Despite a doctor’s racist stereotypes, myriad financial crises and 16 years helping her mother live well with dementia, caregiver Loretta Veney shows up with a positive and proactive mindset. And it’s made all the difference.
This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai.
In 2013, Loretta Woodward Veney and her mother Doris Woodward found themselves surprising celebrities for their shared love of Legos.
Woodward, who had been living with Alzheimer’s since 2006 at the time, almost always returned to a higher level of clarity and focus when building with Legos, Veney said.
“The Legos were like a drug or something,” she said of her mother, who died in January 2022. “I couldn’t stand that blank stare, and with the Legos, her eyes would light up and she’d be right back with us.”
Later in Doris’s progression, she continued to be able to build structures, and in turn, was able to communicate in her own way.
Veney recalls watching her mother open and close the shutter on a tiny Lego window.
“She could still operate all those tiny pieces and one time she was playing with a window, and she looked inside the window and said, ‘I’m still in there!’ ” Veney said. “People were amazed, and I credit that to the fact that we did Legos our entire lives. It wasn’t my intent to get semi-famous for that, it was really to give families ideas of things to do with their loved ones.”
Good Morning America came knocking. As did The New York Times, AARP, Washington Post, National Public Radio and other media outlets.
During the course of her mother’s journey, Veney supplemented her income by writing a best-selling book, “Being My Mom’s Mom,” which sold more than 5,000 copies and is currently in its second printing.
Seeing a great need in the caregiving world for real-life, approachable insights and tips from someone who’s been there and done that, Veney extended her platform with speaking engagements, more books and interviews—all while continuing her career in the security management field.
Today, Veney is slowing down (a bit) and giving herself time to travel around in her RV while growing her consulting business as a dementia coach and author. She’s vivacious, tenacious, and in talking with her, it appears as though her Lego saga is but one part of a journey that continues to instill hope in people living with dementia, their loved ones and their care partners.
“I want others on this journey to have more resources than we had,” Veney said. “And to find joy.”
Here’s more from Loretta Veney.
Being Patient: Tell us about your Alzheimer’s journey with your mother Doris.
Loretta Veney: Right in the middle of my corporate career, Mom was diagnosed. That was in 2006. And the amazing thing about that now that I think about it was that I was literally a couple of blocks down from her from where I worked, and I could walk to her non-assisted living place.
So I would try to get her appointments scheduled around those things when I knew it would not be a burden for me to be away and I could always make up the time. So I worked 6 a.m. to 2 p.m. purposely so that in the afternoons I could go out, they had dinner early at this place, so I could go have dinner with her or have lunch and take her to an appointment and things like that. So it went along swimmingly like that at first for a few years.
Being Patient: What was your biggest worry as your mother’s disease started to progress?
Veney: Right away, though, I was concerned with what this disease was going to cost us. And what I mean by that is my mother retired as a secretary. She was a grade 7, which back then was what many African Americans were. So I always knew her retirement probably wasn’t going to be enough to live on unless she was really healthy. So the diagnosis really scared me.
I really thought she was going to outlive our money, so that was sort of the first thought. I got the thought in my head to write a book and supplement the expenses. Before that, writing a book was never in my head.
Being Patient: As a Black caregiver, did you encounter racism in the healthcare system?
Veney: I speak a lot about the stigma of it and in the African American community there’s sometimes kind of like a “it’s just old age” or senility and don’t say anything attitude. I wanted to know, “What’s the big secret?” I wanted help for my mom and not sit around and pretend it wasn’t a diagnosis.
Even to get an appointment for her took months. When we finally got to the neurologist, as soon as the door opened, his body language right away said “I want to be anywhere but here.” I had my little list of questions and I was ready. So all he said was, “You’re in the beginning stages of dementia.”
I was trying to calm my mother down and he was doing nothing and immediately reached for his prescription pad. I asked “Why are you even writing? What are you writing? We haven’t even gotten started,”
After he finished writing, he slid a prescription over to us. I asked what it was. He didn’t say anything, all while my mother was saying how she didn’t want to take any medications. […] I said, “It’s OK, it’s OK, you don’t have to take anything.” And he said, “She does if you want her to remember you.”
That wasn’t helpful. And I’m thinking about what to say, and I said, “You really don’t have to take it —” and that’s when he cut right into my sentence and said, “That’s what’s wrong with you people. You don’t really want help. You just want to complain.”
I can’t really explain what that felt like, but that’s when I really knew my mother wouldn’t be going to any appointments without me, because the only thing I was going to demand for her is that you respect her and don’t talk about her like she’s not right here in the room with us. And I was going to be her greatest advocate.
Being Patient: Tell us about finding financial support for your mother’s care. How did you work that out?
Veney: I found the community action waiver that helps people stay in their homes longer or in their community longer without going to a nursing home. By the time I put her name down, there were 23,000 people on the list in front of us. It took us eight years and six months to move up that list.
Between that time, my husband and I spent between $300 and $400 a month all the way up to $1,500 a month in that last year when she got selected for the waiver. While my husband was alive, that $1,500 was easier to get.
Every speech I gave, every book I sold, went totally to her. It went well and that was good for me! I think about people who I grew up with and you know other people that were my grandparents’ friends, you know, what would they have done? What happens to people who don’t have the resources?
Being Patient: What were some of the silver linings of your mom’s journey?
Veney: People lose a lot. What my mother did lose, which was a good thing, is that she was always anxiety-ridden when I was growing up. All of that kind of went out the window, and she tried new stuff and activities, and she was just free. And so Alzheimer’s wasn’t that bad of a thing for us, which I know sounds crazy, but she did forget a lot of stuff. Like, my dad left her for another guy — , who wouldn’t want to forget that?
Being Patient: You approached your mother’s dying process with joy. Can you tell us more about that?
Veney: We had the best time, even when she was dying. That’s so silly to sit around and be sad about it all the time. We’d sit and laugh to each other about absolutely nothing, and she would say, “That was funny!” even though we weren’t laughing at anything. It was cool.
When she died, I thought that I got everything I wanted other than she ain’t going to be here, which was sad. At the same time, she suffered a lot, too, more than I wanted. But she still had a lot of joy even when we weren’t giving her things to eat or drink at the end. She still had her Legos, too. And I show people a photo and tell them this is how you can die. Still smiling. Still doing lots of stuff.
I chose to focus on the things she could still do. I tried to always seize on that joy.