Alzheimer’s affects everyone differently, but we all need an advocate on our side

It was a sad day when Kansan Dennis Moore, an attorney and politician, passed away from complications of pancreatic cancer. Dennis’ son, Andy Moore, wrote a beautiful commentary for The Star last week, and many of the things he said brought back memories to me.

Years ago, at the beginning of his political career, Dennis was in our neighborhood, going house to house, introducing himself before an upcoming election. My husband Len, also a lawyer, answered the door. Although the encounter was brief, Len came back into the house smiling, saying that he and Dennis were like-minded and his new acquaintance would go far in the political arena.

Dennis and Len had another thing in common: They were both diagnosed with Alzheimer’s disease. Len was diagnosed in 2009 at age 57. Dennis was diagnosed later. Len’s first noticeable symptom was his difficulty in articulating his thoughts and ideas, a crushing blow to a trial attorney. The thing about Alzheimer’s is that symptoms can sometimes appear years before an actual diagnosis and looking back there were fleeting moments that were out of character for Len, but they were just that — fleeting.

Len was enjoying his career, family and friends when a doctor at the Mayo Clinic told us that he had Alzheimer’s. An Alzheimer’s diagnosis is devastating, often causing great disruption in the family and exhaustion for the caregiver, leaving little energy for others. Len had to stop working, losing that all important camaraderie with his colleagues. And he could no longer drive, losing his independence. His difficulty with speech forced him into a type of isolation.

There is a stigma that comes along with an Alzheimer’s diagnosis. Often it is the picture of someone propped up in a wheelchair, unresponsive, isolated and alone. The reality is that the disease often progresses slowly, and there can be a good quality of life for a long time. We understood the trajectory of this disease and focused on the positive moments we shared rather than his decline.

In our case, people, including some doctors, avoided using the word “Alzheimer’s,” as if the disease didn’t exist. There was a lot of misinformation about the disease in the community at that time. A friend even went so far as to suggest that Len’s diagnosis was “good news, as Alzheimer’s was not fatal.” On the contrary — it is fatal. It is the sixth leading cause of death in the United States, and there is no cure. Len passed away from complications of Alzheimer’s in 2016 after a seven-year battle with the disease.

Alzheimer’s effects everyone differently. While Len’s speech was impaired, Dennis remained articulate. After he publicly shared his diagnosis, I saw Dennis at several Alzheimer’s Association events. He was very social and often sang short songs that he seemed to compose on the spot. He was not embarrassed about the hand he was dealt, but instead used it to show a different side of Alzheimer’s. His presence served to educate people about the disease and he was a living advocate for those who shared his diagnosis.

Len once told me that one of the reasons he chose to study law was because an attorney is also an advocate, and everyone deserves an advocate. Caregivers are advocates for their loved one. It is because of my experience with my husband, my interaction with Dennis, and my belief that Alzheimer’s is something we need to be talking about, that I choose to be an advocate for all individuals with Alzheimer’s and their caregivers.

There is no shame in a diagnosis of Alzheimer’s or any other dementia. If you suspect cognitive decline, talk to your family, your friends or your primary care physician. And if you are in an Alzheimer’s journey and have questions or need guidance, I encourage you to call the free Alzheimer’s Association 24/7 Helpline at 800-272-3900.