On January 30, 1977 Frank Anderson wrote a newspaper column “Growing Old.” I’ll ramble here for a few minutes, and then I’ll include his article.
I’ve had so many sleepless nights and interminable, tedious days this last long week, and as rest has been elusive at night, crossword puzzles and reading have distracted my brain from the reason I am in my parents’ house again. My father is dying. My mother will sell the house after his death; too big for her now as she leans on her walker to steady her gait.
In the bedroom, now stripped of the queen size bed they shared, lies my father, soon to be 82, in a hospital bed; so frail, eyes partially open but not moving, breathing so labored, and then every so often the breathing stops, apnea takes over, and I wait. I wait and count, 30 . . . 35 . . . 40 . . . 45, 46, 47, 48 – suddenly my father gasps a loud gasp as his lungs fill again. But his time is short. The apnea occurrences quicken.
I can’t resist showing each hospice worker who they are caring for; the young couple in their 20s, so in love, so full of life. The pictures look like two movie stars. Everyone says so. They can’t believe the pictures are of my parents. Every time we have had to put Dad in a nursing home I’ve taken the pictures to show the nurses, the caregivers, the janitors, the administrators, anyone who will look, for whom they are really caring. The elderly man with contracted legs and hands gnarled with arthritis lying in their bed, so often is treated as just a living bag of temperamental bones. They have too many patients in the same condition, with a twist here and there. Some are bed bound Christmas trees; ornaments adorn their bodies in the form of tubes and bags, IVs and bandages, still alive because of their decorative affair, but abandoned in a nursing home by family too overwhelmed to care for their beloved parent who would require more care and attention than they could give.
Some families, due to their own infirmities, are unable to care for their parent or spouse at home. So crushed is their heart to know the nursing home is the best care they can give. Yet they visit everyday and stay for hours and hours, loath to see the poor and scattered care their beloved is receiving, the relative doing what they can do to comfort their spouse, their child, their parent, and hoping that just their presence is enough to make the nursing home bearable.
Some patients have nearby family who make a journey once a week to give them a 10-minute visit, doing their duty in metered time, wearing the badge of courage that they never miss a weekend visit with their parent. But they don’t mention it was on their way out of town or to a cocktail party, to a baseball game or a get together elsewhere. It wasn’t that specific drive from home to the care center, a long visit, and then the drive home. It’s always combined with something else.
Some patients have no family, either long ago divorced from a spouse or widowed by their death and no children near them to help out. Though some patients have their directive regarding their final wishes well placed in their trust documents with children aware that they want to die at home, their wish will be dismissed as too difficult, too time consuming, too burdensome to family members. They would console themselves by saying, “Yes, but, of course, Mom or Dad wouldn’t want us to take them home if they knew how sick in the end they would be, how difficult their care would really be on our family.”
There are the patients who are fully functional physically, but Alzheimer’s or vascular dementia has taken their minds, minds once so vibrant and creative, inventive and inspiring, now lost to scattered thought, atrophied by brain wasting, from a disease that by far and away out-competes anything else they might have wrong with them. This disease steals their memories of loved ones, of days gone by, of tender moments, and in its place leaves anger and rage, combativeness and sometimes a broken record; making them repeat the same thing over and over and over again. As time passes it narrows the span of the repeated topic from a story they would repeat again and again, to just a phrase that their mind reruns and reruns, and as the gap of thought process closes it is then just a word. Just one word they repeat. In a word, they are the mentally dead.
My family knew the end of life directive for my father, and we brought him home three years ago, with repeat returns to convalescent facilities when he contracted pneumonia, or couldn’t be cared for while my mother lay in bed or sat for four months, unable to ambulate due to a hip operation she had put off too long. She had been afraid if she had the operation he would not do well. In the end instead of being up and about in a month or so, she was confined to a walker for the rest of her life. The damage was too great. Cadaver bone was all that held her hip together now. In the end Dad failed to thrive and his brain continued to waste away, and only briefly, occasionally it would allow us a glimpse of the father we had once known and always loved.
Hospice just left. It is now important to let him sleep until he dies; we mustn’t allow him to awaken into the agitation that racks his body at all hours of the day and night. Night time is the worst; awakening the monster within him to yell and holler, to demand that I get him up, sometimes striking out at me with his crippled hands. Worse is when he hates me. One night this week he threw everyone out of the room, with contempt and disdain for our very existence. But the hardest was the decision to administer the drugs that hospice recommended; the drugs that would put him under until death took his hand. I gave the first dose to bring this endless sleep about. I didn’t want my mother and siblings to carry this memory so I chose to be in charge of giving the drugs to him. If he did awaken into his confused and frustrated state, I needed to tell him I couldn’t get him up, even though he demanded it in his confused state. Daddy was unable to sit up, unable to stand, unable to balance himself. But he couldn’t understand that fact. In his own mind he could get up but in truth he was bedridden. My heart broke as he swung his crippled hands at my face for not doing his bidding, for trying to put an eyedropper of medicine in his mouth. He could no longer swallow. The permanent sleep would be welcome.
Drugs are a funny thing, though. They work for some people, but because of liver disease or other compromises, some patients do not metabolize the drugs, and they don’t sleep; they rage and hit and yell and hate. I feel hated now. He won’t let me touch him when he is awake, but the other family members can. How I crave one more pucker from him, one more smile, one more hand squeeze, but it is not to be; not yet, but maybe in the end just before he finds peace. Right now the things I desire most are only for those who are not the warden. Maybe in the last hours as he lies quietly, something, some fragment of a memory of me will come forward and he will squeeze my hand.
We have 24-hour care, two shifts of 12 hours. Sonya has been with us for a couple years now; a wonderful young woman and mother of two; so patient, so attentive and kind, not just to my father, but to our whole family. We will keep her on for my mother after Dad is gone. The other special caregiver is Indira, a very compassionate lady from Russia.
But we have been through probably 30 caregivers in order to arrive at this point. From November to now, September, Daddy’s dementia has made caregivers decide this is not a house to which they wish to return. Kelly walked off the job calling my father a bigot, leaving my mother and father to fend for themselves one night. She had been fully briefed regarding his dementia and the things he might say. Her agency fired her immediately, to her surprise. She had been with them for a substantial amount of time.
But the most difficult thing with caregivers is the number who view their job as a sleeping job, exhibiting indignation when asked to do a chore or when caught sleeping, having been hired to stay awake all night, a known part of the job. They are the lazy ones; a bad habit some pick up after caring for a vegetable or Christmas tree. They learn there are jobs out there where they don’t have to do anything.
There are those who are TV addicts. Once they’ve changed the diaper they turn on the TV; cartoons, soap operas, the brainless sitcoms with the canned laughter to convince the audience that what is presented is supposed to be funny. Or they bring their Game Boy.
But then you find a Sonya, an Indira, and you are glad your parent is home in their final days, for these caregivers know the secret of the person who has been entrusted to their care. And here is where Frank Anderson’s column comes in. It reminds all of us of the “secret” of those who grow old. It was originally written January 30, 1977 and was reprinted Wednesday, October 6, 1982, in the Press-Telegram. The ending of his article I will omit, as it is the poem that is the message to all. Frank’s column opening and the old woman’s poem are presented now.
She’s gone now from the nursing home where she spent her last years, a memory to the few who cared, her sole legacy a poem the nurses found among her effects. It read:
“What do you see, nurses, who do you see?
“What do you think when you’re looking at me?
“A crabby old woman, not very wise, uncertain of habit, with faraway eyes;
“Who dribbles her food and makes no reply,
“When you say in a loud voice, ‘I do wish you’d try.
“Who seems not to notice the things that you do,
“And forever is losing a stocking or shoe.
“Who, resisting or not, must do as you will.
“Is that what you’re thinking, is that what you see?
“Then open your eyes, nurse, you’re looking at me.
“I’ll tell you who I am, as I sit here so still.
“As I do your bidding, as I eat at your will.
“I’m a small child of 10 with a father and mother, brothers and sisters who love one another;
“A young girl of 16, with wings on her feet,
“Dreaming that soon now a lover she’ll meet.
“A bride soon at 20, my heart gives a leap, remembering the vow that I promised to keep.
“At 25, now I have young of my own, who need me to secure a happy home.
“A woman of 30, my young growing fast, bound to each other with ties that shall last.
“At 40, my sons have grown and are gone, but my man is beside me to see I don’t mourn.
“At 50, once more babies play round my knee, again we know children, my loved one and me.
“Dark days are upon me, my husband is dead;
“I look to the future, I shudder with dread.
“For my young are all rearing young of their own, and I think of the years and the love that I’ve known.
“I’m an old woman and nature is cruel, ‘tis her jest to make old age look like a fool.
“The body it crumbles, grace and vigor depart;
“There is now just a stone where once I had a heart.
“But inside this old carcass a young girl dwells, and now and again my battered heart swells.
“I remember the joys, I remember the pain, and I’m loving and living life over again.
“I think of the years, all too few, gone too fast, and accept the stark fact that nothing can last.
“So open your eyes, nurses, open and see – not a crabby old woman,
“Look closer at me.”
Frank’s publication of the old woman’s poem is a reminder to us all that to the last moment we should all know such love from not just family members, but from those working in nursing homes. And it should also be a stark message to family that as Dorothy so aptly made clear in “The Wizard of Oz,” “There’s no place like home.”
Bring them home if you can, bring them home. Hold their hand for more than the 10 minutes your day can afford. Talk to family members and see if possibly you can pool your resources, not just monetarily but in alternating as caregivers. The Marines do not leave fallen brothers. It is our job as children in the end to pick up the gauntlet and do the same.
Written by Robin M. Williams
Credit to Frank Anderson and “Growing Old”
Richard Sweinhart, a sailor, a husband, and father, passed away peacefully in his home in the early hours of a September morn. Before he left us forever, I received one more squeeze of my hand.. Our thanks to Companion Hospice Care and All Home Services. If you wish to publish it in your own periodical, having read it elsewhere, please contact me at firstname.lastname@example.org.