I met Carolyn outside of Perkins for a late lunch. “There’s my sister’s car, so she is already here,” she said.
Just inside the door, Carolyn hugged stood a pretty dark-eyed woman, so I knew this was her sister Julia. We admired the pies while we waited to be seated. How well this lunch would go remained to be seen.
I was about to meet a woman who was beginning the Alzheimer’s journey. Julia’s husband has early onset dementia, and she is just beginning to understand what a complex and emotional road lies ahead.
We studied the menu and had pleasant, light conversation just like any three women without any serious cares. We contemplated the merits of breakfast versus lunch. As usual, I chose the tilapia and Julia followed suit. Carolyn easily chose breakfast.
Julia pulled up pictures on her phone of her beautiful daughters and grandchildren. Her eyes sparkled with love and delight as she talked about her family.
Eventually, the talk turned to Alzheimer’s, the elephant in the room we had been avoiding. I wanted Julia to lead the conversation.
She talked about how everyone seemed to have a solution. She has already read up on the scary disease and knows how limited the choices are and how unpredictable day to day can be.
The things she was talking about reminded me of a man who interrupted a presentation I was in the process of giving to announce he had cured his wife of Alzheimer’s. He had given her some kind of concoction that, according to him, was a miracle cure.
“How is she doing?” I asked.
“Oh, she passed away, but she didn’t have Alzheimer’s anymore.”
I didn’t relate this story to Julia, but I shared others. We talked about medication. Her husband is using an Exelon patch. I told her that none of the Alzheimer’s medications worked for Jim and that he had side effects. We talked about how some medications work the opposite on someone with dementia. A prescription used to calm most people may hype up someone with Alzheimer’s. Julia had a good grasp of how important it is to tweak medications and monitor them.
“I’m confident that I can take care of him no matter what happens physically,” she said. “What I’m not sure about is how I can handle the grief.” Her eyes now sparkled with unshed tears.
“Grief is the hardest part,” I said. “There is no defined beginning and it just goes on and on.” There wasn’t any way to sugar coat her emotional future, and I wouldn’t insult her by saying it would get better.
I was impressed that Julia did understand even at this early stage what her biggest challenge was going to be. Initially, most of us worry more about the physical challenges of Alzheimer’s—behavior, incontinence, feeding, bathing—instead of the emotional upheaval of losing someone we love one memory at a time.
Julia does has the same important advantage that I had. She has family to love her and support her throughout the challenging days ahead. Julia doesn’t need a lot of unsolicited advice from well-meaning friends or acquaintances. She will get her medical advice from a trusted physician, and her emotional support from her family and close friends.
We met as strangers and parted as women who had bonded. With the love and support of her sister and the rest of her family, she will make it through the journey. As I hugged her goodbye, I’m confident that she is a strong, grounded woman who will meet the challenges ahead of her.