Ellen and Randy’s Story
Randolph “Randy” Cook is 70 years old and was a care partner to his wife Ellen. She began displaying symptoms of Lewy body dementia (LBD) in 2016. Later that year, she was diagnosed with probable LBD.
The initial symptoms Ellen experienced included disorientation and inability to focus at work. She was walking around her office and wasn’t sure what to do or how to perform the normal functions of her job. Her employer was part of a healthcare system in New Jersey. They were able to conduct testing and determined that there were neurological issues present. It was just six months later that she would receive a diagnosis of LBD.
The diagnosis process entailed going to a neurologist over the course of six months for testing, and it was not until they sought a second opinion from a physician in the same practice that they were able to obtain the diagnosis.
Randy was dedicated to Ellen’s wellbeing. He managed her doctors’ appointments, at-home care, and the administrative process of obtaining long-term disability – he described seeking long-term disability as “an arduous process” forcing him to jump through hoops. He moved closer to his stepdaughter in Pennsylvania so she would have more time with Ellen.
Ellen’s symptoms continued to decline. She developed parkinsonism and gait issues that caused her to shuffle when walking. Her cognitive abilities also declined further. In October 2019, both Ellen and Randy recognized that the progression of the disease was becoming too much for him to manage alone. At-home assistance was called in before it was determined that Ellen would be better cared for in an assisted living facility. She passed in April of 2020.
Though Randy’s journey with LBD was devastating, he found a way to turn his experience into something powerful. He now volunteers as an LBDA Lewy Buddy supporting husbands of those living with LBD.
He would like to leave those on their own LBD journey with some insights from his own experience. One of his greatest resources was his wife’s neuropsychiatrist – the doctor monitored her medications and met with her semi-monthly. The neuropsychiatrist provided Randy and Ellen with advice on what to do in certain situations and as issues arose.
Randy also relied on the LBDA website for information on the progression of the disease. It prepared him for what the future held and the potential issues that might developed as LBD progressed.
Finally, Randy suggests care partners seek help and have patience with those living with LBD. Do not be afraid to reach out to a family member or friend for assistance – even if it’s just coming over to the house for half an hour while you go for a walk.
October 10, 2021