By Alan Wolfelt, PhD
In her younger days, Virgene Wolfelt was a very vital woman. She was a water-safety instructor trainer, a Cub Scout leader, and a mother of three busy children. You never had to guess about what was on her mind, because she would tell you-even if you didn’t want to know it.
She was also a devoted wife to my father, who died four months after we celebrated their 50th wedding anniversary. For the next two years, Mom continued to function independently. She drove her car around town, bought her own groceries, and interacted with her many grandchildren. She lived at home by herself on five acres and was able to keep up with the demands of caring for herself and her home.
But then the changes started and never stopped. Poor judgment began to set in. She ordered a bicycle over the phone and crashed it the first time out. She began misplacing things and would become disoriented to time and place. She expressed a loss of initiative, often replying to our invitations, “I’ll just stay home.” She seemed to be aware that she was losing her mental capabilities, and she grew more quiet and withdrawn.
This is when I began to realize I would lose my mother twice-once to dementia and eventually to death.
I have to give Mom credit. While some people vigorously resist giving up their independence, Mom realized she could no longer live alone. She needed someone to help her remember to eat her meals and take her medications. I remember feeling so relieved that she was in a more structured environment and was safe and being cared for. I lived in Colorado, and she lived in Indiana. The distance never felt farther away.
As her dementia progressed, her personal care and grooming declined. She would often wear the same clothes each day and resisted changing into pajamas when it was time for bed. She didn’t want to bathe or brush her teeth. Of course, she no longer had the capacity to manage her finances and make the simple decisions that before had come to her so easily.
At this point, Mom needed an even more structured care setting, so another move became necessary. And with that move came more changes, more losses, and more need for me to mourn the loss of my Mom as I once knew her. The smaller living space meant she had to give up more of her family’s possessions, but she didn’t seem to care. The photos, furniture, and other tangible symbols of my growing-up years were placed in storage.
As her dementia progressed, I watched Mom slip far away. She spent most of her time lying in bed. She needed constant care and had no desire to interact with the world around her. She lost track of who had visited her and when. One day after spending time with her, my brother called me and said that Mom wanted to know why it had been so long since I’d visited. Yet I had just been there, and my heart was broken to realize how far gone she was-from me and from all of us who loved her.
When she died on October 19, 2010, I was sad, but I was also relieved. She had lost her quality of life, and now I found peace in believing she had re-joined my father, the man she met on a school playground at the age of 14.
Yes, when someone we love has dementia, we grieve and we grieve and we grieve. We grieve the diagnosis, we grieve the many big and little losses along the way, and one day we grieve the death. Yes, we mourn twice!
Editors Note: The Center for Loss and Life Transitions bookstore can be found by CLICKING HERE. Within the bookstore is The Dementia Care-Partner’s Workbook: A Guide for Understanding, Education, and Hope at THIS LINK.
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