Show Notes
"Two words have been the foundation of every decision I made across all of my caregiving roles — safe and happy. Before every choice, I would ask, does this help my loved one be safe? And does this support them being happy?" — Sue Ryan
There was a moment in a doctor's office when five neurologists agreed on one word: dementia. In that moment, Sue looked at her husband Jack, squeezed his hand, and said, "I love you. We're on this journey together." What she couldn't have known at that moment was how many roles she'd be asked to take on — and how, through every single one of them, their love wouldn't disappear. It would just change shape.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how caregiving can feel all-consuming — so much so that love can get buried under the weight of daily responsibilities. In this post, we're drawing from Sue's chapter in the Caregivers Advocate Book, Volume Three: "When Caregiving Roles Change, Love Remains," to explore five distinct roles caregiving calls us into and how to show up in each one so love doesn't get lost.
Underneath all five roles, two practices held everything together for Sue: acceptance — honoring everything exactly the way it is, without having to like it or understand it — and presence, staying fully in the moment rather than wishing for the past or worrying about the future.
Let's explore the five roles and how to be intentional in each of them.
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Full Show Notes
https://thecaregiversjourney.org/69-five-changing-caregiving-roles-alzheimers-and-other-dementias/
Additional Resources Mentioned
Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney The Caregiver’s Advocate Volume 3: https://amzn.to/4vS5Cy8 The Caregiver’s Journey Navigating Dementia Caregiving Roadmap: https://roadmap.thecaregiversjourney.org/ Available as an interactive page on our website that walks you through the three stages of your dementia family caregiver journey. Includes the option to download the guide for free.
Takeaways
We discussed five roles:
Role 1: Protector — Recognizing it’s up to you to keep your loved one safe Role 2: Loved One — expressing your love intentionally, every time Role 3: Primary Caregiver — meeting your care receiver in the moment, not where they used to be or where you wish they were Role 4: Care Partner — supporting and expressing gratitude to the care team on your loved one's behalf Role 5: Friend — finding the friendship that's still possible
Read More in This Blog
More from The Caregiver's Journey
When someone gets a diagnosis of dementia, there are two people who need to be cared for: the person living with dementia and you, the primary caregiver.” Nancy Treaster
Do you leave your loved one’s doctor’s appointments feeling intimidated or confused instead of empowered? Do you wish you had a clearer role in shaping their care? Many caregivers feel this way, and there is a better way to approach these visits.
Did your loved one recently receive a diagnosis of dementia? Have you already worked through the first six steps of the Navigating Dementia Caregiving Roadmap? If so, you’ve built a solid foundation, and it’s time to keep going.
“There’s no perfect option out there, and there’s no community that’s going to check every single box.” — Kelly Graffius
Did your loved one recently receive a diagnosis of dementia? Are you at a loss for what to do next? Maybe you’re overwhelmed because you can’t find the information you need — or maybe it’s the opposite, and you’re drowning in so many conflicting resources that you don’t know where to start.