CARERS | Dealing with ambiguous loss

Caring Through Uncertainty: Understanding Ambiguous Loss in Parkinson’s

When someone you love is diagnosed with Parkinson’s, especially young onset, it can feel like life has been turned upside down. You may still see the same face, hear the same voice, and share the same home, but something has changed. This feeling of loss without a clear ending is called ambiguous loss.

What is ambiguous loss?

Ambiguous loss is a type of grief that happens when someone is physically present but psychologically or emotionally changed. For care partners of people with Parkinson’s, this might look like:

• Missing the person they used to be before symptoms appeared
• Feeling unsure about the future
• Struggling with changes in communication, mood, or memory.

Unlike other types of grief, ambiguous loss doesn’t have a clear resolution. There’s no funeral, no goodbye… just a slow shift in roles, routines, and relationships.

What can ambiguous loss look like?

You might notice:

• Feeling guilty for grieving someone who is still alive
• A sense of emotional distance, even when you’re together
• Frustration or sadness over changes in your partner’s personality or abilities
• Feeling stuck between hope and despair.

These feelings are normal. They don’t mean you love your partner any less, they mean you’re human.

Changing roles & identity

As Parkinson’s progresses, care partners often take on new roles: managing medications, attending appointments, or helping with daily tasks. These changes can affect your sense of identity. You might feel like you’ve become more of a nurse than a spouse, or more of a parent than a partner.

It’s important to remember that your identity matters too. You are still you and your hobbies, friendships, future plans and dreams are still valid. Making space for your own needs isn’t selfish; it’s essential.

Intimacy & communication

Ambiguous loss may affect emotional and physical closeness. You may miss the way you used to talk, laugh, or be intimate. These changes can be painful and confusing.

Try to find new ways to connect, through shared routines, gentle touch, or simply being present. Open conversations about what each of you needs can help rebuild closeness, even if it looks different now.

Navigating grief & loss

Grief isn’t just something that happens after death. It can happen in waves throughout the Parkinson’s journey, as the impacts of symptoms are ever-changing and ever-evolving. You might grieve the loss of shared plans, physical closeness, or the ease of everyday life. You may grieve for your children and what they may not experience with their parent due to the Parkinson’s.

Psychologist Elisabeth Kübler-Ross described five stages of grief:

1. Denial: A protective mechanism where you struggle to accept the reality of the loss. It may feel like shock or numbness, helping to buffer the initial impact.
2. Anger: Feelings of frustration, helplessness, or injustice may surface. Anger can be directed at oneself, others, or even the person who has Parkinson’s.
3. Bargaining: A stage of “what if” or “if only” thinking, where you may try to negotiate or make deals in hopes of reversing or lessening the loss.
4. Depression: Deep sadness and withdrawal often occur as the reality of the loss sets in. This stage reflects the emotional weight of grief and the sense of emptiness it can bring.
5. Acceptance: You begin to come to terms with the loss, finding ways to move forward while still honouring what was lost. It doesn’t mean being “okay” with it… just that you are learning to live with it.

These stages don’t always happen in order, and you might revisit them many times. That’s okay. Let yourself feel what you feel. Suppressing emotions can lead to burnout. Talking to a counsellor, joining a care partner support group, or simply journaling can help you process your experience.

Cultural & family differences in grief & care

Different cultures have different ways of understanding illness, caregiving, and grief. Some may value stoicism (not showing emotions), while others encourage open expression. There’s no right or wrong way to feel. What matters is finding what works for you and your family.

If you have children, they may also feel confused or sad about the changes in their parent. Talking to your children openly, using age-appropriate language, and involving them in care in small ways can help them feel included and supported.

Coping with ambiguous loss

Here are some ways to cope:

• Find support: Connect with others who understand. Peer groups, online forums, or a trusted friend can make a big difference. Contact Carers Australia (Carer Gateway on 1800 422 737) and your local Parkinson’s organisation (Parkinson’s infoline 1800 644 189) to find a group near you.
• Have difficult conversations: Talk openly with your partner about changes, fears, and hopes. It might be hard, but it builds connection. Do this with a couples’ counsellor, social worker or religious organisation.
• Plan for the future: Get Advance Care Plans in place early to alleviate stresses in the future.
• Focus on what remains: While some things change, others stay the same. Celebrate small wins and shared moments. There’s always a silver lining somewhere.
• Take breaks: You deserve rest. Respite care, even for a few hours, can help you recharge. Have regular exercise classes or coffees with friends.
• Seek professional help: A psychologist or wellbeing counsellor can guide you through complex emotions. You can get a Mental Health Plan through your GP.
• Don’t lose focus on your own self-care: Self-care for carers is just as important as caring for loved ones.

Pause & reflect

• Have you experienced ambiguous loss in your journey?
• How have your roles and identity changed?
• What/who helps you feel grounded and supported?

References

• Boss, P. (2007). Ambiguous loss theory: Challenges for scholars and practitioners. Family Relations, 56(2), 105–110. https://doi.org/10.1111/j.1741-3729.2007.00444.x
• Lageman, S. K., Mickens, M. N., & Cash, T. V. (2015). Caregiver-identified needs and barriers to care in Parkinson’s disease. Geriatric Nursing, 36(3), 197–201. https://doi.org/10.1016/j.gerinurse.2015.01.002
• Carter, J. H., Lyons, K. S., Stewart, B. J., Archbold, P. G., & Scobee, R. (2010). Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early-onset Parkinson’s disease. Movement Disorders, 25(6), 724–730. https://doi.org/10.1002/mds.22888
• Kübler-Ross, E., & Kessler, D. (2014). On grief and grieving. Simon & Schuster.

Support: 

If your life is in danger, call 000

GriefLine Website
Griefline offers free, compassionate, and confidential support. Because grief deserves to be heard, not dismissed. Helpline 1300 845 745  8am to 8pm: 7 days (AEST)

Carer Helpline 1300 544 660

For any Carer supports and services, please call the Carer Gateway on 1800 422 737. This is staffed from 8am to 6pm Monday to Friday. After hours they will respond to emergency caring situations e.g. carer themselves needing to go to hospital.