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.

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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 Preplanning
• TCJ blog: 30. End of Life Service Preplanning
• Leverage 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 Hospice
• TCJ 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.