A Patient Speaks

By Gwen Richards

In November 2008 my husband and I left my doctor’s office. He went home and I returned to work. I stood in the parking lot and reviewed the billing statement in my hand. On it were the words Alzheimer’s/Dementia.

After a few moments of thought, I went into my workplace, spoke to my manager regarding my situation, and advised him of my need to leave the company. He was very supportive and advised me to do what I felt best for my family and myself. That day, at the age of 54, I left my job of 25 years and drove home. Eventually, I notified my two daughters via e-mail; I could not find the strength to tell them in person.

My family has a history of Alzheimer’s disease: several members have been diagnosed, and one of my siblings passed away as a result of the disease. I had a sense of the impact of my diagnosis, and it was an overwhelming and depressing reality I now found myself facing.

Being diagnosed with Alzheimer’s disease changed my life. I began to question my purpose. No longer did I have a need to wake up at a certain time in the morning and prepare for work. Gone were the opportunities to communicate with others, as my husband and most of my friends worked. Watching television didn’t fulfill my needs, and I found that quite often the noise irritated me. Though our cocker spaniel, Holly, kept me company when I first left my job, she became ill eventually, and we lost her.

As I struggled in the wake of my diagnosis, I felt the disease stripping away my sense of purpose, self-worth, and independence. I felt isolated, and encounters with doctors, Social Security, and insurance companies became a time-consuming, frustrating nightmare. I found myself repeatedly forced to deal with people, companies, and organizations that did not prioritize customer service and left me feeling depleted.

Coming to terms with my new reality and with others’ changed view of me was difficult and at times painful. At one point after I had left my job, I met some former co-workers for lunch. During the meal I lost my train of thought while talking, and when I looked around at the faces of my friends, I saw tears in their eyes. Though I know that they were tears of compassion, it was an overwhelming experience.

Thankfully, I have found hope in the support I receive from family and friends and in my work with the Alzheimer’s Association. I knew about the Alzheimer’s Association at the time of my diagnosis, as I had contacted them when my mother was diagnosed. Now my husband and I attend their support group meetings, which help us tremendously. The opportunity to talk with others who are also in our situation is invaluable. My connection with the Alzheimer’s Association has allowed me to regain the sense of purpose I had been searching for. I have been afforded opportunities to speak, I serve on the Missouri Alzheimer’s State Plan Task Force, and I am a member of the Early Stage Advisory Board. I advocate for a world without Alzheimer’s.

As a family, we all hope for a cure that will save our children and future generations.