My wife, Sheryl, and I personally experienced the ambiguous loss of dementia. We just didn’t know it at first.
We had been helping care for Sheryl’s mom, Trish, for many years. We saw Alzheimer’s slowly steal away parts of who Trish was. As the disease progressed we had been able to move her into a local memory care facility. She was safe and secure, and we could visit her often, but we both felt a sense of overwhelming sorrow.
Then, Sheryl discovered a book by Dr. Pauline Boss, an educator and researcher recognized for her groundbreaking research on the theory of ambiguous loss. Dr. Boss pioneered the field in 1973, and in 2011 she published a book called “Loving Someone Who Has Dementia.”
I remember Sheryl reading the first few pages of that book, then pausing to tell me: “This is what I’m feeling. I’m dealing with ambiguous loss.”
What Is Ambiguous Loss?
Ambiguous loss is a loss without clarity, closure, or consolation. It’s a loss that creates confusion, freezing the grieving process. Think of a military family with a loved one missing in action. Think of parents of a kidnapped child. Think of families with loved ones who have gone missing during a natural disaster. These losses make it difficult to cope and find meaning.
Dementia creates ambiguous loss. Your loved one is here, but not here. It’s confusing. There’s no timetable, so no sense of closure.
When you’re caring for a loved one living with dementia, you know something is lost. You see it and you feel it, but it’s not the same as when a loved one dies. Nobody comes to you to validate your loss, to comfort and console you.
When a loved one dies, people tell you how sorry they are. They send cards and cook casseroles. You have a service.
When a loved one is living with dementia, many people don’t seem to know what to say or what to do.
Causes of Caregiver Stress
Dementia caregivers often find resources stretched thin. You don’t have enough time or money to provide all the care you want to give.
Many caregivers, however, are most distressed by the uncertainty and ambiguity involved with:
- not being able to ease the suffering
- not having control over their own lives
- not knowing what role to play
- not knowing when it will end
- not knowing whether they are doing a good job
Sometimes the uncertainty feels worse than the day-to-day challenges of providing care.
Learning to Better Accept Ambiguity
People are naturally resilient. We all live and cope with ambiguity. In her book, Dr. Boss suggests several ways we can increase our tolerance for ambiguity. For me, it was especially helpful to:
- Learn to say goodbye each time you see a new loss.
- Learn both-and (not either-or) thinking, recognizing contradictory ideas can both be true.
These ideas aren’t magical. They won’t fix everything, but they may help you find more meaning during your caregiving journey. Let’s take a closer look at these concepts and see how they might help.
When you see parts of your loved one slipping away, take time to grieve. The loss is real.
For example, when your loved one is no longer able to travel, recognize that as a real loss. Take some time to think about trips they have made, family gatherings they have attended. Perhaps spend some time looking at old photographs.
When your loved one can’t remember someone in your family, the loss is real. If your loved one can no longer remember you, the loss is real and painful. It’s okay to cry. Say goodbye as you cherish all the love you have shared.
It may be helpful to mark your loss with a simple symbolic gesture. You might light a candle, spend a few moments contemplating your loss, then extinguish the flame. You might place a small token in a memory box. You might listen to a song related to your loss.
Sometimes, two seemingly contradictory ideas can both be true.
For example, it can be easy to wonder if your loved one is still here or not. You’re trying to make sense of things, so you want to know which is true. Instead, recognize that your loved one is both here and gone.
Here’s another helpful both-and statement. You are both caregiver and a person with needs.
Take a moment to consider what both-and statements apply to your current situation.
Grieving Along the Way
Sheryl and I started learning to recognize real loss, grieving along the way. We grieved when we realized we could no longer take Trish on overnight trips. We grieved when she could no longer pick out her own clothes. Trish had been an elementary school teacher; we mourned when she lost her ability to spell.
We learned “both-and” thinking, recognizing that two contradictory ideas can both be true at the same time. We learned to remind ourselves things such as:
- Mom is both here and not here.
- We are both caregivers and spouses.
Your journey as a caregiver is not an easy one. The loss you are experiencing is real. Your loss is complicated, so your grief is complicated.
Consider how you might grieve along the way. Share your feelings with others. Write your thoughts in a journal or diary. When you experience a new loss, use symbols or rituals to help you say goodbye. As a family, share a moment of silence in recognition of your loss.
Allow yourself to grieve, even as you allow yourself to love and care.
For your convenience, here is a link to purchase “Loving Someone Who Has Dementia” on Amazon. Songs & Smiles is part of the Amazon Associates program, so we may receive a small commission if you purchase items after clicking on a product link or image.
Thank you for helping me begin to understand how to support my friend in his illness and his caregivers as well.
This is me. I have suffered and am still suffering ambiguous loss. They started in 2016 and 2017, Dad and Mom, respectively. Memories fading, getting lost in their own town, losing things. We lost Mom in August of this year. And Dad is struggling with his VaD as well. This article took everything I feel and put it into words. Thank you so much for being in the world to help those suffering at the hands of the cruel disease of dementia.
Our hearts go out to you. Thank you for your kind words.
Thank you for helping suffering families. One never knows what the right approach it or how effective any efforts may be on the condition: hire a nutritionist, quit job and move back home; play lottery to win enough to afford private care; continue praying for mercy for your loved one; etc. Your kindness through sharing is deeply appreciated.