Lessons Learned: One man’s journey as an Alzheimer’s caregiver
- Written by Mo Grossberger
- Published: 05 October 2015
We moved to Massachusetts to be closer to Jeanne’s mother, who had very advanced Alzheimer’s.
I remember the last time Hazel and I had a conversation:
“Hi, Hazel, do you know who I am?”
“Yes, Doctor, I remember you.”
“Do you know where you are?”
She looked around the living room where she had lived for over 50 years. “No, Doctor, I don’t know where we are.”
I pointed to a painting she had of the Great Wall of China. “What would you say if I told you that you walked the Great Wall of China?”
She replied, most uncharacteristically, “Doctor, I’d have to say you are full of crap.”
I realized that you DO NOT ask questions to someone with Alzheimer’s.
Three months later, Hazel was recovering from hip replacement in a nursing home. Her physician called us one morning and told us that she had developed congestive heart failure. He told us that we had two options: either send her to the hospital and make every effort to keep her alive or keep her comfortable and pain free. Her family gathered at her bedside, and she peacefully passed away the same day.
Around this same time I noticed that my wife’s symptoms were worsening. She was getting more forgetful, redundant, and paranoid, and she was misplacing things. We agreed that she would go through another full work-up at Franklin Medical, repeating the tests that had been done in Ohio three years earlier. She met with a team of specialists which included a neuropsychologist, a psychotherapist/social worker, a mental health clinical nurse specialist, and a psychiatrist. Following three days of extensive testing, we finally met with the psychiatrist, who told me, with my wife sitting right next to me, “Your wife has been diagnosed with dementia of the Alzheimer’s type.”
Jeanne was incensed. “Don’t talk about me, talk to me. I know that you can’t be sure of the diagnosis unless you perform an autopsy, and I refuse to let you do that.”
I was equally angry that the doctor handled this so poorly. He offered no eye contact, no compassion. We fired him on the spot. Our lives never recovered from his impersonal message.
That day I learned that the Alzheimer’s patient MUST have an advocate. I stayed in that role for years and had to be a buffer several more times to protect her.
How to contact Mo Grossberger