Love is Greater Than Lewy

When you make a commitment to someone, you never envision hurdles or heartbreak along the way. This was the case with the Fowlers. Kathy Fowler is a full-time caregiver to her husband, Philip. Their story toward the road to diagnosis is all too common, but their love for one another has proven unbreakable.

Their lives took an unexpected turn when Philip started exhibiting significant behavioral changes. Philip had become a different person; he found himself performing routine activities with increased agitation. Daily tasks started to become especially challenging and burdensome. By nature, Philip was always a fun-loving, kindhearted person, so these drastic changes caused tremendous concern to Kathy. Philip was not himself and the unpredictability in his behavior began to affect their marriage. “I truly thought he was just trying to be mean to me. Honestly, his behaviors were off the chart, especially in the evenings. This sounds awful, but I had threatened to leave him if he did not go see a doctor,” said Kathy. Philip had a hard time accepting that his body and mind were going through severe transformations. It was a year after these changes developed when Philip agreed to take Kathy’s advice to seek medical attention.

Six months after their first visit to the doctor, their neurologist looked at them both and spoke the words “you have Lewy body dementia.” Kathy and Philip gazed at each other in disbelief and shock. A storm of apprehensive emotions engulfed them. Philip turned to Kathy and asked how we are going to handle this diagnosis, Kathy replied reassuringly, “head on.” “From that moment forward, Philip was never the same – he just never got better,” said Kathy.

Kathy’s physical and emotional needs often became second to Philip’s. She was in a world where she felt abandoned and isolated. Her expectations of retirement and Philip’s forced, early retirement impacted their plans to travel and explore the world. “It is very difficult for family and friends to understand. Only through lived experience can people truly grasp what it is like to care for someone with LBD.” Today, their world is much smaller than they had previously imagined. She will not leave the house for very long and local travel with Philip has become extremely limiting.

Love is #GreaterThanLewy

Kathy and Philip were determined not to let the devastation of the diagnosis define the rest of their lives. “This is not the dance we would have chosen, but we decided that we are going to dance as long as we can,” said Philip. As tough as the journey has been, LBD brought them closer than ever in their 50 plus years of marriage.

Since his diagnosis, Kathy has been dedicated to supporting Philip. “I’ve learned a lot in terms of patience and compassion. In the past, I have said and done a lot of things, but by educating myself about the disease, I have managed to draw up daily routines that work for our relationship and our life as it is now,” said Kathy. Though her caregiving journey can seem strenuous at times, she redirects her knowledge to lift, and strengthen other caregivers with their individual struggles. In 2010, Kathy started the first support group in the state of Georgia. “I cannot say enough about how much LBDA has assisted me…I can only be as good as I am by those, I surround myself with.” said Kathy. The resources and support LBDA provided, tremendously helped Kathy during this challenging time. She is determined to pass on the knowledge that she has received from LBDA and from her experiences to help other caregivers.

YOU Can Help

Please consider contributing a meaningful gift in support of the lives of those impacted by Lewy body dementia. Your support will help fund support services, outreach, education, and research for those affected by LBD. Your gift will also continue our awareness efforts to educate more people about the disease and produce better treatment options.

Click HERE to support those living with LBD, their families and caregivers.

Kathy and Philip Fowler

Oct 10, 2019