When I was in my 30s, my grandmother died. Her last five years were punctuated by the effects of dementia, including a move into long-term care.
Thirty-six weeks pregnant, I was unable to make the trip back east for her funeral. Her death was a mix of emotions — sadness, relief, and the finality of life tempered by awareness that new life was days away. I remember grieving most when her dementia made it difficult for her to remember who we were and who she was. To this day, our last visit replays in my mind like it was yesterday.
I enter the room of her long-term care facility (pre-COVID times), scanning the sea of faces looking for her. Suddenly, I hear a familiar voice, “I know you! I know you!” I turn, hold back tears, and give my grandmother the biggest grin possible. She starts clapping her hands excitedly and repeats, “I know you and you know me!”
“That’s right, Nana! I’m your granddaughter, Wendy.”
She opens her arms and takes me in for a hug.
“Where are you?” she asks. I think she is trying to ask where I live now. Well into the advanced stages of dementia, she isn’t always able to find the right words to express herself, but her rhythm in conversation doesn’t waiver.
“I live in British Columbia,” I say. “I go to school there. Your brother, Harvey, sends his love.”
She smiles, claps, and says, “Baby brother. I know you and you know me!”
It’s hard saying good-bye to her, knowing I will be on a plane back to BC the next day. Images of the vibrant, articulate, and elegant woman who once modeled for Eaton’s in the 1940s cloud my thoughts. Sadness creeps in, but I try to remind myself of the joy shared during the visit. Even if it’s just for that moment.
Anticipatory mourning (or grief) is described by Therese A. Rando as the process in which we begin to mourn past, present, and future losses.
Caregivers and families don’t always recognize the loss or give themselves permission to grieve the loss of someone living with dementia while they are still alive. Families are faced with the gradual loss of the person they are caring for and the person living with dementia can experience fear of loss of self and grieving their own changes in memory, independence and their relationships.
Caregivers often experience a continuous and profound sense of loss and grief, one that intensifies as the care recipient’s symptoms increase. For many, the loss of their loved one’s identity can be overwhelming. Adult children grieve the loss of their parent, and spouses cope with the loss of their marriage and friendship.
When death does occur, many caregivers describe the loss as liberating or express sheer relief at the end of suffering. Yet, for others, the loss of their caregiving role leaves a big hole. Many express a lack of focus or an inability to find meaning in the here and now.
Caring for someone with a chronic or life-threatening illness often leaves us with a “mixed bag” of feelings. There is no right or wrong way to mourn or process anticipatory grief. Finding support with a trusted source or a support group is helpful to process information, to be heard, and to validate your feelings. If you need support to help you through anticipatory grieving, FCBC can help. Reach out today.
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Wendy Johnstone is a Gerontologist and a consultant with Family Caregivers of British Columbia in Victoria, BC.