The Trials and Tribulations of LBD

Vickie met her husband, Paul, the first day of college in 1972. A woman was playing the piano in the campus cafeteria. Vickie caught Paul’s eye and he approached her for a date. It was love at first sight. Their budding relationship bloomed with Paul and Vickie singing a duet to the piano music. A year later, they were engaged. Their connection through music grew into the couple leading choir at their church.
 
They lived a rewarding life together. Sunday dinners with Paul’s mother and their connection through laughter were just a few reasons why their lives were blessed.
 
Between 2012 and 2013, Vickie noticed a change in Paul. His memory was slipping, but she recalls he would forget important birthdays as early as the mid-90’s. She just assumed he was disconnected in some way. In 2013, he couldn’t find his way around his office and would call her for directions on where to find things. During this time, he became less attentive while driving and would often run off the road or through red lights.
 
Over the next couple of years, his cognition deteriorated at a progressive rate. Vickie decided it was necessary for him to seek medical attention. She took him to a psychologist to be tested and he was diagnosed with Alzheimer’s disease. Later, he started exhibiting aggressive behavior in his sleep and was finally diagnosed with Lewy body dementia in 2017.
 
Once he was diagnosed with LBD, Vickie began researching the disease. She noticed Paul had many of the symptoms, including hallucinations and fluctuating levels of dementia. She quickly realized she needed help and reached out to her son in Dallas, Texas. Paul’s condition eventually forced her to place him into an assisted living facility near her son.
 
Soon after being placed in assisted living, Paul became aggressive with staff and other residents. He was moved into a hospital to address the aggression. He was then prescribed an antipsychotic that nearly caused him to go into a coma. Vickie knew he needed specialized treatment and decided he should be placed in a dementia care facility that could properly treat and care for Paul. She found him a facility that was close to her home.
 
Even though Vickie worked as a registered nurse most of her career, she realized it was necessary for him to be in the care of professionals. The decision to place Paul in an dementia care facility caused tension in Vickie’s family. Often, those that do not experience the day-to-day struggles care partners face cannot comprehend the pressure it puts on the care provider.
 
Occasionally, she would take her husband out of the care unit for a few hours to do activities with him; however, the progression of LBD eventually forced her to stop doing this. He digressed to a near non-verbal state, and he was still experiencing hallucinations and delusions.
 
Vickie considered herself lucky. She was able to briefly connect with Paul through laughter and music. Though he did not speak, she knew he enjoyed her jokes. She’d draw him out of Lewy with music. She would sing hymns and he’d light up and join in.
 
His passing in December has left Vickie and her family grieving their loss, but he will remain in their hearts and memories.
 
Vickie’s advice to care partners is to seek help and guidance from those that have lived experiences with dementia, be it through a support group or developing relationships with those that have worked with dementia. She advises that care partners find the humor of it all—even the ridiculousness of the disease.
 
She urges care partners to know the signs of burnout before it is too late. Burnout can stress caregivers to the point that it negatively impacts their health, as it did with her. Sometimes the strength isn’t being able to always care for the person with LBD, but to recognize when it is time to seek professional assistance.