This Lewy body dementia story was written by Donna Pittman and describes her family’s personal experience with her father, Coy. Every person’s experience with Lewy body dementia is different. Medical information surrounding Donna’s original story has been updated to reflect current guidance from US health authorities.
Our Lewy Body Dementia Story Began With a Misdiagnosis
My family’s Lewy body dementia story began with a misdiagnosis.
My father was diagnosed with Alzheimer’s disease in 2013 after a long heart-valve surgery. He spent an extended time under anesthesia and then had to undergo anesthesia again a few days later to resolve the first of many complications.
My mother and I noticed that the man who left the hospital and rehabilitation center almost 30 days later was not the same man who had entered the hospital.
Early Signs of Lewy Body Dementia
One of the first signs that my father’s brain was not well was that he lost the ability to balance his checkbook.
He had always been meticulous about balancing it down to the last cent.
At that point, my mother took him for testing with his primary care physician. He was diagnosed as being in the early stages of Alzheimer’s disease.
As the years passed, however, some of his symptoms simply did not fit the Alzheimer’s profile.
Misdiagnosis can occur with Lewy body dementia because symptoms may overlap with Alzheimer’s disease, Parkinson’s disease and some psychiatric conditions.
The Lewy Body Dementia Association describes LBD as the second most common form of neurodegenerative dementia after Alzheimer’s disease and estimates that it affects approximately 1.4 million Americans.
The National Institute on Aging explains that diagnosing LBD can be challenging because its early symptoms can resemble other brain disorders.
There is no single brain scan or medical test that can definitively diagnose LBD during life. Doctors instead use medical history, symptoms, physical and neurological examinations, cognitive testing and other investigations to reach a diagnosis.
You can read more about finding an appropriate Lewy body dementia specialist here.
5 Lewy Body Dementia Symptoms My Father Had
Eventually, several characteristic Lewy body dementia symptoms helped point us toward the correct diagnosis.
These were five of the most noticeable symptoms my father experienced:
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Fluctuating confusion and concentration.
On certain days, my father appeared to be fine cognitively. He held conversations, worked around the house and completed tasks much as he normally would have.
On other days, he would forget how to drive home from the grocery store or operate the microwave.
These changes could be dramatic.
Fluctuations in attention, alertness and thinking are now recognized as a common feature of Lewy body dementia.
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Severe sleep disturbances.
My father would act out his dreams, sometimes violently.
He also experienced extreme daytime drowsiness. Some days, he would sleep for a total of 18 to 20 hours during a 24-hour period.
REM sleep behavior disorder, in which a person physically acts out dreams, is strongly associated with LBD and can sometimes begin years before other symptoms.
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Changes in movement.
He developed hand tremors and began to shuffle instead of walking normally.
His balance became impaired, and he suffered several falls. At around 230 pounds, picking him up after a fall was nearly impossible.
Movement symptoms associated with LBD can include stiffness, slowed movement, tremor, balance problems, a shuffling walk and falls.
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Visual and auditory hallucinations.
This became our biggest clue.
My father would think he saw children playing on the floor or a group of women talking in another room.
He also heard people having conversations when no one was there.
Eventually, he began to believe his home was haunted and became fearful.
Detailed visual hallucinations are particularly characteristic of Lewy body dementia. Auditory hallucinations can also occur.
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Changes in behavior and episodes of aggression.
My father began having violent outbursts toward others.
He kicked and hit my mother as well as nurses, doctors and a hospital security guard.
During periods when his behavior became extremely volatile, we took him to the nearest emergency room for help.
Behavioral symptoms vary considerably between people with LBD. Agitation, anxiety, delusions and other behavioral changes can occur, although not everyone with LBD experiences aggression.
Wandering and Lewy Body Dementia
Finally, in the summer of 2019, my father began wandering.
Several times, my mother woke during the night and discovered that he was missing.
She would drive through their small town searching for him, sometimes for hours, before eventually locating him.
The wandering, combined with his other symptoms, made her realize that she could no longer keep him safe at home.
In early October, my father spent a week in a geriatric psychiatric hospital, where doctors tentatively diagnosed him with Lewy body dementia.
Several medications were changed.
Lewy Body Dementia and Sensitivity to Medications
Medication became an important part of our father’s story.
Some of the antipsychotic medications he had been taking appeared to make his symptoms worse.
This is an especially important issue with Lewy body dementia.
The National Institute on Aging advises that antipsychotic medications must be used cautiously in people with LBD because some can cause serious side effects and worsen movement symptoms.
Medication decisions should always be made with a physician who understands the person’s medical history and Lewy body dementia.
After his stay in the geriatric psychiatric hospital, my father moved into a dementia-care facility.
Our Difficult Experience With a Dementia-Care Facility
We thought we were making the best decision.
Unfortunately, the dementia-care facility was understaffed, poorly run and did not seem to understand how to care for someone with LBD, particularly a large man who could sometimes become aggressive.
The four months he spent there were a nightmare for our family.
We were frequently called because staff could not manage his behavior.
Twice, he was sent by ambulance alone to the local emergency room.
By that point, he could not remember his current address or phone number. He could tell staff only his name and birth date.
We were appalled at some of the care he received.
During one visit, we discovered that his incontinence brief had a date and time written on it from 22 hours earlier. He had apparently been wearing the same soiled incontinence brief for almost 24 hours.
His behavioral difficulties continued to escalate.
After he choked a female nursing assistant one evening, he was sent for another stay at a different geriatric psychiatric hospital.
There, he became so heavily medicated that he could barely lift his head.
My father didn’t seem to recognize his family or understand his surroundings. He was propped up in a wheelchair during the day but struggled even to open his eyes during our visits.
Eventually, he was allowed to return to the dementia-care facility.
Although weak and heavily medicated, he was no longer violent.
At this point, my father was placed under hospice care.
That was when a wonderful hospice nurse named Robin entered our lives.
The Difference One Hospice Nurse Made
I cannot say enough about the difference Robin made.
She became a fierce advocate for my father with the facility staff.
She treated him as though he were her own father.
Eventually, she advised us to get him out of his current living situation.
COVID-19 and Finding Better Dementia Care
In February 2020, just before COVID-19 changed life across the United States, we found another assisted-living facility with a locked dementia-care wing.
He was much happier there and received better care.
In March, the facility closed its doors to visitors.
This was devastating for our family.
Fortunately, Nurse Robin continued to help us remain connected. She texted pictures to us, arranged FaceTime calls and helped us maintain contact with my father when we couldn’t visit him ourselves.
The Final Stage of Our Lewy Body Dementia Story
On May 6, we received the call we had been expecting for quite some time.
Robin believed that the end was near.
Despite the COVID-19 restrictions, the assisted-living facility allowed us to be with my father in his private room until he died.
My mother rushed to the facility.
She found my father emaciated. He had stopped eating and drinking during the previous week and was agitated.
She tried to calm him for hours.
Eventually, he fell into a deep sleep.
He was still sleeping when I arrived from out of town.
For the next three hours, my mother and I sat beside him.
I will never forget the sound of his breathing or counting the seconds between each breath until the next one didn’t come.
Even though the last months of his life had been filled with turmoil, he died peacefully around midnight.
There was no struggle and no dramatic exit.
For my mother and me, it was a moment of both sadness and relief.
What Our Family Learned From Lewy Body Dementia
Looking back, many of the symptoms that confused us at the time are now recognized features of Lewy body dementia.
The fluctuating cognition, severe sleep disturbances, movement problems and hallucinations were all important pieces of the puzzle.
Our experience also taught us how important it is for families to find healthcare professionals and care facilities that understand the unique challenges associated with LBD.
Every family’s experience will be different.
For current information about symptoms, diagnosis and care, visit the National Institute on Aging’s Lewy body dementia resources or the Lewy Body Dementia Association.
Author Bio
Donna Pittman is a writer and community-college professor from Tennessee.
