Thirty years.

Thirty long years.

Three seemingly endless decades…of helping care for her Mom living with Alzheimer’s and its many volatile, disruptive, and yet sometimes calming symptoms. Lori La Bey was 25 when her mother started displaying some odd behaviors. She was 55 when Dorothy died in 2014 at age 86.

In the between years Lori, the only daughter of three children, shouldered much of the responsibility for her mother’s care; she married; she gave birth to a daughter; she transitioned from a health care job to a successful real estate career; and through five of those years she helped care for her father with cancer.

(And I thought the 17 years our family lived through Alzheimer’s were alarmingly hard, starting when Martha turned 50 in 1997, while I was publishing our regional business magazine and our three kids were in high school and college.)

“Mom, in fact, was the first to start worrying about her memory,” says Lori. “She left the stove on, picked the phone up the wrong way, things like that. I remember one Christmas we went shopping in the mall that Mom knew inside out. But this particular year, she just sat down, staring like a deer in the headlights, and on the way home started repeating questions over and over.”

Lori’s father asked her to call their doctor of 40 years to discuss these memory issues. “But I was blown off,” she says. “In fact, the doctor’s nurse later called Mom and said, ‘Your whole family thinks you have Alzheimer’s,’ which isn’t what I said.” She in fact told the nurse that her mother thought she had Alzheimer’s and the family just knew something is very off. “This nurse’s call upset Mom to the point she locked herself in the bathroom and wouldn’t come out. It took me a couple of hours to convince her to.”

After ten years of living through such frustrating symptoms, a neurologist finally did diagnose Dorothy with Alzheimer’s; that was right after Lori’s father Dean was diagnosed with cancer.

Lori was 42 when she assumed full responsibility for the wellbeing and care of both parents. It was another four years before they moved into a nursing home. Meanwhile, she and husband Tom still had full-time jobs with daughter Danielle now about 8 years old. “Tom and Danielle both were wonderful emotional support during this time. My parents always felt Tom was a son rather than a son-in-law, and he felt the same about them.” (After nearly five years fighting cancer, her father died in 2001.)

*Lori, Tom, and Danielle with mother Dorothy*

Rather than grind Lori down, the pain and frustration of those 30 years forged a commitment in her to help others who live with dementia and their care partners. It’s a conviction born of her experience that someone with Alzheimer’s or dementia is no less human, that the consequent loss of mental faculties is not a loss of heart and soul.

As a result, Lori decided in 2009 to walk away from real estate and to redirect her attention not only to her mother but also to other families living with Alzheimer’s or other forms of dementia, whether locally or far from home.

Lori is now a full-time professional advocate, a graduate of the school of hard knocks, “sharing the lessons my mother taught me as we went through this 30-year journey together.” Hers is an “emotionally-based training,” Lori says—how to listen to a person with dementia; how to share; how to travel together; how to make sure their needs are met, whether at home or in a nursing home.

This self-described ‘advocate on steroids’ says, “We must educate and motivate all parties involved—staff, families, professionals, and the public—to join forces around the world to improve our dementia care culture.”

“I speak, train, and consult families, professionals, and companies to connect on deeper levels,” Lori told Maria Shriver in her Sunday Paper newsletter, which in 2016 honored her as “An Architect of Change.”

Others have recognized Lori’s expanding efforts as well: Oprah Winfrey honored her as a “health hero” in the January 2018 issue of O Magazine. And in 2012 Dr. Oz’s Sharecare health site ranked her No. 1 of the Top 10 Online Influencers in Alzheimer’s disease.

Lori’s advocacy operates today on several platforms, both online and in person, while her “central clearinghouse” is her website Alzheimer’s Speaks, which opened in 2009.

In a conversation with Sharecare, Lori was asked how a caregiver can respond to the confusion or resistance that often comes from one living with Alzheimer’s: “Three small questions make a big difference: Are they safe? Are they happy? Are they pain-free? We shift our mindset by asking these questions. If a person with memory loss asks us the same question 45 times in ten minutes, it’s irrelevant—because they are safe, happy, and pain-free.”

“These three questions can help care partners to focus on the quality-of-life issues, on what’s truly important to their loved ones. They also help the care partner slow down, breathing in a calmness that often can calm their partner.”

Lori’s goal “is to shift the caregiving culture from crisis to comfort.”

Crisis.

Comfort.

Crisis. To. Comfort. Lori would be among the first to tell you that this is easier to talk about than to do. But it can be done.

I’ve heard from enough others to know that it is being done, step-by-step: Geri and Jim Taylor ... Dr. David Compton ... Rev. Cynthia Huling Hummel ... Bob Beckett ... Lynda Everman and Kathy Siggins ... Dr. Steven Cohen … and Meryl Comer, to name a few.

If our family’s experience echoes that of others, this shift from desperate chaos to a path that can be filled with meaning and purpose is not a one-time, formulaic learning. It’s an ongoing process—three steps forward, four back; fall on your face, get back up; three steps forward, none back. You can get better at it but you never “arrive,” because conditions, attitudes, and behaviors are constantly changing. And this growth process can unfold along a variety of paths, as shown by Lori and the others above.

“It’s not about striving for perfection, which adds so much stress on multiple levels,” Lori says. “Rather, it’s about making progress with each new moment we are given.”

I met Lori ten months ago when she interviewed me on her weekly radio show. Since then, I’ve followed her more closely and I’m amazed by all that she’s been able to do:

2010: She opened a YouTube channel;
2011: Launched Alzheimer’s Speaks Radio and podcast;
2011: Helped introduce what is thought to be one of the country’s first Memory Cafes;
2012: Launched ‘Dementia Chats’, conversations with those living with dementia;
2013: Working with The Lutheran Home Association, she launched in Watertown, WI, what’s thought to be the first dementia-friendly community in the United States.
2015: Sponsored and helped launch the film His Neighbor Phil, now titled A Timeless Love. “This film is 90 minutes long, and the conversation it gives rise to afterward can last just as long, or longer.”
2015: Helped nearby Roseville, MN, become one of the nation’s leading dementia-friendly communities.
2019: Introduced a Dementia Quick Tips feature, 2-5 minutes long, with Lori focusing on some issue common to those living with dementia. “These are things I wished someone would have shared with me as I walked alongside dementia.”

In the meantime, she speaks to professional and personal caregivers and health care groups all over the country.

When I first saw Lori’s website I was overwhelmed by all the different platforms through which she delivers her message. But she’s clear that she’s not trying to be all things for all situations. For instance, she’s not trying to curate all the latest news and research about dementia that you can find on UsAgainstAlzheimer’s and other sites. And she notes that the Alzheimer’s Association has solid information and support resources for those new to the disease, as does the Alzheimer’s Foundation.

I ask Lori, “Through the 30 years of caring for your mother what gave you the most hope?”

After a moment’s thought, she responds: “I was sustained by a love for my mother, and her love for me. Also by the team that my father and I had become.”

And what distressed you the most? Without hesitation she says, “The lack of empathy and knowledge and care by the health care system. And it hasn’t changed all that much today.”

It’s out of this yin and yang of her experience that Lori was able to develop what she calls ‘Emotional Based Training’. Such training draws on stories, videos, games, music, and humor to tap into life lessons while trying to reach the participants on a deeper level. The goal of this training, she says, is to get people to look past the task at hand. It seeks to get participants to feel the impact of their actions and choices on one who lives with dementia…to think about how they would like to be treated if they were the one with dementia.

*Lori leading an interactive training session*

I posed this hypothetical question to Lori: “What would you tell me if I came up to you at a meeting and let you know my 50-year-old wife was just diagnosed with Alzheimer’s? Our three children are still in high school and college. This hasn’t turned our world upside down; our world was imploding before us.”

The following conversation ensued…
Me: I felt like Martha and I were tossed out of a plane 10,000 feet up with nothing to hang on to but ourselves.
Lori: You’re not alone. People often feel abandoned when hit with this news. So it’s always good to try to slow down and breathe. One good source of support today is the Alzheimer’s Association Helpline. (800.272.3900). Their trained staff is available 24 hours a day, seven days a week.

Me: Such a service may have been available when Martha was diagnosed in 1997, but I don’t remember it.
Lori: Their services and support have vastly improved since then, and today you can find much more help online. Other good places to look are the directory of Memory Cafes. And your local chapter of the Alzheimer’s Association should help you find support groups. Also more and more churches and senior citizen centers are being pro-active with dementia issues. I even know of support groups in high schools for kids dealing with dementia in their families. Also, check with your city or your local Agency on Aging to see if a Dementia-Friendly effort has been started.

It’s important to get connected with those living with dementia and their care partners. You can learn a lot from each other as well as offer each other emotional support. Find a group you feel comfortable with.

Me: What else should I do?
Lori: Ask for help. Be specific with your requests, and don’t try to judge the outcomes. When I began caring for Mom, my brothers said they wouldn’t help because they felt they couldn’t meet my standards. I was pretty much a perfectionist in those early years.

Me: I too had problems with perfectionism. I really wanted to be in control of our situation. Was there a time you were able to let this go?
Lori: Yes. It was fairly soon after I discovered I couldn’t do it all. But I probably thought it was sooner than others thought. (We both had a good laugh). I’ve learned that I just can’t control every situation and behavior. Nor am I supposed too!

With that, Lori shares a quick checklist for care partners to consider. Don’t try to do these all at once, she says. Do a few at a time as you become more comfortable:

1.    Enable your loved one; don’t disempower them. Slow down and realize that something doesn’t have to be done in two seconds. Don’t try to fix a particular behavior, be supportive.
2.    Laugh at yourself. This is really important. And sing and dance and play music with your partner. These can change our body’s chemistry, yours and your partner’s.
3.    Pay attention to your partner’s non-verbal communication. We too often are focused on just the verbal. Learn better communication techniques; you can find some on YouTube.
4.    Listen to your body. This is huge. If we don’t, we’re creating another crisis yet to come.
5.    People want to help, so stay connected with friends and family, with and without your partner. Some current friends may not stick, but others will show up. Continue to live your life as best you can.
6.    When your partner is content and happy, you be content and happy. When they take a nap, be like a new mom and take a nap at the same time. Your list of things to do can wait.
7.    Finally, share what you have learned with others. You never know, you could be helping someone deal with an issue that’s completely different from dementia. A lot of issues are common to a wide range of caregiving needs.

Thank you, Lori, for sharing your story and your hard-won insights. If you would like to contact Lori La Bey, she can be reached at (651) 748-4714 or Lori@AlzheimersSpeaks.com.

Thanks for tuning in,
Carlen Maddux
carlen@carlenmaddux.com
www.carlenmaddux.com

PS1 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, there’s no charge; just click here.

PS2 My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be ordered from any bookstore or found on Amazon. I share our family’s 17-year odyssey of living with this disease. My high-energy wife Martha was 50 when diagnosed; I was 52. Our children were still in high school and college. But Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded before us, sometimes in strange and surprising ways, other times in the most ordinary of ways.