The Caregiver's Journey

• 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 Additional Resources Mentioned 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.  Read More in This Blog here

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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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• Aligning Work and Caregiving Responsibilities: Four Essential Tips / Alzheimer’s and Other Dementias

  Have you ever thought, "I wish I knew how to have a constructive conversation with my manager about how to align my work responsibilities and my caregiving responsibilities?" Today we're sharing strategies to help working family caregivers thrive at both work and at home. We're sharing four tips. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how caregivers often feel torn between their responsibilities at home and their professional responsibilities, which they're trying desperately to fulfill, often without support. 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/41-aligning-work-and-caregiving-responsibilities-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Self-Identify and Strategically Disclose Assess your company culture firstExamples of supportive company policiesDisclose early in the journeyPlan your conversationFrame it collaborativelyDocument everything Tip 2: Build Flexibility Explore flexibility options in your organizationPropose pilot arrangementsConsider team involvementCreate backup plansLeverage technologyConsider career flexibility Tip 3: Leverage Your Resources Connect with colleagues who are also caregiversExplore Employee Assistance Programs (EAPs)Look for community resourcesTake things off your plate Tip 4: Plan for the Unplanned Understand your benefits and protectionsCreate a caregiving budgetExplore financial resourcesBuild an emergency fundPrepare for career transitions Read More in This Blog https://sueryansolutions.medium.com/40-building-your-personal-caregiving-support-network-9f9639e9ae87

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• Create Your Personal Caregiving Support Network: Five Essential Tips / Alzheimer’s and Other Dementias

  “In the marathon that is caregiving, the difference between exhaustion and endurance isn’t willpower, it’s the strength of the support network we build around us.” Sue Ryan Are you feeling overwhelmed by the responsibilities of caregiving? Do you find yourself thinking, “I don’t have time to get everything done.” or “I should be able to do this myself.”? You’re not alone, and there’s a better way forward. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned building a strong personal support network is crucial for sustainable caregiving. Studies show that dementia family caregivers face overwhelming emotional challenges. Connect with us and share your tips: Website: https://www.thecaregiversjourney.comDonate: 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/40-create-your-personal-support-network-five-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned 27. The Realities of Caregiver Self-Care https://thecaregiversjourney.com/the-realities-of-caregiver-self-care-four-essential-tips-alzheimers-and-other-dementias/32. Navigating the Caregiver Hiring Process https://thecaregiversjourney.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Assess Your Needs and Make a List Ask yourself: Do I have time to get everything done that needs to be done?Am I physically strong enough to handle all caregiving tasks?Do I find myself losing patience or empathy?Is my loved one struggling with activities of daily living that I can't manage alone? If you answered yes to any of these questions, it's time to ask for help.  Tip 2: Create a List of Who Can Help and What They Can Do Think about all the people who have offered to help or who might be willing to help. Map your list of potential helpers to your list of needs. If multiple people can help with a particular task, list them all—it's better not to rely on just one person. Tip 3: How to Effectively Ask for Help Recognize that some people want to help your care receiver, while others want to help you. Be specific and direct about what you need and why you need it.Remember that the people on your list have likely already offered to help or have shown willingness to support you.Adapt your approach based on the person you're asking.  Tip 4: When People Offer to Help, Say "Yes" Avoid these common traps: "It would be easier just to do it myself.""No one can care for my loved one like I can.""I should be able to do this myself.""I feel guilty—they have their own busy lives." Tip 5: Maintain Your Support Network and Adjust as Things Change Encouraging open communication with your support team membersBeing proactive about finding new support team members when neededChecking in regularly with your helpers to keep them informed and engagedWatching for signs of burnout in your helpers—they may experience caregiver fatigue tooAddressing inflection points in your loved one's care needs Read More in This Blog https://sueryansolutions.medium.com/36-building-your-personal-caregiving-support-network-9f9639e9ae87

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