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The Caregiver's Journey

Sue Ryan and Nancy Treaster
The Caregiver's Journey
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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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  • Studying Experienced Caregivers: Four Essential Tips / Alzheimer’s and Other Dementias
    "When it comes to caregiving, the assumption about being able to take what we've learned and just naturally grow is not always going to be true." How do you think you would feel if you were caregiving for a second or third person living with dementia? Would you feel more prepared because of your previous experience? If you answered "yes," you might be surprised by what research is revealing about experienced caregivers. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, both of us have been caregivers more than once, and we recently learned about enlightening research from Dr. Emily Mroz, a researcher at Emory University's School of Nursing who coined the phrase "experienced caregiver." Her research is shedding light on a common phenomenon that affects millions of families: providing dementia care for multiple loved ones throughout adulthood. Dr. Mroz is a tenure-track assistant professor and social behavioral scientist who studies how people think, feel, and act within their social and personal situations. With training in developmental psychology, gerontology, geriatrics, and public health, she uses her multidisciplinary perspective to develop resources and interventions that support people living with serious illness, family caregivers, and those who are bereaved. Through her research and interviews with caregivers, Dr. Mroz has identified crucial insights about experienced caregivers that challenge common assumptions and offer practical guidance for those stepping into the caregiving role again. Full Show Notes https://thecaregiversjourney.org/37-studying-experienced-caregivers-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Dr. Emily Mroz, assistant professor and social-behavioral scientist, discusses her research on improving how patients and caregivers navigate serious illnesses such as dementia, end-of-life care and bereavement. Link to study flyer here To join this study, visit survey.qualtrics.emory.edu/jfe/form/SV_cYfshxWcThSSV5s.Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Avoid Assumptions About Who Is Prepared to Be a Dementia Caregiver Tip 2: Assess How Prepared You Really Feel Tip 3: Don't Hesitate to Get Involved in Skills Training and Support Groups Tip 4: Share Your Stories with Grace, Not Judgment The Importance of Research for Experienced Caregivers Dr. Mroz's study is part of a growing recognition that experienced caregivers represent a significant population with unique needs and strengths. Her virtual research study involves participants completing surveys about their caregiving experiences and sharing their stories to help researchers understand the differences between new and experienced caregivers. Study details: Focuses on people currently in active caregiving roles, including those early in their journey with a second or third care recipientParticipants receive a $50 gift card honorariumSessions are conducted virtually and take about one to two hoursCan participate alongside other dementia caregiver research studiesResearch is crucial for developing resources specifically tailored to experienced caregivers Read More in This Blog here
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About The Caregiver's Journey

The Caregiver’s Journey podcast is an innovative and refreshing way to learn how to tackle day-to-day Alzheimer's and dementia family caregiving challenges with strength, patience, and peace of mind. Using practical tips and candid conversations, Sue Ryan and Nancy Treaster help you navigate caregiving’s ups and downs, so you move from feeling frustrated, overwhelmed, and sometimes frightened - to confident, balanced, and supported.
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