
17/02/2025
If your loved one has recently been diagnosed with a mental health condition, you might be struggling with grief.
When we think about grief, we often picture the loss of a loved one who has passed away. However, caregivers frequently experience a unique and complex form of grief while caring for someone who is still living. This experience is common and deserves recognition.
The Caring Journey: Understanding the Phases
Caring for someone with mental illness often follows a path with distinct phases, each bringing its own emotional challenges:
Phase 1: Recognition
The journey often begins with a troubling awareness - you notice persistent changes in your loved one's behavior, thinking, or emotional state. These aren't just occasional odd moments, but consistent patterns that signal something is wrong.
Phase 2: Diagnosis and Starting Treatment
This phase brings both clarity and new challenges as you receive a formal diagnosis. You begin learning about the condition and navigate the healthcare system, possibly including hospitalisation. This period often brings a mix of relief at having answers and anxiety about the future.
Phase 3: The Adjustment Period
Now comes the complex work of finding the right treatment approach or dealing with side effects, lack of insight, denial or unwillingness to comply with medication and treatment. You might experience setbacks and improvements as medications are adjusted and you search for the right healthcare providers. During this time, you may start recognising your own need for support.
Phase 4: Daily Management
The reality of long-term caregiving sets in. You learn to balance the demands of caregiving with other life responsibilities, sometimes making difficult decisions about work and personal commitments.
Phase 5: Finding Your Rhythm
With time and experience, many caregivers develop effective routines and realistic expectations. You build stronger support networks and find ways to maintain your own well-being while caring for others.
Phase 6: Role Transition
Sometimes, the active caregiving role ends - whether due to recovery, changed circumstances, or other factors. This transition can happen at any point and brings its own emotional challenges.
Understanding Ambiguous Loss
Throughout these phases, caregivers often experience what experts call "ambiguous loss" - grieving someone who is physically present but somehow changed or absent in other ways. This creates a unique form of grief characterised by:
• Feeling stuck between hope and hopelessness
• Ongoing loss without clear resolution
• Uncertainty about the future
• Guilt about grieving someone who is still alive
Living with Both Hope and Loss
One of the most challenging aspects of being a caregiver is managing conflicting emotions. You might feel deep love for the person while struggling with their behaviors. Rather than seeking "closure," many caregivers find strength in accepting that they can hold both joy and sorrow, both hope and grief.
Understanding "Recycled" and "Complicated" Grief
Grief often resurfaces during celebrations or life events, It happens when a carer is reminded of the extent to which illness has impacted on the life of the person they care for.
Many carers attend birthdays, weddings and graduations knowing that the person they care for cannot experience the joy of these special occasions. This reality can be difficult to accept with each celebration acting as a trigger for grief known as "recycled" or "living" grief. Some caregivers experience "complicated" grief, which can take several forms:
• Chronic grief that seems endless
• Delayed grief that emerges unexpectedly later
• Overwhelming emotional responses
• Grief that's hidden or denied
Finding Your Path Forward
While there's no "getting over" these experiences, many caregivers find ways to live meaningfully alongside their grief. Signs of healthy adaptation include:
• Being able to talk openly about your situation
• Finding balance between caring for others and yourself
• Accepting support from others
• Gradually rebuilding a fulfilling life while maintaining your caregiving role
Remember, it's okay to seek help. Professional support services, including grief counseling, can provide valuable assistance as you navigate these complex emotions.
If you need immediate support, services like the Grief Line (1300 845 745) offer free, anonymous counseling from midday to 3:00 AM, seven days a week.
Your grief as a caregiver is real. While the journey isn't easy, understanding these emotions and seeking support when needed can help you maintain both your caregiving role and your own wellbeing.
Resources:
The leading specialist in ambiguous loss: https://www.ambiguousloss.com/
https://whatsyourgrief.com/ambiguous-grief-grieving-someone-who-is-still-alive/
LEAP Institute – managing lack of insight: https://leapinstitute.org/about/