Not long ago, I was listening to a podcast when this phrase, ambiguous loss, came up. I’d heard it before but had forgotten that such a predicament had been identified and given a name. Now here I am, six years into caring for my husband with vascular dementia, still struggling with the same ambiguity and loss.
For those unfamiliar with the term, “ambiguous loss” first appeared in the work of psychologist Dr. Pauline Boss. “Ambiguous loss can freeze the grief process.” says Dr. Boss, “People can’t get over it, they can’t move forward, they’re frozen in place.” ( https://www.wellandgood.com/how-to-deal-with-ambiguous-loss/)
Boss first studied families whose members were pilots missing in action during the 1970s Vietnam War. Ambiguous grief could occur when a family member was physically absent but psychologically present, in cases of military MIAs, divorce, desertion, or miscarriage.
The same ambiguous loss may occur when the member is physically present, but psychologically absent, as with chronic mental illness, dementia, traumatic brain injury, or addiction.
These days, my husband is unrecognizable as the man I met eighteen years ago. I try to recall his personality, his presence, and way of being in the world from that time, and I can’t form a clear picture. He is present in body, slower but still healthy for his seventy-four years. Except he needs so much guidance, so much supervision, so much of my mental energy.
I have passed through many emotions in six years. For a long time, I was enraged. My imagined future, the travels, the freedom of movement, the solitude so necessary for an introvert like myself, evaporated like a puddle after rain. I grieved for those losses, too, and the companion I no longer had.
Only recently, I realized that there were some bright sparks in this life his illness has imposed on me. I can work on my creative projects with little interference. I’ve established a daily routine that works for me, making only two meals for us each day. We have our regular activities with friends. Despite the burdens, these adaptations lighten my load.
Boss recommends ways to cope with ambiguous loss. I’ve done all of them.
Here they are:
Five tips for coping with ambiguous loss:
Give a name to what you’re experiencing
Find a therapist
Join a support group
Celebrate what remains
Discover new hope for the future
Are you a caregiver? Have you any additional tips for those of us dealing with ambiguous loss? Send me a comment.
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In the pantheon of Hindu gods, Hanuman is the deity with a monkey body. He is the devoted servant of Ram (Rama), an incarnation of Vishnu. Vishnu (if you’re following this) is one of the main deities of Hinduism. As part of the Hindu trinity (Trimurti), Vishnu is the Preserver, Brahma being the Creator, and Shiva, the Destroyer. Rama, as Ramachandra, is the seventh incarnation of Vishnu, the embodiment of chivalry and virtue. And Hanuman is Rama’s servant.
Why am I writing about Hanuman? In the legends that recount Rama’s heroic adventures, Hanuman plays a significant role. His devotion and service to his lord is unwavering. In a peculiar way, Hanuman serves as a model for me in my daily struggles to care for one man with dementia, my husband of almost eighteen years.
Perhaps Hanuman’s most famous heroics appear in the Ramayana, an epic tale of good versus evil. The demon Ravana kidnaps Sita, Rama’s wife. Hanuman discovers where Ravana has hidden Sita and tells Rama. In the ensuing battle between Rama and Ravana, Hanuman destroys several demons and then brings Rama’s brother back to life. Hanuman is the ultimate devotee, willing to risk everything to serve Rama.
I am no Hanuman. Surely the monkey god never gripes about his situation. We never hear him say, “This is not the life I would have chosen,” or “When do I get some me time?” or “I need a break!” Unlike me, Hanuman never complains. He probably never has a bad day.
He is, however, someone to emulate.
In the morning, while I do yoga, I like to listen to Krishna Das’s album Flow of Grace. This is a collection of six versions of the Hanuman Chalisa, a devotional chant to Hanuman. Here’s one to listen to:
Sometimes caregiving for a person with dementia becomes so difficult and absurd that the only possible response is— laugh.
Yesterday, I was cleaning out files. The box of paper to be recycled was overflowing. My husband wandered upstairs to check in.
“Can I do anything to help you?” he asked, as he often does. (I am blessed with a sweet-tempered, cooperative demented person, not like some caregivers who deal with belligerence.)
“Well, yes,” I answered. “I need a large garbage bag for these papers.”
“Where are the bags?” he asked. (Are you paying attention? Most spouses would know where to find the garbage bags.)
I told him, “In the cabinet to the left of the sink. They’re in a box under the medium sized bags.” I illustrated the size spreading my arms. “About this big.”
He turned to go on his errand. Stopped. “What am I getting?”
“A large garbage bag.”
“Where are they?”
I told him again. (By this time, I’m already thinking I should go get the bag myself. But he wants so badly to be helpful.)
He made little grunts as he went downstairs–his arthritic knees complaining.
He was gone a while. I moved on to thinning out the notes pinned to my bulletin board.
He came back holding—
three packages of snacks!!
Chip Ahoys. Cheddar rice cakes. Fig Newtons.
“Is this what you wanted?” he asked.
I looked at the snacks. I looked at his face. This dear man, who tries so hard, who vehemently denies his condition. (“I don’t believe it,” he says.)
What could I do? I laughed and hugged him hard and long.
Then I took the snacks and went downstairs to get the garbage bag.
Caregiving is challenging. That’s why I value my caregiver group. We Zoom twice a month. These are the women who understand. Who often can offer resources to assist with a problem.