Grief for Alzheimer's caregivers is unique
My Mom's illness has been like a 'series of small deaths'
12/14/2011 12:00 AM
12/12/2011 3:24 PM
The capabilities of the human heart are both amazing and mysterious to me.
Each day, a healthy heart beats 100,000 times and pumps 2,000 gallons of blood, creating enough energy to drive a truck 20 miles.
This is comparable to driving to the moon and back in a lifetime.
But how can something so strong also be so incredibly vulnerable? I believe the emotional intelligence of the heart, which is the core of our being, is where its greatest power lies.
After three years of caregiving for my mother, Rose, 88, who has Alzheimer's, I acknowledge both the extreme love in my heart I feel for her and the intense grief that I have put in the back seat in order to keep this journey on track.
Now it is time to pull over and therapeutically deal with this looming, heavy energy that infiltrates my soul when it notices an opportune moment.
Grief for Alzheimer's caregivers is unique in that it doesn't subside as it does with other losses.
Instead, there are a series of losses throughout the disease that are deeply felt: the loss of the relationship between the caregiver and the loved one, of social interaction, of closure on relationship issues, of the caregiver's health and routine lifestyle.
Witnessing loved ones lose control of their physical and cognitive functions is heartbreaking.
When my father died many years ago from cancer, I grieved for a year and then it suddenly lifted.
But Mom's Alzheimer's has been like a series of small deaths to me and I realize that with the loss of each skill my best friend is slowly slipping away.
My grief is always magnified during the holidays.
Mom was the glue that held our large family together and now that she is not the matriarch she once was, we no longer uphold our seasonal family traditions.
I miss those joyful, comforting times immensely.
Lyndall Hare has a Ph.D. in Gerontological Studies and works as a professional eldercare coach in Charlotte. She notes the journey into Alzheimer's is harrowing because there is less and less capacity for relating to a loved one on any level other than caregiving.
"It strips away all remnants of the familiar, and one is left with a shell of the person who gave one life and who has been there always. The grief is insidious. It comes and goes. It lessens at times, and then it creeps back in or whacks us in the chest when least expected."
Hare says caregiving for someone with dementia is intensified because the combination of mental and physical decline puts a heavier burden on a caregiver.
"This translates into a different sense of loss because the parent has left before physically leaving. There are often feelings of deep abandonment," she says.
Recently, my friend, Judy Livonious, reached out to me about the grief she is experiencing since her beloved mother passed away a year ago.
Both of us had very close, deep relationships with our mothers. While my unaddressed grief is buried so deep in me that I can't even cry, hers is palpable.
"After my mom died I became depressed and anxious. I had trouble sleeping for several months and even experienced panic attacks and paranoia. I felt physically nauseous and had headaches, heart palpitations and soreness in my chest and back. I lost weight and felt tired all the time. I did a lot of crying and still carry deep sadness, which can arise at inopportune times," she says.
The grief that I have about my mother has been compounded with the loss of three dear friends in the past year.
Judy has also suffered many significant losses over the years and says, "The longer we live on this earth, the more important it is to embrace the grieving process and find a way to be mindful and patient with our broken hearts."
Judy, who describes grief as an "unmanageable guest" who drops in when you're not expecting it, has asked me to explore with her possibilities for processing our bereavement.
At this point in my journey I welcome this invitation, knowing it is the healthiest thing I can do for myself.
United in our circumstances and the quest to find the gifts in it, Judy and I have joined a support group at The Respite: A Centre for Grief & Hope that offers tools, information and a safe place for those experiencing grief.
I look forward to exploring the boundaries of my heart and to weeping for the gradual loss of my mother as I treasure the precious time I have left with her.
Mom would want me to be fully human and as happy as I can be right now.
And I know this with every beat of my wise and powerful heart.
Editor's note: In Lisa Moore's column, "Generations," she writes about the challenges and healing she experiences as a member of the Sandwich Generation: those caring for a parent and a child.
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