Saying "No" at the Polls: Dementia and the Right to Vote
As products of the Depression era and World War II, my parents had very strong opinions about their rights as American citizens. It was considered nearly sacred, a right that was not to be ignored. They were not political people, just people who deeply appreciated the right to vote and realized the importance of doing so.
Many memories of my vibrant mother in action were during the years when the League of Women Voters was really getting a foothold in the area around my hometown. Again, Mom was not a political person, but the "League," as she called it, was just there to encourage people to get out and vote. They are still active in holding debate forums all over the country.
During elcetion season back in those days, we would have a garage full of modest-sized, plain white signs that said "VOTE" in large black letters. Mom and her colleagues spent hours hauling these signs around town, asking people to display them in their yards, and then diligently collecting them prior to Election Day.
Years passed, and Mom was no longer active in the League. However, she and Dad always considered their right to vote to be their civic duty.
By the time my uncle became a resident at a nearby nursing home, this home had also become a precinct voting location. It was convenient since my parents voted close to their apartment, and I could easily guide my uncle, an opinionated, retired military officer, down to the poll site on the first floor of the home to cast his ballot. Shortly after my uncle's move, my father underwent brain surgery. this procedure led to his subsequent dementia, and he joined my uncle at the same facility.
Dad still had lucid moments and, while he could not make his hands do what his brain wanted them to do, we were well aware of his voting preferences. I ordered him an absentee ballot, and Mom and I helped him vote by reading and discussing each choice. We felt comfortable that he was voting as he chose. He had dementia, but dementia does not indicate stupidity. He had many very bad days, but he had not changed his views on who should be in major offices.
Eventually, Mom's arthritis worsened, leading to regular falls and a fear of being alone. My daily visits with her were not enough to make her feel secure. Even the personal alarm she wore, where she could call me at the push of a button, did not help. She made the difficult decision to move to the facility to be with Dad.
At the time, her dementia had not progressed past mild forgetfulness. Meanwhile, we had decided that Dad likely was not aware enough at election time to vote, and we knew he could no longer make an informed decision. Together, we decided it was time he skipped voting, and he didn't seem to notice. He was better off not talking about political things, as he could longer separate reality from the voice in his head.
However, Mom was determined to vote and I felt she was competent enough to make her own decisions. I took her to the voting booth, helped her in, and waited for her to finish. Afterward we would go back to her room to resume our daily routine.
I will back up a bit to say that I had plenty of previous experience helping elders vote. My neighbor Joe was the first elder I consistently cared for. He was totally deaf and had limited vision. Joe and I had very different political views, but we debated them daily, just for fun. Joe would talk and I would scribble my silly answers back on a notepad.
I would take Joe to the polling station, sit with him and help him mark his ballot as I read each office and the choices to him. We would joke about the process, and I would bring a magnifying glass along just to prove I was showing him the right ones to mark. We had fun with the process, but we took voting seriously. It would never have occurred to me to deny Joe help in voting to support his views.
As Mom's dementia grew worse, I started to wonder a bit. Could I just let the election slip past? Would she notice? Where did her rights stop and when? I had felt guilty when we stopped Dad's voting, but there was not as much gray area with Mom. He really had gotten past the point of awareness and decision making. With Mom, it was different.
I found that she was very aware it was election time, even though she could not remember if my sister had come to visit Sunday before. I was also aware of how steadily this disease was undermining her dignity as a person and devouring her decision-making abilities. I agonized over voting rights and whether she should do it.
However, until the last couple of years of her life, I kept helping her vote. Was I right? I knew her preferences. In hindsight, I probably should have had a third person help, but who else but family would have known her past preferences and her political beliefs? How would it have helped to have someone sit there as we discussed it?
It is the "why" that mattered to me. She and I didn't necessarily agree on all things political. But one thing we both knew was that she believed in her right to vote. This was a right that she held dear. I felt that as long as she was aware of the campaigns and that election day was approaching, it was her right to vote as she chose.
This is one of those issues that is going to take on a much larger social presence as we move forward. Maybe some states have laws already in place regarding competency and voting. But where would they draw the line? Should someone who was just diagnosed be denied the right to vote? How about someone who has been diagnosed, but is taking medication and still drives? Should that person be deprived of this right as an American citizen?
As baby boomers age and more and more are diagnosed with dementia, this could become a political and social hot potato. Should a person lose his or her voting rights when they can no longer drive safely? Should they lose the right to vote when they no longer can recite the alphabet? Just where do we, as a nation and as caregivers, draw the line? Will we have to prove people who have been diagnosed legally competent in order for them to exercise their right to vote?
For me it was a decision about the dignity of my elders. I made the decisions I made with my heart and with the information I had at the time. As times change, this situation will likely become scrutinized more closely. Add the right to vote to the pressing list of issues the tsunami of aging boomers will force us to deal with.