Five and a half years ago my friend Pat learned she had early-stage dementia. She wrote the following email to alert a few friends. I was so impressed I wrote about Pat and her journey https://lucymoore.com/pats-journey/

“I will have a story to tell, it’s about dementia; I’m tiptoeing into its acquaintance with some shivers and some giggles. It seems a good idea to let my friends know so you can be irritated, patient, amused, puzzled, frustrated, or just plain aware of what’s happening to my more than 80 year-old brain-psyche. I’ve found that funny things do happen quite a lot, and there’s a good aura about my beginning journey into the never never. Anyway, that’s the prologue on this side of the fence. I intend to be friendly no matter what.”  

Since then, the friends – now known as Team Pat – have traveled with her into the “never never,” helping with tasks, being there for her in stressful times. She is still “friendly” as she promised, and she is still very much herself, a person we all adore. She is still in her house, still folding paper cranes and decorating nature with them, still sitting on her front porch enjoying the comings and goings in her neighborhood. On my visits, we talk about our pasts, our current complaints, local happenings, and we laugh a lot.

After a few minutes, Pat asks “How’s Roberto doing? Good I hope!” My husband is an old friend of hers and drives Pat to dental appointments. They are very fond of each other and manage to make her trips to the dentist into adventures.

I respond, “He’s doing great! Going to the gym regularly which is really good for him.”

“Really? That’s wonderful. I’m so glad!” And we slip into a conversation about exercise and how much we both hate it, and comical yoga moves we’ve invented, and the benefits of walking. A few minutes later, Pat asks, “And how’s Roberto doing? Is he OK?”  I have learned, for my sake as well as hers, to vary my answers.

“He’s good!” I tell her about our Japanese lessons and how much he loves learning to write Kanji, the Chinese characters adopted by the Japanese centuries ago. And we’re off, talking about our love of Japan, and we end up folding a few paper cranes….in silence, until…

“How’s Roberto. What’s he up to?”

“Well, actually, he’s kind of anxious about his brother who’s having a really hard time. It’s a concussion and he lives alone, and….”

“Oh, no! Tell him I’m so sorry. That’s gotta be hard to deal with. His brother…wow.”

I thank her and promise to pass on her message. We talk about both of us being only children and that there are advantages sometimes, and how we’re not spoiled (contrary to popular belief), well maybe a little, and we laugh about how we always expect to get our own way.

A few minutes go by. “So how is Roberto? I hope he’s just great!”

“I’m so glad you asked,” I bounce back. “He is so happy with the new paint job on his truck. It was looking pretty sad, paint peeling, and so he found this great guy down on Siler Road who did a fantastic job. It’s two-tone – white on top and red on the bottom.”

“Good for him! That sounds gorgeous. I hope I can see it soon.” We move on to vehicles we have loved, and she mourns the loss of her 30-year-old Toyota pickup, which she gave up when she stopped driving. She’s still upset when she looks in the garage and it’s not there. We get off the couch and peek in the empty garage and cluck, and tut, and say, yes, it was a really fine truck, and we reminisce about her trips to the badlands and the time she got lost.

And then, it’s time for “Hey! Tell me about Roberto. How’s he doing?”

Time to get serious. “Well, he’s got aches and pains. It’s hard to get old – right?” and I talk about his knee replacements and heart by-pass and the worry that something else will need replacing. And we exchange aging updates, and move on to our grandparents and how much healthier lives they led.  

I sometimes hear people complain about how friends or relatives with dementia repeat themselves, asking the same question over and over. It is so frustrating, they say, to have to answer the same question ten times. Some are so irritated they have stopped visiting the “repeat offender.”

This is such a shame. We all know the person with dementia cannot help repeating themselves. It is as much a part of the condition as sneezing is a part of allergies. And since they won’t remember the answer you give, why not vary them? Each will lead to a different conversation where you can share stories, insights, laughs. I always leave Pat with gratitude for her friendship, her caring for me and Roberto, her storytelling skills, and her good cheer.

In answering her (repeated) question, I have not lied. All the answers are true, and actually, by the time we are through I have painted a pretty well-rounded picture of “how is Roberto?”

In fact, I think it’s a good practice to speak multiple truths. Try it. Just pick a topic and ask yourself a question and then ask it again…and again, and you will probably end up with a balanced and truthful version. Plus, it’s good practice for the next time you meet a repeat offender.

Here’s a question I ask myself a lot, but have never taken the time for a full answer. So, I will ask myself over and over:

“How does it feel to have a needle stuck in your eyeball once a month?” [treatment for macular degeneration( MD)]

• The thought of It is terrifying, like a horror film. I used to have nightmares. I don’t anymore.
• I feel like a banana cream pie on a conveyor belt. The clinic is like a factory, churning us out by the dozens every day.
• It hurts, not a lot, but I feel it.
• I appreciate the techs who prepare my eye and mop up afterwards. All are skilled, some have a calming effect.  
• I am grateful that the injection exists because it is slowing the progression of the MD.
• It is unpredictable and holds the potential for amazement, like when I saw black spots after the injection, floating up from the bottom of my vision and disappearing at the top of my vision. These were apparently air bubbles from the shot and they were actually falling from top to bottom, but the eye/brain dynamic flips it upside down. I was amazed.
• I marvel at the doctors who stick thousands of eyeballs a year. What does it feel like for them? Do they get paid extra?
• I feel part of a community of MD people. We look knowingly at each other in the waiting room. I kind of want to talk to them, but I’m shy. I wish there were a zoom group for us… maybe I’ll start one.

And that is whole truth about how it feels to get stuck in the eye with a needle once a month.

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