The Dementia Journey: A Caregiver's Toolkit

What difficulties develop when a child becomes a caregiver to their own parent? Studies show that young caregivers make up at least 12% of Canadian youth. One of these young people is Kristie Mar. At just 16 years old, Kristie set aside a significant part of her adolescence to become the sole carer for her mother, who was navigating schizophrenia and anorexia. The medical professionals, counsellors, and groups from whom she sought assistance, however, never gave her the title of “caregiver.” As such, it took her years to think of herself in this way or discover the resources that search term could unlock.

Today, Kristie is a medical student and an active participant in this community. She wants to help increase awareness and resources for fellow adolescents who are thrust, so often unprepared and unsupported, into the role of caregiver for their family members.

Hear the difficulties a young caregiver faced, caring on her own, including:

• The impact of expanding the narrow definition of “caregiver” to better identify young caregivers
• Where to uncover resources that help reduce the deep sense of isolation
  The many facets of childhood that are lost to young caregivers
• Strategies for maintaining mental health while balancing childhood and a very adult responsibility

Resources:

• Powerhouse program for young caregivers - https://www.familycaregiversbc.ca/young-caregivers-2
• Managing expectations - https://www.familycaregiversbc.ca/wp-content/uploads/2021/03/Managing-Expectations-April-2020-1.pdf
• Episode 11 How to Use Writing for Healing and Self Care -  https://www.familycaregiversbc.ca/podcast/episode-11-how-to-use-writing-for-healing-and-self-care
• Episode 14 Creativity as a Form of Self Care -  https://www.familycaregiversbc.ca/podcast/episode-14-creativity-as-a-form-of-self-care
• Family Caregivers of BC Caregiver Support Line - 1-877-520-3267 (Monday through Friday 8:30am to 4pm PT)
• Connect With Us!

To read a full transcript of each episode, visit the Family Caregivers of BC website https://www.familycaregiversbc.ca/podcast

Visit us at our office:
#6 – 3318 Oak Street,
Victoria, BC
V8X 1R1
Hours are Monday through Friday, 8:30 am to 4:00 pm

Telephone: (250) 384-0408
Toll-Free Line Within BC: 1-877-520-3267
Fax: (250) 361-2660
Email: info@familycaregiversbc.ca

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Thank you!

BC Ministry of Health - Patients as Partners Initiative - https://www2.gov.bc.ca/gov/content/health/about-bc-s-health-care-system/partners/patients

Organized Sound Productions - https://www.organizedsound.ca/

How can you build a healthier relationship with death and dying that will benefit both caregiver and recipient? Aaron Yukich is an end-of-life doula, mindfulness practitioner, and hospice care worker. In his work with the Family Caregivers of BC Caregiver Support Line, Aaron incorporates meaning-making and self-reflection into his sessions with caregivers, helping them uncover new ways to provide support to their care recipients without overlooking their own well-being.

The end-of-life process has many varied aspects. Aaron helps caregivers navigate this intricate spiritual and emotional experience with grace, through activities and mindsets that can offer comfort and even joy. He also guides them in practical considerations, such as establishing often-overlooked financial and personal mental health support structures.

Aaron shares his holistic perspective on providing end-of-life care:

• Moving through the transition from palliative to hospice care
• Resources for addressing the impacts of caring for a care recipient
• Imbuing the time your loved one has left with more meaning
• Considering death and dying through a lens of celebration and reflection as well as grief

Resources:

• United Way Better at Home - https://betterathome.ca/
• Island Health Dementia Video Series - https://www.islandhealth.ca/learn-about-health/seniors/dementia-video-series
• Discover a local hospice - https://www.chpca.ca/listings/
• Hospice care information and assistance - https://www.virtualhospice.ca/
• Hospice resources with a cultural focus - https://livingmyculture.ca/
• Navigating the End of Life: A Road Map for Caregivers webinar - https://www.familycaregiversbc.ca/archives/video/navigating-the-end-of-life-a-road-map-for-caregivers
• Finding Peace at the End of Life: A Death Doula's Guide for Families and Caregivers by Henry Fersko-Weiss (2020 edition) - https://bookshop.org/p/books/finding-peace-at-the-end-of-life-a-death-doula-s-guide-for-families-and-caregivers-henry-fersko-weiss/13032460?ean=9781590035023
• Caring for the Dying: The Doula Approach to a Meaningful Death by Henry Fersko-Weiss (2017 edition) - https://www.amazon.ca/Caring-Dying-Doula-Approach-Meaningful/dp/1573246964
• BC Grief and Bereavement Society: list of support groups and other help for BC residents (also some options are across Canada) Contact the Helpline at 604-738-9950 and toll-free 1-877-779-2223 - https://bcbh.ca/groupsandevents/
• TalkDeath: death positive, grief and bereavement resources - https://www.talkdeath.com/
• Family Caregivers of BC Caregiver Support Line: 1-877-520-3267 (Monday through Friday 8:30am to 4pm PT)

Connect With Us!

To read a full transcript of each episode, visit the Family Caregivers of BC website https://www.familycaregiversbc.ca/podcast

Visit us at our office:

#6 – 3318 Oak Street,
Victoria, BC
V8X 1R1

Hours are Monday through Friday, 8:30 am to 4:00 pm

Telephone: (250) 384-0408
Toll-Free Line Within BC: 1-877-520-3267
Fax: (250) 361-2660
Email: info@familycaregiversbc.ca

Facebook https://www.facebook.com/FamilyCaregiversBC/

Instagram https://www.instagram.com/familycaregiversofbc/

LinkedIn https://www.linkedin.com/company/18122187

Twitter https://twitter.com/caringbc

Thank you!

BC Ministry of Health - Patients as Partners Initiative - https://www2.gov.bc.ca/gov/content/health/about-bc-s-health-care-system/partners/patients

Organized Sound Productions - https://www.organizedsound.ca/

How would you retain your sense of self if you required full-time care?

When Brooke Ellison was 11 years old, a car accident left her a ventilator-dependent quadriplegic. Her mother Jean stepped into the role of full-time caregiver, and their familial and caregiving relationship balance has continued for over thirty years.

Dr. Brooke Ellison graduated from Harvard, wrote two memoirs, and is a frequent public speaker on resilience, leadership, and hope. In this episode, she reflects on her experiences as a care recipient—both then and now. Specifically, Brooke shares how she navigates disability and how her definition of this term has changed and grown over the years.

Brooke shares what care feels like from the other side of the table:

• Why building a routine is so important when unpredictability is unavoidable
• How Brooke’s concept of disability as vulnerability has changed over the years
• The challenge of finding alone time when care needs are so pervasive
• Considering and communicating about the future despite its uncertainty

Resources:

• Family Caregivers of BC Caregiver Support Line: 1-877-520-3267 (Monday through Friday 8:30am to 4pm PT)
• Learn more about Brooke - https://www.brookeellison.com/
• Look Both Ways by Brooke Ellison - https://bookshop.org/p/books/look-both-ways-brooke-ellison/18034792?ean=9781951568184
• Miracles Happen by Brooke Ellison - https://www.amazon.ca/Miracles-Happen-Mother-Daughter-Journey/dp/0786867701

Connect With Us!

To read a full transcript of each episode, visit the Family Caregivers of BC website https://www.familycaregiversbc.ca/podcast

Visit us at our office:
#6 – 3318 Oak Street,
Victoria, BC
V8X 1R1
Hours are Monday through Friday, 8:30 am to 4:00 pm

Telephone: (250) 384-0408
Toll-Free Line Within BC: 1-877-520-3267
Fax: (250) 361-2660
Email: info@familycaregiversbc.ca

Facebook https://www.facebook.com/FamilyCaregiversBC/

Instagram https://www.instagram.com/familycaregiversofbc/

LinkedIn https://www.linkedin.com/company/18122187

Twitter https://twitter.com/caringbc

Thank you!

BC Ministry of Health - Patients as Partners Initiative - https://www2.gov.bc.ca/gov/content/health/about-bc-s-health-care-system/partners/patients

Organized Sound Productions - https://www.organizedsound.ca/

How do you honour both yourself and your family member when giving full-time care? In this episode, Jean Ellison speaks about her experience as a full-time caregiver to her daughter, Brooke, whose story of life as a ventilator-dependent quadriplegic is well-known and inspirational.

For more than 30 years, Jean Ellison has balanced the roles of full-time caregiver and mother. While it was always clear to Jean that Brooke would live at home and not in a care facility, accepting her new reality and career trajectory was not a simple process. Jean strives to find happiness and laughter in every day, treating each one as a clean slate for both herself and her daughter.

Get a glimpse into Jean’s challenging and heartening experience:

• What it was like to be trained and tested to care for her own daughter
• Who she has become despite an unforeseeable change in her life’s direction
• Where she finds the middle ground between home care and motherly compassion
• How hope and acceptance can combine to create a fulfilling life despite the obstacles.

Resources: 

• https://www.brookeellison.com/
• Family Caregivers of BC Caregiver Support Line: 1-877-520-3267 (Monday through Friday 8:30am to 4pm PT)

Connect With Us!

To read a full transcript of each episode, visit the Family Caregivers of BC website https://www.familycaregiversbc.ca/podcast

Visit us at our office:

#6 – 3318 Oak Street,
Victoria, BC
V8X 1R1

Hours are Monday through Friday, 8:30 am to 4:00 pm

Telephone: (250) 384-0408

Toll-Free Line Within BC: 1-877-520-3267

Fax: (250) 361-2660

Email: info@familycaregiversbc.ca

Facebook https://www.facebook.com/FamilyCaregiversBC/

Instagram https://www.instagram.com/familycaregiversofbc/

LinkedIn https://www.linkedin.com/company/18122187

Twitter https://twitter.com/caringbc

Thank you!

BC Ministry of Health - Patients as Partners Initiative - https://www2.gov.bc.ca/gov/content/health/about-bc-s-health-care-system/partners/patients

Organized Sound Productions - https://www.organizedsound.ca/

At some point in our lives, we’ll all be faced with a tough decision we didn’t see coming. In most caregiving situations, people enter the caregiving role with love and passion. Then pretty soon, they begin to see some of the bigger implications, such as how finances are a big factor in the choices that affect the care recipient OR the caregiver themself. In today’s episode, we chat with Shannon Lee Simmons, a Certified Financial Planner and the author of a new book “No Regret Decisions: Making Good Choices During Difficult Times”, to tackle some of the anxiety and emotional stress for caregivers that come with making important financial decisions. And answer the question, how do we make good decisions during difficult times?

Resources: 

• Shannon Lee Simmon’s new book: “No-Regret Decisions: Making Good Choices During Difficult Times” - https://bookshop.org/p/books/no-regret-decisions-making-difficult-decisions-in-difficult-times-shannon-lee-simmons/15788581?ean=9781443463454

• Connect with Shannon - https://shannonleesimmons.com/

• FCBC Overview of Financial General Resources, Tax Benefits and Credits for Caregivers - https://www.familycaregiversbc.ca/wp-content/uploads/2022/02/Guide-to-Financial-Assistance-for-Caregivers.pdf

• Involuntary Separation Article - https://www.familycaregiversbc.ca/wp-content/uploads/2020/02/Involuntary-Separation.pdf

• Government of Canada Benefits Finder - https://srv138.services.gc.ca/daf/q?id=37d7bcd6-f3f3-492b-ac3e-b869d7fb005c&goctemplateculture=en-ca

• Family Caregivers of BC Caregiver Support Line: 1-877-520-3267 (Mon-Fri 8:30am-4pm PT) 

• Canada Revenue Agency General Enquiries Line: 1-800-959-8281 (Mon-Fri 8 am- 8pm and Saturday 9am-5pm) 

Connect With Us!

To read a full transcript of each episode, visit the Family Caregivers of BC website https://www.familycaregiversbc.ca/podcast

Visit us at our office:

#6 – 3318 Oak Street,

Victoria, BC

V8X 1R1

Hours are Monday through Friday, 8:30 am and 4:00 pm

Telephone: (250) 384-0408

Toll-Free Line Within BC: 1-877-520-3267

Fax: (250) 361-2660

Email: info@familycaregiversbc.ca

Facebook https://www.facebook.com/FamilyCaregiversBC/

Instagram https://www.instagram.com/familycaregiversofbc/

LinkedIn https://www.linkedin.com/company/18122187

Twitter https://twitter.com/caringbc

Thank you!

BC Ministry of Health - Patients as Partners Initiative - https://www2.gov.bc.ca/gov/content/health/about-bc-s-health-care-system/partners/patients

Organized Sound Productions - https://www.organizedsound.ca/

Many caregivers are supporting care recipients from a long distance. This form of caregiving brings with it a unique set of challenges as we try to provide support from afar. In this episode, Bill guides a panel of long distance caregivers, Mary Chan, Karla Wilson, and Victoria Lougheed, through a dynamic conversation filled with positive energy and laughter. The foursome came together to talk about their challenges of caring while not being able to physically be there, and to share some insights including some beautiful moments along the path that have made their caregiving journey a memorable experience.

Resources: 

• Caregiving From A Distance - https://www.familycaregiversbc.ca/wp-content/uploads/2021/04/Caregiving-from-a-Distance.pdf
• Tips For Lond Distance Caregivers - https://www.familycaregiversbc.ca/wp-content/uploads/2021/04/Tips-for-Long-Distance-Caregivers.pdf
• Closing the Gap - https://www.familycaregiversbc.ca/wp-content/uploads/2021/04/Closing-the-Gap.pdf
• Caring For Yourself While Caring For Others (webinar) - https://www.familycaregiversbc.ca/archives/video/caring-for-yourself-while-caring-for-others

Connect With Us!

Family Caregivers of BC Website https://www.familycaregiversbc.ca/

Visit us at our office:

#6 – 3318 Oak Street,

Victoria, BC

V8X 1R1

Hours are Monday through Friday, 8:30 am and 4:00 pm.

Telephone: (250) 384-0408

Toll-Free Line Within BC: 1-877-520-3267

Fax: (250) 361-2660

Email: info@familycaregiversbc.ca

Facebook https://www.facebook.com/FamilyCaregiversBC/

Instagram https://www.instagram.com/familycaregiversofbc/

LinkedIn https://www.linkedin.com/company/18122187

Twitter https://twitter.com/caringbc

Thank you!

BC Ministry of Health - Patients as Partners Initiative https://www2.gov.bc.ca/gov/content/health/about-bc-s-health-care-system/partners/patients

Organized Sound Productions https://www.organizedsound.ca/

The experience of living and caring for someone with dementia is not always a universal experience and there can be different situations and patterns. However, there are some similar challenges caregivers face when trying to communicate with care recipients who are living with dementia. In this episode, Bill Israel speaks with Amelia Gillies, a Support and Education Coordinator with the Alzheimer's Society of BC about caring for someone living with dementia. Amelia shares stories she's heard on the support line, and also her own personal experience caregiving for people with dementia. Listen in as she provides education and suggestions for you to try when you’re caregiving.

Resources: 

We’d love to share the First Link® Dementia Helpline as our primary resource:

• English: 1-800-936-6033 Monday to Friday 9 am to 8 pm
• Cantonese and Mandarin: 1-833-674-5007 Monday to Friday 9 am to 4 pm
• Punjabi: 1-833-674-5003 Monday to Friday 9 am to 4 pm
• Alzheimer’s Society of BC https://alzheimer.ca/bc/
• Creativity as a Form of Self Care episode https://www.familycaregiversbc.ca/podcast/episode-14-creativity-as-a-form-of-self-care
• Family Caregivers of BC Caregiver Support Line at 1-877-520-3267

Connect With Us!

Family Caregivers of BC Website https://www.familycaregiversbc.ca/

Visit us at our office:

#6 – 3318 Oak Street,

Victoria, BC

V8X 1R1

Hours are Monday through Friday, 8:30 am and 4:00 pm

Telephone: (250) 384-0408

Toll-Free Line Within BC: 1-877-520-3267

Fax: (250) 361-2660

Email: info@familycaregiversbc.ca

Facebook https://www.facebook.com/FamilyCaregiversBC/

Instagram https://www.instagram.com/familycaregiversofbc/

LinkedIn https://www.linkedin.com/company/18122187

Twitter https://twitter.com/caringbc

Thank you!

BC Ministry of Health - Patients as Partners Initiative https://www2.gov.bc.ca/gov/content/health/about-bc-s-health-care-system/partners/patients

Organized Sound Productions https://www.organizedsound.ca/

How can we break down barriers and humanize the caregiving process? Through the power of pure emotion, unlocked through music. No matter what your musical background is, music used intentionally can be beneficial to improve health and well-being. Not only for the care recipient, but for you as well, as a caregiver. Today, we’ll hear how music enhances the care experience. I sat down with Bev Foster, a co-founder of the Room 217 Foundation and its Executive Director.

In this episode, Bev shares her experience caring for her dad and also for her grandmother who journeyed through dementia. Bev incorporated music into his palliative care and found that it was a very helpful tool both for her father and for herself. So much so, that Bev started a foundation to share music as a caregiving tool with other caregivers.

Resources: 

• Music Care by Room 217 Foundation https://www.musiccare.org/

Connect With Us!

Family Caregivers of BC Website https://www.familycaregiversbc.ca/

Visit us at our office:

#6 – 3318 Oak Street,

Victoria, BC

V8X 1R1

Hours are Monday through Friday, 8:30 am and 4:00 pm.

Telephone: (250) 384-0408

Toll-Free Line Within BC: 1-877-520-3267

Fax: (250) 361-2660

Email: info@familycaregiversbc.ca

Facebook https://www.facebook.com/FamilyCaregiversBC/

Instagram https://www.instagram.com/familycaregiversofbc/

LinkedIn https://www.linkedin.com/company/18122187

Twitter https://twitter.com/caringbc

Thank you!

BC Ministry of Health - Patients as Partners Initiative https://www2.gov.bc.ca/gov/content/health/about-bc-s-health-care-system/partners/patients

Organized Sound Productions https://www.organizedsound.ca/

Engaging with creativity is a form of self-care that can benefit both a caregiver and a care recipient in many ways. In 2015, psychologist and art therapist Dr. Cathy Malchiodi cited multiple studies confirming that being creative can increase positive emotions, lessen depressive symptoms, reduce stress, decrease anxiety, and even improve immune system functioning. A 2016 study in The Journal of Positive Psychology supported these earlier findings, concluding that spending time on creative goals during a day is associated with higher activated positive affect (PA) on that day. Positive affect is the extent to which people experience positive moods, such as joy, happiness, and optimism. Higher positive effects lower stress and expand our perspective so that we notice more possibilities in our lives.

In today’s episode, Bill chats with Faye Melling, a caregiver for her adult daughter. Faye talks about how being creative has helped her deal with some of the ups and downs in her caregiving journey. She also shares how her daughter is using artistic expression as a way to deal with some of the challenges she’s experiencing due to her condition.

Resources: 

• Article on outcomes of art therapy and colouring for caregivers of cancer patients: https://www.sciencedirect.com/science/article/pii/S1462388919301152
• Article on how creativity is an advantage for self-care: https://nyctherapy.com/therapists-nyc-blog/creativity-is-your-secret-advantage-for-mental-health-and-well-being/
• Study on benefits of creative arts leisure program to caregivers: https://journals.sagepub.com/doi/full/10.1177/2055102915581563
• Study on the connection between heart, healing, and public health with links to psychologist and art therapist Dr. Cathy Malchiodi https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2804629/
• “Caregiver Well-Being” in the Resource Center at https://www.familycaregiversbc.ca/caregiver-learning-center/read-resources

Connect With Us!

Family Caregivers of BC Website https://www.familycaregiversbc.ca/

Toll-Free Line Within BC: 1-877-520-3267

Fax: (250) 361-2660

Email: info@familycaregiversbc.ca

Facebook https://www.facebook.com/FamilyCaregiversBC/

Instagram https://www.instagram.com/familycaregiversofbc/

LinkedIn https://www.linkedin.com/company/18122187

Twitter https://twitter.com/caringbc

Thank you!

BC Ministry of Health - Patients as Partners Initiative https://www2.gov.bc.ca/gov/content/health/about-bc-s-health-care-system/partners/patients

Organized Sound Productions https://www.organizedsound.ca/

For many people as they age, living as long as they can in their own home is ideal. We love our comforts, our routine, and our independence. But there comes a time when the decision to have more support or to move into long-term care becomes a reality, whether because of a medical condition or safety concerns. This decision can be a significant challenge as there are many factors to consider when needing additional support.

In this episode, Janet Power, Executive Director of Sunrise Senior Living in Victoria BC, shares great information around transitioning to residential care and steps for gaining more support for the care recipient and caregiver.

Resources: 

• Moving from Home to Facility Flipbook FCBC Resource  https://www.familycaregiversbc.ca/wp-content/uploads/2021/11/Moving-from-Home-to-Facility-Podcast-Resource-1.pdf
• For Long Term Care, to arrange LTC through the Health Authority, call the local Home and Community Care Office. (The BC Health Authority General Enquiry Lines that we have listed in the back of our Quarterly Newsletter) https://www2.gov.bc.ca/gov/content/health/accessing-health-care/home-community-care/how-to-arrange-for-care 
• If you are interested in receiving assisted living services or know of someone who might be in need of these services, you can contact the home and community care office of your health authority or you can have a health care professional make a referral on your behalf. https://www2.gov.bc.ca/gov/content/health/accessing-health-care/home-community-care/care-options-and-cost/assisted-living
• Finding an Assisted Living Residence https://www2.gov.bc.ca/gov/content/health/assisted-living-in-bc/finding-an-assisted-living-residence
• Don’t Judge a Book by its Cover- What to Look for in a Care Facility https://www.familycaregiversbc.ca/wp-content/uploads/2021/04/Facility-Selection-Checklist.pdf
• How to Check Care Facility Records https://www.healthspace.ca/clients/viha/viha_website.nsf/CCFL-Main?OpenView
• Who Pays for Care? https://www2.gov.bc.ca/gov/content/health/accessing-health-care/home-community-care/who-pays-for-care

Online Tools and Apps:

Route 65 was developed by EngAge BC, a non-profit operating arm of the BC Care Providers Association (BCCPA), in response to a visible gap in quality information about seniors’ living and wellness options in the province. On Route 65, seekers can find more information on independent living, assisted living, long-term care and home health care options.

Route 65 also helps users navigate the seniors living and wellness continuum through our Glossary, Frequently Asked Questions and Resource pages, along with Walter, our 24-7 virtual concierge chatbot, who helps triage seekers to the most appropriate options.

Call 1-877-955-6565 or learn more at https://route65.ca/.

Connect With Us!

Family Caregivers of BC Website https://www.familycaregiversbc.ca/

Toll-Free Line Within BC: 1-877-520-3267

Fax: (250) 361-2660

Email: info@familycaregiversbc.ca

Facebook https://www.facebook.com/FamilyCaregiversBC/

Instagram https://www.instagram.com/familycaregiversofbc/

LinkedIn https://www.linkedin.com/company/18122187

Twitter https://twitter.com/caringbc

Thank you!

BC Ministry of Health - Patients as Partners Initiative https://www2.gov.bc.ca/gov/content/health/about-bc-s-health-care-system/partners/patients

Organized Sound Productions https://www.organizedsound.ca/