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The Caregiver's Journey

Sue Ryan and Nancy Treaster
The Caregiver's Journey
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  • How To Create a Care Plan: Five Essential Tips / Alzheimer’s and Other Dementias
    Are you prepared for others to take care of your loved one? Do you have a care plan in place? Having a comprehensive care plan is one of the most important tools a caregiver can create — not just for emergencies, but for everyday peace of mind. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned the importance of creating a care plan for our loved one. We spoke with Amanda Lukoff, co-founder and CEO of Eleplan, about what a care plan is and how to create one that works for your unique situation. Amanda's journey to creating Eleplan was deeply personal. Her brother Liam, who has autism, is her "North Star" and the inspiration behind her career path, including going to law school for special education law. Through observing her parents' caregiving journey with Liam, Amanda recognized the need to capture all the knowledge that lived in her parents' heads so that others could provide care that truly honored who Liam is as a person. 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] Additional Resources Mentioned Episode 32: Navigating The Caregiver Hiring Process https://thecaregiversjourney.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/Eleplan Website: https://www.eleplan.com/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Full Show Notes https://thecaregiversjourney.com/33-how-to-create-a-care-plan-five-essential-tips-alzheimers-and-other-dementias Takeaways Tip 1: Start with the Basics The first step in creating a care plan is to document the essential information that would allow someone to provide short-term care (even for just 30 minutes) while you step out. This includes: Emergency contactsMedications and dosagesHigh-level meal preferencesAllergiesRelevant medical conditions Tip 2: Outline Preferences and Daily Routines Beyond the basics, a good care plan should capture what makes your loved one unique—their preferences, personality traits, and daily routines. Your care plan should include: Likes and dislikesDaily schedule and routinesBedtime and morning ritualsBehavioral patternsEmotional triggers (both positive and negative) Tip 3: Document What to Do in an Emergency Crisis situations demand clear instructions. Your care plan should outline: What constitutes an emergency for your loved oneWhen to call 911 vs. other resourcesWho to contact and in what orderSpecial instructions for EMTs or ER staffLocation of important medical documents Tip 4: Collect Key Contacts and Documents Gathering important documents in one accessible location is critical for seamless care. This includes: Insurance cardsHealthcare directivesPower of Attorney documentsGuardianship formsMedical history and medication lists Tip 5: Keep Everything Accessible and Current A care plan is only effective if it's up-to-date and easily accessible. Amanda frames this with an important question: "Do I have a system that is as dynamic as the needs of my loved one and the ever-changing piles of documents and information?" Whether you're using a physical binder, shared digital documents, or a specialized platform like Eleplan, the key is having a system that makes updates easy and ensures the information is available whenever and wherever it's needed. Read More in This Blog
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  • Navigating the Caregiver Hiring Process: Five Essential Tips / Alzheimer’s and Other Dementias
    When the time comes to bring professional caregiving support into your loved one’s life, the process can feel overwhelming. Whether you’re hiring a caregiver for home care or to complement care in a community setting, understanding how to find, evaluate, and select the right person is crucial for both your peace of mind and your loved one’s well being. We are Nancy Treaster and Sue Ryan, we’ve developed five essential tips for hiring a paid caregiver, based on real experiences and practical advice from caregiving experts. These insights will help you navigate this important transition with confidence and clarity. 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.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Episode 5: Home Alone https://thecaregiversjourney.com/leaving-your-care-receiver-alone-six-essential-tips-alzheimers-and-other-dementias/Episode 28: Home and Community Living Options https://thecaregiversjourney.com/time-for-a-change-home-and-community-living-options-five-essential-tips-alzheimers-and-other-dementias/Episode 30: Elder Law Attorneys https://thecaregiversjourney.com/they-know-what-we-dont-elder-law-attorneys-four-essential-tips-alzheimers-and-other-dementias/Episode 33. How To Create a Care Plan: Five Essential Tips / Alzheimer’s and Other Dementias https://thecaregiversjourney.com/33-how-to-create-a-care-plan-five-essential-tips-alzheimers-and-other-dementiasSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Assess Your Loved One’s Needs Before you begin searching for a caregiver, it’s important to thoroughly understand what kind of support your loved one requires. This assessment will guide all your subsequent decisions about the type of caregiver, frequency of care, and specific qualifications needed. Consider these key areas when assessing needs: Activities of Daily Living (ADLs)Medical NeedsHousehold Management TasksSafety ConcernsTransportation and MobilityCompanionship Needs Tip 2: Determine the Type of Caregiver and Frequency Needed There are three main categories of paid caregivers, each with different training levels and capabilities: Companion CareCertified Nursing Assistant (CNA)Skilled Nursing Tip 3: Understand Your Financial Resources Review Your Financial Resources Savings and investment accountsLong-term care insurance policiesRegular income sourcesFamily financial contributions. Explore Available Benefits MedicareMedicaidVeterans Benefits Consider Family Contributions Tip 4: Decide Between Agency or Private Hire When you work with a caregiving agency: They Handle Administrative TasksThey Provide Backup CoverageThey Offer Training and SupervisionThey Assume Liability Private Hire Benefits It’s Usually Less ExpensiveYou Have Complete ControlThere’s Often More FlexibilityYou May Find Through Word-of-Mouth Private Hire Challenges You’re the EmployerNo Backup CoverageLimited Screening Resources Tip 5: Evaluate potential caregivers thoroughly Key Questions for Interviews Scheduling and AvailabilityQualifications and ExperienceApproach to CareCommunication Style Background Checks and References Set Clear Expectations Especially for private hires, establish from the beginning that the arrangement is on a trial basis. Include Your Loved One When Appropriate Next Steps: Care Plans and Integration Develop a written plan Develop an Integration Strategy Read More in This Blog here 
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  • They Know What We Don’t, Elder Law Attorneys: Four Essential Tips / Alzheimer’s and Other Dementias
    We don't know what we don't know. But elder law attorneys do, and their expertise can be transformational for families facing aging-related challenges. Whether you're dealing with a recent diagnosis, planning for potential long-term care needs, or simply trying to prepare for the future, understanding how and when to work with an elder law attorney can make all the difference in your journey. In this episode, we'll explore four essential tips for working with elder law attorneys, based on insights from Beth Prather, a board-certified elder law attorney with 32 years of experience, and Courtney Lovejoy, an elder law attorney with a Master of Laws in elder law. Their expertise in Medicaid planning, VA benefits, estate planning, probate, trust administration, and guardianship offers valuable perspective for anyone navigating the complex legal landscape of aging and caregiving. 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.com/they-know-what-we-dont-elder-law-attorneys-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned www.NAELA.org The National Academy of Elder Law Attorneys website has a searchable directory. "They have a really good search function where you can type in your zip code and find elder law attorneys within a certain radius," Courtney notes.State-specific organizations: For example, Florida has the Academy of Florida Elder Law Attorneys (www.AFELA.org).Beth Prather: https://www.gskattorneys.com/attorneys/beth-a-prather/Courtney Lovejoy: https://www.gskattorneys.com/attorneys/courtney-van-emmerik-lovejoy/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: How to Find an Attorney Who Specializes in Elder Law Finding the right elder law attorney requires more than just a quick Google search. Here's how to identify professionals with genuine expertise in this specialized field: Look for Specialized Credentials Professional credentials can be helpful indicators of specialized knowledge in elder law: Board Certification: IMaster of Laws (LLM) in Elder Law: Ask the Right Questions How many Medicaid applications did they file last year?What percentage of their practice focuses on elder law?Do they handle guardianships, Medicaid planning, or VA benefits cases regularly? Use Reliable Resources to Find Specialists NAELA.org:State-specific organizations: For example, Florida has the Academy of Florida Elder Law Attorneys (AFELA.org).Personal referrals: Tip 2: Prioritize These Legal Documents and Planning Tools Once you've found an elder law attorney, certain planning tools should take priority: Comprehensive Durable Power of AttorneyConsider Long-Term Care InsuranceLimit or Avoid GiftingAvoid DIY Planning Common DIY mistakes include: Adding children to bank accounts or property titlesGiving away assets based on outdated or incorrect adviceTrying to "hide" assets from Medicaid Tip 3: Understand Medicaid and VA Benefits Options A significant part of elder law involves helping clients navigate government benefits for long-term care: Tip 4: Use This Time to Address Other Important Legal Matters Review Beneficiary DesignationsCreate an Asset InventoryConsider Account ConsolidationAddress Healthcare Decision DocumentsBe Cautious About Adding Others to Accounts or DeedsDiscuss End-of-Life Preferences
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  • Finding Peace in Preparation: End of Life Service Preplanning: Eight Essential Tips / Alzheimer’s and Other Dementias
    When you’re grieving, the last thing you need to be doing is planning a service. Pre-planning allows you to make only two decisions when death occurs: what day and what time the service will be held. Everything else can be arranged in advance, giving you the space to honor your loved one while processing your grief. We are Sue Ryan and Nancy Treaster, and we recently spoke with Greg Cannon, who has more than 45 years of experience in the funeral profession, including as a funeral director. Greg shared his expertise on planning ahead for a loved one’s service, offering eight essential tips that can make all the difference during a difficult time. Rate, Subscribe, Share the Podcast and Share Your Tips on Social Media! Please click here to review, follow, subscribe to and share our podcast.   Connect with us and share your tips: Website: https://www.thecaregiversjourney.comInstagram: 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.com/finding-peace-in-preparation-end-of-life-service-preplanning-eight-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned End of Life Service Worksheet here Takeaways Tip 1: Choose a Funeral Home Select a funeral home that will meet your needs. This choice may be based on location, previous experience with them, or their reputation.  Tip 2: Decide on Burial or Cremation This fundamental decision shapes many subsequent choices.  If choosing burial, consider: Cemetery locationIf the person is married, reserving an adjoining space for the spouseWhether traditional burial or green burial options are preferred. For cremation, consider: Whether the cremation will happen before or after the service.What will be done with the cremated remains afterward. In both cases, you’ll need to decide what clothing the person will wear. Greg advises bringing a complete set of clothing, including undergarments and outerwear. Shoes are optional and often difficult to put on, but can be included if they’re meaningful. Tip 3: Decide on the Type of Service Funeral services have evolved beyond the traditional.  Traditional Service (for either burial or cremation) Memorial Service Green Burial Direct Cremation or Direct Burial Tip 4: Choose a Location The location for the service could be: A funeral homeA place of worshipA location meaningful to the deceased Tip 5: Prepare the Obituary Rather than writing the complete obituary under time pressure, prepare by: Compiling all necessary information ahead of timeCreating a comprehensive list of family members to includeSelecting a photo or photos to accompany the obituary. Tip 6: Create a Notification Tree Decide ahead of time: Who needs to be notified of the deathWho will notify whomCreate a “notification tree” so you’re not responsible for contacting everyone. Tip 7: Plan the Service Consider these elements and include your care receiver as much as possible: Officiant: Choose the clergy or person who will lead the serviceEulogies: Decide who will deliver them and provide guidanceMusic: Select meaningful songs or hymnsReadings: Choose scripture, poetry, or other readingsPersonal touches: Include memorabilia, photos, or items that represent the person’s life. Consider alternatives to traditional floral arrangements: Family quiltsMeaningful objects (like golf clubs for an avid golfer)Photos. Tip 8: Plan the Gatherings Consider various types of gatherings: Private family dinner before the serviceReception after the service for all attendeesInformal gathering at home with close family and friends.
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  • When To Call In Hospice: Four Essential Tips / Alzheimer’s and Other Dementias
    As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that there are many misconceptions about hospice care. Today, we're joined by hospice nurses Nancy Heyerman and Brenda Kizzire to help clarify what hospice really is and when to consider it. Through their extensive experience, they've developed four essential tips to help you navigate this important transition in your caregiving journey. Connect with us and share your tips: Website: https://www.thecaregiversjourney.comInstagram: 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.com/when-to-call-in-hospice-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned The Hospice Care Plan website here Frailty scale here The Hospice Care Plan booklet here The Hospice Care Plan YouTube channel here YouTube video - End of life for a person with dementia here Takeaways 1. Access Your Care Receiver Using the Frailty Scale One of the most important tools in determining when hospice might be appropriate is the frailty scale. This helps track changes that might indicate a need for hospice care. What to Monitor: - Weight loss patterns - Ability to feed themselves - Changes in mobility (e.g., walking distance decreasing) - Transition from walking to wheelchair - Changes in activities of daily living - Increased anxiety or behavioral changes - Decreased verbal communication - Mental status changes 2. Start Documenting This tip might seem obvious, but proper documentation can make a significant difference in getting hospice care approved. How to Document: - Keep a calendar with regular weight measurements - Note changes in mobility and daily activities - Use your phone to track behavioral changes - Record any falls or incidents - Track medication changes and effectiveness - Document observations from other family members and caregivers Important Note: Many primary care providers may not be familiar with the latest hospice criteria. Your documentation helps build a case for hospice evaluation and provides concrete evidence of decline. 3. Research Hospice Organizations  Don't wait until you're in crisis to start researching hospice organizations. Start your research early and be prepared. What to Research: - Available hospice organizations in your area - Their team structure and approach to care - Response time for evaluations and care - Experiences of other families - Specific services offered - Their experience with dementia patients Additional Tips: - Ask for recommendations from other caregivers - Read reviews and testimonials - Consider visiting their facilities if applicable - Ask about their approach to dementia care - Understand their after-hours support system 4. Request a Hospice Evaluation Don't be afraid to ask for a hospice evaluation, even if you're not sure your loved one qualifies. Steps to Get an Evaluation: 1. Ask your primary care provider for a hospice evaluation 2. If met with resistance, emphasize your goals of care 3. Frame it as establishing a baseline if needed 4. Remember that two physicians must agree - your primary provider and the hospice doctor 5. Be prepared to be a "squeaky wheel" if necessary The Hospice Care Plan: A Valuable Resource Nancy and Brenda have created "The Hospice Care Plan: A Path to Comfort," a comprehensive guide that helps families navigate hospice care. This resource includes: - Detailed symptom management guidelines - QR codes linking to instructional videos - Space for individualized care plans - Information about the hospice team - Practical tips for daily care 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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