Educating Myself To This Insidious and Still Somewhat Mysterious Disease: The Letter

Early on, it occurred to me that keeping Woody mentally active would be important. We’d made good friends during the years we sang with the hospice choir, so I reached out to them. “Would you come for a short visit?” I asked. No one said no, that first year. Eventually, I put together a letter to all visitors a bit of guidance. I’m happy to share that with you now. I’ve pulled the contents from many sources. So that you might feel free to adapt it for your own use as you wish, I’ve xxxx’d out Woody’s name.

Thank you for coming to visit xxxxx. He not only enjoys these conversations very much, they are good for him, stimulating him cognitively and helping him make an emotional connection. And, frankly, they give me a little break, which as time goes by, I’m told, will be more important. I hope you will also find these visits worthwhile enough to come back every few months. They are a gift of grace for which I am very grateful. I hope you’ll let me know your availability so I can schedule them.

My approach to his care is grounded in giving him opportunities to feel competent, productive, and successful. His well-being and his sense of safety and dignity are of primary importance to me.

Dementia is a progressive disease that makes it hard to store new information, that’s first. One complication that sometimes occurs is an inability to include his diagnosis in his self-concept. This may require a few adjustments in how you’ll  communicate.

1. Don’t ask questions. Rather than, “how are you?” start out with a simple declarative sentence, “It’s good to see you again.” While this sounds simple enough, it is really hard.
   
   
2. If he repeats himself, don’t point it out to him. It happens.
   
   
3. If he says something that you know to be factually inaccurate, don’t contradict. Agree with emotion involved and suggest a solution if possible. For example, if he tells you it’s going to snow badly tonight, and you know it’s too warm for that to happen, you might respond, “Too much snow can cause problems” or “We’ve certainly had a lot of snow this winter.” Then – suggest a solution to his fear: “I’m glad I have good snow tires on my car” (even if you don’t) or “How nice that I won’t have to shovel it.” Agree and suggest. 

Here are a few positives to keep in mind.

1. Speak SLOW (rate) and LOW (timbre) if possible. Again, not easy.
   
   
2. Tell him about your life, what you’ve been doing, experiences you’ve enjoyed.
   
   
3. Limit your topic to ONE thing at a time.
   
   
4. Hug him if you care to.  Touch is a powerful way to connect.
   

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Topics of particular interest to xxxxx include anything having to do with language. Words in particular have long been fascinating to him. He does crossword puzzles each day and, as a young boy, created a new alphabet. He still ends his day reading, currently it’s the Patrick O’Brien series for the third or fourth time.

Sailing, fishing, singing, playing music, especially his guitar, though he once played the flute are all activities he has loved doing and was once able to do without “effortful thought” (which may mean he can still access those memories). Muscle memory, I’m told, remains long after data memory has gone.

Most importantly, enjoy your visit.

I’m aware of the oft repeated warning, “There is no diagnosis that makes people disappear faster than dementia” and I am grateful we have you in our lives.

I was sharing this letter with my mom one evening and Woody picked it up and began to read it, slowly. When he finished, he stated, clearly, “I don’t agree with two of these. I like questions. They can ask me anything they want.” He also disagreed with my #3: don’t contradict. “They can disagree with me. I don’t mind that.” So, the letter is a guide, only; not a crutch. The real goal is to be in contact and engage in conversation, which he very much enjoys.

Next time: We’re still in educating mode — THE BOOKS will be next.

How about you? Could you hold a conversation and not ask any questions? How about changing the rate of your speech? These are not easy.