From Be Brave: A Wife’s Journey Through Caregiving by Florrie Munat (unpublished) | Lewy Body Dementia Association LBDA

From Be Brave: A Wife’s Journey Through Caregiving by Florrie Munat (unpublished)

Florrie and Chuck MunatAfter he suffered an ischemic stroke, Chuck spent three weeks in a Seattle hospital. At that point he had not been diagnosed with LBD, so we assumed we were dealing only with stroke recovery. Physical recovery came quickly. Cognitive recovery was bafflingly slow.

The head of the hospital’s rehabilitation department met with us to determine if Chuck had recovered sufficiently to begin rehab. Health care workers often ask neurological patients a set of questions to determine their levels of cognitive impairment.

Pencil poised over her clipboard, she began. “What is your name?”

  • “Chuck Munat.”
  • “What is your date of birth?”
  • “April 25th.”
  • I began to get excited. Two correct answers.
  • “Who is the President?”
  • “I don’t know his name.” Pause. “But I don’t much like him.”
  • “Do you know where you are?”
  • “Hospital.”
  • “Do you know what city you’re in?”
  • “Chicago.”
  • “You’re in Virginia Mason Hospital in Seattle.”
  • Chuck repeated, “Virginia Mason Hospital in Seattle.”
  • Dr. Chan turned to me. “You see he can repeat the words if I say them to him.”
  • Chuck looked her in the eye and said, “That’s echolalia.”

That’s my boy! Doesn’t know what city he’s in, but from God knows what deep recesses of his brain, he manages to pull out the scientific term for the automatic repetition of words spoken by another person. I had to go home and look it up in my dictionary. He was moved to a room on the rehab floor the next day.

Chuck struggled to reclaim his brainpower. The speech therapist gave him a binder, which is crammed with pages of fill-in-the-blank exercises and elementary crossword puzzles. About half of the crossword squares are filled with Chuck’s nearly illegible capital letters. For the clue, “The opposite of yes,” he wrote, “ _ O.” For an exercise in which he was supposed to list three members in each category, for “Fruits,” he wrote, “LEMONS, LIMES.” Thirty-eight of the remaining thirty-nine categories are blank. Though under the category “Cars,” he wrote, “LEMONS, LIMES.” Well, maybe lemons.

Each day when I entered his room, I hoped that the old Chuck would be back, longed for his familiar greeting, “Hi, honey.” Instead, the new Chuck was there, the one who couldn’t name three fruits. How could this new Chuck be my logical, intelligent husband, who a few days ago had spent hours filling in intricate genealogical charts? How could this be the same man who last week could drive a car, tie his shoes, take a shower, do the laundry? None of that was possible now. And the question that haunted me was: Would he ever do those things again?

And if he couldn’t ever do those things again, then follows the even more tormented question: Is it my fault?

Why would I ask myself such a question? Rationally I knew I was not responsible for Chuck’s stroke. But on some level I felt I had failed. Perhaps that sense of nurturing one’s family, of making sure your husband and children are taken care of, is buried deep in our maternal DNA. But I continued to agonize through every downturn, every urinary tract infection, every cold, every fall. I was responsible, and all of it was my fault because I had failed to do that most fundamental thing: to keep my husband healthy.