Writing this monthly column about my life with dementia has been somewhat therapeutic. And it also has been a learning experience.
Every poignant reader response allows me to measure my location on the dementia highway. I am not as far along as many, but I am riding side by side with others.
Listen to one reader who wrote from a care facility as he visited his loved one:
“My wife was once a vivacious woman. Now she is like a vacant building where you wish the walls could talk of their past. Sometimes she looks at me and I feel her love but I don’t know if it’s wishful thinking.”
By comparison, at this moment I really am doing OK. But since being diagnosed nearly three years ago, my cognitive dementia has slowly but relentlessly gotten worse, occasionally producing frightening moments of confusion when I literally didn’t know where I was or what I was doing. At those times, it feels as if I am virtually mentally paralyzed for a while.
However, ever since my neurologist doubled my daily medication dose about six months ago, that occasional overwhelming fog of perplexity has thankfully disappeared. My medication is a drug that is commonly prescribed for dementia, but I am not identifying it because I am only one example, and this column is devoted to reflecting the dementia experience, not dispensing advice or recommendations.
I’m deeply grateful to be relatively fine as I adjust to living with the new me. My short-term memory is mostly gone, and huge gaps remain in my long-term memory. I often buy things I forgot I already bought, and my sense of direction to and from what should be familiar places has simply vanished.
Several moments in recent weeks have abruptly reminded me of the continuing condition I generally try to ignore. The dementia dragon strikes at will, clogging my thought processes or vacuuming treasured memories from my brain.
During a recent lunch with friends, I argued adamantly that another of our friends was not out of the country on a vacation. The next week, when the friend in question returned from a trip to Mexico, he said he and I had discussed the trip before his departure. Even with his reminder, I have no recollection of the conversation.
Another sad moment occurred when my wife, Barbara, and I visited a casino to play pai gow poker, a game the two of us have enjoyed playing together over the years. It is a relatively simple poker game, and we have never won or lost very much while enjoying ourselves for many hours.
Barbara got her cards first and was arranging them when I realized that I no longer knew how to play the game, a shocking and immediately depressing reminder of my new reality.
More recently, on my way to a physician I have been seeing routinely since the mid-1980s, I realized that while I knew his office was in Carmichael, I didn’t know how to get there. I stopped in a shopping center parking lot, got his address on my phone from Google, then programmed my car’s navigation system. I made it to the appointment on time but lost more confidence in the process.
Coping with these very minor inconveniences is relatively simple, especially with technology’s assistance. I try to live as normally as possible while being open about my problems so those around me understand why I sometimes appear puzzled, uninformed or distant.
Freely acknowledging my cognitive difficulties has made me feel somewhat liberated and much more comfortable with my condition. But many people avoid discussing their illness.
“My mom is still in excellent physical health, but her mind continues to deteriorate. … She wants nothing to do with discussing any of it. ‘If I ignore it, it doesn’t exist’ has always been my mom’s life philosophy,” wrote a reader. “I find this extremely difficult, but appreciate that she has a right to confront her life in her own way, so there is a huge ‘elephant in the room’ as we go through living and coping with this disease without ever calling it by name or connecting with one another by talking about it.”
Many who suffer don’t want to discuss dementia because they want to avoid acknowledging that they are having problems. “My dear friend is still in denial,” wrote a reader from San Luis Obispo about her friend in a care facility. “She will say to me, ‘I do have some memory issues, according to my brother.’ ”
With advanced dementia patients, if conversations don’t take place soon it will simply be too late. “My sister-in-law was diagnosed with dementia a few years ago. I see her every few months and find it more and more difficult to have a conversation with her. She was once such a vibrant, strong woman,” a reader commented.
By openly discussing my condition, I try to model my belief that there is nothing shameful or embarrassing about having the ailment. For me, it simply is what it is, and I yearn for those around me to view my condition the same way, accepting its presence while not dwelling on it.
Besides, having been upfront about the malady can sometimes help defuse otherwise awkward occasions, transforming them into lighthearted moments. Not long ago, during a conversation with a close friend on our front porch, I commented that I had never noticed the flag holder on the side of our house.
“You put that there a few years ago,” Ralph told me. “I gave it to you. I also gave you a flag.”
I glanced at Barbara, who nodded. I just pointed to my head, and we all had a good laugh.
Kent Pollock is a retired journalist and journalism professor. He was formerly the assistant managing editor of The Sacramento Bee and editor of the Anchorage Daily News. Please share your perspectives, insights and comments with him at firstname.lastname@example.org.