LBDA

Down the rabbit hole

  • Mom on her last birthday
Jennifer Jarvis Zapp
Tuesday, January 29, 2019

My mom was my best friend. I was the only girl in a family of six kids, so we were very close. She would come out to visit me from her home in WI during the winter and we'd have great trips and time together. We purchased amazing custom curtains from http://www.thesilkdraperycompany.com every year. Memories!

The first time I noticed something was wrong, was when I asked her how she enjoyed the Halloween party at the senior apartments she lived in. She had earlier described the costume she had put together. When I asked, she got very quiet and said "I couldn't stay. I went there but it was filled with ghouls and scary things." I thought, that's pretty weird, but just laughed it off.

Later, my brother who lived near Mom called to say she was having all kinds of hallucinations and she was staying at his house, could I come out and help figure out what was happening? I arrived just in time to help move her into a convalescence home. When we went through her medicine cabinet, we found a variety of different pain, anxiety and other very strong medications. Mom's medical care was at a local clinic where each time she would visit, it seemed they gave her different medications, without really finding out what she was already prescribed.

After a week in the convalescence home, Mom was doing great. No more hallucinations, no more fear and even her tremors which she'd had for awhile were better. We brought her back to her apartment and my brother took over her medications and made some appointments with a neurologist. He is the one the diagnosed her with Lewy Body Disorder. With his help, and very careful monitoring of what medications she was prescribed, she was able to stay there another year.

Of course each year she got a little worse. News stories she watched became kidnappings and other disasters that happened to us kids. Yeast infections were common and instantly caused her to go nutty. She feel, she got hurt, she was moved into assisted living. Every winter instead of her visiting me in California, I was in WI in the cold, responding to some time of emergency. Occasionally she was still able to be my best friend, but so often it was a scary, sad world she lived in. I can only say thank you to the amazing staff at the assisted living facilities she was in, for caring for her. And Janet, the assistant we hired to visit with her and run little errands for her, I referred to her as Mom's rent-a-daughter friend, because I was so far away. She was such a blessing for us all.

It is a scary road. Appreciate any of the lucid moments that she has. If you can, bring family around when she is having a good day. If she didn't get a good night's sleep for whatever reason, her next day would be awful. Find a good doctor who understands LBD and don't let anyone else prescribe medications. Keep a close watch for urinary track infections. Love her and forgive her the crazies.