Stop me if you’ve heard this one before…

(Image from DailyCaring)

I have a background in neuroscience and so the volunteer coordinator for my local hospice often assigns me to patients with cognitive issues. I guess having an understanding (at least as deep as science itself can offer an understanding) of dementia and mental illness does help me comprehend a bit of why communication can be difficult for these patients. But, I honestly don’t think it helps me be a better caregiver to them.

No, what helps me, was once when accompanying my mom and grandmother to a doctor’s appointment when I was still a child reading one of the “health info” posters:

Speak precisely
Ask direct questions
Be patient

I can’t even remember if it was related to speaking to people with dementia or not, it’s certainly good advice for communicating with people who do but it’s just as good advice for communicating with people who don’t.

I think most human beings feel a fundamental need to be understood by other human beings on an emotional level. When I visit with patients who are cognitively impaired I find that if I give them room they have lots to say. I’ll admit that sometimes it’s hard to figure out what it is they want me to understand, but I think it’s important to recognize that what’s being said is crucial for me to listen to- everyone deserves to be heard, even if they can’t be literally understood, and often it is possible to discover the meaning. Learning to listen on an emotional level is key when communicating with patients who have cognitive impairments.

For example, a few weeks ago a woman was adamant repeating: “my father has owned this land for 900 years!” I finally pieced together that she was upset about either her new hall-mate or the new patio or both- change is never easy but when you rely on routine it’s even harder. Now whenever I visit I make sure to mention her no-longer-new hall-mate,  and comment about how nice the new patio is. My hope isn’t to help her remember these changes but rather to acknowledge them as new things in her life.

I recently was asked to spend some time with a gentleman who has relatively mild dementia- he knows where he is, who he is, who his loved ones and visitors are, and even that he is on hospice. “Be careful,” a LNA warned me as I got ready to visit him the first time, “he’ll tell you the same story over and over and over again if you let him.”

Why wouldn’t I let him?

In the weeks I’ve spent with him I’ve noticed the stories he repeats seem to correlate with his moods. As a veteran, it seems when he is telling war stories he is struggling a bit with his imminent death. The stories are never exactly the same, and often he’ll say “I never thought I’d feel like that again.” Or, “So believe me when I tell you I know what it’s like to stare death in the face.” He tells stories about his childhood on days when his family is around. Stories about his time in college always indicate a particularly good mood. Stories about his brother indicate (to me) he’s feeling contemplative.  “Stop me if you’ve heard this one before.” He always says, usually before repeating something for at least the 3rd time. But I don’t stop him. “I might have heard it before,” I say, “but I’d love to hear it again- tell me more about….” and he does. Over time he come to talk less and less about the war and college, and more and more about his childhood and his brother. “You’re doing a lot of thinking today.” I can say. “I bet you love that your daughter is home.” I think in his own way he’s moving past his fear of death and longing for youth, to wanting to express his love for his family.

Another patient recently who died without losing any of her cognitive facilities fretted over her husband, who was suffering from moderate Alzheimer’s Disease. Both were devout Christians. As she began the active dying phase and was asleep for large chunks of the day I spent more time with her husband. I watched his children scold him for not remembering their names and excluded him as they grieved for their mother- “you don’t even know who she is anymore,” they said. I made sure to sit with him. He would tell me, every visit, for however long I sat with him, about heaven. It was all he talked about, heaven and how it was a place where the body was healed and he and his wife would live together forever. He knew who is wife was, he knew she was dying. His stories of heaven were his way of comforting himself- and asking for comfort. He needed to know they would be together in heaven. He needed to know she wouldn’t be suffering. So we talked about what heaven meant for him- a place of peace and love and happiness. I like to think it helped.

As I said before, everyone deserves to be heard. And what I mean is, everyone has something they want you to hear. It’s always worth listening.

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