Acknowledge Your (Ambiguous) Grief

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You are probably aware of Dr. Elizabeth Kübler-Ross’s five stages of grief: denial, anger, bargaining, depression, and acceptance. Designed to describe what a person diagnosed with a terminal illness may experience, we now also use them in relation to friends and family of the affected love one, as well as other losses such as illness, divorce, and job loss.

Dr. Kübler-Ross did not intend to suggest that a person moves through these stages one at a time. More often, they each make an appearance sporadically, and sometimes together.

I wish grief was a clear-cut, linear process that led straight to acceptance on a set timeline.

But, no. If you are a human being reading this, you probably already know this to be true. Like most of life, grief is complicated. Throw Alzheimer’s disease or another dementia into the mix, and grief really gets complicated.

I began grieving as soon as I became aware that something was wrong with Harvey’s cognition. It meant our life together was going to be dramatically changed. If my gut was right, and the diagnosis I feared most, younger-onset Alzheimer’s disease, was correct, I was going to be in for a world of pain and grief for many years.

I grieved for the loss of our future plans. I grieved for the losses that our daughters would carry. I grieved most for Harvey’s loss of identity as a physician, and what his world would look like in the future.

And I experienced every one of Dr. Kübler-Ross’s stages during Harvey’s time with dementia.

Denial: “Maybe it’s not as bad as I imagine it. Maybe it was just an ordinary slip.”

Anger: “Why is this happening to us?!?!!! It’s not fair! He did everything right!”

Bargaining: “Please don’t let this disease be hereditary! Let it be me instead of our daughters.”

Depression: “I just can’t do it anymore. I give up.”

Acceptance: “Alright. I am strong. We can get through this, relying on my love for Harvey and our daughters. I will do whatever I need to do to keep him safe and content.”

I could cycle through all these thoughts in a single day.

I recently learned about a book by David Kessler, Finding Meaning, thanks to my Aunt Sheryl. Mr. Kessler, a grief expert, worked closely with Dr. Kübler-Ross for years, and actually co-authored two books with her. In this 2019 book, he adds a sixth stage of grief, finding meaning. His treasure-trove of a website is here.

When you can remember a loved one who has died with more love than sadness, you are on this path. More than acceptance, you are at a place when you can honor their lives. It doesn’t have to be a grand gesture; everyone’s approach to finding meaning will be uniquely theirs.

There are other forms of grief that I have found to be apt descriptors of how caregivers of persons living with dementia may feel. Anticipatory grief describes the sense of knowing that death will be the ultimate end for someone diagnosed with a terminal illness. You know it’s coming. In the case of Alzheimer’s disease and other dementias, that time period can be excruciatingly long.

Ambiguous loss is a term used to describe the loss that comes when the loved one is missing, physically or psychologically. With dementia, care partners witness first-hand this type of loss, as their loved ones gradually change from the person they were. The gift and challenge comes in recognizing the God-spark still inside, and loving them through to the end. This podcast with Pauline Boss, who coined the term ambiguous loss, is incredibly touching.

If you have a loved one with dementia, you are experiencing some type of grief. Acknowledge it. Honor it. Love yourself and your loved one through it.