The last time I saw my mother

Me and my mother, circa 1964

Me and my mother, circa 1964.

My mother’s last words to me weren’t words, but a wan smile and wave.

She was propped upright in bed by an armada of fluffy pillows tucked inside starched white slipcases. Her blue, flannel nightgown was a hand-me-down from her own mother; she loved it so. It was as crisp as the slipcases.

The hospice workers changed her bed sheets every four hours to keep her comfortable because my mother loved the smell and feel of laundered linen. She looked like a used toy nestled in a new package.

I had flown home to sit by her bedside when she was awake and tidy up her affairs when she wasn’t, which was often. A few days earlier, in a long and tense phone call with my uncle, I had agreed with him that she would never leave the hospice, and that the clean sheets and pain medication were the only things left to offer.

“I know you’ve been busy,” my uncle said. “But maybe you should come see her as soon as you can.”

This was a frequent refrain. For months, my mother seemed on the edge of the abyss, then I would visit and she would pull back, just not far enough to get her out of hospice. I had mounted each trip to see her as if it were my last.

Something’s different this time, my uncle said. He was by my mother’s bedside two days earlier trying to engage her, trying to determine if she was still aware of the present amid her incomprehensible mumblings about the past. The conversation was, as usual, one-sided, until my mother halted mid-mumble, looked at him and said with unusual clarity, “I’m never going to leave this place, am I?”

When I arrived straight from the airport, she was sleeping so deeply not even the hospice workers could rouse her. A desert breeze wafted through open windows to freshen her small room.

“She does that,” a hospice aide told me, shrugging. “One day, she’s awake and her appetite is good. Next day, she sleeps through everything and won’t eat. It’s getting harder to wake her when that happens.”

She slept through the first day of my four-day visit and the second. On the third, she was awake when I arrived in the morning. We talked – rather, she talked, and I tried to make sense of what she was saying. Much of it seemed to be about her upbringing in Utah and Hawaii, about her own uncles and aunts and cousins I never met, about events that occurred more than generation before I entered the world.

The whole time she talked, I was one of those uncles or cousins. She spoke as if I had been a witness to each event she recounted.

“I’m David, Mom,” I repeated several times that day. “I’m your son.”

At each, she would bunch her brow, look at me and say softly, “Oh.”

At each, a knot formed in my chest.

The fourth and final day of my visit started like the first two. My mother was deep asleep and stayed that way past noon. Attendants bathed her and changed her bedclothes, yet she did not stir. My time with her was trickling away. I looked around the room at the few belongings she had left – a framed watercolor that once hung in my grandmother’s house; pictures of my uncle’s children and a 20-year-old picture of me; a gray, stuffed cat that resembled her real cat, which she had to give up upon entering hospice. I bought the stuffed cat when she began spending more time in hospitals than at home.

At last, an hour before my flight was due to leave, she opened her eyes and stared at me. No words, just a long stare from eyes that were tired and dark and dull. I tried spurring conversation by recalling pieces of the broken stories she had strewn across her mind. I pointed to and described the watercolor, the family pictures, the cat.

Nothing.

Finally, I rose to leave and leaned over to kiss her forehead. Her skin was smooth and cool. Her white hair was pushed against the pillow. I pressed her knotty hand into mine.

“It’s time for me to go, Mom,” I whispered. “You take care of yourself. I’ll be back to visit very soon.”

I headed toward the door, and as I opened it to leave I turned around to wave goodbye. She had raised her hand slowly to wave back, grasping at the air as if reaching for a knob. The sagging corners of her mouth turned up and her lips formed a slight smile. For a moment, my mother’s eyes also appeared to brighten.

I have thought of that moment each Mother’s Day since. I probably will remember it each Mother’s Day hereafter, and I wish I had swept up and bundled as many better memories of her that I could summon.

But the smile and wave told me more than all she had tried to say in words. For in that instant, I believe she remembered who I was, why I was there, and what I meant to her.

And there were no words that could express those things any better.

The best birthday gift for my mother

Hospice careMy mother just had her 78th birthday. She doesn’t know it though.

If I or anyone told her, she still wouldn’t know it. She’s past the point of understanding or caring.

Earlier this year, Sandra Kay Sheets, ravaged by an untold number of strokes, entered hospice. Now, three nice nurses monitor her all day. They bathe her, change her bedding, administer pain medication and feed her three squares daily. Or try to; Mom loses interest in food after one spoonful.

In the evenings, she picks gingerly at the edges of her bed sheet and mumbles about distant memories, though from what I can interpret, those memories involve times when she was young and vibrant and happy.

She is among the estimated 1.7 million people nationwide who receive hospice care, according to the National Hospice and Palliative Care Organization. However large that number sounds, it’s double from a decade ago as palliative care expanded beyond its original intent of serving terminal cancer sufferers to include patients diminished by other diseases.

My mother entered those statistics because she was in and out of hospitals and rehabilitation centers after her initial attacks, with varying success. Her health trended up and down, but never improved enough for her to regain a clear perception of the world around her. My uncle and I, who share legal responsibility for her care, began measuring her status by the number of moments we thought she knew who we were.

That number is down to the low single digits.

“Hospice care is designed to address the needs of the entire family,” writes Sheryl M. Ness, a nurse educator specializing in end-of-life care, in a blog for the Mayo Clinic in Rochester, Minn. “The focus of hospice care isn’t to treat or cure the underlying disease, but to provide the highest quality of life for whatever time remains.”

Because of that, more dementia sufferers continue entering hospice. By 2011, cancer diagnoses constituted just 33.7 percent of all hospice admissions, with dementia topping the list of non-cancer diagnoses at almost 13 percent of the whole, according to NHPCO findings.

“As the average life span in the United States has increased, so has the number of individuals who die of chronic progressive diseases that require longer and more sustained care,” the NHPCO says in its 2012 analysis of hospice care nationwide.

At first, I resisted putting my mother in hospice, her health decline notwithstanding. For one thing, “hospice” is synonymous with “terminal” in our culture, and I wasn’t ready to ascribe that term to her condition.

For another, I, like most everyone, was inculcated to believe that “cure” and “care” were synonymous, too, and that both extended across the breadth and depth of modern medicine.

But then I witnessed the exhaustion among overworked doctors and nurses at hospitals and the relentless workload at understaffed rehabilitation facilities along each step of my mother’s treatment. I realized then that “cure” and “care” can be exclusive of one another where cost, time and patience force a choice.

So, my mother reposes in a place devoted to her needs, such as they are. She can’t move, so the nurses move her to prevent bedsores. The nurses change the TV channels for her, brush her hair, talk to her, tuck in the stuffed gray kitten I bought because it resembled her own cat.

Her express respite care instructions, dictated by her when she was clear-minded and accepting of the likely course her condition would take, discourage much else.

When I visited her last, my mother looked through me to the reality she selected. At various times, I was her son, her brother, her uncle. One afternoon, she worried about the state of her wedding dress. Another afternoon, she worried about the cleanliness of an outfit I was supposed to wear in a parade.

It took me awhile to realize she was talking about a parade I was in at age 5.

I indulged her and said not to worry; the outfit was clean and ready. She said “OK,” then settled into sleep.

For this birthday, peace of mind was the best gift I could give.

__________

Update: Sandra Kay Sheets died Aug. 20 of complications from a series of strokes.