Having never raised a child nor nursed anyone who suffered from anything more complex than a bad flu, I was ignorant of what 24/7 caregiving entails, particularly over many weeks and months, and I didn't have the wit, as I prepared to move my life from New York City to Sacramento, to imagine much beyond administering pain medicine and holding Mom's hand.
My job, as I loosely articulated it to myself, was to help my mother get from life on earth to whatever comes next in the best way possible by her standards. I still think that's a pretty good goal for anyone caring for a loved one at life's end, but it doesn't have anything to do with the particulars of the day-to-day reality.
On my first morning in Sacramento, I went into Mom’s room with a basin of warm water, soap, a clean washcloth and towel. Mom was awake, sitting up and appearing much recovered from the fading invalid I’d encountered on my arrival the night before. She wasted no time before shocking me silly.
“Here,” she said, dropping something in my hand. “Would you clean these for me.” There in my palm were her dentures – uppers and lowers. In my shallow understanding early on of what caring for an invalid requires, it took all my will power not to recoil in disgust. I soon learned, however, that it is in the nature of caretaking that such a need is child’s play. A sick body has a much wider repertoire of messy indignities to inflict than false teeth. The only possible response is - get used to it.
And I did. By the next morning, I was holding out my hand: “Give me your teeth, Mom. I’ll clean them.” Even so, my shiny, new caregiver attitude was tested daily.
During the week following my arrival, Mom rallied. She could, with my help and the walker left over from her hip replacement a decade earlier, get out of bed and into the living room, dining room and backyard, though I wondered if she was doing it more from lifelong habit than desire. Soon she stopped trying except to use the toilet which she could do if I helped her get from her bed to her bathroom and back again. When even that walk became too difficult, I rented an item I had never heard of before: an adult potty chair. It worked for awhile, but before long Mom became incontinent, a development thrust on us the night I changed her bed sheets four times. I dreaded what I knew was the only solution.
How do you tell a 75-year-old woman, one who has always been defiantly independent, who happens to be your mother and who is dying of cancer but still has all her buttons, that you’re going to put her in diapers? It’s a question I would, in the abstract, be capable of mulling over for days, weighing just the right words and approach. But I had already learned that because enough unexpected things go wrong every day with a diseased and dying body, you just make a decision, execute it and move on to whatever surprise comes next.
Tact is not one of my strengths so it seemed magical to me how easily we discussed diapers without fuss or discomfort. I like to think that for once I chose my words well, but it is more likely that Mom’s desire to lighten my burden in the circumstance made the difference.
I somehow came up with jokes that got us through those first tentative cleanings, powderings and diaperings, and soon the jokes were unnecessary. In meeting Mom's needs and desires around the clock, there was no time to get hung up on the ick factor, and within a couple of days changing diapers became as commonplace as cleaning her teeth. Mom and I hardly noticed either among so many other daily demands on our time.
In my ignorant "before Mom" era, I had never once considered the time, effort and emotional strength required of fulltime caregivers. You are on call 24 hours a day. There are no weekends off. Your patient is, to whatever degree, dependent upon you for all or most needs for living. You become exhausted but cannot stop because the disease will not be denied its claim on the body. Love, respect, and sometimes only the fear of the guilt you will be stuck with if you slack off, drive you to keep going day after day, night after night.
I did this for three, short months and I knew up front there was a not-too-distant end point. Some people do this for years, for decades - unsung, unacknowledged and unrewarded beyond their personal satisfaction. My admiration and respect for them and for professional caregivers whose patients are not even family is now boundless.
…to be continued…
A mother's final, best lesson: Part 1
A mother's final, best lesson: Part 2
A mother's final, best lesson: Part 4
A mother's final, best lesson: Part 5
A mother's final, best lesson: Part 6
A mother's final, best lesson: Part 7
A mother's final, best lesson: Part 8
A mother's final, best lesson: Part 9
A mother's final, best lesson: Part 10
A mother's final, best lesson: Part 11
A mother's final, best lesson: Postscript