I have traveled extensively throughout the United States and have often looked in wonder at the vastness of the mountains, forests, plains and deserts that early settlers had to navigate as they pushed west. I realize in the area of Alzheimer’s treatment my husband and I are pioneers. We are pushing forward, hoping for a better life.
I’ve come to understand that doctors don’t always have all the answers for caregivers. So on top of everything else we often act as medical advocates for our loved ones. An example of this is no one told me about clinical trials.* I heard an announcement on the radio that prompted me to call an Alzheimer’s clinical research center in San Francisco.
It was there that I discovered the array of studies being done to combat this disease. However, along with a glimmer of hope was the fear I might be putting my husband in even greater jeopardy. Before we selected a clinical trial we discussed the possibility it could either cure him or kill him.
At a presentation the Alzheimer’s Association offered, I asked a clinical researcher speaker how to determine what would be the best clinical trial for my spouse: she answered, “You have to decide what level of risk you are willing to take.”
Surprisingly, I understood. Didn’t like it, but understood, because the reality is my husband has a terrible terminal disease.
I recently told my family physician that my biggest—and hardest—decisions involved John’s quality of life. And as time goes on and John’s disease worsens, I might be willing to take on more risk than I am today. Like many caregivers I’m moving through uncharted territory.
*The Alzheimer’s Association TrialMatch can help connect individuals with clinical studies throughout the country.