Care Partners

Welcome to the SPA-LTC Care Partner Community! A space to learn, share and feel connected with each other. Join us as you move through your care partner journey.

What is a Care Partner?

A Care Partner is someone who chooses to be present with another, in any setting, through their care journey.

Who Can be a Care Partner?

A Care Partner is a person(s) in the care receiver’s life who can be of any age and gender. They can be a:

  • family member
  • partner
  • friend
  • or others identified by the care receiver

What Does a Care Partner Do?

A Care Partner helps to provide social, physical, emotional, and spiritual support to care receivers of any age, gender, gender identity, nature of disability or illness. This can include spending quality time with the person (e.g. sharing stories, singing, music), doing errands, providing support in decision making, care coordination and ensuring continuity of care. Care Partners can be present in diverse settings including but not limited to in the home, hospital, and in long-term home where care is delivered.

Margaret and her father

“We started our ‘dance’ with dementia just before COVID-19. Finding people who could relate to what my dad and I were going through was so reassuring for me! It doesn’t change what is happening but I have the resources to help me through.

Marlene

Pictured above: Margaret and her dad

“Taking Mom to the nursing home was like dropping my child at daycare for the first time and walking away – how would I find out about her care and if she was okay? Whom should I call? When we were told Mom would be on palliative care we thought we only had weeks or days left together. There was a lot to absorb and little time and energy to search for information. Throughout Mom’s 7 year stay we were able to develop a partnership for her care and importantly, good communication”

Pam

Why a Care Partner Community?

This community was created with the help of Care Partners, such as yourself, who care and have cared for loved ones and people in their life through a palliative approach. Through their experiences, we have identified resources, podcasts and videos that we hope will be helpful to you.

Things I Wish I Had Known Earlier

Being a Care Partner is rewarding but you can also feel many other things like stress, confusion, anger, loneliness and more. This is often caused by not having access to enough information and/or people in your life who you can go to for emotional support, assistance, who you can learn from and receive guidance and support. To help you through the palliative process, the SPA-LTC Care Partners have come up with a list of Things I Wish I Had Known Earlier – key resources to support you and the person you are caring for through the palliative care process.

Based on the experiences of Marlene, Margaret and Pam.

Care Partners can often put pressure on themselves to know everything at once and make the ‘right’ decision. These feelings can be tied to the need to feel in control as things are changing quickly, because the Care Partner is being asked to make decisions that are outside of their common knowledge, and for many more reasons. Reaching out for support from the care team, exploring the SPA-LTC website and resources and connecting with others who have similar experiences can help.

Feeling overwhelmed is a common experience for many Care Partners. Find ways to take care of yourself to maintain your wellbeing when possible.

Margaret: “From my experience, I want to share with others that even though it can be incredibly hard at the beginning, when you first bring your loved one to the long-term Care home, there is hope. That your family member will settle into the home.”

Care Partner Group Quote: “As Care Partners, we wish we had known sooner that it is normal to feel guilt when deciding to put your loved one in a long-term care facility. For us, our guilt was tied to feelings of failure, the belief that we were responsible for the care of my family member until the end of their life.”  For more information on how to cope with guilt you can visit Assisting Hands – Dealing With Guilt.

Pam: “Mom’s care staff came to know her better as we shared these memories and her life experiences with them, and engaged them in the conversation.” 

Pam, Marlene and Margaret feel that being a caregiver provided a special time to reflect on family and life experiences together.  It allowed us time to remember events of our loved ones’ early days that others did not know and we enjoyed remembering these events. While the conversation was one-way, as Mom’s verbalizations were difficult to understand, she showed recognition at times and those times are treasured memories.  

Pam: “Feelings of both relief and anxiety as a care partner: juggling my children at home, full-time work, care for Mom when she lived alone at home and the distance between us was stressful. Mom had full-time care at home prior to moving to a Nursing Home; however due to our rural location care options were limited and a lot of oversight was required. We were relieved when she moved to the Nursing Home and found that the care was much superior to that which she received at home. We were able to develop regular communication with the staff to discuss any concerns or questions about Mom’s care. It was wonderful to spend the majority of our time together visiting, laughing and exploring the gardens at the Nursing Home.”

SPA-LTC Resources

Here are some resources and podcasts developed by SPA-LTC that our Care Partners have found useful.

The list below is not complete, but we hope it provides you with some guidance, advice, and comfort.

For more resources not linked here, please visit the SPA-LTC Toolkit or the Resource Library.

Comfort Care at the End-of-Life

This guide is intended for caregivers of a person whose health has been severely affected by Alzheimer’s disease or by another type of degenerative disease of the brain.

ComfortCareBooklet_ENDownload

Family Care Question Prompts

After reviewing the Comfort Care Booklet, you may have
questions to discuss at your upcoming Family Care Conference.

QuestionPromptList_ENDownload

Myths about a Palliative Approach

Many Canadians misunderstand how the palliative approach works. These are 5 common myths about the palliative approach, debunked.

SPA-LTC Myths-FINAL2Download

Food & Fluids at End of life

This pamphlet was made to help persons
experiencing food and fluid intake changes,
and their families, know what to expect as their
disease progresses towards the end of life.

SPA-LTC-Foods-and-Fluids-Trifold-ENGLISH-FINAL2Download

What to Expect at the End of Life

This video explains the changes that people may go through, and the experiences a care providers might have when during end of life care and palliation.

Watch

Lung Disease Illness Trajectory

This pamphlet was made to help persons with Advanced Lung Disease (ALD) and their families know what to expect at the end of life so they can plan ahead. Talking about preferences early on is an important
first step to a Palliative Approach to Care.

Lung Disease Illness Trajectory Guide- Canada FRDownload

Kidney Disease Illness Trajectory

This pamphlet was made to help persons with Advanced Kidney Disease (AKD) and their families know what to expect at the end of life so they can plan ahead. Talking about preferences early on is an important
first step to a Palliative Approach to Care.

Kidney Disease Illness Trajectory Guide- Canada ENDownload

Dementia Illness Trajectory

This pamphlet was made to help persons with Dementia and their families know
what to expect at the end of life so they can plan ahead. Talking about preferences
early on is an important first step to a Palliative Approach to Care.

Dementia Illness Trajectory Guide- Canada ENDownload

Frailty Illness Trajectory

This pamphlet was made to help persons with Advanced Frailty and their families know what to expect at the end of life so they can plan ahead. Talking about preferences early on is an important first step to a Palliative Approach to Care.

Advanced Frailty Illness Trajectory Guide- Canada ENDownload

Heart Failure Illness Trajectory

This pamphlet was made to help persons with Heart Failure (HF) and their families know what to expect at the end of life so they can plan ahead. Talking about preferences early on is an important first step to a Palliative Approach to Care.

Heart Failure Illness Trajectory Guide- Canada ENDownload

Podcasts

Have a listen and explore topics related to the Care Partner journey.

Green Care Farms
with Rebekah Churchyard

Green Care Farms CEO and Founder Rebekah Churchyard provides outdoor day programs for people with dementia, connecting them with nature.

Listen on BuzzSprout

End of Life Doulas in long-term care
with Olga Nikolajev

What role do End of Life Doulas play in long-term care, and how can they help those affected during the dying experience?

Listen on BuzzSprout

Family Caregiver experience
with Sandra Chow

Sandra talks about her experiences caring for her mother in long-term care, and the importance of a palliative approach to care.

Listen on BuzzSprout

A Cup of Care
with Katie Ottley and Sibtain Ali

Join co-hosts Katie Ottley and Sibtain Ali for a series of conversations with Canadian family caregivers, while they learn that no two families are alike.

Listen on BuzzSprout

We Welcome Your Feedback and Experiences!

This tab was created by Care Partners for Care Partners. We also want to hear from you! Your welcome to submit your feedback, questions, or comments using our contact form. We would also love to hear from about your story, what would you like to know more about or how can this page be useful to you.

Pictured here are the Care Partner Working Group members.

Get Involved

Are you a Care Partner? Do you want to make a difference in the lives of people living in long-term care or who have a life limiting illness?

The SPA-LTC Care Partner Working Group is seeking new members! To learn more or to express your interest in joining the group use our contact form.

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