Rodger That

oks Kenny serves as executive director of the Women’s Network at UsAgainstAlzheimer’s. She also directs the organization’s consumer­–facing brain health education and engagement programs as the general manager for BrainGuide, the organization’s newest initiative focusing on bringing state-of-the-art technology to consumers across the country.

 

Brooks has spent her career applying marketing and business know-how to social causes and has become a national speaker on women’s brain health, Alzheimer’s disease, and caregiving.

 

“We know the tsunami is coming, and it's time to start a new conversation, which is really what inspired us to develop this new platform called BrainGuide. We want it to serve all communities and empower people whether they're worried about their own brain health, they have concerns for a loved one, or perhaps are caring for someone living with Alzheimer's disease,” Brooks explains. “We wanted people to have a place to go that gives them the next step in their journey because this is such a challenging path and it's a path that is not always well understood. So, we're hopeful that BrainGuide will allow people to get to a place where they are having earlier discussions about Alzheimer’s, getting earlier detection, and correct diagnoses.”

 

“When we're talking about Alzheimer's disease, we're talking about eventually having it affect sight, hearing, balance, and reasoning. So, the sooner we can get a diagnosis, the sooner we can understand how to deal with the behaviors and have a team in place to help caregivers do what they need to do,” Bobbi adds.

 

“The problem of brain health is so vast in terms of the lack of detection, diagnosis, the lack of a common narrative, and conversation. We must reduce the stigma of mental health to ensure that we can DETECT DEMENTIA at its earliest point, and I think that it starts with our kids,” Brooks says.

 

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Brooks Kenny talks with Bobbi & Mike about her experience caring for her mother-in-law with Alzheimer’s & BrainGuide, a first-of-its-kind platform that empowers people to manage their own or a loved one’s brain health.

“If we can bring people into a discussion around health, wellness, & awareness for the risk factors of dementia, that will help us conquer this challenge,” Brooks says. “Alzheimer's disease is the only disease in the top 10 leading causes of death for which there is no treatment

Linda Burhans is a national speaker and radio show host dedicated to the mission of caring for caregivers. As an expert in caregiver advocacy, Linda has facilitated over 1,500 support groups, speaking engagements, and workshops for caregivers.

 

A common discussion point with those who care for someone with dementia (caree) is the importance of scheduling daily activities, which provide a sense of purpose for their loved one. Individuals with dementia still understand that helping out, being busy, lending a helping hand, giving to other people, being listened to, and feeling that they belong are important indicators of quality of life.

 

“We all need a purpose. Especially people with dementia and we need to help them with that,” Bobbi says.

 

“One of the most important things a family member can do is to share their loved one’s story. By sharing their hobbies, likes and dislikes, passions and pastimes, you can create an environment in which your loved one will thrive,” Linda notes.

 

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Sarahbeth Persiani is the author of Run, Walk, Crawl ­– A Caregiver Caught Between Generations. For 5 years, Sarahbeth was the primary caregiver for her father, who had dementia, while working full-time and taking care of her own family.

 

As the founder of her business, We Are Sharing the Sun, she helps companies create a supportive culture for family caregivers and provides education, support, and encouragement for working professionals who are themselves in the sandwich generation caregiving squeeze.

 

“One of the biggest suggestions is making the workday repeatable and predictable so that people are able to know that expectation and plan for it,” Sarahbeth says.

 

“When I had a staff, I would ask, How's it going? How's your mom doing? How's your dad doing?  How are you doing with it? Because just letting them know that I recognized the fact that they had something else going on, that I understood, and that if they needed something they didn't have to feel embarrassed, ashamed, or scared to come talk to me about it, made a world of difference to my team,” Mike said.

 

“When organizations ignore caregivers, they lose talent, engagement, and productivity,” Sarahbeth explains. “Corporate executives in HR are open to talking with people who are having challenges on how best to continue to keep their jobs and take care of someone at home.”

 

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Sandy Mangis, otherwise known as The Mindset Muse, is an author, blogger, and podcaster who specializes in giving love, support, and guidance to those who unexpectedly find themselves in the role of caregiver.

 

“Caregiving is something that people just get thrown into. And as you guys know, a lot of us get thrown into it. We don't like it, we’re opposed to it, we feel forced,” Sandy explains. “I've said that word many times and I get a lot of flak saying that but it's the truth. I mean many people do not want to do this.”

 

With over 45 years of experience in this field, she helps women live through the adversities of being a caregiver, and juggling emotions, career, family and schedule

 

“I take that person, sit down with them, and look at the whole situation. It's amazing how much people are capable of a lot more than they think they are.  They just have to have that mindset to bring them that strength,” Sandy says.

 

“There are a lot of resources out there, so we just have to find the right ones,” Sandy adds. “I think if you can help someone dig down deep inside themselves, they'll find that they are a lot more capable than they thought they were.”

 

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Tony Copeland-Parker was a professional pilot/manager for 37 years. When he retired, he began writing his blog, PlayHard-HaveFun.com. Since then, he and his partner Catherine have traveled to 82 different countries. They have run at least a half-marathon in thirty-five countries and on all seven continents.

 

When Tony and his partner Catherine were in their 50’s, they found that he needed a heart-valve replacement, and she had early-onset Alzheimer’s. They both had a history as endurance athletes, so their reaction to the news was to sell their home, retire from their jobs, and become nomads, running marathons and half- marathons all over the world.

 

“It's amazing the number of conversations that we've had with folks where you will be sitting around the table, talking, and they start to notice something a bit odd, you know, about Catherine,” Tony explains. “So she just straight-up says, ‘I just want you to know I've early onset dementia and I might be a bit confused when you ask me a question.’ The conversation then turns to others talking about their aunt, uncle, mother, or sister who has dementia. This disease permeates throughout society.”

 

Many people with early onset are in their 40s and 50s. They have families, careers, or are even caregivers themselves when Alzheimer's disease strikes.

 

“A lot of people look at early onset Alzheimer's as a death sentence. But they are forgetting about the 12 years or so that they are going to have after the diagnosis. Catherine’s been like this for seven years, and you know, she's going be around for quite a while,” Tony says. “I've heard that she's probably going to die from something else, so we might as well just go ahead and make the best of it, and that's what we're trying to do.”

 

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Deborah Harlow was the youth caregiver for her father, from age 12 to 24. Then she provided long-distance care for her grandfather, grandmother, mom, and adult brother as a ‘sandwich caregiver’ even as she was raising her young daughter. She is passionate about working with youth caregivers and Gen-X women in navigating the caregiving journey with joy as their compass and love as their guide.

 

Deborah is a certified mediator in California, focusing on family conflict resolution and youth peer resolution; a certified GirLife Empowerment facilitator; and certified women’s circle facilitator.

 

“We can't avoid death,” Deborah explains. ”It’s part of the cycle of life so the more that we can start to have conversations, including the difficult ones, the healthier we’ll be. When someone passes on it's actually a sacred transition, a part of life.”

 

“Another part of death that caregivers deal with is the feeling that they want it to be over. There comes the time that you think I just want it to be done, which is followed by a tremendous amount of guilt because it's almost like you're wishing for the person to die. But in effect what you're wishing for is the pain to stop,” Deborah says. “You must separate the individual from the experience. Your love of the individual needs to go into its own sacred container, separate from the experience of the illness.”

 

“I think it helps people understand that their feelings are normal and natural. It's OK to feel the way you do.” Bobbi says.

 

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Jennifer Lee lives in Alabama with her husband, Chris, and their six children, who are between the ages of 14 and 25. Before her diagnosis with primary progressive aphasia(PPA) in 2017, she had worked as a high school English teacher and media specialist for 17 years.

 

PPA is a neurological syndrome in which language capabilities become slowly and progressively impaired. It is caused by neurodegenerative diseases, such as Alzheimer's disease or Frontotemporal Lobar Degeneration.

 

“I saw four different neurologists and had a series of cognitive tests done in two-hour sessions. In 2018, I was officially diagnosed,” Jennifer explains. “Now, sometimes when I try to speak, nothing comes out. Sometimes it’s a guttural sound that comes out, or nothing at all. Even when the words are in my mind, I can’t get them to come out of my mouth. Sometimes it feels like my mind is buffering.

 

Family members are often the first to notice subtle changes in behavior or language skills. It’s important to see a healthcare provider as early as possible.

 

“Some of the things I started to experience were that I started to slur my words or mix up the front and back of words. My kids will tell me I talk like Yoda, where my sentences are inverted. I often think of the words, but then I put them in the wrong places,” Jennifer says.

 

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Kathy Koenig, M.S., is a Caregiver Coach and Consultant. She has been a caregiver for family and friends, both local, and at a distance. From those experiences, she knew she wanted to create programs to help others find solutions and satisfaction in caregiving.  She is certified to teach caregiver programs, and presented at national conferences. Her goal is to help caregivers find manageability, ease, and joy in caregiving.

 

“Sometimes caregiving is so overwhelming that you're thinking that you don't know what to do.  But you realize that you do know how to do your job. It reinforces that sense of strength as an individual. Very often for us, our co-workers become family, and that's where the fun is, so being able to go there or have those relationships helps take the pressure off,” Kathy says.

 

“Ideally I would like to see a day center for people with dementia in the workplace similar to the childcare centers for their working employees,” Bobbi says.

Kathy Koenig, M.S., is a Caregiver Coach and Consultant. She has been a

caregiver for family and friends, both local, and at a distance. From those experiences, she knew she wanted to create programs to help others find solutions and satisfaction in caregiving.  She is certified to teach caregiver programs, and presented at national conferences. Her goal is to help caregivers find manageability, ease, and joy in caregiving.

 

“Sometimes caregiving is so overwhelming that you're thinking that you don't know what to do.  But you realize that you do know how to do your job. It reinforces that sense of strength as an individual. Very often for us, our co-workers become family, and that's where the fun is, so being able to go there or have those relationships helps take the pressure off,” Kathy says.

 

“Ideally I would like to see a day center for people with dementia in the workplace similar to the childcare centers for their working employees,” Bobbi says.

 

“We now see what people's lives are like a little more fully due to the pandemic. We see pets running through rooms, children in the background, but we also see people caregiving in their homes, so it's not in the shadows anymore,” Kathy explains.  “We now have over 53 million reported caregivers in the United States. and with this pandemic, that's only accelerated.”

 

Mike recalls,” At the height of my dad's illness, I had a supervisor that was amazing. I told him, ‘hey you know I got this situation home with my dad and he looked me dead straight in the eye and said, ‘Mike, just give me a heads up about what you need to do. Even if it's only a 5-minute heads up that you're leaving.’ I really appreciated that sentiment.”

 

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Barbara Conley is an independent consultant who supports individuals in their active family caregiver role, through coaching and resource navigation. Her caregiving path began over 45 years ago, when her younger sister was affected with bacterial meningitis as an infant, resulting in spastic quadriplegia, cortical vision impairment, and non-verbal communication abilities. Since then, caregiving has remained a strong presence in her life, as she actively assists her parents in caring for her sister, and her husband who is a lower limb amputee and military veteran.

 

“I come from a long line of caregivers. Both my grandmothers were caregivers, my mother, and now myself, so I like to think I'd get to it somewhat honestly,” Barbara says. “There's some connection there through the generations. It's not something that I have to force, as it comes very natural, to me.”

 

Bobbie points out that, “Family takes care of family. The big families that we came from naturally did that.”

 

“Caregiving is a power and gift that has taught me more about life and living than any other experience or any paycheck ever could have. It’s taught me to take each day as it comes and to celebrate the small wins,” Barbara says.

 

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To find out more about Bobbi and Mike or the inspiration behind this podcast, Rodger That, head over to rodgerthat.show.