Anticipatory Grief and Parkinson’s Disease: Understanding Grief Before Loss

When living with Parkinson’s disease, grief doesn’t wait for a final goodbye. It can quietly enter during moments of change—when roles shift, independence declines, or future plans feel uncertain. Many individuals and care partners experience waves of sadness, anger, fear, or even guilt long before a physical loss occurs.

If you’ve ever felt grief while your loved one is still here, you are not alone—and you are not doing anything wrong. Keep reading to understand why anticipatory grief is a natural response and how to navigate it with compassion and resilience.

What Is Anticipatory Grief?
Anticipatory grief is the emotional response that occurs before an expected loss. In Parkinson’s disease (PD), this can emerge as families witness changes in mobility, cognition, communication, or personality. It may also arise when long-held dreams, routines, or shared plans begin to shift.

Unlike traditional grief after death, anticipatory grief is complex. It can include:

• Sadness about what has already changed
• Anxiety about the future
• Anger at the disease
• Guilt for feeling overwhelmed
• Relief during moments of stability

​These emotions often overlap, creating confusion and emotional fatigue. Understanding that these feelings are normal can bring tremendous relief.

Why Anticipatory Grief Happens in Parkinson’s
Parkinson’s is a progressive neurological condition. Over time, families adapt to new realities—medical appointments, medication schedules, safety concerns, and evolving caregiving roles. Each adjustment can represent a small loss.

Care partners may grieve the partnership they once knew. Individuals living with PD may grieve changes in independence or identity. Both experiences are valid. Naming anticipatory grief helps families move from silent suffering to shared understanding.

Healthy Ways to Navigate Grief Before Loss
While anticipatory grief cannot be eliminated, it can be supported in healthy ways:

• Open communication within the family
• Support groups with others who understand PD
• Counseling or spiritual guidance
• Mindfulness and self-care practices
• Giving yourself permission to feel without judgment

Resilience does not mean ignoring sadness. It means allowing space for both love and grief to coexist.

Join Our Upcoming FREE PD Talk
PD TALK: Anticipatory Grief: Understanding Grief Before Loss
📅 Wednesday, March 25, 2026
⏰ 3:00 p.m.
💻 Zoom
🎤 Presenter: Brett Marston
🗓 Register by 3/23/26
👉 Click to Register:
https://us06web.zoom.us/meeting/register/ACD11yVwR-ic2S1rLGhSgA
In this meaningful session, Brett Marston will explore the emotional landscape of anticipatory grief for families navigating Parkinson’s. Participants will gain insight into why these emotions are normal, how to care for themselves during this tender time, and ways to foster connection and resilience while continuing the journey together.

Why Support Matters
A diagnosis of any form of Parkinson’s can feel overwhelming. But with the right support and resources, individuals can maintain independence, quality of life, and emotional well-being.
For resources, referrals, and support in navigating Parkinson’s and related conditions, contact the Parkinson’s Association of Southwest Florida at www.paswfl.org or call 239-417-3465.

For over 25 years, PASWFL has provided free, high-quality services and programs to individuals and families touched by Parkinson’s disease in Southwest Florida. Their goal is simple: help people live well with PD, regardless of where they are in their journey.

Each week, PASWFL offers more than 25 free programs and support groups, including:

• Wellness and fitness classes
• Speech Exercise classes
• Educational seminars
• Support for care partners
• Support groups

There are no fees to become a member, and PASWFL welcomes anyone touched by PD.

Take the First Step Toward Living Well
If you suspect early Parkinson’s or have been recently diagnosed, you don’t have to face it alone.
👉 Sign up for the PASWFL newsletter:
https://parkinsonassociationswfl.org/signup-enews.html
👉 Become a member—it’s free and confidential:
https://parkinsonassociationswfl.org/signup.html
To learn more, visit www.paswfl.org and discover the power of support, education, and community.