*Primary Progressive Aphasia, a degeneration of the part of the brain that affects speech.

Tuesday, October 30, 2012

An Untroubled Brow

This is what you look for in a hospice patient: the brow must be untroubled. Smooth, free of lines. There should be no grimacing. The face of the patient must be serene, peaceful.

Tommy has an untroubled brow. His face remains ruddy. His body is calm, arms propped on pillows to keep him comfortable, two pillows behind his sleeping head. A loose sheet covers his quietly breathing, thinning body.

Regularly scheduled doses of Morphine and Haldol, with an occasional drop of Atropine, are keeping my husband pain-free and tranquil, the goal of hospice.

Tommy, who worked out at the Lakeview YMCA three-times-a-week for 40 years, is hanging in. "There's no way of telling," doctors and nurses tell me. "Three days, three weeks?" Those estimates are not my husband's concern. His body will leave this earth when it is good and ready. I know this, I am prepared, even though at times I expect Tommy to yawn, raise his arms as if stretching, give me two thumbs up to indicate a good night’s sleep, then hop over the bed's steel sides, and dress.

That will not happen. My husband, when he decides he has had enough of his blubbering wife who strokes his head, holds his hand, and whispers "it's okay if you leave," will slow his breaths and that will be that.

Meanwhile, he is being cared for at home by me and a rotating roster of home health aides, hospice nurses, and Certified Nursing Assistants. A few of these people will be stellar -- like Stuart, the CNA who was originally hired to drive Tommy to the Y one day a week. Surprise: Stuart is receiving a PhD in nursing before he enters the college. I offered to write to Loyola's administration and tell them Stuart has completed all the necessary coursework.

Others I loved, like Rebecca, Qui, and Emile. Some I tolerated, and one I insisted never step foot in my house again. Along with inappropriate behavior; i.e. yammering loudly on her cell phone, she texted me constantly from the second floor for various items close at hand. But the straw was when she decided, without consulting me, to remove all of the supplies I had arranged in rows on our empty queen-sized bed, and place them instead on top of dressers, end tables, window sills, and on the floor of the shower hidden by a curtain.

"I wanted the room to look like a bedroom," she explained as she waved her hand atop the empty bedspread.

When the hospice nurse arrived, she shook her head and returned every box of gauze pads, suction tubes, bed pads, disposable underwear, lotions, and dozens of other supplies back to their original spots. "Much better," she said after all was returned. I hugged her.

I talk to my husband each time I enter the room. Once I pulled up a chair to read him a letter. Tommy had written it to me in 1996, two years before we married. By the grace of God, I kept it safe. My husband spoke of love, commitment, promises to care for me -- in beautiful handwriting, two pages full. At one point during my reading, he opened his eyes and looked at me, as if to say, "I remember writing that."

With every visitor that enters the house I say, "I'd like you to read Tommy's letter." Although his words were meant for me, I fear our friends will only recall the Tommy who struggled with aphasia and could no longer speak, who stopped reading mysteries, or who was unable to fix a broken cabinet door. I want them to know the Tommy who was smart, romantic, eloquent.

Many loved ones -- concerned about my well-being and ability to pay for ‘round-the-clock nursing care -- urged me upon leaving the hospital to place Tommy in hospice care in a different setting outside the home. “It will be overwhelming,” they predicted.

In a first email update to this group I admitted, “You were right, it’s overwhelming. But, I am doing it.”

Along with the hired caregivers, I am supported by friends, relatives, and neighbors who visit Tommy and me, who bring food and offer to handle any needed tasks. I have doled out assignments, from picking up Chicago hot dogs to taking my Honda Fit in for servicing.

We will get through this. Meanwhile, we keep watch for an untroubled brow.


  1. I don't have any words to describe how beautiful you are capturing this moment in time. Just know that I'm thinking of you.

  2. Elaine, I’m saddened to hear about Tom. I have exchanged so many warm smiles with your husband at the Lake View Y where I work. I as well as other staff here have cherished Tom's friendliness. I admire his commitment to fitness and his commitment to living life fully all the way until the end. I’m blessed to have crossed paths, even in such a simple way, with a man who really lived his life, who truly loved his family and friends, and who taught all a lesson on how to be resilient. Thank you for continuing to share his story. On behalf of my coworkers, our positive thoughts are with you.

    1. Andrea, thank you so much for writing. It is wonderful to have a picture of Tom at the Y. It was such a beloved place for him. I'm so glad to learn he had many friends and admirers there.