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.com
• 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.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

As caregivers for our loved ones with Alzheimer's and other types of dementia, we often face the challenging question: "Is it time to change my care receiver's living situation?" We are Nancy Treaster and Sue Ryan, and through our experiences, we've developed five essential tips to help you navigate this complex decision-making process.

Connect with us and share your tips:

• Website: https://www.thecaregiversjourney.com
• 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.com/time-for-a-change-home-and-community-living-options-five-essential-tips-alzheimers-and-other-dementias/

Takeaways

1. Understand Your Financial Resources

This foundational step requires a thorough assessment of both current and future financial resources.

Professional Resources to Consult:

- Financial advisors (especially those specializing in senior care)

- Elder care attorneys

- Government program specialists

Income Sources to Consider:

- Care receiver's savings

- Pensions

- Long-term care insurance

- Public health insurance (Medicaid in the US)

- Social Security disability benefits

- Family contributions

Expenses to Evaluate:

- Home modifications

- Safety adjustments

- In-home caregiving costs

- Day program fees

- Potential lost income if reducing work hours

- Care community costs

2. Research Care Options

There are three main categories of care options to evaluate:

Non-Residential Options:

- Respite programs

- Memory cafes

- Day programs

In-Home Options:

- Professional caregiving services

- Government programs (VA benefits, Medicare services)

- Family caregiver arrangements

Care Communities:

- Memory care specific facilities

- Communities with memory care units

- Different care models and staffing levels

- Waiting list considerations

3. Assess Home Safety

This evaluation should include multiple perspectives:

Medical Assessment:

- Get an updated medical evaluation

- Discuss current and future safety risks

- Request occupational therapy assessment

Key Safety Considerations:

- Wandering risk

- Cabinet and door safety

- Mobility challenges

- Fall prevention

- Depth perception issues

- Stairs and accessibility

- Emergency services access

4. Evaluate Medical Needs

Current and Future Medical Considerations:

- Impact of multiple diagnoses

- Care complexity

- Required medical procedures

- Medication management

- Physical care requirements

5. Prioritize Wellbeing for Both Care Receiver and Caregiver

This final tip focuses on quality of life considerations for everyone involved.

Socialization Needs:

- Care receiver's social preferences

- Community engagement opportunities

- Caregiver isolation prevention

- Balance of stimulation and comfort

Safety and Emotional Considerations:

- Physical safety for both parties

- Emotional wellbeing

- Caregiver burnout prevention

- Managing aggressive behaviors

- Personal boundaries

Making the Final Decision:

- Consider all evaluation points

- Involve family members

- Maintain awareness of available options

- Stay connected with potential care communities

- Be prepared to act when needed

When you’re caring for a family member with Alzheimer’s or other type of dementia, you’ve probably heard countless times: “Don’t forget to take care of yourself.” While well-intentioned, this advice can feel overwhelming when you’re already juggling multiple responsibilities!

Through our conversation with Elizabeth Miller, we’ve learned that effective self-care is about more than just general advice — it’s about finding practical, sustainable ways to maintain your own wellbeing while caring for others.

Connect with us and share your tips:

• Website: https://www.thecaregiversjourney.com
• 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.com/the-realities-of-caregiver-self-care-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Happy Healthy Caregiver website here 

20 for 2025 Funsheet here

Self-Care at Sea cruise here

Happy Healthy Caregiver podcast here

Just for You daily journal here

Takeaways

Tip 1: Give Yourself Permission

One of the biggest barriers to self-care is the guilt that comes with taking time for yourself. Many caregivers feel it's selfish to focus on their own needs when their care recipient is struggling.

Tip 2: Think Broadly About Self-Care

Self-care encompasses much more than just physical health. Elizabeth identifies eight key categories:

- Practical self-care (like organizing your desk)

- Emotional self-care (therapy, journaling)

- Social self-care (connecting with others)

- Spiritual self-care (following your spiritual path)

- Intellectual self-care (learning new things)

- Financial self-care (budgeting, planning)

- Professional self-care (career development)

- Physical self-care (exercise, nutrition)

Tip 3: Prioritize and Schedule Self-Care

The best self-care strategy is simply putting it on your calendar. Elizabeth recommends creating a "20 for 25" list—twenty things you want to do this year that bring you joy, energy, or peace of mind. These can range from small activities like learning a new game to bigger plans like taking a vacation.

Tip 4: Give Yourself Credit

Instead of focusing solely on to-do lists, create a "ta-da" list celebrating what you're already doing right. Remember that self-care includes basic activities you're already doing:

- Getting sleep

- Preparing meals

- Basic hygiene

- Managing finances

- Taking breaks

Read More in This Blog here

When you’re caring for a family member with Alzheimer’s or another type of dementia, worries can keep you up at night — but they don’t help you. Through our conversation with Denise Brown, we’ve learned having a solid emergency plan helps calm your worries, reduce your fears, and provide you with peace of mind.

Full Show Notes

https://thecaregiversjourney.com/are-you-ready-for-an-emergency-get-a-plan-four-essential-tips-alzheimers-other-dementias/

Additional Resources Mentioned

Slides used in episode here

Caring Our Way community here

Family Emergency Plan space on Caring Our Way here

Schedule of free planning sessions with consultant here

Takeaways

Tip 1: Name Your Worry

The first step in creating an emergency plan is identifying specific concerns that keep you up at night. Denise's Family Emergency Plan includes eight categories of common caregiver worries:

- Delays

- Health emergencies

- Hospitalizations

- Behavioral challenges

- Transportation issues

- Medication management

- Care coordination

- Communication needs

Tip 2: Develop Your Plan

Once you've identified your concerns, it's time to create actionable plans. Remember that plans can take many forms:

- Written instructions

- Maps or diagrams

- Medication lists

- Contact information

- Behavior management strategies

- Transportation arrangements

Tip 3: Communicate Your Plan

Effective communication ensures everyone involved understands their role. Consider multiple methods of sharing information:

- Written letters or emails

- Shared online documents

- In-person meetings

- Physical copies in accessible locations

- Regular updates and reminders

Tip 4: Update Your Plan Regularly

Emergency plans should evolve as circumstances change. Watch for these common triggers that signal the need for updates:

- Changes in your care recipient's condition

- New diagnoses or medications

- Shifts in your own availability

- Family member changes

- Service provider updates

- Transitions to palliative or hospice care

About Our Guest Expert

Denise Brown founded the Caring Our Way community to support family caregivers. The community offers free resources, including:

- Monthly planning sessions

- Family Care Manager course

- Downloadable planning templates

- Online support spaces

- Access to certified caregiving consultants

You can find these resources at caringourway.com.

Read More in This Blog here

When a parent is diagnosed with Alzheimer’s or another type of dementia and the other parent begins their caregiving journey, the dynamic between the caregiving parent and child shifts dramatically. Through our experiences and conversations with families navigating this transition, we've developed six essential tips to help you support your parent as they take on the role of primary caregiver.

Connect with us and share your tips:

• Website: https://www.thecaregiversjourney.com
• 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

Takeaways

Tip 1: Insert Yourself into the Journey

The first step is making your presence and support known while respecting your parent’s role as primary caregiver.

Key points:

• Increase visit frequency or phone calls
• Position yourself to observe daily dynamics
• Avoid judgment of decisions
• Listen more than advise
• Show support without taking over

Tip 2: Monitor Caregiver Health

Ensuring your caregiving parent maintains their own health is crucial for sustainable care.

Key points:

• Ask specific questions that can’t be answered with “I’m fine”
• Monitor medical appointments
• Discuss challenges they’re facing
• Watch for signs of stress or exhaustion
• Encourage preventive health care

Tip 3: Provide Emotional Support

Help your parent maintain connections and avoid isolation while caregiving.

Key points:

• Listen actively to what’s said and unsaid
• Validate feelings before offering solutions
• Maintain normal conversations beyond caregiving
• Encourage outside activities and interests
• Help research support resources

Tip 4: Share the Load

Even from a distance, there are many ways to help manage caregiving responsibilities.

Key points:

• Handle digital tasks remotely
• Coordinate with local friends and family
• Create support networks
• Help with scheduling and planning

Tip 5: Participate in Care Details

Get involved in both practical and legal aspects of care management.

Key points:

• Obtain necessary legal documents early
• Secure medical power of attorney
• Address privacy laws and documentation
• Arrange financial access if needed
• Support decision-making processes

Tip 6: Support Through Grief

Grief occurs throughout the journey, not just at its end.

Key points:

• Acknowledge “drip grief” throughout the journey
• Help maintain connections during caregiving
• Support through the final transition
• Assist with post-care legal matters
• Be sure to process your own grief

Special Considerations

When creating support systems:

• Develop emergency plans early
• Create shared care plans
• Document important information
• Keep contact lists updated
• Maintain flexibility in arrangements

About Our Guest Expert

This episode featured Andrew Phipps from Empathy Unbound, who shared his personal experience supporting his father as he cared for Andrew’s mother with dementia. Andrew created Empathy Unbound to promote the idea that empathy is one of our greatest superpowers — one that we often don’t recognize or use enough.

As Andrew explains, “The ability to take on the experience or position of another to help understand them is invaluable. Putting ourselves in someone else’s shoes helps us understand their situation in a way we couldn’t otherwise.” You can find the Empathy Unbound podcast wherever you get your podcasts.

Read More in This Blog here

"I discovered a growth on his gum that was only slightly smaller than a marble. That's when I learned dental care involves much more than just brushing teeth."

As caregivers for our loved ones with Alzheimer's and other types of dementia, we're continuously learning and adapting our care approaches. Through recent experiences, we've discovered important new aspects of dental care that we believe could help other caregivers on their journey.

Connect with us and share your tips:

• Website: https://www.thecaregiversjourney.com
• 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]

Additional Resources Mentioned

Other episodes mentioned

Episode 15 here

Large cell granuloma picture here

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

• Oral swabs here
• Super soft toothbrush here
• Fresh Breath mouthwash here

Full Show Notes here

https://thecaregiversjourney.com/dental-care-update-three-new-tips-alzheimers-and-other-dementias/

When your loved one experiences delusions or hallucinations for the first time, it can be frightening and overwhelming for everyone involved. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we've learned how to navigate these challenging moments.

See Full Show Notes here

Connect with us and share your tips:

• Website: https://www.thecaregiversjourney.com
• 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]

Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

• Electronic medication dispensing and monitoring device for caregiver here

As caregivers for our loved ones with Alzheimer’s and other types of dementia, we often struggle with adapting activities to their changing abilities. Through our experiences, and what we’ve learned from others on their caregiving journeys, Nancy Treaster and I developed three important tips to help you create meaningful engagement that honors who our care receivers are today.

Connect with us and share your tips:

• Website: https://www.thecaregiversjourney.com
• 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]

Additional Resources Mentioned

Other The Caregiver’s Journey podcast mentioned

Home Safety here

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

• Large plastic rings child's toy that center screws into base here
• Adult coloring book here
• Dementia friendly puzzle here
• Lavender lotion here
• Bead maze here
• Fidget blanket here
• Photo gifts
• Shutterfly here
• Memory Cafe example here

Takeaways

From the moment of diagnosis, we need to shift our focus from what our care receivers used to do to what brings them joy now. 

Tip 1: Adjust Our Expectations

Our care receivers’ engagement and abilities change throughout their journey — even throughout each day. 

Key points:

• Let go of ‘before’ comparisons
• Let go of outcomes
• Watch for signs of enjoyment or frustration
• Pay attention to new interests
• Adapt activities to current abilities
• Accept different ways of engaging

Tip 2: Prioritize Their Safety

As we introduce or adapt activities, safety must be a primary concern, considering both cognitive and physical abilities.

Key points:

• Consider vision changes and depth perception challenges
• Adapt activities to safely maintain independence
• Provide appropriate supervision and get creative in places to find it
• Make creative adjustments to familiar activities
• Create support networks for safety

Tip 3: Create Engaging Activities

Create activities to reflect their personal history, career, hobbies and interests, while engaging their senses. Whenever possible, engage multiple senses for a deeper connection and engagement.

Key points:

• Engage their senses:
• • Touch (e.g.: fidget blankets, textured items)
• • Sound (e.g.: familiar music, calming sounds)
• • Smell (e.g.: familiar scents, cooking aromas)
• • Sight (e.g.: colorful objects, family photos)
• • Movement (e.g.: seated dancing, simple exercises)
• Create social connections through:
• • Small group activities
• • Religious or spiritual practices
• • Memory cafes
• • Senior center programs
• • Family gatherings

When planning activities:

• Observe body language for signs of engagement or distress
• Have backup calming activities ready if they get agitated
• Remember that watching can be a form of participation
• Consider “drip grief” (see bottom of post for definition) — both yours and theirs
• Be flexible and creative in your approach
• Accept help from others who want to support you

Read Full Blog here

"If you give me a spa certificate but no gift of time to go with it, I'll probably never use it."

As friends and family of Alzheimer’s and other dementia family caregivers, we want to give meaningful gifts that will actually be used and appreciated. Through our experiences and what we've learned from others on their caregiving journeys, we've developed five important categories of gifts that truly make a difference in a caregiver's life.

See Full Show Notes here

Rate, Subscribe and Share Your Tips on Social Media!

Please click here to review, follow or subscribe to our podcast.  

If you don’t see your preferred platform click on Podchaser and click at the bottom “Write my review”

• You can log in with Twitter, Facebook or Google
• On the right you’ll see a box with “Follow”, “Rate and Review” and “Share” 

Connect with us and share your tips:

• Website: https://www.thecaregiversjourney.com
• 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]

Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

• Begin your self-care journey guide here
• Scented soap Herbaria - here 
• Sue’s favorite popcorn here
• Care support coordination
• Mealtrain.com here
• Caringbridge.com here
• Photo gifts
• Shutterfly here

"I wish I had started monitoring my husband's medication sooner than I did."

As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that medication management becomes increasingly challenging. Through our experiences, and what we've learned from support groups and others on their journeys, we've developed four important tips to help you support your care receiver with medication management.

See Full Show Notes here

Rate, Subscribe and Share Your Tips on Social Media!

Please click here to review, follow or subscribe to our podcast.  

If you don’t see your preferred platform click on Podchaser and click at the bottom “Write my review”

• You can log in with Twitter, Facebook or Google
• On the right you’ll see a box with “Follow”, “Rate and Review” and “Share” 

Connect with us and share your tips:

• Website: https://www.thecaregiversjourney.com
• 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]

Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

• Electronic medication dispensing and monitoring device for caregiver here