The Caregiver's Journey

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.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we created the Navigating Dementia Caregiving Roadmap to guide you through your caregiving journey. The roadmap has 20 steps, organized into three stages: in the beginning, the messy middle, and later on. (For more on all three stages, see Podcast and Blog 66.) You can find the full, interactive roadmap, along with a free downloadable digital guide, at thecaregiversjourney.org — just click the Caregiving Roadmap icon on the homepage. The roadmap also includes a self-assessment tool: five questions that will help you identify which stage of caregiving you’re in. Wherever you land, we recommend going back to look at the steps before that stage, so you don’t miss anything important.

In this episode, we’re covering steps seven through ten — still part of the “in the beginning” stage. If you haven’t worked through steps one through six yet, start there first (see Blog 68), since a lot of that early work is done side by side with your loved one.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/
Donate: https://give.cornerstone.cc/thecaregiversjourney
Instagram: https://www.instagram.com/thecaregiversjourney/
Facebook: https://www.facebook.com/thecaregiversjourneys/
Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/
Email: sue@thecaregiversjourney.org, nancy@thecaregiversjourney.org

Full Show Notes

https://thecaregiversjourney.org/71-navigating-dementia-caregiving-roadmap-v4-steps-7-10-alzheimers-and-other-dementias/

Additional Resources Mentioned

Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney
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

In this episode we covered steps 7-10 of the 20 step roadmap. 

The last of the steps in the In The Beginning stage.

Step 7: Continue your education 
Step 8: Start planning for the next stage of care
Step 9: Investigate your local government community support
Step 10: Evaluate driving risks

Read More in This Blog

https://thecaregiversjourney.org/71-navigating-dementia-caregiving-roadmap-v4-steps-7-10-alzheimers-and-other-dementias-2/

“There’s no perfect option out there, and there’s no community that’s going to check every single box.” — Kelly Graffius

Are you facing the moment you hoped would never come, trying to choose the right memory care community for your loved one? If you are not sure where to start, you are not alone.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we know how emotional and complicated this decision can feel. We’re sharing six practical tips from Kelly Graffius, certified senior advisor and president of OASIS Senior Advisors in Roswell, Georgia, who has guided countless families through this exact process.

If you are early in your dementia journey, you may start out evaluating independent or assisted living. No matter where you begin, this often leads to evaluating memory care as well, so this is our focus here. 

Full Show Notes

https://thecaregiversjourney.org/70-choosing-the-right-memory-care-community-six-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney
https://www.oasissenioradvisors.com/locations/roswell-ga/community-guide/
Kelly Graffius phone +1 678-753-8155.
Checklist https://thecaregiversjourney.org/guides/#guides
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

Tip 1: Know your goals.

Tip 2: Decide on your preferred geographic location.

Tip 3: Decide on your all in budget.

Tip 4: Understand the care component.

Tip 5: Go on a tour.

Tip 6: Consider using an expert

Read More in This Blog

https://thecaregiversjourney.org/70-choosing-the-right-memory-care-community-six-essential-tips/

"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.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/
Donate: https://give.cornerstone.cc/thecaregiversjourney
Instagram: https://www.instagram.com/thecaregiversjourney/
Facebook: https://www.facebook.com/thecaregiversjourneys/
Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/
Email: sue@thecaregiversjourney.org, nancy@thecaregiversjourney.org

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

https://thecaregiversjourney.org/69-five-roles-that-transform-caregiving-and-how-love-survives-each-one/

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.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we know how disorienting those first weeks after a diagnosis can be. That’s why we created the Navigating Dementia Caregiving Roadmap — 20 steps to guide you through your caregiving journey, organized into the three stages of dementia caregiving: in the beginning, the messy middle, and later on. (If you want to hear more about all three stages, check out Podcast and Blog 66.)

In this episode, we’re walking through the first six steps of the roadmap — the steps we recommend you take right after diagnosis, while you’re in the “in the beginning” stage. You can find the full, interactive roadmap, along with a free downloadable guide, at thecaregiversjourney.org.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/
Donate: https://give.cornerstone.cc/thecaregiversjourney
Instagram: https://www.instagram.com/thecaregiversjourney/
Facebook: https://www.facebook.com/thecaregiversjourneys/
Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/
Email: sue@thecaregiversjourney.org, nancy@thecaregiversjourney.org

Full Show Notes

https://thecaregiversjourney.org/68-dementia-caregiving-roadmap-v4-steps-1-6-alzheimers-and-other-dementias/

Additional Resources Mentioned

Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney
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 the first 6 steps:

Step 1: Reach out for guidance 
Step 2: Update legal documents, end of life planning and other long term care plans
Step 3: Understand the financial situation 
Step 4: Find support groups
Step 5: Educate yourself on early caregiving journey topics
Step 6: Investigate the US Medicare GUIDE program

Read More in This Blog

https://thecaregiversjourney.org/68-the-first-six-steps-to-take-after-a-dementia-diagnosis/

“When I look back on my caregiving experience, I found a purpose and a true sense of self that I didn’t know I had. Yes, there was a lot of drama and a lot of trauma, but I look back and think - this was a great experience and something I feel good about doing for the people I love.” - Nancy Treaster

There’s a moment in dementia caregiving where you realize your relationship has fundamentally changed. Your loved one may no longer recognize your name, your face, or the decades you’ve shared together. How do you keep loving someone through that? How do you stay present when the person in front of you is both familiar and a stranger?

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve navigated these moments personally - and we’re sharing what we’ve learned about showing up, staying present, and working to keep finding ways to connect with your loved one as their memory fades. Nancy’s chapter, “Love Beyond Memory,” is featured in the Caregivers Advocate, Volume 3.

Let’s explore four tips for loving beyond memory - even when the person you love doesn’t remember who you are.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/
Donate: https://give.cornerstone.cc/thecaregiversjourney
Instagram: https://www.instagram.com/thecaregiversjourney/
Facebook: https://www.facebook.com/thecaregiversjourneys/
Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/
Email: sue@thecaregiversjourney.org, nancy@thecaregiversjourney.org

Full Show Notes

https://thecaregiversjourney.org/67-show-up-stay-present-keep-finding-ways-to-connect-four-tips-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 shared 4 tips:

Don't flip the switch 
Let go of who they were, and fall in love with who they are now
Redefine what connection means
Give yourself permission to get help — before you are drowning

Read More in This Blog

https://thecaregiversjourney.org/67-love-beyond-memory-four-tips-for-showing-up-staying-present-and-staying-connected/