Our Boldest Hours, this year’s conference theme, refers to our time spent before, during and after our caregiving experience. The theme also encourages us to take bold action before, during and after our conference.
You’ll want to virtually attend our conference if:
- You care for a family member or friend (family caregiver);
- You cared for a family member or friend (former family caregiver);
- You work with (or want to work with) family caregivers, either in your own business or in an organization or agency (a professional). In addition, we welcome anyone with an interest in issues facing family caregivers and former family caregivers.
Watch our live broadcast on Friday and Saturday (Nov. 10 and 11).
Friday November 10 Virtual Agenda
9 a.m. Technology Panel
What technology is currently available to help you during caregiving? Our panelists will share an overview of what’s available as well as offer suggestions as to the technology you need but cannot find.
- Claudia Cook
- Carl Hirschman
- Andrew Koch
- Jackie Schwabe
10 a.m. Judgment-Based Decision Making for Caregivers with Tyler Ludlow and Liz Mascherino
Caregivers take on a lot of responsibility and burden. This includes having to make difficult choices, whether it’s due to medical complexity, balancing life demands, or simply emotionally-charged situations. This workshop will help equip caregivers with a framework, tools, and techniques to approach decisions in a structured manner that helps ease burden, worry and stress. Rooted in decision science, Tyler Ludlow and Liz Mascherino will walk participants through a framework that enables us to judge a decision as good or not without having to wait to know the outcome. This framework of “structured thinking for making choices” can also be used to guide our effort during the decision-making process, ensuring that we have addressed each of the elements of a high quality decision. During the workshop, Tyler and Liz will zero-in on techniques for how to start gaining clarity in a muddy context where a choice is required. Participants will learn the structural components of decision making, and how they fit together to create both tension, and in the end, clarity around the best choice.
The workshop acts as an exercise to explore the practical and emotional decision-making processes around their own scenario. Participants will organize variables and considerations into three buckets:
- Decisions: the alternatives we choose that are under our control
- Uncertainties: ambiguity and outcomes that may be out of our control
- Values: the constraints and criteria, including conflicting or competing values, and consideration for the impact of a decision on family
After mapping decisions, uncertainties and values, Tyler and Liz will lead participants in an exercise to help apply that knowledge toward aligning treatment options that resonate with those values. In this exercise, participants will learn:
- How to identify trusted resources
- Where to find trusted resources
- How to sift through large amounts of information
Participants will gain a new way of approaching the decision-making process as a caregiver. They’ll learn strategies to help them break down care decisions into more accessible conversations. They’ll also learn how to align care options and resources for care with the values that resonate most with them, empowering them as informed, active participants as caregivers.
11 a.m. Caregiving 101: Boldly Surviving with Carolyn Grant, Andrew Koch, Lisa Riggi
Carolyn, Andrew and Lisa will share tips, techniques, information and insights to help those just beginning their caregiving experience.
Andrew will his humor and heartaches as well as three essentials for the caregivers toolkit: 1. “S.T.O.P Technique” 2. “Visual-Verbal-Touch” 3. “Hand – Over – Hand.”
Bio Andrew: Andrew is a graduate student at Naropa University studying Mindfulness-Based Transpersonal Counseling in Boulder, Colorado. He specializes in supporting student caregivers. His mission is to help support the physical, functional, energetic, emotional, social, intellectual, spiritual, and transpersonal wellness of caregivers and their carees. Andrew has been a caregiving educator for four years. He has a special interest in supporting individuals with Alzheimer’s Disease and Progressive Motor Neuron Diseases.
Carolyn will be explore the complex emotions that new caregivers face and present the keys to survival through the ups and downs: humor, humility, gratitude and forgiveness.
Bio Carolyn: It is with over 10 years of experience, genuine empathy and respect that I help my clients successfully maneuver life as a family caregiver. My clients benefit from the knowledge that I gained helping multiple family members learn, plan, adapt, cope and accept a medical diagnosis and living with disease. I understand the struggle of worrying, fulfilling needs for sick family members while simultaneously balancing the needs of my own family. Since my experience encompasses both long distance and local care, I learned how to have those difficult conversations with immediate and extended family. The caregiving years can be extremely challenging as family caregivers are thrust into a world filled with new medical jargon, emotional chaos that ensues and feeling like their own life is unraveling. I walk the journey with family caregivers to ease the process, collaborate to develop plans that ensure their family member is getting the care that they need and provide support for whatever the family caregiver requires.
“Mom isn’t paying her bills?”
“I noticed dad isn’t taking care of the yard like he use too.”
“Did you notice the bruise on Aunt Sue’s arm? I wonder how that happened.”
Have you said these comments to yourself? Or, maybe a spouse or friend? This is the first stage of caregiving.
Based on Denise Brown’s book, The Caregiving Years: Six Stages to a Meaningful Journey, Lisa will introduce you to the first two-stages of the Caregiving Years: the Expectant and the Freshman Caregiver.
Step boldly into family caregiving with information and tools. You are not alone and there is lots of support!
Bio: Lisa was raised in a caregiving home since birth. Her maternal grandmother lived with her parents since their wedding and she witnessed them care for several family members either in their home or at a facility. They became her carees in 2006 when they moved in with Lisa and her family. Lisa experienced a “Is this all there is in life?” moment after her dad passed away in 2014. Struggling to keep her focus on her home-based business, she Googled caregiving support and found Caregiving.com and Denise Brown. She immediately connected with Denise and completed the Certified Caregiving Consultant and Certified Caregiving Educator training classes. She has opened her caregiving consultant business, The Serene Harbor, which offers caregivers and their families a place of peace and safety as they navigate their caregiving journey. She also presents Denise Brown’s book, The Caregiving Years: Six Stages to a Meaningful Journey. Lisa’s mission is to help as many family caregivers know that there is support and help available. She only wishes she found Denise and Caregiving.com sooner. Currently, Lisa cares for her elderly mother, an adult daughter who suffers from Fibromyalgia and cardiac issues and her adult son who has Type 1 diabetes.
1 p.m. Health & Wellness for a Vibrant Life in a Tiny Home with Carol Papini
Carol will share her story of overcoming adversity in a subject that most people would not attempt: How to live a Vibrant Life in Tiny Home as a Caregiver. Their tiny house happens to be on wheel; Carol has been driving her husband around the country for nearly five years. How to do this on wheels or just down size to a Tiny or smaller home. It’s the small steps each day that makes a difference. Carol will provide tips, resources and tricks on she does it and teach how anyone can do it too. She shares details on how to create a healthy non-toxic life in a Tiny home, how to catch the dreams of your desires and much more. If you feel.like time is running out to fulfill your dreams and desires, this fun and interactive workshop will leave you excited and filled with love, joy and hope.
Bio: Hi, my name is Carol Papini and I’m a positive, outgoing, independent woman who, ever since the summer of 2012, has been crisscrossing the continental United States in a 31-foot Motor Coach. I’ve been driving all over the country while caring for my husband Bill, who in 2011 was completely disabled by a massive left-brain stroke. I am also an Intuitive Energy Healer, and a Health and Wellness Mentor. My main focus is assisting caregivers & caregivees and other individuals in releasing the feeling of being stuck and imprisoned within their mind, body and soul; helping them find balance, love and joy in their life. I also love to inspire, balance and connect Caregivers and Caregivees to self and/or each other through Health, Wellness and Intuitive Energy Healing. My passion is helping those who want to create a balanced life with ease and joy, giving them hope and greater possibilities
2 p.m. Hands On Caregiving with Pastor Bruce Hanson and Penny Patnaude
Caregiving is one of the most difficult, yet important roles an individual can have. During this presentation, individuals will learn the most effective ways to care for and communicate with persons diagnosed with a cognitive deficiency. The importance of a Caregiver Contract and how to illicit assistance from others while using the Caregiver Contract.
Some key take-aways:
- Some patients can be assisted in managing complex medication needs with a spread sheet. Microsoft’s Excel program has a medication spreadsheet template (Bruce developed his own utilizing macros limiting the need to add information multiple times). Other templates are available (here again Bruce designed his own to his particular needs).
- The time and organizational stress involved with multiple medications may include needing to coordinate refills on different days from different vendors. To the extent refills and vendors may be limited and coordinated, the ability to manage the medications may improve.
- Many beneficiaries and caregivers not only must manage ordering and tracking medications, they may also need to order and manage an inventory of various medical supplies and equipment. This may add to their burden and become a barrier to positive self-management of their situation.
- Keeping track of all testing and intake / output on a spreadsheet along with logs of the patient’s vital signs and personal and wound care at home that can be taken with to appointments and emergency care is greatly helpful.
- Maintaining a care notebook with information about all of a patients/Loved one’s providers including physicians, therapists and home health aides is helpful in speeding up necessary care in a emergency situation at home or in the emergency room.
Bio Pastor Bruce: Pastor Bruce Hanson has been a Caregiver for his wife for the past forty-seven plus years. During the past ten years, this task has become a full time calling due to multiple medical issues (diabetes, Kidney failure and subsequent kidney transplant, major debilitating Stroke, Breast Cancer, and Seizures) that his wife has encountered. As a result of this calling Pastor Bruce has become extensively involved in Patient Advocacy locally as well as nationally, serving on several National Boards (ABIM Critical Care sub Committee, PCORI Patient Engagement sub Committee, NAM Multiple Medical Issues sub Committee, Pastors4PICOR Board, Gap-Bridging LLC, as well as on multiple SCM sub Committees as a Patient Advocate Consultant). Pastor Bruce has a BS in Counseling Psychology and a Masters of Divinity with a minor in Family Counseling.
During the years of caring for his wife Pastor Bruce has developed various strategies that have enabled him to navigate the Federal, State and Insurance health systems as well as the various medical systems that have been involved in the care of his wife.
Bio Penny: Penny Patnaude is the Caregiver Strategist. Penny is a Dementia Care Practitioner, A Certified Alzheimer’s Disease and Dementia Care Trainer, and an Excellence in Care Specialist with the Alzheimer’s Foundation of America. Penny offers family caregivers personalized plans for assisting their loved ones suffering from Dementia. As a caregiver for over a decade, Penny understands the difficulties families endure when caring for loved ones with Alzheimer’s and dementia. Penny’s mission is to assist the caregiver with strategies to ease the caregiving responsibilities, to assist front-line personnel in understanding the needs of the caree while providing education about dementia. Penny holds a Masters of Arts Degree in Education and Training and a Bachelors of Arts degree in Psychology.
3 p.m. Challenges, Changes, and Choices: Caregiving for People with Movement Disorders, a panel discussion of family caregivers with Diane Breslow
During the workshop, participants will: 1) learn basic educational information about Movement Disorders: diagnosis, medications, treatments; 2) understand how Movement Disorders affect all levels of one’s functioning; 3) become aware of the family impact of these diseases throughout their progression; 4) gain a deep awareness of and appreciation for the role of caregiver: what it means to be a “partner in care,” how to build your team and to extend your own support network; caregiving stresses and rewards, practical pointers, and resources. After a brief introduction, panelists will respond to questions related to their personal experiences of caring for someone with a Movement Disorder. Issues will range from the most basic, concrete aspects of daily caregiving and community resources, to the deeper emotional, relationship, and spiritual realms; and from early diagnosis and a variety of interventions, to advanced disease, hospitalization, and longer-term care planning; and long-distance family caregiving. Audience members will also have an opportunity to ask questions of the moderator and panelists.
Bio: Diane Breslow, MSW, LCSW (Illinois Licensed Clinical Social Worker) is an educator, support group leader, consultant, program development specialist, and psychotherapist. Diane received her BA with Honors in Psychology from the University of Missouri. She holds a Master’s Degree in Social Work, with a specialty in Family Therapy, from the University of Maryland. Diane has worked in her Profession since 1970, largely with people affected by Parkinson’s disease. Colleagues, patients, and family members have observed that Diane brings a keen insight into, and sensitivity about, the impact of disease not only on the diagnosed person, but also on the entire family.
Diane has collaborated with numerous Chicagoland retirement homes, assisted living facilities, and nursing homes in establishing Parkinson’s programming and holistic care. She served as the first Coordinator of Northwestern University Parkinson’s Disease and Movement Disorders Center, where, for over 10 years, she developed programs and counseled patients and families. Among many passions, Diane champions multidisciplinary care and caregiver recognition and rights. Diane feels blessed to have chosen Social Work, a Profession that offers a diversity of roles, personal growth, immeasurable rewards, stimulating challenges, and enriching relationships.
4 p.m. Getting Real: The Low Down on Depression and What You can Do with Deb Kelsey-Davis
Depression. We see the term everywhere, but often miss it when it’s staring us right in the face. Isn’t it time we talk more about it, and wipe away the stigma to see depression for what it really is and what it is teaching us? Depression is easily misunderstood and misdiagnosed. People who suffer from it are sometimes accused of being lazy, unfriendly and/or overly dramatic. They may have a difficult time completing a task or making a decision and can seem edgy, over- reactive, and preoccupied with ‘aches and pains’. They often visit multiple physicians and undergo a variety of medical procedures because of their unexplained physical symptoms. It’s estimated that one third of people with a chronic disease have depression. And, the Family Caregiver Alliance conservatively estimates that 40% - 70% of family caregivers suffer from it.
Are you or your loved one – one of them?
Join Warren Hebert, RN, Deb Kelsey-Davis, RN and April Koontz, MSW, three family caregivers who happen to be clinicians, and get the low-down on depression. Through their own personal stories, Warren, Deb and April will provide insights into the hidden ways depression appears in our lives and challenge us to consider the ‘gift’ depression has to offer. They’ll also share a simple exercise that will strengthen your resilience muscle and help you better cope with depression if and when it appears.
In this session, you’ll learn:
• How to recognize depression in both yourself (the caregiver) and your loved one (the caree).
• What depression may be trying to tell you.
• When to seek professional help (and what to expect).
• Where to find ongoing support.
• Why shattering the stigma of depression is a critical component of healing.
Bio: Deb is an author, national speaker, and caregiver to her parents. With caregiving as the most important role of her lifetime, her mission is to focus on what really matters. She launched Soul2Soul Solutions with Nourish™, a faith-based program for family caregivers. Then, co-founded Sagacity.Care™ to meet consumer demands for credible, personalized health content.
Watch our live broadcast on Friday and Saturday (Nov. 10 and 11).
Saturday, November 11 Agenda
9 a.m.: Preparation, Frustration and Surrender. Boldness Throughout Caregiving with Cathy Sikorski
Cathy will share stories and advice for how she has been shaped by caregiving to be fearless and funny in times of frustration. She hopes you walk away with a better understanding of how preparation can help in crises, and how this experience of caregiving is about heartfelt joy and satisfaction as much as it is about accepting the heartbreaking moments with grace and peace.
Cathy Sikorski has been a significant caregiver for the last 25 years for seven different family members and friends. A published humorist, Sikorski is also a practicing attorney who specializes in Elder Law. Her combined legal and humor expertise has made her a sought after speaker where she tackles the Comedy of Caregiving and the legal issues that affect those who will one day be or need a caregiver (which is everyone).
Along with her speaking engagements, Sikorski is a frequent guest on radio programs and podcasts where she talks about the importance of using humor in caregiving. With more than 30 years of law behind her, she provides critical legal information for our aging population. Her first book is a humorous memoir Showering with Nana: Confessions of a Serial (killer) Caregiver (HumorOutcasts Press 2015). Her next book, Who Moved My Teeth?(Corner Office Books 2016) a humorous and informative book with practical and legal tips for caregivers and baby boomers, debuted at #1 on Amazon in November 2016.
Sikorski is a contributing author for the HumorOutcasts.com website, and she maintains an active blog “You just have to Laugh…where Caregiving is Comedy…” at www.cathysikorski.com.
Cathy, our keynote presenter, won of our Conference Keynote Contest
10 a.m. - Noon: ABCs to Cope with Behavior with Teepa Snow
Teepa will describe how to apply the ABC approach:
- A = Antecedents – What starts it?
- B = Behavior – What is it?
- C = Consequences – What happens?
Teepa’s teaching style is extraordinarily unique in that she is able to accurately demonstrate and model for her students, and audience the struggle and challenges dementia creates for all parties involved. She is an enlightening, witty, entertaining, and energetic speaker, who is much sought after to present to agencies and organizations across the U.S and Canada.
Teepa is an advocate for those living with dementia and has made it her personal mission to help families and professionals better understand how it feels to be living with the challenges and changes that accompany various forms of the condition so that life can be lived fully and well. Her company, Positive Approach, LLC was founded in 2005 and offers education to family and professional care partners all over the world. Her training is available through video, online education, and in person trainings and consulting.
Noon - 1:30 Lunch Break
1:30 p.m. Fashion Show
- Adaptive Clothing
- What I Wear When I Care
- Our Loss is Our Gain
2 p.m. A Life Interrupted: Picking Up the Pieces Panel Discussion
A diagnosis changes today and tomorrow. These panelists will discuss the discussions and actions they took after a family member’s diagnosis which helped them pick put the pieces.
- Chrissy Harris
- Allison Elkow Lazicky
- Lisa Nigro
- Peggy McCallum
3 p.m. Loud and Proud: The Bold Battle Cry of an Advocating Family Caregiver
We make it happen! Panelists will share their bold moments of advocacy in the health care system, the family, the workplace and the community.
- Sharon Hall
- Priya Soni
- MaryAnne Sterling
- Sibyl Yau
4 p.m. Closing Session
Watch our live broadcast on Friday and Saturday (Nov. 10 and 11).
We are so very grateful for the support of the following sponsors of our National Caregiving Conference:
Visit Lilly for Better Health® for resources, recipes and tips.
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