This is the second installment in the Critical Dementia Skills (CDS) series. For more information on the series, start HERE. You can also click on the CDS tags in the blog for more.
If you, like so many dementia care partners, have thought that you are grieving the loss of a spouse, parent, or friend even though they are still alive, there is a good chance that you are experiencing ‘ambiguous loss.” While this is feeling is not a litmus test as to if you have it, it is close. If you are curious about this, read on.
Ambiguous loss is complicated grief that impacts many dementia care partners because their loved one with dementia is “physically present, but psychologically absent.” Professor Emeritus Pauline Boss at the University of Minnesota has been studying ambiguous loss since it was the topic of her doctoral dissertation over forty years ago. It’s been a privilege over the past 4 years to tell over 200 people -personally or in presentations- about Dr. Boss’ concept that should be a household name.
We tend to think that we can solve problems and, more often than not, we like when something is distinct, clear, or “black or white.” It is when something is clear that we can start to cope with reality, even if it is uncomfortable. Most of us may have experienced a romantic relationship where the confusion of “are we are dating or are we not” is more burdensome than the bad news that we are not dating anymore. While this is a simple example, ambiguous loss from dementia is an infinite-amount more heartwrenching.
This confusion and unclear loss wreaks havoc on our minds and emotions. While society may consider this a medical disorder for care partners, Dr. Boss tells us that this is not a pathological condition or disease 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.
Besides the emotional pain, what practical problems are associated with ambiguous loss?
According to Dr. Boss and colleagues’ research, experiencing ambiguous loss can potentially impact a family member or care partner in two ways:
- Emotional close-out: You may keep the person living with dementia at a distance, not recognizing the person living dementia as your parent/spouse any longer. You may avoid having a significant relationship, which can unintentionally harm your loved one.
- Freezing: This is the idea that you are in such confusion that it halts you from being a proactive care partner that you can be. If you see what you should do (book appointments, arrange care, etc), you may feel stuck and unmotivated to take action.
What other thoughts might I have with ambiguous loss?
It’s common for there to be role ambiguity where someone asks these questions: “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?” Of course, as Catholics, the Sacrament of Marriage involves honoring vows in sickness and in health; you are definitely still married. We are also parents of our children for life. While many of us know the answer, the question may enter our minds, causing guilt. It usually helps to talk with a friend, support group, professional, or pastor about the guilt.
What do I do if I think I am experiencing ambiguous loss?
While I encourage everyone to read Pauline Boss’ book Loving Someone with Dementia: How to Find Hope while Coping with Stress and Grief, I will offer a tip from the book below. Just about every person who has read the book at my recommendation has found it extremely helpful in placing a name to the ambiguous loss that they have been experiencing without knowing it.
One piece of advice from Dr. Boss is using “both-and thinking,” the idea of holding two opposing ideas in your mind at the same time. For example, you may consider thinking/saying, “My Mom is BOTH my mother AND my child now.” Do you see how these are two opposing ideas? Another situation could be, “My husband has been BOTH alive AND gone for three years now.” The key is to get accustomed to both in order to cope. There are many more both – and situations if you stop to think about it.
While we have focused mainly on the care partner (that is, the primary caregiver) and not much on other family members, I often wonder if those family members who do not come around or help (perhaps in denial) are experiencing ambiguous loss. I am not proposing the hypothesis, but it is a question that has been nudging me for years. Perhaps, we will tackle that in the future.
The next time that we discuss ambiguous loss, we will draw some positive parallels to our Catholic faith.
Questions for you to think, write down, and share in the comments section (any or all):
- Do you think you are experiencing ambiguous loss? If so, what makes you think that?
- Give “Both-And thinking” a try. What’s a both-and statement that applies to you?
Thank you for reading this far and for commenting. Let’s tell hundreds more care partners about this concept by sharing the article. God bless you.
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