Loss and grief are part of caring for someone with Alzheimer’s

By Carmen Costantino
November 11, 2011

 

With trepidation, I enter the long-term care facility.

Bounding up a flight a stairs, I pause before opening the door to the second floor.

The pause is two-fold. I need to search my memory bank for the code to enter the special care unit and secondly, to take a deep breath as I prepare myself emotionally for what’s coming next.

Entering the room, I scan the sea of faces and the Geri-chairs. All of a sudden, I hear a familiar voice.

“I know you!” I walk towards the voice, holding back my tears and give my grandmother the biggest grin I can muster. She starts clapping her hands excitedly and repeats, “I know you and you know me!”

“Hi Nana. It’s Wendy, your granddaughter.”

She opens her arms and she takes me in for a hug.

“Where are you?” she asks. I know what she really means is where do I live now. Well into the advanced stages of Alzheimer’s disease, she isn’t able to always find the right words to express herself.

“I live in British Columbia. I go to school there. Your brother, Harvey sends his love.

She smiles, claps and says again, “I know you and you know me!”

As our visit comes to a close, and it’s hard saying goodbye knowing this may be the last visit I have with my Nana.

Images of the vibrant, articulate and elegant woman who once modelled for Eaton’s in the 1940s cloud my thoughts. Sadness creeps in as I reminiscence about our special relationship, her love of quotations, her beautiful penmanship and her fondness for all of her grandchildren.

Anticipatory grief is described by Therese A. Rando as “the reaction and response to all losses encountered in the past, present, or future of a life-threatening illness.”

Loss and grief are part of the daily experience of those caring for loved ones with Alzheimer’s disease or other dementias.

Caregivers experience a continuous and profound sense of loss and grief, one that intensifies as their loved one’s symptoms increase. For many, the loss of their love one’s identity is overwhelming.

My mother, who cared for my grandmother, best described it. “I go and see my mom everyday, but on most days, all I see is her shell. My real mother is gone, and she’s never coming back.”

Children grieve the loss of their parent, and spouses grieve the loss of their marriage. Other caregivers experience losses in their everyday lives — a decrease in social and leisure activities, a change in work and family roles and losses in their personal relationships.

As the dementia progresses, some caregivers feel as though they’ve entered a chronic state of grief and depression or are affected by a decline in their own health status.

When life comes to an end for the individual with dementia, 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. Those who cared for a spouse or parent may experience guilt and sadness believing they should have said or done more.

My own grandmother’s death was a mix of emotions — sadness, relief, and the finality of life.

She was my last grandparent to die. Her death coincided with the cycle of life, as my daughter was born a few weeks later.

I think my Nana decided it was time to head up to the theatre’s balcony. She always loved having the best seat in the house, especially when the play featured the debut of one her precious great-grandchildren.

• • •

I am pleased to feature Steve Hill, pastor at St. Joseph’s General Hospital, as my next contributor. He’ll be joining us to share his knowledge and experience on strategies for coping with grief.

Wendy Johnstone is a gerontologist and is the founder of Keystone Eldercare Planning. Her column runs in the Comox Valley Record every second Friday.

Helpful Videos

Watch for the Signs

Caregiver Consultations: How We Help Frail Elderly Parents

Long Distance Caregiving

“You are amazing! What I tried to do in 2 months, you did in 1 week. You’ve helped us navigate the system, made sense of Mom’s disease, and gave back her independence and control. Thank you for making such a difference in Mom’s life and giving us, her family, complete peace of mind.”

– Mike G., Nanaimo, BC

READ MORE TESTIMONIALS   |   READ BOOK REVIEWS