source: Freepik
Ambiguous loss is a type of grief common among caregivers: your loved one is physically present but psychologically absent. The term was coined decades ago by Pauline Boss, PhD. She noted that this loss lacks clarity or closure because the loved one is still alive.
In August 2025, we came across a wonderful post about ambiguous loss by caregiver Dan Reddick on the online community Smart Patients (smartpatients.com). Dan’s wife Kara was diagnosed with frontotemporal degeneration in October 2020 at age 58. UCSF’s diagnosis includes several subvariants — progressive supranuclear palsy, corticobasal syndrome, and nonfluent primary progressive aphasia. In August 2025, Kara is in the late stages of this journey.
In early 2022, as Kara’s decline rapidly accelerated, Dan wrote about his struggles and what action he was going to take in coping with the ambiguous loss of his wife. He added a section in June 2025.
For these eight stages and healing strategies in the face of ambiguous loss, Dan synthesized the ideas of Dr. Boss (ambiguousloss.com), John Onwuchekwa (johno.blog, on Substack), and other grief experts. As part of these strategies, he presents challenges or action items for himself, and addresses how he will meet those. He describes his text as “raw facts, action plans, and thoughts.”
Though Dan’s wife has an FTD diagnosis, there is nothing disorder-specific about his thoughts on ambiguous loss. (Dan refers to “tau protein,” which is the protein at play in PSP and some other forms of FTD.)
This is lightly edited, and shared here with Dan’s permission.
Ambiguous Loss – Approaches For Healing
By Dan Reddick
Stage 1: Regaining Resilience
Making sense of what has happened is one of the biggest challenges as you begin to process your grief.
Challenge: Making sense of what has happened.
It makes sense because:
- Kara’s body lost the ability to properly remove tau proteins from her brain.
- The build up of tau protein in her brain has damaged her frontal and temporal lobes.
- The damage to her brain has caused her to have aphasia, she is unable to verbally communicate fluently.
- The damage to her brain has caused her to lose motor skills for writing, walking and use of her right hand.
- The damage to her brain has caused her vision to be significantly compromised.
- The damage to her brain makes it difficult for her to swallow.
- These current conditions are progressive; therefore they will never improve.
- Over time, other physical, mental and neurological limitations will manifest.
When your loved one is still physically present, but no longer the same person you remember before, or your loved one is missing, and you don’t know what has happened to them, it’s difficult for you to move forward with your grief. So, having a high tolerance for ambiguity and learning to live with not having closure becomes important in coming to terms with your grief.
Challenge: Regaining and building resilience.
I am more resilient and have come to terms with my grief because…
- I understand and accept that what has been lost will never be regained.
- I understand and accept that each night is an end and each morning is a new beginning in Kara’s decline.
- Kara, the love of my life has changed, forever.
Stage 2: Reaching out to others
In trying to find meaning and learning to cope with your loss, it’s important to keep moving forward with dealing with your grief.
Finding comfort in your continued relationships with others will help you establish a new normal way of living. Joining a support group is also something to consider. Being able to talk to others who are in similar situations may be helpful to you in understanding how you are feeling.
Challenge: Join support groups to be able to talk to others.
- I need the support of others. As an island, I am weak.
- I have joined an on line FTD support group. I will participate each month.
- I have joined an in person group of caregivers of loved ones with dementia. I will participate twice a month.
- I have joined both the online FTD Support Forum and Smart Patients, I will continue my involvement.
- I will utilize these support groups to help me with both emotional and caregiving challenges.
- I will give back to these groups by sharing best practices for caregiving and provide emotional support to others on this journey.
Stage 3: Practicing self-care (Refer to Stage 7 for details)
Taking care of yourself is also very important in dealing with your grief. Self-care includes getting proper rest and nutrition, finding the time to exercise, taking care of your personal hygiene and mental health.
Stage 4: Practicing mindfulness
Being mindful means being present and accepting things as they are right now. This higher awareness leads to peacefulness and a sense of calm that will help you in coping during stressful times.
Challenge: Mindfulness being in the present.
- Practice meditation daily. Focus on my breathing, if distracted stop the thought forgive myself about lack of focus and return to breathing.
- STOP. Look around and find beauty the beauty that is everywhere, take it in and comment to someone about it.
Mindfulness works because it forces you to let go of the past and it relieves you of the pressure and anxiety caused when you think about what will help you in the future.
Stage 5: Accepting and letting go
Accepting things as they are may be difficult to imagine as a possibility. It’s understandable if you aren’t able to immediately find contentment and peace with things as they are. However, the more you focus on practicing self-care and mindfulness, you will find it easier to accept that there may not be any answers to the loss you’ve suffered and that it’s okay if you never know.
Challenge: Accept that there are no answers to the loss and I have no control.
- I am not a doctor or a miracle worker.
- There is no cure for FTD.
- Before the onset of the disease and currently I have no control of how or why Kara’s body choose to not process the tau protein and remove it from her brain.
- There is nothing I could have done differently to stop this from happening.
- What could have been for Kara and me is over.
- Going forward will be different each day and I will have no control of how slow or how fast things will change.
Sometimes you don’t have control over the way things are, and you gradually learn to let go by not holding on to the possibilities of what could have been or what you could’ve done differently.
Stage 6: Sharing in memories
Pull out photo albums and sharing pictures and memories attached to them with your family and friends. Take new pictures of those in your life right now and remember to live your life instead of being suspended in uncertainty.
Challenge: Set up electronic photo board in her room.
- Post both past and current pictures of our kids and grandkids and current happenings.
Stage 7: Mastering what’s in your control
A great way to manage all the uncertainty in your life is to master the things that you are able to control. For example, keeping a clean living environment and cooking healthy meals will help you to recenter your focus on things that you already know you can do. It takes the pressure off of having to learn new things or new ways of living.
Challenge: Focus on things that I have always done and that I already know.
Everyday I can:
- Read the Bible and pray
- Make sure our home is 100% prepared each morning for the day ahead.
- Eat healthy food and limit drinking
Five times a week, I can:
- Cardio workout (or surf)
- Lift weights (or surf)
- Spend time on the beach (or surf)
- Practice Spanish
- Prepare for home demo and rebuild
These simple steps can make you feel as if you’re in control and will alleviate some of the stress and anxiety you might be experiencing.
Stage 8: Making new memories
This step goes beyond just taking new photographs to add to your photo album. This is more aligned with you going out and actively forming new memories of your life now without your loved one in it.
As difficult as it may seem for you to accept their loss, it’s important for you to continue living your life and moving forward. Take small steps in this direction until you build the confidence to take larger, more meaningful steps in accepting your new reality.
Challenge: Continue living. (added this section June 2025)
- Kara’s condition is in the advanced/end stage.
- Kara needs both my care and care from the hospice team.
- Kara is going to die.
- Kara and I will no longer be together on this earth.
- One day soon I will be on my own.
- I will develop a new life, full of family, friends and new horizons.