Magic Moments: Story #9
There have been many magic moments and happy times with a loving spouse for over fifty-four years. Unions like ours take more than love to hold them together. Indeed, sticking together is a miracle of sorts considering the challenges couples face. With no loss of love, our magic is beginning to slip away.
Our new difficulty is dementia. As a full-time caregiver, I have witnessed firsthand how my spouse’s Alzheimer’s disease has created stresses upon our marriage for which we were not prepared. The physical and emotional toll is unimaginable. Although I still know her, she is confused as she sometimes views me as a stranger, making our closeness suffer. Adding to our problems is the inability to communicate after aphasia took over her speech. Dementia is destroying the vibrant and productive lives we once enjoyed together because she is now in her own world. Further, her physical presence makes it difficult to accept our new reality. At times, it feels like she has passed. Thus, unresolved grief and feelings of hopelessness create a sense of desperation. For those reasons, plus an additional diagnosis of cancer, our family felt the time had come to place her in professional care.
In the early stages, we educated ourselves by reading many books, attending support groups, seminars and classes. A most beneficial book for me was Loving Someone Who Has Dementia written by Pauline Boss, Ph.D., Professor Emeritus at the University of Minnesota. No other book educated me about dementia like this one. I proudly showed friends my yellow-paged book from highlighting! Boss introduced a treasure trove of concepts that immeasurably helped put my life back on track including “ambiguous loss,” “complicated grief,” “delicious ambiguity,” “the myth of closure,” and “the good enough relationship.” Good enough would normally be unthinkable. But, this simple concept alone helped me do my best in a relationship that would never be the same again.
Joy and happiness are always within my grasp.
Dr. Boss also suggested a “psychological family” when one’s biological family doesn’t exist, lives too far away or is not helpful. She writes, “My recommendations: find people to be with whom support you; minimize contact with those who don’t and don’t feel guilty.” Another coping strategy was for caregivers to broaden their identities to reduce chronic stress. She asks, “Who are you now that dementia has entered your relationship? Are you someone’s child if your parent can’t remember your name? Are you still married if your spouse no longer knows you?” She advises, “The goal is to revise your identity to fit the ambiguity.” These gems of wisdom continue to work for me.
I can attest that caregivers neglect themselves. As a result, mortality is high. This book taught me ways to take personal responsibility for my own health. Thus, feelings of isolation and sadness were alleviated by trying to live normally. Remaining socially engaged within a network of friends, maintaining family rituals and pursuing personal interests kept my spirits up. Two ladies from support groups and one from church came regularly to give me respite. They were lifesavers.
As time goes on, I see light at the end of the tunnel. It’s difficult now to imagine the future but I am optimistic that magic will come in other ways no matter what happens. Joy and happiness are always within my grasp. It’s a seeker’s world. Indeed, a positive attitude is a faithful friend that will never let you down.
Boss, Pauline, Ph.D., Loving Someone Who Has Dementia. San Francisco: Jossey-Bass, 2011.
© 2023 Gerald Lloyd Wood. This story and accompanying art are used with permission of the author, Gerald Lloyd Wood.
