Living Grief: Navigating the Heartache of Dementia When Your Loved One Is Still Here
- Bruce Missen
- May 11
- 3 min read
Caring for someone with dementia is a journey marked by profound love, resilience, and, often, a unique kind of grief. This grief-sometimes called "living grief" or "ambiguous loss"-arises not from the physical absence of a loved one, but from the gradual fading of the person you once knew, even as they remain physically present.
Understanding Living Grief in Dementia
Dementia is a progressive condition, meaning changes unfold slowly over months and years. For family members and close friends, this means grieving not
just at the end of life, but repeatedly, as each new stage brings fresh losses of memories, abilities, shared histories, and the very essence of the person.
As one carer described, "It was like watching someone disappear right in front of my eyes. Even though she was physically present, she was no longer the vibrant and lively woman I had grown up with". This sense of loss can begin at diagnosis and intensify as dementia progresses, surfacing at milestones like moving into care or when a loved one no longer recognises you.
Common Emotions and Experiences
Living grief is complex and deeply personal. People often experience:
Sadness and longing for what has been lost
Shock, disbelief, and denial as changes become apparent
Anger, frustration, or resentment at the unfairness of the situation
Guilt-perhaps for feeling relief, frustration, or for not being able to do more
Social withdrawal and isolation, as it becomes difficult to share these feelings with others who may not understand
Moments of acceptance, gratitude, or even peace, especially when reflecting on happy memories or the love that remains
It’s common to feel conflicting emotions-love and anger, hope and despair- sometimes all in the same day.
The Grieving Process: No Right or Wrong Way
Grief is not a linear process. You may cycle through stages of shock, longing, anger, guilt, and acceptance, sometimes revisiting the same feelings again and again. There is no "normal" timeline, and everyone’s journey is different.
As Loretta, whose mother had young-onset dementia, shared, "With Alzheimer’s, you are constantly in a state of grieving". This ongoing grief can be exhausting, but it is a natural and valid response to the losses you are experiencing.
Caring for Yourself While Grieving
Supporting a loved one with dementia is demanding, and living grief adds another layer of emotional strain. Here are some ways to care for yourself:
Acknowledge your feelings. Allow yourself to feel sadness, anger, or even relief, these are all normal.
Share your experience. Talk with friends, family, or support groups who understand dementia. You are not alone.
Seek professional support. Counsellors and therapists can help you process complex emotions and develop coping strategies.
Write or journal. Expressing your thoughts can help you make sense of your feelings and track your journey.
Take breaks and look after your health. Respite care, exercise, and social activities can help you recharge and maintain your well-being.
Remember and celebrate your loved one. Reminisce about happy times, celebrate special occasions, and find small ways to honour their life and your relationship.
Finding Meaning Amid Loss
While living grief is painful, many carers find moments of meaning and connection along the way. Some find comfort in knowing they did everything possible for their loved one, or in the small moments of recognition and joy that still occur. Others discover new strengths within themselves or a deeper appreciation for life.
As one carer reflected, "I’m grateful for my mother’s life-it taught me some very valuable things about how to live my life … and how to die".
You Are Not Alone
Living grief is a shared experience among those caring for someone with dementia. Support is available from helplines and counselling to carer support groups and respite services. Reaching out can make all the difference.
If you need help, consider contacting the National Dementia Helpline (1800 100 500 in Australia) for expert information, advice, and support.
Grieving for someone who is still alive is one of the hardest parts of dementia. But in sharing our stories, seeking support, and caring for ourselves, we can find resilience, connection, and even moments of peace amid the pain.
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