewis said. “I wanted people to see that dementia wasn’t something that, you get diagnosed and you’re like, I’m dead the next day. No, we’re going to find joy in the journey and we’re going to live life.”

Lewis said she began building the online community in 2019, and it has since grown to more than 120,000 members.

“I don’t want us just to show up every day and like, oh, this is gloom and doom, your loved one is going to die,” Lewis said. “No, I want us to show up and, yes, you’re going to see the good, you’re going to see the bad, but you’re also going to see that there is purpose in everything that we’re going through.”

Lewis added that even though her mother doesn’t fully understand what’s happening, Gertrude has found a place where people around the world love her.

A day in the life of the sandwich generation

Lewis described what a typical day looks like as a member of the sandwich generation.

“A day in a sandwich looks like you being pressed together with all of the ingredients, and it’s exhausting,” Lewis said. “On one hand, I’m a wife, I’m a mother taking care of two young adults, teens. And then I’m taking care of my mom, so it can be exhausting.”

Lewis said she also homeschools her children and owns a tutoring business, in addition to caring for her mother.

“I don’t want to necessarily say balance — just making sure that I can look at how I am designating responsibility, if you will, for everybody in our household so we can all come together and help,” Lewis said.

Lewis described starting her day early to journal and read the Word before getting her children ready for school and preparing her mother for the day.

“No day is ever the same,” Lewis said. “But at the end of the day, we’re doing everything that we can within our home so that even in chaos, it can look like peace.”

Key takeaways

• Ty Lewis and her husband chose to keep her mother, Gertrude, at home rather than move her to a memory care community after Gertrude stayed with them during COVID.
• Lewis credits her background as a dementia practitioner, along with family involvement like music therapy and dance, with helping her mother remain stable in the end stages of Alzheimer’s.
• Lewis built an online community starting in 2019 that has grown to more than 120,000 followers, aimed at showing joy alongside the challenges of a dementia journey.
• As a member of the sandwich generation, Lewis balances caregiving for her mother with homeschooling her children, running a tutoring business and raising two teens.
• Lewis says structuring daily responsibilities across her household, rather than seeking perfect balance, helps her family find peace amid a chaotic schedule.