The Caregiver's Journey

• Navigating Dementia Caregiving Roadmap: Later On Steps 18-20 / Alzheimer’s and Other Dementias

  Have you reached the point where you're now fully responsible for your loved one's care and safety? Do you find yourself guiding others or managing all aspects of their daily needs? You've entered what we call "later on"—the final stage of the caregiving journey, and while some aspects may feel more manageable, new challenges and emotions emerge that require specific attention and planning. This final phase completes our comprehensive 20-step roadmap for dementia caregiving, covering the essential steps when you've moved beyond the messy middle into full caregiving responsibility. Connect with us and share your tips: Website: https://thecaregiversjourney.org/ 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] Guide: Navigating Dementia Caregiving Roadmap https://thecaregiversjourney.org/guides/ Donate: https://give.cornerstone.cc/thecaregiversjourney Full show notes Additional Resources Mentioned Later On - You are now managing all aspects of their care 18. Plan for their End of Life Service:   You may have done this with your loved one just after their diagnosis. If not, do this without them now:26 minute TCJ podcast: 30. End of Life Service PreplanningTCJ blog: 30. End of Life Service PreplanningLeverage this End of Life Planning Worksheet.  19. Call in hospice. If you are not working with palliative care or a US Medicare GUIDE program organization (both of these are able to tell you when it’s time to call in hospice)Find a hospice organization. Get a doctor's referral. Schedule an initial evaluation. It’s almost never too early to get the initial evaluation, so don’t wait.Search ‘hospice’ + ‘your country’ - or in the US - ‘your state’. Scroll down until you get below the sponsored links where it says ‘Places’:Click on ‘More places’ to get a list with a map.  Notice rating stars and those located around your area.Schedule an initial consultation with two so you can compare.Educate yourself on when to call in hospice:26 minute TCJ podcast: 29. When To Call In HospiceTCJ blog: 29. When To Call In Hospice. 20. Continue your self-care. Learn about Anticipatory Grief.  Read this AARP article:How To Manage Mourning a Loss Before It Happens.Honor your grief, be compassionate with yourself, reach out for support:Each of us navigates the loss of our loved one in our own time and way.It’s reasonable when your caregiving journey ends you may feel any or all of:A sense of relief because your journey has ended and your loved one is no longer suffering, Guilty at the same time because you feel relieved.A loss of your own identity, from prioritizing your loved one for so long.Not sure what to do next.If you feel lost, reach out to your family, support group, faith community, friends, professionals. Most importantly - reach out! Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways The Three Stages of the Dementia Caregiving Journey 1. In the Beginning - Your loved one receives a diagnosis. 2. The Messy Middle - You begin asserting control; this is when it gets messy!3. Later On - You are managing all aspects of their care. 

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• Navigating Dementia Caregiving Roadmap: Messy Middle Steps 11-17 / Alzheimer’s and Other Dementias

  Have you moved beyond the initial steps of your caregiving journey and now find yourself needing to take more control while your loved one still believes they can do most things independently? Are you noticing that simple tasks are becoming increasingly challenging for them, yet they resist your help? You’re not alone! You’ve entered what we call the “messy middle” stage of your caregiving journey. We created for you the comprehensive, 20-step caregiving journey roadmap guide, Navigating Dementia Caregiving Roadmap Connect with us and share your tips: Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: 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 Additional Resources Mentioned Messy Middle First Steps - You recognize it’s time to assert more control  11. Focus on safety.  Listen to these podcasts or read these blogs.Home Alone - Hear about the deal breakers for living home alone:21 minute TCJ podcast: 6. Home AloneTCJ blog: 6. Home Alone.Medication - Understand strategies to safely manage medication:20 minute TCJ podcast: 20. Medication ManagementTCJ blog: 20. Medication Management.Home Safety - Find approaches to the basics of home safety:25 minute TCJ podcast: 7. Home Safety TCJ blog: 7. Home SafetyWandering - Learn ways to manage three types of wandering: outside, inside and during the night.20 minute TCJ podcast: 4. Wandering TCJ blog: 4. Wandering. 12. Continue to prioritize your self-care.  Understand how to approach the realities of self-care:23 minute TCJ podcast: 27. The Realities of Caregiver Self-CareTCJ blog: 27. The Reality of Caregiver Self-Care. 13. Educate yourself on activities of daily living (ADLs). Prepare for changes in your loved ones ability to manage their ADLs.Listen to these podcasts or read these blogs on activities of daily living:26 minute TCJ podcast: 9. Preparing for Incontinence TCJ blog: 9. Preparing for Incontinence21 minute TCJ podcast: 14. Bathing and DressingTCJ blog: 14. Bathing and Dressing21 minute TCJ podcast: 15. Personal Care e.g. brushing teeth, trimming hair TCJ blog: 15. Personal Care21 minute TCJ podcast: 16. Eating and Drinking TCJ blog: 16. Eating and Drinking. 14.Create a Care Plan - at minimum a Family Emergency Plan. 25 minute TCJ podcast: 33. How to Create a Care Plan TCJ blog: 33. Creating a Care Plan. Messy Middle - Continued Second Steps - It’s time for more support 15. Start or increase leveraging dementia/adult day programs.  Community resource finder: Select Community Services and choose Adult Day Centers for your search. 16. Start thinking about professional help. Educate yourself: Evaluate continuing care communities (even if you never plan to use one) just in case.33 minute TCJ podcast: 28. Home and Community Living Options TCJ blog: 28. Home and Community Living Options.Understand the types of paid caregivers:26 minute TCJ podcast: 32. Hiring a Paid Caregiver TCJ blog: 32. Hiring a Paid Caregiver.Find an organization to help. Search online: ‘Senior Care Advisor’ + ‘your area’.Look for options yourself. Go to the Community Resource Finder sponsored by the Alzheimer’s Association and AARP. 17. Continue your education. Take the Savvy Caregiver Advanced training (this can be taken in-person or virtually).Delusions:38 minute TCJ podcast: 23. DelusionsTCJ blog: 23. Delusions.Incontinence:26 minute TCJ podcast: 10. Incontinence Begins TCJ blog: 10. Incontinence Begins. Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

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• Navigating Dementia Caregiving Roadmap: In the Beginning Steps 7-10 / Alzheimer’s and Other Dementias

  Have you completed the first six essential steps of the comprehensive 20-step caregiving journey roadmap guide Navigating Dementia Caregiving: Your Resource Roadmap for Every Stage? Are ready to take on more? Do you find yourself wanting to learn faster and more easily than trying to figure everything out on your own? If you answered ‘Yes’, you’re in the right place for the next phase of the dementia “In the Beginning” journey. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned that building knowledge, and preparing for progression, are crucial for sustainable caregiving. We recently talked with Jenny Gay, licensed clinical social worker with Emory Integrated Memory Care, about our comprehensive 20-step caregiving journey roadmap guide: Navigating Dementia Caregiving Roadmap. In this podcast, we’re sharing steps 7–10. Connect with us and share your tips: Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: 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/44-navigating-dementia-caregiving-roadmap-in-the-beginning-steps-7-10-alzheimers-and-other-dementias/ Additional Resources Mentioned Navigating Dementia Caregiving Roadmap Guide In the Beginning - continued Next Steps - You are ready for more  7. Continue your education: Take the Savvy Caregiver course in person or online.Read this magazine:  Mayo Clinic Living with dementia: A guide to caregiving and support. Find and take a virtual dementia tour near you. In the United States, in your search engine, type ‘virtual dementia tour’ + ’your state’. For example: ‘virtual dementia tour Florida’ or, outside the US, replace your state with your country. 8. Start planning for the next stage of care. Build your personal support network:21 minute TCJ podcast: 40. Create Your Personal Support NetworkTCJ blog: 40. Create Your Personal Support Network.Find and try a memory cafe (Caregivers and care receivers go together).Investigate dementia day centers (also known as adult day centers that include dementia care programs) for your care receiver. Community resource finder: Select Community Services and choose Adult Day Centers for your search.Ask your loved one’s medical team for a home safety assessment.The goal is to have someone evaluate your home for safety and dementia care needs. This is usually available through palliative care, GUIDE program, or an order from a physician.You can get a free assessment from social services with this order, or you can pay for an independent assessment from a private organization. 9. Investigate your local government community support:  In the US, contact your local Area Agency on Aging. Search for yours at Eldercare.acl.gov or call 1-800-677-1116.Call and set up a screening for eligibility:They will point you to any free government services where you are eligible. Be sure to find out if you are eligible to get paid to be a caregiver.  10. Evaluate driving risks.  Some US states have specific requirements for individuals with dementia to report their diagnosis and potentially undergo driving evaluations. Listen to this podcast or read this blog:21 minute TCJ podcast: 5. Taking Away the KeysTCJ blog: 5. Taking Away the Keys.  Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways The Three Stages of the Dementia Caregiving Journey 1. In the Beginning - Your loved one receives a diagnosis.  2. The Messy Middle - You begin asserting control; this is when it gets messy! 3. Later On - You are managing all aspects of their care. 

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• Navigating Dementia Caregiving Roadmap: In the Beginning Steps 1-6 / Alzheimer’s and Other Dementias

  Have you ever felt overwhelmed because you don’t know what information you need, can’t find reliable sources, or feel frustrated by too much conflicting advice? We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned having a step-by-step roadmap is crucial for navigating the beginning of your caregiving journey. We recently talked with Jenny Gay, licensed clinical social worker with Emory Integrated Memory Care, about the comprehensive 20-step caregiving journey roadmap guide Navigating Dementia Caregiving: Your Resource Roadmap for Every Stage. This podcast is bringing the first six essential steps to take immediately after diagnosis. Connect with us and share your tips: Donate: https://give.cornerstone.cc/thecaregiversjourney Instagram: https://www.instagram.com/thecaregiversjourney/ Facebook: https://www.facebook.com/thecaregiversjourneys/ Full Show Notes Here In the Beginning - First Steps - Right after the diagnosis 1. Choose a palliative care organization. This will likely also serve as your hospice organization later in your journey. In your search engine, type ‘Palliative Care’ + ‘the name of your country’ or, in the US ‘the name of your state’. Schedule an initial consultation with more than one so you can compare. Educate yourself on what palliative care is: 27 minute The Caregiver’s Journey (TCJ) podcast: 42. When To Call In Palliative Care 2. Create an Advance Care Plan. Get your legal documents in order and do some initial end of life preplanning with your loved ones input: Contact your attorney or an elder law attorney NAELA.org. Listen to this podcast or read this blog on elder law attorneys: 32 minute TCJ podcast: 31. Elder Law Attorneys Alzheimer’s Association legal documents overview: Leverage this End of Life Planning Worksheet. 3. Understand the financial situation. Work with a financial advisor - especially those who focus on seniors. Elder law attorneys can also advise in this area. Alzheimer’s Association resources overview of financial planning 4. Find support groups. First and foremost for you. If possible, find a support group you can attend in person: The Alzheimer's Association support group finder has support groups for a variety of types of dementia. If your loved one is interested a support group: Dementia minds has online groups for people living with dementia. Many local senior centers have support groups for your loved one to increase socialization: In the US, go to your ‘countyname’.gov website and search for a senior center. The Alzheimer’s Association 24/7 helpline in the US: 1.800.272.3900. 5. Educate yourself on early caregiving journey topics. Listen to these two podcasts or read these two blogs. Memory Loss: 29 minute TCJ podcast: 2. Memory Loss Communication: 20 minute TCJ podcast: 3. Communication – in the Beginning 6. Investigate the US Medicare GUIDE program. Listen to this podcast or read this blog: 23 minute TCJ podcast: 39. Is the Medicare GUIDE program for you Understand if your loved one may be eligible: https://www.cms.gov/priorities/innovation/guide/faqs#ben-cgs. If you think you might be eligible, find a US Medicare GUIDE program provider near you. There may be several who cover your zip code so explore options. Go here to find a GUIDE program: Enter your state. Under models select ‘Guiding an Improved Dementia Experience (GUIDE) Model’. Click ‘Display selected’. You can use the plus and minus signs in the upper right corner to zoom in closer to your area. When you find the location you want, click on the blue dot and detailed contact information will show. The Three Stages of the Dementia Caregiving Journey 1. In the Beginning - Your loved one receives a diagnosis. 2. The Messy Middle - You begin asserting control; this is when it gets messy! 3. Later On - You are managing all aspects of their care. Full blog here

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• When to Call in Palliative Care: Four Essential Tips / Alzheimer’s and Other Dementias

  Are you feeling overwhelmed by the complexity of dementia care? Do you find yourself wishing you had more support navigating medical decisions and planning for the future? You’re not alone - and there’s specialized help available that many caregivers don’t fully understand. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we both wish we had understood what palliative care is and how to leverage it earlier in our journeys. Unfortunately, when palliative care was first explained to us, it was explained incorrectly, and neither of us took advantage of all the great things palliative care has to offer. We recently spoke with Dawn Kolderman, a registered nurse and Senior Clinical Director of Palliative Care Services at Avow, who has more than 30 years of nursing experience with the last 20 focused on palliative and hospice care. Dawn shared invaluable insights about palliative care that we wish we had known sooner. Connect with us and share your tips: Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: 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 Additional Resources Mentioned Avow Palliative Care LinkSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Understand What Palliative Care Actually Is The first step is clearing up common misconceptions about palliative care.  Palliative care is a holistic approach to a life-limiting disease. This includes dementia — which is indeed a life-limiting disease.  The key difference between palliative care and hospice care: Palliative care patients are at the beginning of their journey and are still seeking aggressive, curative treatment while seeing all their providers and specialistsHospice care patients are generally at the end of their journey, no longer seeking aggressive treatment, and focusing on comfort care. Palliative care is an additional supportive layer of care that works collaboratively with all your existing medical providers. Most importantly, palliative care focuses heavily on the caregiver. Tip 2: Call Palliative Care In — Here’s How Many caregivers don’t realize how accessible palliative care is or when to call it in. The answer is simple: the earlier, the better. Tip 3: Understand the Goals of Palliative Care Palliative care has specific, comprehensive goals that address both immediate and long-term needs. Primary goals include: Relieving physical symptoms first Supporting the caregiver and family Education and collaboration Advanced care planning (ACP). This crucial component involves sitting down with the patient, caregiver, and family to discuss important decisions while your loved one can still participate in these conversations. Tip 4: What Else You Need to Know About Palliative Care There are several important aspects of palliative care that many people don’t realize. Your loved one won’t look sick. The goal is to help them live their life fully. Early intervention builds stronger relationships. The nurse navigator’s role is specifically to connect you with community resources you might not know about.  Read More in This Blog here

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