Widower/former LBD caregiver
My wife, Balinda, died six months ago. She was originally diagnosed as having LBD with Parkinsonisms in January 2012. She was diagnosed by a neurologist at Emory who she was referred to by our primary care doctor, so we didn’t spend any time with incorrect diagnoses. Looking back, I think she had LBD cognitive symptoms for 7 or 8 years prior to that but they were not obvious enough to be recognized. For about six years after being diagnosed, it was hard for most people to realize she had an incurable, progressive disease. That bothered her to the point that she remarked that most people didn’t know how sick she was. It was difficult for me to remember because Balinda didn’t exhibit outward symptoms very often. She remained her loveable friendly self until the last month or so of her life. She showed heartfelt appreciation to me and anyone who did anything for her.
The role of primary caregiver is one that very few people, if any, are prepared for. I was raised to believe that one should always be responsible for their family. I stubbornly refused to ask for, or accept, help in caring for Balinda. I felt I had to be strong for both of us and take care of her like no one else possibly could. I swore that I would never leave her side, especially allowing her to be placed in a nursing home. Other than hospice, which allowed her to remain and die at home, I kept my promise. In hindsight, I would still make that promise, but would not allow my pride to prevent me asking for help. I did not need physical help, but I needed advice about caring for a person without mobility who had cognitive issues. I wouldn’t allow myself to realize how helpless and dependent Balinda was. That inability prevented me from realizing that she was unable to do things I would ask her to. I expressed my frustrations when she was incapable of understanding. After 36 years, I lost the most important part of my life. She was 67 years young.
My hope in telling our story is that caregivers might possibly recognize themselves and please ask for help. Try to understand how your loved one cannot be any different than they are and that they need you to realize that.
Jun 15, 2019