“In this stage, caregiving actually in some areas becomes easier because we’re now in control. We’re not struggling with them. We’ve just taken it over. On the other hand, it’s harder in some areas.” Sue Ryan and Nancy Treaster
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.
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 the “later on” stage brings both relief and complexity. While you’re no longer struggling over control — you’ve simply taken over — this stage introduces deeper grief, end-of-life planning, and the need for specialized support systems.
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.
Understanding “Later On” — The Third Stage of Caregiving
To understand where you are now, let’s review the three distinct stages of the caregiving journey:
In the Beginning: Your care receiver is mostly independent, making their own decisions while you provide behind-the-scenes support.
The Messy Middle: Your loved one has less control over their actions, so you begin asserting control in certain areas. This creates struggle and resistance, making it truly “messy.”
Later On: You are now managing all aspects of their care, whether you’re providing direct care or guiding others who help.
What “Later On” Really Looks Like
This stage can feel contradictory. In some ways, caregiving becomes easier because you’re no longer fighting for control — you are managing all aspects of their care. The daily struggles over independence have ended, and you can focus on providing the best care possible.
However, other aspects become more challenging:
- Increased Responsibility: You are managing all aspects of their care. Every decision rests with you or people you’ve chosen to help.
- Emotional Complexity: You may experience a shift from “drip grief” (small losses along the way) to “anticipatory grief” — grieving the approaching loss of your loved one — or other significant changes.
- Support Needs: Both you and your care receiver require different types of support than you did in earlier stages.
- Identity Questions: After months or years of intensive caregiving, questions about your own identity and future begin emerging.
The key insight is that you’re still caring for two people: your loved one and yourself. Both needs are equally important and require intentional attention.
Step 18: Plan for End-of-Life Services
This step often feels uncomfortable, and you might think, “Not now, it’s not happening anytime soon.” The reality is that you don’t know when the end will come, and planning now serves everyone’s best interests.
Why Plan Now?
When the end does arrive, you won’t want to have to be making these decisions. You’ll be dealing with grief, logistics, and perhaps emotional overwhelm. Planning ahead removes this burden from an already challenging time.
Benefits of Early Planning:
- No pressure or time constraints
- Opportunity to involve family members in decisions
- Time to research options and make thoughtful choices
- Peace of mind knowing arrangements are complete
- Ability to focus on your loved one and family during your loved one’s final time.
What to Include in Your Planning
A comprehensive end-of-life service plan should address:
- Service Decisions:
– Burial or cremation preferences
– Type of service (religious, secular, celebration of life)
– Location for services
– Music, readings, or special elements. - Practical Details:
– Funeral home selection and contact information
– Cemetery or columbarium choices
– Officiant contact information (pastor, rabbi, celebrant)
– Obituary preparation
– Reception or gathering plans. - Documentation:
– Keep all information in one accessible location
– Share plans with key family members
– Include contact information for all service providers
– Update plans if circumstances or preferences change.
Revisiting Earlier Planning
If you completed end-of-life planning during the “In the Beginning” stage, revisit those decisions now. Circumstances, preferences, or family situations may have changed. What seemed appropriate in the beginning might need adjustment based on your current reality.
Use this review as an opportunity to involve family members who will be impacted by these decisions, ensuring everyone understands and supports the plans.
Step 19: Bring in Hospice Care
Now is the time to engage hospice care, whether you’ve been working with palliative care and focusing on curative treatments, or you have determined it’s time to bring in the valuable support of hospice services.
Understanding the Transition
If you’ve been receiving palliative care, your palliative care team will guide you toward hospice when appropriate. Often, the same organization provides both services, making the transition smoother.
Hospice care represents a shift from working as a team to extend life to providing comfort care when the decision has been made not to continue steps to extend life. This doesn’t mean giving up. This means focusing on quality of life, pain management, and dignity during remaining time.
When to Call Hospice
The Essential Truth: If you’re not using palliative care, the time to learn about hospice care is actually right after the diagnosis, so you have a clear understanding of what hospice care is and how to know when the right time for your loved one will be to bring hospice care in. The hospice care team will evaluate your loved one and determine if hospice care is appropriate. If not, they’ll provide guidance about when to reconnect.
Benefits of Early Evaluation:
- Establishes baseline assessments for future comparison
- Provides expert guidance on progression indicators
- Reduces anxiety about “missing the right time”
- Offers support and resources even before formal enrollment.
What Hospice Provides
Hospice care offers comprehensive support including:
- Medical equipment and supplies
- Nursing care and medical oversight
- Personal care assistance
- Pain and symptom management
- Emotional and spiritual support for patient and family
- Respite care for caregivers
- Bereavement support.
Finding Hospice Care
Research Process:
- Search “hospice” plus your city, state, or country
- Look beyond sponsored links to find local organizations
- Review ratings and testimonials
- Contact multiple organizations to compare services
- Talk with people you know who have utilized hospice care services
- Schedule consultations to meet teams and ask questions.
Important Considerations:
- Hospice organizations look forward to discussing their programs, clarifing both their role and services of support for you and your loved one
- Initial consultation to determine the needs, clarify when to bring hospice in, and what services are available for the loved one and family members
- It is true — some patients “graduate” from hospice if their condition improves
- Hospice doesn’t mean immediate end of life — it means comfort-focused care.
A Personal Example
Sue’s experience illustrates the flexibility of hospice care.
My husband was initially evaluated and didn’t qualify for hospice. Later, when he did qualify and entered hospice care, he actually improved and “graduated” from hospice for over a year, before being supported by hospice care until the end of his life.
The hospice care journey for me was not finished. Their clergy and bereavement counselors reached out several times to have conversations, give me the space to share my feelings, help me understand feelings that may come up, and make sure I knew I had a place to turn in my grieving.
This demonstrates that hospice evaluation and care don’t mean imminent death — they mean accessing appropriate support for your current situation.
Step 20: Address Anticipatory Grief and Continue Self-Care
The final step focuses entirely on you — the caregiver who has been caring for two people throughout this journey.
Understanding Anticipatory Grief
Anticipatory grief differs from the “drip grief” experienced in earlier stages. This deeper form of grief occurs when you recognize that your loved one’s condition has dramatically worsened and their passing may be approaching — whether in months or years.
Characteristics of Anticipatory Grief:
- Grieving the loss before death occurs
- Processing the approaching end of your caregiving role
- Mourning the person you loved
- Experiencing complex emotions about the future.
The Unique Nature of Grief
Every grief experience is different, even for the same person grieving different loved ones. You might feel:
- Different emotions for each relationship (grandmother, father, spouse)
- Varying intensities of grief based on your connection
- Conflicting feelings about your loved one’s condition
- Uncertainty about how to process these emotions.
Common End-of-Caregiving Emotions
When your caregiving journey ends, you might experience:
- Anger about the disease or circumstances
- Relief that suffering has ended (for both of you)
- Loss of identity after years of intensive caregiving
- Guilt about feeling relieved
- Confusion about what comes next in your life
- Emptiness from the sudden change in daily routine.
Considerations for Honoring Your Grief
- Acknowledge your grief as valid and important.
- Be compassionate with yourself as you would with others.
- Reach out for support rather than processing alone.
- Recognize you’ll navigate this loss in your own time and way.
- Accept that conflicting emotions are normal and healthy.
The Importance of Support Groups
Support groups become especially valuable during this stage because:
- Other members have navigated similar experiences.
- You can share emotions without judgment.
- Different perspectives help normalize your experience.
- Ongoing support continues beyond your loved one’s death.
- Community provides identity beyond caregiving.
Continuing Self-Care
While self-care remains crucial during this final stage, it may look different:
- Emotional support through counseling or support groups.
- Physical health maintenance despite caregiving demands.
- Social connections to prevent isolation.
- Future planning for your life after caregiving.
- Spiritual support if that’s meaningful to you.
Completing the Journey
These final three steps — end-of-life planning, hospice care, and grief management — complete our 20-step roadmap for dementia caregiving. While this marks the end of our structured guide, it doesn’t mean the end of your need for support and community.
Key Insights for “Later On”
Complex Emotions: This stage is simultaneously easier (you’re in control) and harder (you bear full responsibility). Both experiences are valid.
Plan Ahead: Complete difficult planning tasks now while you have emotional capacity, not during crisis moments.
Embrace Support: Professional hospice care and personal support systems become more important, not less, as your journey progresses.
Honor Your Grief: Anticipatory grief is real and significant. It deserves attention, compassion, and support.
Maintain Perspective: You’ve been caring for two people throughout this journey. Continue prioritizing both as you navigate this final stage.
Looking Beyond Caregiving
While it may be difficult to imagine now, your intense caregiving role will eventually end. When that time comes, it’s important to intentionally rediscover who you are now, who you are beyond being a caregiver. The support systems you’ve built, the self-care practices you’ve maintained, and the grief work you’ve done will all contribute to your ability to navigate life after caregiving.
Important Truth: You are not alone in this journey. Whether you’re ‘In the Beginning, ‘The Messy Middle’, or ‘Later On’, there are others who understand your experience and there are resources designed to support you.
Our Fundamental Message: You’re not meant to journey alone. Reach out when you need support. Accept support when it’s offered. Join communities of people who understand. Take care of both people in this caregiving relationship — you and your loved one. You don’t have to figure this out alone.
Our caregiving journeys are one of the most challenging seasons of our lives. They are also filled with love, growth, and profound meaning. By following this roadmap and accessing appropriate support at each stage, you can navigate your journey with confidence, knowing you’re providing the best possible care for your loved one while taking excellent care of yourself.
Have you entered the “later on” stage of your caregiving journey? How are you managing the complex emotions and responsibilities of this phase? Share your experiences in the comments below or on our Facebook or Instagram pages.
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We’re all on this journey together.
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