Living With Alzheimer’s: Finding Acceptance and Hope

In November of 2020, Michele Hall was diagnosed with early-onset Alzheimer’s disease.

For the last 10 years, Michele served as general counsel for a large law enforcement agency. She loved her job and the people she worked with. Eventually, over time, she began to notice something had changed. Below, she shares her story.

Early signs

I can’t tell you exactly when I began to notice that things were different. Things were being discussed in meetings without my participation. When I was included, I often had to ask people to repeat what was being discussed. I also was having a difficult time coming up with my words. A short time later, I found myself blurting out words that were not pertinent to the discussion or throwing out answers when not asked. I eventually found myself declining to attend meetings.

For a period, my two capable assistants were able to help me with routine tasks. As things worsened, however, I felt the need to speak with my boss, the sheriff. I told him that I appreciated his patience and not to worry. I would eventually return to normal.

In the middle of dealing with things at work, I hurt my hand. I went to the doctor’s office. After I had checked in with the receptionist, I was given four or five forms to fill out prior to seeing the doctor. When I looked closely at the forms with blanks that needed to be filled in, I froze because I couldn’t read any of the instructions. I told my brain how to spell “cup.” I couldn’t figure it out.

I waited, tried again in 30 minutes, and I still could not spell “cup.” I was extremely upset by this sudden change. I thought the issue might be stress induced and that, once things calmed down, I would return to normal. This was not the case. To this day, I try to practice spelling words, saying them aloud, and writing them down. By the time I decide to write the word down, I have forgotten the word I was struggling to spell.

Another example of my early struggle came when I was taking a trip with my family. On the plane, the in-flight movie was “Still Alice.” In the movie, Alice, who is in the early stages of Alzheimer’s, attempts to speak in front of a large conference but is unable to find her words. A few years ago, I found myself in a similar situation. As president of the Florida Association of Police Attorneys, I was addressing the annual convention. When I stood at the podium, I couldn’t speak. Unable to find my words, I waited until one of my fellow attorneys stepped in to help me. Even though I had so many signs that things were wrong, I still blamed it on stress and thought I would return to normal soon.

Receiving the diagnosis

Following the incident when I could not spell the word “cup,” my doctor referred me to a neuropsychologist for testing to help determine the source of my issues. She also recommended that I get a PET scan. The results of the scan, I was told, revealed that I was “lucky” because “everything in my brain looked perfect” and I “should have a Merry Christmas.” My husband and I had done our own research and I was continuing to have problems. With that, we decided to make a trip up to Mayo Clinic in Jacksonville.

The neurologist at Mayo performed a lumbar puncture. He had ruled out other possibilities for my cognitive impairment. The puncture results indicated the presence of Alzheimer’s disease.

Finding strength

At this point, I knew I had to address the issue with my family. I returned from an errand and discovered that my husband and three children were sitting on the living room couch waiting for me to open the discussion. It was extremely emotional, but I was able to calm down enough to talk with them about my recent diagnosis.

I told the kids right then that I was not the type of person to linger in a nursing home. Once things got bad, I wanted to be able to die with dignity. I did not want the kids to see me waste away. About a year ago, a friend of mine who had been diagnosed with a terminal illness took her own life. I thoroughly researched ways that I could kill myself. I explained that I wanted them to remember me at my best and not have to see the ugly side of this disease. The kids spoke up and said that there was “no way” that I was going to leave them this way. They wanted to take care of me and have as much of me as I could give.

My support system consists of my husband, mom and friends. They support me in different ways. Three years ago, a neurosurgeon discovered I had a large pineal cyst in my brain. There was much discussion with clinical experts on how to treat this cyst. Should it be removed? Should it be left alone? My husband, Doug, was very persistent in researching these options and he was tenacious in his insistence to speak with clinical experts. My mom moved closer to me to help with my current and future needs. Most importantly, she is always there if I need someone to talk to. As my disease progressed and I had to give up practicing law, friends became especially important for my emotional support.

Learning to live with Alzheimer’s

To date, I am not able to work and have difficulty reading, writing and working with numbers. Recalling phone numbers and dates can be impossible. Other times, under less stress, these tasks are doable.

It’s hard to face this ending. I read everything I can about the disease, trying to absorb what each stage means to me. There are moments that I wish I didn’t know these facts. I know I need to find the balance between acceptance and hope.

I have promised myself that I will find beauty and purpose in everyday life. This includes holding a neighbor’s newborn baby, planting a garden in my yard, taking my dogs for long walks and hiking with my husband. I will not take time for granted anymore. I envision myself as part of a continuum. I am determined to be present.

My future includes eating well, exercising and living a healthy lifestyle. Most of all, I want time to see my children find love, have careers and experience all that life has in store for them. And, I want the privilege of growing old with my husband.

My advice to others diagnosed with Alzheimer’s disease is to take time to accept the diagnosis. Grieve, and then move on and focus on people and activities that will promote physical and emotional well-being.