Somewhere through the stages of life to this point, whether it be the loss of a loved one or a cherished pet, you have likely come across readings about the stages of grief.  These stages, originally coined by Elizabeth Kubler Ross in her famous book On Death and Dying, outline how we move through grief to healing.  But dementia brings a different element to grief that is sometimes hard to fit into a concrete model.  As you sit with your loved one day after day, week after week watching their body, mind, and personality succumb to dementia you may be experiencing something that is hard to put into words.  How can you be feeling this loss when they are still here in front of you?

Ambiguous loss is a type of loss you feel when your loved one with dementia is still physically present with you but is no longer mentally or emotionally as present as they once were.   Coined in the 1970s by Pauline Boss, ambiguous loss initially arose around her research on families with loved ones who had gone missing. With loss from death, you often have the support of loved ones around you.  You may gain comfort from the rituals that happen at the end of life and the closure that comes with them.  Ambiguous loss doesn’t fit neatly into any boxes or steps. 

Watching your loved one decline with dementia you may find yourself feeling overwhelmed by feelings that are difficult to name.  One day you may be filled with hope and optimism because you see a glimpse of who your loved one once was.  The next day you may be filled with a deep sense of despair or anxiety as you watch them lose function. You may be confused or overwhelmed by how responsibilities have changed or guilty that you aren’t feeling the same joy from the relationship.  Accepting all of these feelings, and learning about them allows you to recognize when you may need to seek support for yourself.  These mixed feelings are a very common part of dealing with dementia.  Taking time to talk about them, understand them and seek help can help both you and your loved one immensely. 

What I’ve learned over the years is that most of them continue living a relatively good life with the ambiguity of loss. They do that by holding two opposing ideas in their mind at the same time: My loved one is here and also gone. That way of thinking shakes us loose from thinking with certainty, you know: “You’re either dead or alive.” Well, sometimes we don’t know. — Pauline Block

Those that cope well with the ambiguity are able to hold two opposing ideas at the same time: My loved is here and also gone, observes Block. She notes children are used to not being in charge and thus more accepting of ambiguity compared to adults, who are accustomed to greater agency. However she does also suggest taking action is an important coping mechanism such as working for a cause.

Caring for a loved one with dementia is not easy. Ambiguous loss is not often brought up but it is an element that can add to the burden of care. Identifying it in the vein of name it to tame it can help in the long run.  This checklist from Alzheimer’s Society of Canada is a helpful resource along with a book written by Block specifically on dementia.

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