Breaking through the cobwebs of dementia

(Althea Halchuck is a Board-Certified Patient Advocate (BCPA) with over 20 years of experience advocating for the vulnerable and dying. She started  Ending Well! Patient Advocacy to assist those at the end of their lives, offering support – including end-of-life counseling, advance care planning, legacy creation, and doula/vigil services. Her trademark is “Death Maven.” This article, used with permission, was first published on KevinMD.)

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“Some memories are unforgettable, remaining ever vivid and heartwarming!” – Joseph B. Wirthlin

I love my role as a hospice volunteer mostly because I enjoy meeting the patients and hearing their life stories. I heard a tale from the Vietnam vet who won the Congressional Medal of Honor, which he humbly said was for “just driving a jeep.” (He later admitted that he saved a general by “just driving a jeep” through enemy lines.)

Another was an elderly woman who had been a famous Greek dancer. She had performed all over the world and still had beautiful costumes and photos to prove it. Even as she lay dying, her eyes lit up as she described her long-ago adventures.

I’ve been a hospice volunteer for 20 years and have heard many such stories. To me, sitting vigil with these dying strangers is an honor, and I am always fascinated and engaged in their final journey. Everyone has a story to tell if we take the time to listen.

With dementia patients, however, there are no shared stories because their memories are trapped in the cobwebs that have grown inside their brains.

In survey after survey, dementia is named as the most feared disease among respondents. Anyone who has watched a loved one suffer, or who has been diagnosed and is on the downward spiral from which there is no cure, can attest to that fear and dread. Typically, I ask that I not be assigned a dementia patient because interacting with them is often frustrating and, frankly, can be depressing. Quite the opposite for my other patients, most of whom do not have this limitation, and we can easily walk down Memory Lane and explore their stories. However, one day I experienced a breakthrough with a dementia patient that will forever stay with me.

I was assigned to a Catholic Alzheimer’s patient who was living nearby, and her family just wanted someone to read her the Bible and maybe “pray the rosary.” I thought I could do that, but confession here, no pun intended: I am a lapsed Catholic, and although I am a Christian and study the Bible regularly, praying the rosary was not something I had done for over a half-century. Even then, it was hit or miss. My old friend, “Father Google,” helped me with the process, and I printed the prayers (50+ Hail Marys, some Our Fathers, and a few other meditations) and their order, listed on a page I could follow.

I have a beautiful set of crystal rosary beads that my favorite uncle, Joe, gave me many years ago that belonged to his deceased wife. In a touch of irony, this uncle died of Alzheimer’s in the mid-1980s, my first experience with this dreaded disease. Uncle Joe went from being the sweetest, kindest, and most gentle man to being frustrated and aggressive, lashing out at those closest to him. His decline was heartbreaking for all who knew and loved him.

When I arrived, my patient was non-verbal and skeleton-thin and looked peacefully asleep, almost comatose. I pulled up a chair beside her bed, took out my beads and Google cheat sheet, and whispered why I was there. No response. I held the beads over her bed and began the prayers. No response.

As I moved along each set or decade of prayers (as they are called), her eyes fluttered open. I continued with the prayers, and suddenly, her mouth started moving; there was no sound, just recognition of the prayers and her silently mouthing along. She was a devout Catholic who probably said these since first grade; they were embedded in her memory.

At one point, about halfway through, she reached for the end of the beads and firmly held on. When I finished, she seemed to be asleep again. As I stood up to say goodbye, she grabbed my arm and kissed my hand. What a wonderful gift, both the kiss and her joining me in praying the rosary. The lesson for me was that even people with Alzheimer’s have a story to tell.

Cellular memory theory

Something to consider, though, is that many scientists agree that memory can live in the heart as well as the brain.

“Cellular memory theory states the brain is not the only organ that stores memories or personality traits; that memory can form and be stored in organs such as the heart,” T. Avery reported in Hub Pages. “Claire Sylvia received a heart and lung transplant in the 1970s from an 18-year-old male donor. None of this information was known to Sylvia, who, upon waking up, claimed she had a new and intense craving for beer, chicken nuggets, and green peppers, all foods she didn’t enjoy prior to the surgery. A change in food preferences is probably the most noted in heart transplant patients.”

It sounds like the stuff of science fiction, but wherever memories reside, some can be recalled by an old song, a favorite smell, or an ancient prayer. For my patient, the way through her maze was praying the rosary; for another, it was playing Broadway show tunes from her youth and both of us singing along; for another, it was me reading cards with memory questions that cast my patient back to when she was married to a country singer who performed at the Grand Ole Opry and smiling at the recollection.

Many memories are created through heart-based events, so it’s possible that dementia patients may have a repository of memories that reside inside their hearts. We will never know. It is for us to provide the trigger to bring the memories out and provide someone with a bit of pleasure at the recall.

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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.

Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.