Caregiver's Compass – Détails, épisodes et analyse

In today’s episode, caregiver @debbieelkins , shares her story caring for her husband Chuck with frontotemporal degeneration (FTD), and discusses how @theaftd  supported her during both her caregiving journey, and provided her a sense of purpose through volunteer and advocacy. AFTD’s director of support and education, Esther Kane, also joins us on today’s insightful episode to discuss all that AFTD provides currently, how they support caregivers and those with an FTD diagnosis, and what may be on the horizon for the organization and the FTD landscape.

About Debbie Elkins: 

Debbie Elkins is a care partner for her husband, Chuck, who is living with Frontotemporal Degeneration (FTD), a proud mother of three daughters and a grandmother of six. She is deeply committed to advocacy and education, volunteering with The Association for

Frontotemporal Degeneration (AFTD) as an Ambassador and support group leader, and serving as a voting member of the West Virginia State Dementia Task Force. Through her efforts, she strives to raise awareness, support affected families, and contribute to the development of a stronger, more informed future for those impacted by dementia. You can theaftdconnect with Debbie on Instagram @debbieelkins

About Esther Kane:

Esther Kane, MSN, RN-CDP, has been serving as the Director of Support and Education at AFTD since November 2020. With a rich background in dementia care, Esther previously held the position of Director of Nursing at several long-term care facilities specializing in the care of individuals with dementia. Her expertise in clinical dementia care, combined with her deep commitment to delivering compassionate, high-quality care for those living with neurological conditions, drives her work at AFTD. Esther is dedicated to ensuring that every person affected by Frontotemporal Degeneration (FTD) has access to the support and care they need. She is also passionate about educating healthcare professionals to enhance diagnosis and care, underscoring the critical role of education and training throughout the entire process from diagnosis on. 

Find the AFTD website here: https://www.theaftd.org/
Find the AFTD on Instagram here: @theaftd

Visit us on our website to see all that we offer for caregiver support:
www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

This is not commonly provided education so do not worry if this is all new or confusing! Most people are confused about powers of attorney, advanced directives and wills and why they can be extremely important/ what they can help with. 

In today’s episode, Stephanie discusses her perspectives on having a power of attorney document and what she has seen in her personal life and in hospital and private practice when it comes to powers of attorney and advanced directives. 

*please note, Stephanie is not a lawyer and this episode does not represent legal advice. Please speak to a lawyer or other legal representative for your own power of attorneys and other legal matters*

Visit us on our website to see all that we offer for caregiver support:
www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

Welcome back to Caregiver’s Compass! We cannot believe we are already on season 5 and we have some incredible guests coming your way. In this episode Stephanie introduces this season and briefly discusses her mom’s recent passing after many years of caregiving.

Visit us on our website to see all that we offer for caregiver support:
www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

In this episode, Lani Lipson, co-founder of ee-mah very candidly opens up about her experiences caring for both her mother and father simultaneously in her 20s as an only child. She explores the grief she felt after losing both her parents and the decision to then start her own family without her parents by her side, while at the same time seeing so many friends raise families with parental support. 

About Lani:

Lani Lipson is a busy mom of two and co-founder of ee-mah. There are so many things that no one ever tells you about being a new mom which is how ee-mah came about. Lani loves working with her partner Jordana and talking to moms about the ups, the downs, the beauty and the hardships of motherhood. Ee-mah is an anonymous storytelling platform that gives moms an opportunity to share their story to help other mothers feel less alone on their journey. 

Find Lani:

Instagram:

https://www.instagram.com/shopeemah/?hl=en

https://www.instagram.com/this.is.eemah/?hl=en

Website:

https://ee-mah.com/

Visit us on our website:
www.compassionincaregiving.com

Join our FREE Facebook community! https://www.facebook.com/groups/compassioncaregiverconnection
 
For more visit our Instagram! @compassionincaregiving

In this episode, esteemed professor Lucy Lach discusses her many years of research looking at the outcomes for caregivers of a child with epilepsy, particularly after undergoing surgery. Specific outcomes discussed include community supports, accessing and navigating community supports and caregiver mental health. 

Stephanie and Lucy also discuss how the global pandemic has impacted caregivers overall and their ability to access community supports and mental health supports. 

This episode is part 1 of 2. 

Dr. Lucyna Lach is an associate professor in the School of Social Work and an associate member of the Departments of Pediatrics, Neurology and Neurosurgery, Faculty of Medicine, McGill University. Her program of research focusses on the well-being of children with neurodisabilities and their caregivers (i.e. caregiver health, and parenting). Dr. Lach's current projects address social determinants of health of children with neurodisabilties.  Dr. Lach is a peer-reviewer for numerous journals as well as organizations who provide funding in this area of research.

Visit us on our website:
www.compassionincaregiving.com

Join our FREE Facebook community! https://www.facebook.com/groups/compassioncaregiverconnection
 
For more visit our Instagram! @compassionincaregiving

Trauma as a result of caregiving (particularly as a result of caring for a child with a disability) with Donna Thomson (Part 2) (Episode 30)

Donna Thomson, a well-known advocate for caregivers, joins Stephanie in this episode to discuss her experiences as a caregiver both to her father and her son with severe cerebral palsy and medical complexity. She also touches upon the trauma that can result from caregiving and her experiences navigating the Ontario healthcare system. 

Donna Thomson is the co-author with Dr. Zachary White of The Unexpected Journey of Caring and the author of The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving. Donna facilitates Caregiving Essentials and instructs the Family Engagement in Research, both at McMaster University. Donna has sat on The Expert Group on Home and Community Care, the advisory committee for the white paper on aging and on the Working Group on Complex Care for Adults with Developmental Disabilities for the Ontario Ministry of Health and Long Term Care . She is a lifelong family caregiver and advocate. 

Find Donna: https://www.donnathomson.com/

This episode is part 2 of 2.

Visit us on our website:
www.compassionincaregiving.com

Join our FREE Facebook community! https://www.facebook.com/groups/compassioncaregiverconnection
 
For more visit our Instagram! @compassionincaregiving

Donna Thomson, a well-known advocate for caregivers, joins Stephanie in this episode to discuss her experiences as a caregiver both to her father and her son with severe cerebral palsy and medical complexity. She also touches upon the trauma that can result from caregiving and her experiences navigating the Ontario healthcare system. 

Donna Thomson is the co-author with Dr. Zachary White of The Unexpected Journey of Caring and the author of The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving. Donna facilitates Caregiving Essentials and instructs the Family Engagement in Research, both at McMaster University. Donna has sat on The Expert Group on Home and Community Care, the advisory committee for the white paper on aging and on the Working Group on Complex Care for Adults with Developmental Disabilities for the Ontario Ministry of Health and Long Term Care . She is a lifelong family caregiver and advocate. 

Find Donna: https://www.donnathomson.com/

This episode is part 1 of 2. 

Visit us on our website:
www.compassionincaregiving.com

Join our FREE Facebook community! https://www.facebook.com/groups/compassioncaregiverconnection
 
For more visit our Instagram! @compassionincaregiving

In today's episode Stephanie shares a real case example of a very overwhelmed primary caregiver who had to say 'no' and take a step back while her father was admitted to the hospital.

This story emphasizes that it is ok to take a step back when needed and discusses who you can lean on and transfer concerns to when you need to say no.

Visit us on our website:
www.compassionincaregiving.com

Join our FREE Facebook community! https://www.facebook.com/groups/compassioncaregiverconnection
 
For more visit our Instagram! @compassionincaregiving

We all have that person in our lives- they are well-meaning and do not recognize it but will reach out to us ongoing about concerns that are very minimal to us while we are navigating crises and significant stressors. What do we do in these situations? Do we reply to their comments and where do we draw the line?

In this episode Stephanie discusses how to approach these situations and what we can do to communicate with those we love who reach out to us in this manner. 

Visit us on our website:
www.compassionincaregiving.com

Join our FREE Facebook community! https://www.facebook.com/groups/compassioncaregiverconnection
 
For more visit our Instagram! @compassionincaregiving

We all have that person in our lives- they are well-meaning and do not recognize it but will reach out to us ongoing about concerns that are very minimal to us while we are navigating crises and significant stressors. What do we do in these situations? Do we reply to their comments and where do we draw the line?

In this episode Stephanie discusses how to approach these situations and what we can do to communicate with those we love who reach out to us in this manner. 

Visit us on our website:
www.compassionincaregiving.com

Join our FREE Facebook community! https://www.facebook.com/groups/compassioncaregiverconnection
 
For more visit our Instagram! @compassionincaregiving