The Caregiver's Journey

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.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we know how much rides on every doctor’s visit and how easy it is to walk out feeling unheard. We’re sharing insights about how to rethink your role at medical appointments from Dr. Paul Nussbaum, a clinical neuropsychologist licensed in Florida and Pennsylvania and founder of the Brain Health Center. Dr. Nussbaum has spent decades caring for people living with dementia and their families. He has also been a family caregiver himself, so he understands both sides of the table.

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: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.org/72-getting-the-most-out-of-doctors-visits-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

• Paul D. Nussbaum, Ph.D, ABPP www.MDRyourbrainhealthmatters.org 
• 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

Tip 1: Check your state of mind

Tip 2: Get prepared

Tip 3: Communicate at the appointment

Tip 4: Follow-up

Read More in This Blog

https://thecaregiversjourney.org/72-getting-the-most-out-of-doctors-visits-four-essential-tips-alzheimers-and-other-dementias-2/

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: [email protected], [email protected]

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: [email protected], [email protected]

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: [email protected], [email protected]

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: [email protected], [email protected]

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: [email protected], [email protected]

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/

“When families are prepared — physically, emotionally, logistically — they are able to handle these moments a lot differently. There’s less panic, less guilt, and a little bit more empowerment.” — Dr. Taylor Rush

One minute, everything’s fine. The next minute, your loved one is on the floor. If fall prevention isn’t on your radar yet — or if you’re waiting until after the first fall happens — you’re not alone. But there’s a lot you can do right now to be better prepared.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we know firsthand how frightening falls can be — and how much the fear of a fall can affect both the person you’re caring for and yourself. We’re sharing five practical tips drawn from the expertise of Dr. Taylor Rush, clinical health psychologist and director of behavioral sciences and interdisciplinary programs at the Cleveland Clinic Center for Neurological Restoration. Taylor specializes in chronic neurological conditions including Parkinson’s and movement disorders, with a deep focus on supporting care partners through the challenges they face every day.

Let’s walk through five essential tips for preventing falls, handling them when they happen, and managing the emotional aftermath — for both you and 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: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.org/64-falling-spot-risks-stay-calm-heal-afterwards-five-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

• Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney
• Taylor Rush: https://www.linkedin.com/in/taylor-rush-phd-488149352/
• Cleveland Clinic for Neurological Restoration: https://my.clevelandclinic.org/departments/neurological/depts/neurological-restoration
• 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 5 tips:

1. Know your loved one's fall risk factors
2. Reduce risk with practical prevention strategies
3. Start the conversation early — and have a plan
4. Stay calm and assess — don't panic in the moment
5. Manage the emotional aftermath of a fall

Read More in This Blog

https://thecaregiversjourney.org/64-falling-spot-risks-stay-calm-heal-afterwards-five-essential-tips/

"Once caregivers get it, they're like, 'My gosh.' You just have to train yourself to walk around the brick wall to the moment, the now, and the imagination." — Anne Basting

Do you struggle to create meaningful connections with your loved one living with dementia? Almost all of us do. You're not alone — and there are concrete tools you can learn right now to change that.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how isolating it can feel when conversations stall and connection seems just out of reach. We're sharing five tips for creating intentionally meaningful moments with your loved one, from Anne Basting, founder of the award-winning nonprofit TimeSlips, who has spent 30 years developing and researching creative storytelling approaches for people living with dementia.

Let's explore five essential tips for creating meaningful connections — from believing in your own creativity to turning shared moments into lasting gifts.

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: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.org/63-meaningful-conversation-five-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

• Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney
• TimeSlips: https://www.timeslips.org/
• Dementia Friendly America: https://dfamerica.org/timeslips/
• 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 5 tips:

1. Believe in your own creativity
2. Forget memory
3. Open with a beautiful question
4. Use beautiful listening
5. Create gifts from the experience

Read More in This Blog

https://thecaregiversjourney.org/63-meaningful-conversation-five-essential-tips-alzheimers-and-other-dementias-2/