The Caregiver's Journey

"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/

Have you ever felt overwhelmed searching for the right information at the right time, or found yourself drowning in conflicting resources that leave you more confused than when you started? You’re not alone. Dementia family caregiving is a long journey, and it looks very different depending on where you are in it.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we built the Navigating Dementia Caregiving Roadmap to help you find the right resources at the right time. As with all our resources, it’s a free, 20-step roadmap available on our website thecaregiversjourney.org. The roadmap page also includes a self-assessment tool to help you identify which caregiving stage you’re in right now. Revisit this assessment tool throughout your caregiving journey to help you know the caregiving stage you’re currently in.

Let’s walk through the three distinct stages of dementia family caregiving so you know what to expect and where to focus your energy.

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/66-what-stage-of-dementia-caregiving-are-you-in-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

The three stages of dementia family caregiving and the self-assessment tool on the caregiving roadmap page of our website, thecaregiversjourney.org.

The first stage is “In the Beginning.”
The second stage is “The Messy Middle.”
The third stage is “Later On.”

If our self-assessment tool shows you are further along in your journey, start there. Once you feel confident in where you are, we encourage you to go back and explore the earlier steps. You may find helpful tips that apply to where you are today, even if those steps were designed for an earlier part of the journey.

Read More in This Blog

https://thecaregiversjourney.org/66-what-stage-of-dementia-caregiving-are-you-in/

Do you feel completely alone in your caregiving journey? No family backup, friends have faded away, and you can’t afford professional help? You are not alone — and there is real help available, often at little or no cost.

We are Elizabeth Miller of Happy Healthy Caregiver and Sue Ryan and Nancy Treaster of The Caregiver's Journey. In this podcast we’ve joined forces with - together we’ve lived it, learned from it, and made it our mission to walk alongside family caregivers. We’re sharing four key resource areas that can provide real relief without breaking the bank.

Think about the analogy of a frog in water. If a frog jumps into boiling water, it immediately jumps out. But if the water starts lukewarm and slowly heats up, the frog doesn’t realize the danger until it’s too late. That’s how burnout works for caregivers — especially solo caregivers with fewer helping hands. The average caregiver is in this role for four and a half years. For dementia family caregivers, it can stretch to ten years or more. You can do it alone for a while, but not indefinitely. Here’s where to turn.

Full Show Notes

https://thecaregiversjourney.org/podcast/

Additional Resources Mentioned

Happy Healthy Caregiver website: https://happyhealthycaregiver.com/
Area Agency on Aging Finder: https://eldercare.acl.gov/home
Lifespan Respite Voucher Program: https://archrespite.org/ta-center-for-respite/respite-voucher-programs/apply-for-state-lifespan-respite-voucher-programs/
Veterans Administration office locator: https://www.va.gov/find-locations/
Elizabeth Dole Foundation Respite: https://hiddenheroes.org/resources-online-education/respite/
Medicare Guide Program Eligible: https://www.cms.gov/priorities/innovation/guide/faqs#ben-cgs
Medicare Guide Program locator: https://bit.ly/4n3uArv
Dementia Support Group finder: https://www.alz.org/event-search?category=Support+Groups
Virtual Support Group: daughterhood.org
Adult Day programs - ask your Area Agency on Aging to help find one:  https://eldercare.acl.gov/home
National Adult Day Services Finder: https://www.nadsa.org/locator/
Dementia Adult Day Programs Finder - choose Community Service: https://www.communityresourcefinder.org/
Dementia Friendly America's Memory Cafe Directory: https://dfamerica.org/memory-cafe-directory/
The Caregiver’s Journey Podcast on Palliative Care: https://thecaregiversjourney.org/42-when-to-call-in-palliative-care-four-essential-tips-alzheimers-and-other-dementias/
Seth Rogan and his wife Lauren HFC respite grants: https://wearehfc.org/care-grants/
Home Instead grant application: https://www.homeinstead.com/home-care-services/alzheimers-dementia-care/HFCgrant/
Memory Board - HHC10 saves 10% at checkout: https://memoryboard.com/?utm_source=happyhealthycaregiver&utm_medium=referral&utm_campaign=promo_page
Care Yah-Ya: https://www.careyaya.org/ 
Papa companion care: https://www.papa.com
Zinnia TV: https://www.zinniatv.com/
Vivo Virtual Exercise: https://teamvivo.com/
Singing at Home - Bridgetown: https://www.bridgetownmt.com/singingathome#section-1704859821310
Dementia Minds support groups for people living with dementia: https://dementiaminds.org/ncdm-groups/
Cognitive stimulation therapy: http://Newdays.AI
Dementia Care Service finder - choose are at home or housing options: https://www.communityresourcefinder.org/
Alzheimer's Association emergency respite grants - call 800.272.3900:   https://www.alz.org/help-support/caregiving/care-options/respite-care
The Caregiver’s Journey Podcast 26 Emergency Plan: https://thecaregiversjourney.org/are-you-ready-for-an-emergency-get-a-plan-four-essential-tips-alzheimers-other-dementias/
The Caregiver’s Journey Podcast 33 Care Plan: https://thecaregiversjourney.org/33-how-to-create-a-care-plan-five-essential-tips-alzheimers-and-other-dementias/

Read More in This Blog

https://thecaregiversjourney.org/65-help-for-solo-caregivers-four-resource-areas/