It’s called “ambiguous loss,” that complicated grief that impacts many dementia care partners because their loved one is “physically present, but psychologically absent.” Professor Emeritus Pauline Boss has been studying ambiguous loss since it was the topic of her doctoral dissertation over forty years ago.
I discovered ambiguous loss while listening to a podcast three years ago and it made me think about my support group members who said they were grieving the loss of the loved one, even though the loved one was still alive. Some care partners ask me to recommend a bereavement support group that they can attend while they are a care partner.
Our current culture in the U.S. demands that we clearly define a problem and then solve it; the journey of dementia is usually devoid of these things. We are in a new place on the journey, constantly trying to cope with our emotions and the (sometimes) ever-changing condition of our loved one with dementia.
It’s common for there to be role ambiguity: Is my loved one still my wife if she doesn’t know who I am? Am I still married? Is she still a mother if she does not recognize her children?
This confusion and unclear loss wreaks havoc on our mind and emotions. While society may consider this a medical disorder for care partners, Dr. Boss tells us that this is not a pathological condition of the care partner; it is a result of grieving the loss of a relationship with the person in front of us. So, if this describes how you are feeling, you are not alone.
The good news is that I have seen care partners find some comfort in reading Pauline Boss’ book Loving Someone with Dementia: How to Find Hope while Coping with Stress and Grief. I have copies that I lend to group members and most return the book with excellent feedback of understanding their feelings better. This understanding puts them on the road to coping.
Please consider posting a prayer on the Dementia Prayer Wall for those care partners who are experiencing ambiguous loss. We also pray for those with ambiguous loss during the Sorrowful Mystery of The Peace with Dementia Rosary.
Thank you for sharing this article with someone and may God bless you and your family.
