Season 2. Get inspired by our ever-growing line-up of guests.
Each week, Bobbi and Mike host thought leaders who share invaluable insights and helpful tips on the challenges caregivers face.
Looking for a particular guest or topic?
EP 112 :: Inviting Hospice in Before You Think You Need It :: Kathy Peters
Family caregiver Kathy Peters joins Bobbi & Mike to talk about employing hospice care for those living with dementia—even sooner than one might expect. Tune in as they empower caregivers to “shop around” for the best agencies in their area and share resources that can help them do so.
Through caring for her father-in-law with dementia, Kathy learned the importance of sharing the caregiver role and responsibilities with a care team. As his primary caregiver, she learned that creating a team made up of family, friends, hospice and professional agencies, she could confidently know her loved one’s needs were being met and she didn’t have to shoulder the burden alone. Her life lessons are truly powerful, just like this episode.
Kathy Peters was part of a team of family caregivers for her 86-year-old father-in-law, a team that included her husband, sister-in-law, and out-of-pocket caregiver, in order to keep him at home on his farm while in late stages of Alzheimer’s. Suddenly and unexpectedly thrust into the role of caregiver, Kathy spent much time researching Alzheimer’s Disease and ways to make her father-in-law’s quality of life the best it could be while being cared for at the farm that he had managed since he was 17 years old. While seeking resources, Kathy believed that her loved one was not far enough along to qualify for hospice assistance. She was urged by a stranger, a fellow home caregiver on social media, to call hospice at least for an informational meeting. She reached out to hospice and was amazed at how helpful this little-known “before end-of-life” resource was during her loved one’s final weeks of life.
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EP 111 :: Navigating Dementia in the African American Community :: Dr. Kalisha Bonds Johnson
In this thought-provoking episode, Bobbi & Mike talk with Dr. Kalisha Bonds Johnson, a nurse practitioner, researcher and assistant professor at Emory University. Dr. Bonds Johnson’s work focuses on improving health outcomes for African Americans living with dementia and their families. Tune in to learn how factors such as environment, family situation, and patient/provider relationship all play a part in managing our health.
Discussing the barriers African Americans face in getting treatment for dementia is not an easy conversation to have—although it is of the utmost importance. Dr. Bonds Johnson does just that with compassion, authenticity and discernment and truly opens our eyes to the potential biases can play in the diagnosis process, as well as the medications prescribed. Join us as Dr. Bonds Johnson shares her insights on this very sensitive subject.
Find out more about Kalisha on here and follow her on Twitter and Facebook.
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EP 110 :: Dementia Care :: Finding Solutions :: Pam Ostrowski
In this episode, Bobbi & Mike talk with dementia consultant and family guide, Pam Ostrowski. She shares how caregivers can utilize different levels of care for their loved ones living with dementia and empowers us to think strategically about milestones that may signal a transition is necessary.
As the founder of Alzheimer’s Family Consulting, Pam truly understands the fear, guilt, and confusion caregivers can experience, so the tips she shares with Bobbi & Mike in this episode are invaluable. It’s packed with practical advice on how to navigate the good—and bad—days of caregiving while maintaining your loved one’s dignity.
Dementia consultant and family guide, Pam Ostrowski, helps family members on the dementia journey manage and cope with the overwhelming challenges, tasks, emotions, and decisions that they'll have to make in the coming years. She provides invaluable guidance based on her own 14-year dementia journey with her parents as well as from her extensive dementia training. Pam is the founder of Alzheimer’s Family Consulting, a family consultant, speaker, Certified Senior Advisor, and the author of the highly rated "It's Not That Simple: Helping Families Navigate the Alzheimer's Journey" available on Amazon and other book platforms.
Find out more about Pam on her website and follow her on Twitter and Facebook.
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EP 109 :: Alzheimer’s & Women’s Brain Health :: Lynn Posluns
Bobbi talks with Lynn Posluns, founder and president of the Women’s Brain Health Initiative. Lynn shares with us the six pillars of brain health, giving us proven ways to reduce our risk of dementia, as well as habits to break that contribute to cognitive decline. Find out how women’s hormones affect brain health and how we actually have a lot more control over our cognitive destiny than we may realize.
It may be hard to believe, but until recently, research on women’s brains has been limited due to the fact that their brains are just more complex than their male counterparts. Sorry, fellas, it’s true. Tune in as Lynn Posluns of Women’s Brain Health Initiative—the global foundation raising money for research and education to combat women’s aging brain disorders—shares more interesting tips like how indulging in a glass of red vino and a little dark chocolate can boost brain function. “Don’t forget the wine!”
Find out more about Lynn and her work with The Women’s Brain Health Initiative on her website and follow her on Twitter and Facebook.
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EP 108 :: Entering the world of Dementia Patients Through Art :: Siobhan McDonald
Bobbi & Mike chat with professional artist and Certified Dementia Practitioner, Siobhan McDonald, about her work connecting and communicating with dementia patients. With the use of art and photographs as a means to engage someone with memory loss, Siobhan is able to draw on the person’s creativity and imagination to trigger special memories. With humility, compassion and respect, she shows us how we can more effectively encourage those living with dementia to express their unique stories and experiences.
In this episode, Siobhan McDonald shares techniques that can help recapture memories of those with dementia--as well as create along the way--by spending quality time looking at photographs, artwork or even reading a book together. Her gentle, curious spirit helps patients come alive through tapping into old memories and engaging their creativity and imaginations. Siobhan gives us the guidance that instead of futilely trying to pull a person with memory loss back to our world, we can meet them where they are--and, if we are lucky—experience more lucid moments with our loved one.
During the show, Siobhan refers to several pieces of artwork she uses with dementia patients. One of these is Doris Lee’s Thanksgiving.
"Through art alone are we able to emerge from ourselves, to know what another person sees of a universe which is not the same as our own and of which, without art, the landscapes would remain as unknown to us as those that may exist on the moon." —Marcel Proust
Find out more about Siobhan on her website and follow her on Twitter and Facebook.
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EP 107 :: The Six Stages of Caregiving :: Bobbi & Mike Carducci
In this informative episode, Bobbi & Mike take a deep dive into Denise Brown’s Six Stages of Caregiving. Throughout the caregiving journey, these tips and insights can help any caregiver manage what they must face today and better prepare for what is yet to come. Once armed with a better understanding of the role, caregivers can focus on making the experience more meaningful for the one they are caring for, their family, as well as themselves.
Understanding what to expect by borrowing the learnings of experts can help anyone find success, caregivers included. So, by guiding us through the Six Stages of Caregiving and sharing their own experiences as caregivers, Bobbi and Mike shed light on strategies to help navigate this challenging space . By understanding where a caregiver is within the six stages of caregiving, helps one gain a sense of empowerment and an even deeper understanding that they are not alone. This truly is a powerful episode that should not be missed.
Find out more about Bobbi on her website and follow her on Twitter.
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EP 106 :: Geriatrics and Dementia Care:: Dr. Aaliya Amer
Bobbi & Mike talk with Geriatrician and Primary Care Physician, Dr. Aaliya Amer. A caregiver for both her grandmother and mother with dementia, Dr. Amer understands the needs of her patients and those who are caring for them. From understanding family traditions and customs to balancing quality of life and safety, she believes Geriatricians should take the whole person into consideration as they provide treatment for patients with dementia. This conversation opens our eyes to the importance of taking a holistic approach to caregiving and how incorporating the insights of a specialist can be so beneficial in your decision-making.
Dr. Aailya Amer brings her warm, caring presence to this week’s episode. As a Geriatric and family practitioner, she shares her approach to dementia treatment including diet, exercise, medicine and stress relief, plus a few tips on how to care for your loved one—as well as yourself—throughout the aging process.
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EP 105 :: Rebuilding Connections One LEGO Brick at a Time :: Loretta Veney
This week Bobbi & Mike talk with author, inspirational speaker and caregiver, Loretta Veney. When caring for her mother with dementia, Loretta found that her mother had more lucid moments when they built with LEGOs together. So, Loretta took these valuable lessons and developed LEGO themed events for caregivers and those with dementia. Her story is one of resilience, forgiveness and meaningfulness, and infectious joy will have you rolling with laughter, right along with Bobbi & Mike.
“When you find something that works, you share it!” Those are the words of Loretta Veney, selectee for Trailblazer of the Year by Johns Hopkins Medicine in 2019, which she earned for developing a system using a simple child’s toy to help rebuild lost connections between those with dementia and those who care for them. So, join Bobbi & Mike to learn about Loretta and her amazing journey of innovation and perseverance.
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EP 104 :: Loving Them Forward :: Christina Keys
Bobbi & Mike talk with Christina Keys, founder of Loving Them Forward. Christina had a successful career, traveled, was financially stable, healthy, and happy then on March 16, 2013 her mother had a stroke and was given a 1% chance to live. Christina instantly went from career woman to caregiver and within 4 years of caregiving for her mother, she was financially, emotionally, mentally, and physically bankrupt. The doctors told Christina she would be lucky to live 6 months – her body was literally shutting down from the stress of caregiving and trying to do it alone. Hear how Christina reimagined self-care and how she is saving herself and her mom simultaneously.
After 4 years of strenuous caregiving, Christina Keys had a choice to make--figure out how to change her life and live while caring for her mother or give up and start making arrangements on how her mother would be cared for after her death. She chooses to live and not only change her life but now helps to change the lives of caregivers through Loving Them Forward. Turning a mess into a message, her mission is to make sure caregivers everywhere are seen, heard valued, appreciated and are Never Alone.
You can learn more about Christina on her website and follow Loving Them Forward on Facebook.
Loving Them Forward will be giving away 1500 gift bags for caregivers this holiday season. Go here to donate!
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EP 103 :: Men Step Up as Caregivers :: Stephen Peck
Bobbi and Mike talk with Stephen Peck, founder of Caring Men Global, about how men can step into their roles as caregivers when the need arises. Once a caregiver for his wife who passed away from cancer, Steve now works to relieve the stress of men who are shouldering intense caregiving responsibilities towards their loved ones. Steve brings resources together so that caregivers can easily access information and caregiver support, allowing them to focus more time and energy on the care of their loved one.
Breaking down the walls of traditional roles, Steve gives men the tools needed to transition into and persevere as a caregiver. Steve cultivates empathy and compassion to help those who are directly or indirectly trying to fight their way out of the challenges of a difficult diagnosis. Bobbi and Mike’s discussion with Steve reveals how important it is for caregivers to be comfortable in their roles and that courage, empathy and powerful advocacy are skills that can be harnessed and developed through the caregiver experience.
You can learn more about Steve on his website and follow Caring Men Global on Facebook.
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Bobbi & Mike talk with Keisha Jackson, Founder of Encouraging Stories, a collaborative space where caregivers, carees, and creative artists find community through expressing “emotion as art.” As a caregiver for her mother and brother, Keisha experienced the joys and sorrows of caregiving and found healing through storytelling, music, and poetry and sharing these creative expressions with others.
After her mother passed away, Keisha found that “connecting with others who understood my faith, pain, frustrations, humor... was therapeutic. We'd laugh, pray, cry, pray, embrace, pray. We'd nod in agreement and finish each other's sentences”.
Keisha Jackson is a retired Air Force veteran, creative writer, storyteller, and a family caregiver advocate. She is also a guest panelist on America’s Heroes Group Military Families Matters Caregiver radio show, writes family caregiver articles for the Chicago Crusader Newspaper, is a co-creator of She Vet Caregivers, and is an AARP, Northern Virginia Community Ambassador and Speakers Bureau volunteer.
You can learn more about Keisha on her website.
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Dr. Chiadi Onyike talks with Bobbi and Mike about the various forms of dementia, how they manifest, and how we can best support people who are living with it.
Dr. Chiadi Onyike is an associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. His practice focuses on conditions that develop in midlife or earlier, including frontotemporal dementias, young-onset Alzheimer diseases, prion diseases, leukodystrophy, and other atypical conditions that cause cognitive and behavioral impairments and dementia.
You can learn more about Dr. Onyike on his website and follow him on Twitter.
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Susan Dickinson, MSGC, is the CEO of the Association for Frontotemporal Degeneration (AFTD). A genetic counselor, she brings more than three decades of experience facilitating communications among lay, scientific, and medical communities.
FTD is the most common form of dementia for people under age 60. It represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain.
“The experienced caregivers and care partners are the experts on day-to-day management of any form of dementia and the ability for them to come together with people who are ahead of you on this journey or who have walked the path before is incredibly valuable.” Susan explains.
You can learn more about FTD and AFTD on the AFTD website and follow AFTD on Facebook, Twitter, and Instagram.
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Dr. Chris Price has a wide-ranging discussion with Bobbi and Mike touching on everything from the initial diagnosis to accepting that death is inevitable.
Chris Price is a family practice physician whose work with hospice has taught him that those who change their views about dying seem to live so much better.
His first novel, Allison’s Gambit, was inspired by patients of his who have been caregivers to those with dementia and his continued observation that these family members often end up with tremendous guilt.
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Marianne is a registered nurse, author, and co-founder/manager at AlzAuthors.com. When not writing she works as a campus nurse at a community college.
“What I would encounter in many cases are families that were completely over their head and not tapping into the caregiving resources that were available to them. Across the country, people can find different agencies to help, whether it's an Alzheimer's Association office or a state eldercare office,” Marianne says. “Caregivers are usually too busy and overwhelmed just trying to get through every minute of the day that they don't have time to investigate what assistance is available in their community.”
You can follow Marianne on Twitter and Facebook.
AlzAuthors.com is the web’s most comprehensive collection of books and blogs on Alzheimer’s disease and dementia. Discover hundreds of inspirational stories which span all Alzheimer’s and dementia stages to offer you insight and understanding.
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EP 97 :: How to Process Caregiver Guilt :: Jennifer Richey
Jennifer has over 10 years of experience caring for her parents and grandfather. She launched her own business, Brave Caregiving, in 2019, where she helps caregivers who are struggling and professionally. She is a certified life coach, as well as a Certified Caregiving Consultant, Educator, and Support Group Facilitator.
“There is so much to do. Appointments to coordinate. Supplies and equipment to order. Medications to track. People to keep an eye on. Forms to fill out. Asking for help can feel like a chore of its own. How can any one person possibly manage it all without some amount of resentment and guilt?” Jennifer says.
“You constantly feel like you are living your life waiting for the other shoe to drop. There’s so much waiting, uncertainty, and guilt,” she explains. “I know when I was taking care of my parents, I felt very trapped, like you can’t leave, or take a vacation.”
You can learn more about Jennifer and Brave Caregiving on her website and follow her on Facebook and Instagram.
Please don’t forget to follow, download, and review to share your thoughts about the show!
EP 96 :: Dementia is a Family Issue :: Laura Mosqueda M.D.
Laura Mosqueda, M.D., talks with Bobbi and Mike about geriatric medicine, elder abuse, and caregiving for the elderly and underserved.
Dr. Mosqueda is a professor of Family Medicine and Geriatrics at the Keck School of Medicine at USC. She is a widely respected authority on geriatric and family medicine, elder abuse, and care of the elderly and underserved.
“I’ve always had a real affinity for older adults, even as a little kid,” Laura says. “Part of it, I’m sure, is because I had wonderful grandparents.”
“I still remember vividly in my practice the time a patient’s husband kept saying, ‘Well, she should do this and she's just not trying hard enough.’ I couldn't get through that she was trying and finally I said to him, ‘All right, I want you to stand on this table and flap your arms as hard as you can and fly. He said I can't do that, and I said, ‘No, I just want you to try and if you tried harder, I'm sure you could do it.’ We made it a little bit lighthearted, but I said, ‘That's what it's like, she really can't remember,” Laura explains.
You can follow Dr. Mosqueda on Twitter.
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EP 95 :: Dementia in the Workplace :: Christopher Szpryngel
Christopher Szpryngel talks with Bobbi and Mike about how to help support people working with dementia and their care partners.
Christopher A. Szpryngel is an associate faculty professor in the Malcolm Baldrige School of Business at Post University and an adjunct professor at The University of Bridgeport. Chris is completing his PhD in Human & Organizational Systems at Fielding Graduate University and his dissertation is titled Dementia in the Workplace: Employee experience after diagnosis.
“Everyone's dementia is different, everyone experiences dementia differently, and you never really know what can happen. If you think about it from a safety perspective, you want to protect not only the employee but also the employees working with that employee who has dementia,” Chris says.
Visit Chris’s website for more information and you can follow him on Twitter and Facebook.
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EP 94 :: Breathing can Calm :: Patty Collamer
Patty Collamer talks with Bobbi and Mike about the simple steps of putting words to one breath in and then to one breath out. In the pause between is a moment where peace and happiness can be found.
Patty is a retired teacher and became a certified yoga instructor in 2017. She is also the author of Grace on the Ledge, a memoir of her childhood growing up in the ’60s and later caring for her mother after a stroke, and Grammy’s Eyes, a children’s picture book about a family adapting to changes caused by a stroke. Her most recent book is called One Simple Breath: A Caregiver’s Guide to Inner Peace.
Patty introduces Bobbi and Mike to the four Brahmavihārās found in ancient Buddhist texts and uses her experience as a caregiver to explore the virtues of loving kindness, compassion, joy, and even-mindedness that exist in all of us.
The Brahmavihārās are a series of four Buddhist virtues and the meditation practices made to cultivate them.
“I started breathing in and put an affirmation at the top like, “I'm still here.” I breathe out and think, “I don't know how I'm going do this.” I breathe in and say, “I can't believe she said that,” and I breathe out and say, “But I'm still here.”
You can follow Patty on Instagram and find her books on Amazon.
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EP 93 :: Dementia: A Gradually Acquired Disability :: Emily Ong
Emily Ong talks with Bobbi and Mike about her experiences living with mild cognitive impairment and her global advocacy activism efforts for dementia: rights, rehabilitation, employment, and enabling a supportive environment.
Emily is a passionate advocate for the rights of those with dementia and a prominent activist in the global dementia community. As one of the newly elected members of Dementia Alliance International’s (DAI) Board of Directors, she shares how her advocacy started and her hopes to make an impact for those affected by the condition. She was diagnosed with mild cognitive impairment with the probability of young-onset dementia in 2017.
DAI believes that in all matters concerning dementia the philosophy should be, “Nothing about us, without us.” They believe that many persons with dementia are very capable of representing themselves.
“Our work on claiming the human rights for all people with dementia means we are legally entitled to be included, and not just consulted, or represented by others. We are also entitled to the appropriate disability support that any other persons or groups of disabled people are afforded,” Emily says.
DAI seeks to represent, support, and educate others living with the disease and the wider dementia community.
“Without the support from my family and the new communities where I find solace in it is rather unlikely that I can be so emotionally strong and positive as I am now. My new friends taught me that there’s still life after the diagnosis because life can still be purposeful and beautiful with dementia,” Emily explains.
You can find Emily on Facebook and Instagram.
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EP 92 :: It is Never too Early to Start a Conversation About Your Future Medical Care :: Laura Pilati
Laura Pilati talks with Bobbi and Mike about the importance of starting a conversation with your loved ones about their future medical care wishes and then creating, and following, a care plan that everyone has agreed to.
In her role at Honoring Choices Virginia, Laura coordinates and guides the efforts of their partners and volunteers to better meet the ADVANCE CARE PLANNING needs of their community. HCV develops and provides inclusive, accessible educational resources and programming designed to support community members wherever they are in the planning process–whether learning about it for the first time or updating an existing plan.
Laura brings a deeply humanistic approach to her work and is a certified First Steps Advance Care Planning Facilitator and Instructor. She holds a bachelor's degree from the University of Mary Washington and a Master’s degree in Nonprofit Studies from the University of Richmond.
“The problem with waiting until you're in a crisis moment to make health care decisions is that emotions come up and unfortunately emotions are not always the best contributors…, to making decisions that are in line with what we would want,” Laura says. “Remember that what our loved one really wants and what you want sometimes can be very different.”
“As we get closer to the time when it becomes more and more a reality, I definitely want people to know what my wishes are,” Mike adds.
“If you leave with nothing else from me today, it is that everyone who currently has decision-making capacity should have an advance directive and that the forms are only as good as your ability to produce them in the moment that they are needed,” Laura says.
You can find out more about HCV on their website and follow them on Facebook.
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Gregor Collins, author of “The Accidental Caregiver,” discusses the 2020 movies Supernova and The Father with Bobbi and Mike. Both films depict the immense impact of dementia on family, loved ones, and life.
The Father: Anthony (Academy Award Winner Anthony Hopkins) is 80, mischievous, living defiantly alone and rejecting the carergivers that his daughter, Anne (Academy Award Winner Olivia Colman), hires to assist him. Yet help is also becoming a necessity for Anne; she can't make daily visits anymore and Anthony's grip on reality is unraveling. As we experience the ebb and flow of his memory, how much of his own identity and past can Anthony cling to?
Supernova: Sam (Academy Award winner Colin Firth) and Tusker (Academy Award nominee Stanley Tucci), partners of 20 years, are traveling across England in their old camper van, visiting friends, family, and places from their past. Following a life-changing diagnosis, their time together has become more important than ever until secret plans test their love like never before.
Our guest, Gregor Collins, started his career in Los Angeles, producing reality TV, then later shifted gears to acting, performing on stage, television, and in independent feature films. His writing and acting have been featured in The Los Angeles Times, The Guardian, Huffington Post, Publishers Weekly, Cinema Editor Magazine and many others, as well as on Off-Off Broadway stages across New York. Gregor travels around the world as a keynote speaker for his books, “The Accidental Caregiver” and "The Accidental Caregiver Part 2.”
You can find his book, The Accidental Caregiver: How I Met, Loved, and Lost Legendary Holocaust Refugee Maria Altmann on Amazon.
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EP 90 :: Music And Dementia: Sing From the Heart :: Clare Childs
Clare is a professional orchestral flautist, mother of 3-year-old twins, and the caregiver for her mother, Christine, who was diagnosed with vascular dementia at age 67. Christine, now 70, currently resides in a nursing home in Harpenden, UK.
In 2019, after she discovered how her mother and others responded to music, she started a sing-along group, Sing from the Heart. Since going online in 2020 due to Covid they have over 200,000 views of the dozens of sing-a-long videos posted on YouTube and shared through Facebook.
“Helping other people is a way for me to manage how we go through this journey of dealing with my mum and how she's changing as she gets progressively worse,” Clare explains.
“It’s about music tapping into that area of the brain that just sparks and gives them their life back so that they can communicate through song instead of words,” Clare says.
You can find Clare on Facebook and sing along with the Song From the Heart videos on YouTube.
“We have occasional moments where I feel like she's lifted out of the pain she's in by the music and just has those few glimmers, here and there, where she's happy or calmer,” Clare says. “So, I know that it's working. And it can help others too…as it's helped me to deal with it all.
EP 89 :: Living With Dementia, There’s Always a Way :: Dr. Jennifer Bute
Dr. Jennifer Bute talks with Bobbi and Mike about living with dementia and her ongoing efforts to raise awareness and understanding of the disease.
Dr. Bute was a highly qualified senior doctor in a large clinical practice whose patients included those with dementia. Then she began to notice symptoms in herself. She was diagnosed with dementia 10 years ago. She now lives in a dementia inclusive retirement village in England and passionately educates about the disease through books, radio, TV, and podcasts.
“I want to help other people and don't want them just to think that I am an interesting woman with dementia. I want to help others and make a real difference to them,” Dr Bute explains.
“You said earlier that laughter is the best medicine. I do believe too that laughter can transform people with dementia and I know you haven't asked me to talk about it, but I believe you can get people with dementia to talk right until the end. When people say they can't talk, they jolly well can. If you know how to do get them to and one of the ways is to get them to laugh,” Dr. Bute says.
You can find out more about Dr. Bute and her book on her website and Facebook page.
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EP 88 :: The Importance of Participating in Dementia Clinical Trials :: Dr. Michelle Papka
Dr. Michelle Papka talks with Bobbi and Mike about the importance clinical trials play in helping to find a cure for dementia and the need for qualifying volunteers to participate in clinical trials.
“It's not funding, money, or other obstacles to finding a cure. It really is people willing to be in a trial, so that's the first thing needed to move the field of dementia research forward,” Dr. Papka says. “We know that people do better when they're in a clinical trial, and it's probably because they are being monitored very, very carefully by a multidisciplinary team of specialists.”
You can sign up for a clinical trial by visiting clinicaltrials.gov. The website is maintained by the U.S. government and lists all the different clinical trials happening across the country.
You can find out more about Dr. Papka on her Facebook page.
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EP 87 :: Ideas for Dementia Communication :: Susan I. Wranik
Susan I. Wranik talks with Bobbi and Mike about the challenges of communicating with people who are dealing with dementia and the cognitive shift they are experiencing.
Susan, a Milwaukee native, is a national speaker, author, linguist, and medical professional passionate about communication, quality of life, and enabling other people’s voices. She began her career as a translator/interpreter for the Italian Ministry of Defense, later moving to clinical work as a speech language pathologist. Her firm, SpeakSkill brings together linguistic, cultural, and medical expertise to provide training and therapy in comprehensive communication skills enhancement.
“People who are dealing with dementia and with cognitive shift are having the same difficulty finding the words to understand what you say to them as they are finding the words to express themselves,” Susan says.
“We are what I call ‘Creative problem solving on the run.’ It's not always going to work, so if it didn't work and you feel guilty today, take a few minutes,” Bobbi says. “Feel the emotion and move on and do the best you can the next day.”
“As clinicians, our job is to open the door and show family members and those who live with their life, altering diagnosis how they can be better communicators and reach the soul of the person. That's our responsibility,” Susan states.
You can find out more about SpeakSkill by visiting their website and following Susan on Twitter and Facebook.
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EP 86 :: Juggling Kids And Caregiving :: Matt Perrin
Matt Perrin talks with Bobbi and Mike about being the family caregiver, along with his wife, for his mother, who’s in a care facility with Alzheimer’s, and his father-in-law who has Lewy Body Dementia, lives full-time with them, and their three children.
Matt Perrin is a family caregiver for his mother, who is living with Alzheimer’s, and his father-in-law, who is living with Lewy Body Dementia. His personal experience led him to co-found Ro & Steve, a senior care review site and caregiving blog, acquired by Carely in August 2020.
He currently serves as Carely’s Head of Growth and lives in southern New Hampshire with his wife, Lindsay, their three daughters, and Lindsay’s father, Steve.
“The process of trying to learn from other people and find the right care for my mom was really difficult. I figured the hard part was getting her to agree and the easy part would be finding the right spot for her,” Matt said. “But it was hard to find support groups and authentic opinions of other people and that was the catalyst for me starting to write my blog.”
“People with all good intentions think they know what it's going to be like and then when they're living with it and it's a complete shock, which is one of the reasons why we do this podcast and the other things we do,” Bobbi says.
“It's not all sorrow and sadness. I'll cherish these last five years and however many more for the rest of my life because we have all gotten some of the most beautiful moments with them,” Matt says.
You can learn more about Carley by visiting their website, and find Matt on Twitter and Facebook.
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EP 85 :: Beware of Taking The New Alzheimer’s Drug Aduhelm :: Dr Winston Chiong
Dr. Winston Chiong is an Associate Professor in the University of San Francisco Department of Neurology Memory and Aging Center, and is principal investigator of the UCSF Decision Lab. His clinical practice focuses on Alzheimer’s disease, frontotemporal dementia, and other cognitive disorders of aging.
Dr. Chiong talks with Bobbi and Mike about Aduhelm, the first new Alzheimer’s drug in 18 years and the many controversies swirling around it.
On June 7 the Food and Drug Administration granted conditional approval to Aducanumab also referred to as Aduhelm.. That approval is broad, making no distinction among the mild, moderate, and advanced stages of the memory-robbing disease and setting no requirements for its diagnosis. Three members of the advisory panel who opposed the drug resigned over the agency's decision.
“I read about this particular drug and how the approval has been handled. And it's hard for me to trust the FDA going forward. It's frightening that this is being treated with less care than I think it should be,“ Bobbi says.
“I've already fielded a number of questions from family caregivers who I work with asking, ‘Is this drug right for my family member?’ And in every case so far, I said I don't recommend the use of this drug. I actually can't think of a patient of mine who I would recommend taking this drug,” Dr. Chiong says.
The drug will be administered through infusions every four weeks, resulting in a yearly cost of about $56,000 and preliminary estimates suggest patients' copayments for the drug could cost around $11,500 annually.
“This is not what we need to address dementia and Alzheimer's disease in this country or anywhere,” Dr. Chiong explains. “I think those of us in the scientific community believe that to fight a disease as complicated as Alzheimer's disease we're going to need to do the best science we can possibly do. It's going to take a lot, and it's going to take real clear thinking. Being guided by not just hope but actual evidence and data.”
You can follow Dr. Chiong on Twitter.
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EP 84 :: Act Now to Take Control of Your Future :: Rory Clark
Attorney Rory Clark brings to his practice more than 30 years of elder law, estate planning, asset protection, and special needs planning experience. He not only understands the complex legal issues involved as a professional but also the intense emotional issues as a caregiver. His father, a World War II veteran, suffered from Alzheimer’s disease for 11 years and eventually had to reside in a memory care facility. His mother battled Parkinson’s disease for 14 years.
The movie I Care A Lot is about a crooked legal guardian who drains the savings of her elderly wards and meets her match when a woman she tries to swindle turns out to be more than she first appears.
Rory talks with Bobbi and Mike about the movie I Care A Lot and the importance of selecting your legal guardian – who would be responsible for your care – sooner than later.
“The woman who is the object of this exploitation had simply prepared a financial power of attorney on her own, she could have done it online and named her daughter or a friend, that would have precluded the crooked guardian from stepping in and taking away her rights,” Rory explains.
“We like to think we have a lot more time to address this than we actually do,” Bobbi says. “One of the things that I try to teach people is that the time is now, regardless of how old you are, to prepare a power of attorney and share it with your family.”
“When you make a decision to put off this kind of basic planning, you're making a decision. A decision not to act is a decision. And the question isn't, ‘Is your oldest daughter the perfect agent for you?’ Under all considerations, under all circumstances? The real question is, is she a better choice than no one?” Rory says.
Rory also has a son with Asperger’s syndrome and severe anxiety disorder. Helping his family cope with these issues has given him a unique experience that has underscored his empathy and motivation to provide for all of his clients with the compassionate, skilled, and personal attention they deserve.
Elder law, unlike virtually every other field of law, is not focused so much on any one particular subject matter but on the needs of a particular type of client – seniors and their families. You can find out more about The Legacy Elder Law Center here website and follow them on Facebook and Twitter.
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EP 83 :: Spiritual Dementia Care :: Elisa Bosley
Elisa Bosley is nondenominational Christian chaplain and the founder of SpiritualEldercare.com. She has more than 35 years of ministry experience in both church and parachurch settings. Her deep desire is to make it easy for anyone to provide much-needed spiritual care to loved ones with dementia.
“Familiar faith rituals, words, and songs bring back hopeful, comforting long-term memories. Even those who can no longer speak or seem lost to the fog of dementia respond profoundly to old-time hymns, loving touch, eye contact, and conversation about spiritual things,” Elisa explains.
“Sometimes in our caregiving journey, we need a reminder that there's a greater power that we can reach out to,” Bobbi says. “I know that sometimes we feel like we have nothing left to give as caregivers and when we turn to faith in spirituality, we can get filled back up so we can go back and do it for another day.”
“One of the most fascinating research pieces that relates to dementia that I've ever seen is that the center of the brain that stores music remains almost completely unaffected by dementia throughout the course of the disease. It's its own little miracle,” Elisa says.
Spiritual Eldercare makes it easy for you to engage elders with dementia with meaningful, interactive spiritual activities.
“Rituals and forms of religious and spiritual life when you have dementia have a really high emotional payoff and a really low procedural demand,” Elisa says.
You can find out more about Elisa and Spiritual Eldercare by visiting the website and follow for on Facebook and Twitter.
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EP 82 :: Dementia and the Use Of Anti-Psychotic Drugs :: Susan Wehry, MD
Dr. Susan Wehry talks with Bobbi and Mike about why reducing anti-psychotic medication to people with dementia remains so important.
Susan Wehry, MD, is a geriatric psychiatrist with over 35 years of experience as a clinician, educator, public administrator, and long-term care advisor. She is currently Chief of Geriatrics at the University of New England College of Osteopathic Medicine, where she directs AgingME: Maine’s Geriatrics Workforce Enhancement Program (GWEP) and the new TeleHealthy program.
“Once you get on an anti-psychotic, there is a fear among the caregiver, either staff or family members, that the behavior is going to come back if you stop the drug,” Susan explains. “People never want to take people off of medications, and that is why the regulators have said, ‘Sorry, you have to.’ There is a required gradual dose reduction. It's always anxiety provoking, so it's kind of better never to start if you don't have to because stopping is equally challenging.”
“I would like to have your audience understand something else really important about anti-psychotics and that is their side effects. I think doctors, nurses, and others often miss a very specific side effect of anti-psychotics called Akathisia,” Susan says. “If they think that their loved one might be experiencing Akathisia and are on an anti-psychotic, they should speak with their doctor.”
Akathisia is a movement disorder characterized by a subjective feeling of inner restlessness accompanied by mental distress and an inability to sit still.
“People living with schizophrenia and people living with dementia are first and foremost people. That might sound kind of trite, but what I mean by that is, simply, they have good days, just like you and me, and they have bad days just like you and me. The temptation that we have as caregivers and as health professionals is to leap to the diagnosis as the explanation as opposed to just that anybody might get cranky,” Susan says. “With not enough sleep, you or I might get a little cranky and the same is true for people living with schizophrenia and people living with dementia.”
You can learn more about Dr. Wehry and any of her upcoming webinars on her website and follow her on Facebook and Twitter.
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EP 81 :: Understanding Hospice And Palliative Care :: Dr. Emilie R. Bartolucci
Dr. Emilie R Bartolucci talks with Bobbi and Mike about hospice and palliative care and the caregivers who provide in-home health and hospice services.
Dr. Emilie R. Bartolucci is currently the executive director of Private Duty Home Care at NAHC. She holds a doctorate in educational leadership and organizational development from the University of New England, a master’s in public administration from Villanova University, and she completed her undergraduate degree at the University of Massachusetts, Boston, with a concentration in psychology.
“My personal mission is to make sure that we're doing more to provide care, support, and information to caregivers. You're part of the answer. You're part of the care that's being provided and so valuable because it's that shared decision, that shared sort of larger caregiver group that's happening,” Emile explains.
“The home caregiver knows that someone with dementia can put on a great show of pretending. They're much better when somebody else comes into the home, so having your Association value what the home caregiver lives with and how they can be a part of the team is absolutely wonderful,” Bobbi says.
“Hospice is a lot about patient choice,” Emilie adds. “It's no longer something that's a scary word. People should be looking at it as a way to support one another in those last moments whether it’s one month, two weeks, or even two years.”
“Hospice is really meant to help, to support that family and patient so they can continue living in the place that they feel comfortable and in a place that they can feel surrounded by family or friends,” Emile explains.
You can learn more about the National Association for Home Care & Hospice by visiting their website.
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EP 79 & 80 :: Alzheimer’s Is Not Just A Memory Problem :: Brooks Kenny
Brooks Kenny talks with Bobbi and Mike about her experience caring for her mother-in-law with Alzheimer’s and how that led her to become the general manager for BrainGuide, a first-of-its-kind platform that empowers people to manage their own or a loved one’s brain health.
Brooks 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.
You can learn more about BrainGuide by visiting their website and follow UsAgainstAlzheimer on Facebook, Instagram, and Twitter.
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EP 78 :: Giving The Caree Purpose :: Linda Burhans
Linda Burhans talks with Bobbi and Mike about the importance of giving caree’s a purpose.
Linda 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.
“I don't think that people are sitting in a chair doing nothing because they don't know what to do. I feel that they're thinking I just can't do what I love to do anymore. It's our job to help them figure out how they can take that feeling and adapt it into something they can do,” Linda says.
“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.
You can find out more about Linda by visiting her website,, Facebook,, and Twitter.
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EP 77 :: Caregiving: How To Leverage Your Workplace Benefits :: Sarahbeth Persiani
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.”
You can find out more about Sarahbeth and We Are Sharing the Sun by visiting the companies website, or checking out their Instagram.
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EP 76 :: Life Is About Creating Yourself :: Sandy Mangis
Sandy Mangis, otherwise known as The Mindset Muse, talks with Bobbi and Mike about the role of caregiving and finding ways to cope.
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.”
You can follow Sandy on Twitter, Instagram, and Facebook and visit her website to find out how to contact her and purchase her books.
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EP 75 :: Early Onset Dementia – Keep on Living :: Tony Copeland-Parker
Tony Copeland-Parker talks with Bobbi and Mike about traveling around the world with, and caring for, his partner Catherine, who has early onset dementia. Up to 5 percent of the more than 5 million Americans with Alzheimer’s have younger onset dementia.
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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EP 74 :: Having Healthy Conversations With Loved Ones :: Deborah Harlow
Deborah Harlow talks with Bobbi and Mike about helping Gen-X caregivers navigate the caregiving journey and the importance of having healthy conversations about tough topics.
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.
“Caregiving is not something that we get to avoid. It happens as a natural progression in every family, at every stage, so stop living with your head in the sand like, ‘That's not goanna happen to me, right?’ “It does happen, and it happens to every family,” Deborah says.
You can find out more about Deborah on Facebook and her website.
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EP 73 :: Living With Frontotemporal Dementia :: Jennifer Lee
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.
Frontotemporal dementia (FTD), a common cause of dementia, is a group of disorders that occur when nerve cells in the frontal and temporal lobes of the brain are lost. FTD can affect behavior, personality, language, and movement.
Symptoms typically start between the ages of 40 and 65, but FTD can strike young adults and those who are older. FTD affects men and women equally.
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.
You can find Jennifer on Facebook.
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EP 72 :: Moving Forward: Employers and Caregivers :: Kathy Koenig
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, case, 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.”
“Caregiving is not always about someone who's elderly. It happens across all age ranges, and it can be an ending event in someone's life. A lot of people have really kept that under the radar because they are concerned that it will keep them from a work advancement or that it will somehow negatively be perceived,” Kathy says.
You can find our more about Kathy on her website and follow her on Facebook.
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EP 71 :: Family Cares For Family :: Barbara Corley
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 purpose 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.
“With over 45 years' experience in various family caregiver roles, I’ve learned many things,” Barbara explains. “But none more important than the power of mindset, seeing beyond physical limitations, and the power that lies within us as caregivers.”
You can find out more about Barbara’s consulting services on her website, follow her on Facebook, and LinkedIn.
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EP 70 :: Writer/Director of Supernova :: Harry Macqueen
Harry Macqueen trained as an actor at the Royal Central School of Speech and Drama, before turning to filmmaking in 2013. His acting credits include Richard Linklater's Me and Orson Welles and the hit British TV show Eastenders. Supernova is his second feature film as a writer-director.
“From the outset, my desire was to make an empowering, powerful, challenging, and timely film about what we are willing to do for the people that we love,” Harry says.
Supernova stars Colin Firth and Stanley Tucci, as partners of twenty years, who are taking a road trip across England. Following a life-changing diagnosis, their time together has become more important than ever until secret plans test their love like never before.
“Supernova is the result of a lengthy and immersive research process. Over a three-year period, I worked closely with the U.K.’s leading dementia specialists at UCL and The Wellcome Trust and collaborated with many individuals and families affected by the condition,” Harry explains. “I have spent time with people who have since died both from dementia and suicide – in secret and in public – and seen the fallout from that first-hand.”
Through this process, Macqueen zeroed in on the exact condition Tucci’s character, Tusker, would be experiencing, and where we would meet him on his journey.
“He has what’s called Posterior Cortical Atrophy, or PCA,” Macqueen says. “That’s a young-onset type of dementia where people experience a progressive decline in vision and/or literacy skills, but often preserve their memory in early stages. Outwardly, Tusker’s life seems pretty normal most of the time, but inwardly he’s being slowly and absolutely unraveled by his condition.”
To find out more about the movie, and where you can watch it, check out their website.
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EP 69 :: People With Dementia Can Learn :: Anne Kelly
Nurse, aged care expert, and Director of Montessori Consulting in Australia, Anne Keely has over 40-years’ experience in caring for dementia patients.
“I just happened about 13 years ago to stumble across a Montessori activities workshop that was being delivered by Dr Cameron Camp from the U.S. Halfway through that morning, the penny dropped. I thought, this is the aged care holy grail that I’ve been looking for,” Anne explains. “This is a way that we can honor, respect, and work with our elders, whilst not robbing them of independence and dignity.”
“I use the term dementia tai chi. You have to move with the dementia, flow with the dementia, and that means that they will do it their way and it's not an issue. You just work with it,” Anne says.
“It is just so amazing to see people maintaining independence and maintaining high self-esteem,” Anne states. “Having things to look forward to and things to do where they can contribute. This is really nontraditional dementia care.”
You can learn more about Anne on her website, follow her on Facebook, and Linkedin.
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EP 68 :: Caregiving: The Four End-Of-Life Decisions To Make :: Hank Dunn
Since 1983, Hank Dunn has been ministering to patients at the end of their lives and to their families. During that time, he has served in a nursing home, hospice programs, and a hospital, and become an expert on end-of-life decisions.
He wrote, “Hard Choices for Loving People” to help him explain end-of-life decisions to patients and families. First published in 1990, it is now in its 6th edition with over 3.5 million copies sold.
“Families who have taken care of their dementia-stricken loved ones have lost them inches at a time over the years,” Hank says. “It's a very hard decision for families and for cognitively intact patients... This is a big deal - it's a big emotional and spiritual issue as people start to let go.”
“There are basically four big decisions that a family faces toward the end of life for a dementia loved one. CPR, feeding tubes, hospitalization, and hospice care,” Hank explains.
“Honest answers, practical advice, and spiritual insights are key to providing support during this extremely difficult time,” Hank explains.
You can find Hank’s book on Amazon, learn more about him on his website, and follow him on Twitter..
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EP 67 :: Tips and Insights into Dementia Caregiving :: Bobbi and Mike
For more than seven years our hosts, Bobbi and Mike Carducci, were the caregivers for Rodger, Mike’s ailing father who was stricken with dementia. With more patience and compassion than either thought possible, they cared for Rodger’s every need through to his final days.
Since then they have dedicated their lives to sharing their personal journey with this cruel disease. In today’s episode they share their insights into the challenges facing anyone caring for a loved one with dementia, Lewy Body, or any mental illness.
How do you know if you or a loved one might be in the first stages of dementia?
“When we're talking about devastating brain diseases, your brain controls every part of your body and it controls every function that you have.” Bobbi says, “So it's not just memory, it's hearing, it's sight, it's the sense of touch, it's your appetite, it's your balance, it's everything.”
“It's important that people understand what type of dementia the person has because that will affect the medications, some of their behaviors, and what type of care they need,” Mike explains.
“People with dementia have their appetite affected, so food no longer tastes good. One of the last flavors that people with dementia enjoy is sweet, and we often hear that all they want is junk food, cookies and cakes,” Bobbi adds. “So, you can cut their piece of chicken into small bites and put some maple syrup on. It won't kill them to have sweets and if that gets them to eat, that's what you want.”
You can follow Bobbi on Facebook and Twitter.
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EP 66 :: When Your 12-year old Child is Your Caregiver :: Anne Scott
Anne Scott talks with Bobbi and Mike about the challenges of being misdiagnosed with dementia, needing to change her career, writing a children’s book, and how her 12-year-old daughter became her caregiver.
When Anne Scott, a mother of five children, was diagnosed with vascular brain lesions, multiple sclerosis, and fibromyalgia, her whole life changed and her twelve-year-old daughter, Evie, became her caregiver.
“I was in total shock. I came home, sat in my garden for a couple of hours 'cause I couldn't go in and tell the children. I just sat there for a while and cried,” Anne says about the day she was misdiagnosed with dementia. “I got myself together and then went in the house and told the children what I knew about it, which wasn't very much at that stage.”
“I know over here in Ireland that most doctors have like 7 hours training about dementia and that's not enough to cover all the illnesses, all the aspects, that they need to know. It is quite common for somebody to go in – especially if you're not getting a brain scan – and be misdiagnosed with dementia,” Anne explains.
Bobbi notes that there is a tendency for the medical profession to go with what they know, so if they see cognitive changes in an adult, they often go right to Alzheimer's or dementia. “The brain is tricky, and it can make it look like something else, so it is extremely difficult many, many, times to get the proper diagnosis,” Bobbi says
“I wanted my children to fully understand and not to be scared, so I wrote my book, Sizzling Bacon. The book gives a lot of detail about the brain and how it works. I wanted people to understand what it's like for somebody with dementia, but to equally see what it's like for somebody who is a caregiver,” Anne says.
You can follow Anne on Facebook, Twitter, Instagram, and purchase her book on Amazon.
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EP 65 :: Huntington’s Disease :: Karen Truman
Bobbi and Mike talk with Dr. Karen Truman about Huntington’s disease, dementia, and finding resources for your caregiving journey.
Dr. Karen (Karle) Truman, founder of Dementia Caregiver Resources and author of the Dementia Caregiver’s Little Book of Hope talks about Huntington’s disease and finding resources for the caregiving journey.
Karen saw her own beloved mother, grandmother, and other relatives stricken with dementia but did not know what type they had.
“When people talk about the difference between Alzheimer's and dementia, I tell them that saying you have dementia is like saying that you have a brain disease. You need to find out exactly what kind of disease you have so you know exactly how to fight it and what you might be passing along to your children,” Bobbi says.
“Huntington's is inherited, so if one parent has it, their children have a 50% chance of inheriting it,” Karen explains. “There's a lot of emotional pain associated with it - it is a wasting away basically of the body.”
“I had my mother’s brain autopsied and it was one of the best gifts I could have ever given to myself because now I know exactly what she had, I know it was just Alzheimer's,” Karen explains.
The Brain Bank collects brain and tissue samples from across the United States and distributes them to investigators all over the world. A brain donation is a gift of knowledge to all of us, and it is of critical importance for our understanding of brain disorders,
You can find out more about Karen on her website as well as purchase her book.
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EP 64 :: Caregiving: Fresh Eyes and Fresh Ideas :: Ariel Decheubel
Ariel Decheubel talks with Bobbi and Mike about the challenges of serving as a young paid caregiver and offers some fresh ideas and perspectives on caregiving. Ariel assists former Rodger That guest Bill Ralston with caring for his wife, Cindy, as she struggles with dementia. Ariel works Monday through Friday in their home, has a young son, and is in her twenties.
“It's a little bit of a rollercoaster ride, and you just kind of have to anticipate what might happen and what might not happen,” Ariel explains.
“It's not necessarily your age that makes you a good caregiver, it is your ability to connect with that person right now as they are,” Bobbi points out.
“We've made little transitions to where things are now easier for her, and it's not so challenging all the time,” Ariel says. “We changed how she eats, for example, because she was eating too fast and choking. If you're eating something with the wrong object, it's a little bit harder to eat it. As she's trying to eat with it, it slows her down to where she has time to chew her portion.”
“My Grandfather always told me that if you do something you love every day, you will never work a day in your life. I truly, truly believe that because I enjoy every day. I get here early every day, and it makes me happy being here,” Ariel explains.
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EP 63 :: Challenges in Caregiving Families :: Malia Kline
Malia majored in journalism and embarked on a career as a TV producer and advertising copywriter. After years spent writing short ad copy, she realized she had more to say, so she co-wrote “Sisterly Shove," a memoir about stepping up when moms die and dads are left behind to get ancient on their own.
The book examines what happens when Malia’s mom was diagnosed with pancreatic cancer and her dad developed dementia. Malia and her serious-as-a-heart-attack physician sister engaged in hand-to-heart combat in a 13-year battle to do what’s best for the parents who were always there for them.
““We never thought ahead and that's another important thing to do before your parents become ill, more planning,” Malia says. “We should have looked at the fact that we're all in different parts of the country, and something inevitably is going to happen to our parents.”
“My sister just thought she could do it better herself and my mom thought she could do it better herself. So, you got this example that was set of a mother that was totally self-sacrificial, and then my sister who, I guess, really followed more of our mothers’ model than I did,” Malia explains.
“We could have avoided this 13 years of sisterly shove by talking to our parents when they were in their 60s about what they would want us to do if they got dementia, which runs in my father's family,” Malia explains.
You can find out more about Malia and her sister on her website, Twitter, and Facebook.
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EP 62 :: Caregiving in Fact and Fiction :: Annette Dashofy
Annette Dashofy talks with Bobbi and Mike about her multi Agatha Award nominated Zoe Chambers mystery series and caring for her father, as he battled Alzheimer’s, and then her mother, with vascular dementia.
“My mother would try to come up with the word to say, what was on her mind, and then she would just cover her face with her hands and start crying again. It would rip my heart out,” Annette says.
Annette Dashofy is the USA Today best-selling author of the multi Agatha Award nominated Zoe Chambers mystery series about a paramedic and deputy coroner in rural Pennsylvania’s tight-knit Vance Township. Annette also helped care for her father as he battled the ravages of Alzheimer’s. Less than ten years after he passed away, her mother was diagnosed with vascular dementia, placing her once again into the role of caregiver.
“We really tried for as long as possible to keep her in her home until she started falling,” Anette explains. “She wanted to come back to her house, you know, but that wasn't an option.”
“Bobbi, your book - Confessions of an Imperfect Caregiver - got me through a lot of the rough patches. Just reading it, knowing that it’s OK, it is all right to feel guilty, made me feel better,” Annette says.
“In Zoe Chambers, I wanted to put my character Pete in the position of having to deal with Harry, his dad. And Harry gave me a chance to revisit the nicer memories of my dad. It was not that my dad was not a nice person, but I wanted Harry to be a character who was true to the illness and someone that my readers would want to spend an entire book with,” Anette explains.
You can find Annette on Twitter, Facebook, and Instagram. And to learn more about her, and her book series, you can visit her website.
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EP 61 :: Being a Mixed Dementia Caregiver :: Ashley Raines
Ashley Raines is a wife, mother of a four-year-old boy, full-time employee for the division for Diversity and Inclusion at Missouri State University, and the primary caregiver for her father with mixed dementia.
“At first, before we really understood what we were getting into, it was really, really, difficult. It’s hard to understand what is dementia and what is him,” Ashley says.
“He frequently thinks I'm his wife, which gets extremely uncomfortable. He hates my husband especially when he thinks I'm his wife, “Ashley says. “Which poses a lot of challenges for us choosing how to respond. When he thinks I'm his wife it gets challenging because I recognize that it's not his fault so it's like, Dad, I'm your daughter but that frequently doesn't register in his mind. At some point I will message my brother and say, ‘Hey I need your help.’ He will come over, and I remove myself for a little bit, giving me separation. I can't take care of him if I can't take care of myself. I have to feel comfortable around him to be able to do that right.”
You can find Ashley on Facebook.
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