Living in the Land of Limbo

This is not an impartial review. I’m a great admirer of Carol Levine’s work on family caregiving. Though we’ve never met in person, Carol has written seven terrific posts for Over 65. But despite my conflict of interest, I guarantee that if you read Living in the Land of Limbo: Fiction and Poetry about Family Caregiving, the book she compiled and edited, you’ll agree with me that it’s gripping and original!

The 35 stories and poems are organized into five sections based on the relationship of the caregiver to the person needing assistance: children of aging parents; husbands and wives; parents and sick children; relatives, lovers, and friends; and, paid caregivers.

The introduction tells readers the “story behind the stories.” An automobile accident left Carol’s husband Howard quadriplegic, and she tells us:

…in the seventeen years I cared for Howard at home, I found myself turning more and more to poetry and short fiction as a source of solace and a way to gain meaning from what sometimes seemed bereft of meaning…I found I learned more about myself and my situation from these unlikely sources than from the more conventional coping literature.”

Most of the readers of Over 65 have probably had at least some experience of caring for a family member, and know how complex and demanding it can be technically, logistically, and emotionally. I found every one of the stories and poems engaging. I’ll comment on three to give a bit of a sense of how the book affected me.

● As an only child who was responsible for helping his father navigate the end of his life, and as the father of two sons who aren’t far from the age I was at when my father began to decline, I read David Mason’s poem “Fathers and Sons” with a strong feeling of solidarity. The poet tries to get his father to sit down on the toilet, but his father insists on standing:

…I tried again
to bend him toward the seat,

And then I laughed
at the absurdity. Fathers and sons.
How he had wiped my bottom
half a century ago, and how
I would repay the favor
if he would only sit…

Unlike David Mason’s father, when my own father needed to have his bottom wiped he cooperated and seemed grateful. And when one of my sons, as a two year old, deposited an enormous bowel movement in his diaper on a flight from Amsterdam to Boston, I took him into the bathroom, stood him on the sink, and told him “I need your help to get you cleaned up.” He got the message, and stood stiller than a statue while I cleaned him. I hope I’ll be able to care for my own bottom until I depart from the earth, but we have a finite say in what cards will be dealt to us. If I’m not able to manage my own bottom, I hope my sons have access to David Mason’s poem, and will be able to laugh at absurdity just as the poet did.

● In Mary Gordon’s story “Mrs. Cassidy’s Last Year,” Mr. Cassidy feels bound by the promise he made to his wife long ago that he would let her die in her own bed. But now his wife has turned into a bad-acting, hate-laden monster.  Here’s how the story opens:

“Mr. Cassidy knew he couldn’t go to Communion. He had sinned against charity. He had wanted his wife dead.”

Mr. Cassidy would like to be able to laugh at absurdity the way the poet in “Fathers and Sons” does, but he can’t do it – his he’s too upset by his wife’s anger and violent behavior. She throws her food on the floor, spits out the medicine he tries to persuade her to take, curses him, and knocks him down, breaking his leg. His son and daughter-in-law urge him to put her “away.” They tell him “she’s not the woman she was. Not the woman we knew.” But to Mr. Cassidy “she’s the woman I married,” and he feels bound by his promise.

My late father-in-law made a similar promise to my late mother-in-law. Creating a home hospice environment before home hospice was a recognized practice took great effort on his part. Luckily, he was able to afford hiring additional help. Unlike Mrs. Cassidy, my mother-in-law appreciated what was being done for her and radiated love as her life waned.

We Americans like to think of all problems as solvable. But they’re not.  At the end of the story Mrs. Cassidy is wandering down the middle of the street outside the home while Mr. Cassidy, unable to move because of his broken leg, breaks the windows, trying to get someone to help her. The story takes us into questions about the limits of loyalty, and how much one individual should sacrifice for another.

● David Mason’s poem spoke to me as a father and son. Mary Gordon’s story spoke to me as a spouse. Lorrie Moore’s “People Like That Are the Only People Here” spoke to me as a physician. The narrator of the story is a mother, whose discovery of blood in her baby’s diaper leads to a cancer diagnosis, surgery, and for the moment, watchful follow up without chemotherapy. The narration combines gallows humor and unbearable personal pain. As in a medieval morality play the characters are defined by their role, not by name: the mother; the husband; the baby; the surgeon; and, more.

The story evoked memory of an incident from thirty years ago where I was inadvertently like the hurtful health professionals described by “the Mother.” I was walking around the medical facility I was in charge of and came upon a couple, obviously in distress. I stopped to talk with them and learned that “the Husband” had just received a diagnosis of Hodgkins Disease. Until the director of the facility (me) received a complaint about the cruel and insensitive person who had spoken with them, I’d felt that I’d “ministered” to them in a caring and compassionate manner. Those were my intentions, but if “the Wife” had been Lorrie Moore, I would have figured in the story as “the Doctor,” clueless and hurtful. I believe that in a videotape of my conversation with the couple my “performance” would have looked “good,” but I entirely missed perceiving how I was being experienced.

As I said above, I guarantee that the stories and poems Living in the Land of Limbo: Fiction and Poetry about Family Caregiving will have rich personal meaning to anyone who has been involved with or is otherwise interested in family caregiving.

Jim Sabin, M.D., 75, is an organizer of Over 65, a professor of population medicine and psychiatry at Harvard Medical School, and a Fellow of the Hastings Center.

3 Responses to “Living in the Land of Limbo”

  1. Carol Eblen

    I’ve read some of Carol Levine’s articles and she really gets it!

    Having been the primary caretaker in the Hospice situation for my Mom and and for my Husband in the nine months that he was ill, and the week that he was in Hospice,I know that Hospice helps but that those 24 hours a day become the responsibility and the burden of the primary care taker who is on duty 24 hours a day. And when it’s family, your Mom, or Your Husband, there is no escape from the worry and the grief and always, the thought that, ” please, dear God, it’s too soon,” or, “please, dear God, it is not soon enough!” is often on your lips.

    My husband and I were both old when we took care of my Mom who was on Hospice for 29 days, and who died at 104-l/2. My husband helped me to change and clean her when my daughter or the Hospice person wasn’t there. He loved her and did this for her and for me. She would have died many years sooner if we hadn’t fought her Advantage Insurance to keep her alive. She slept into death but her heart was so strong that it took much longer than Hospice anticipated. After a 24 vigil at her hospital bed in the family room, I told the Social Worker (the only Hospice person who was available because of a busy “dying” weekend) that I needed to lie down in my bed for just a minute. I lay on the bed for just a second and closed my eyes and the social worker knocked on the door. She said “She’s gone!” Mom always loved to surprise “Gin” on me after just a few cards had been drawn. She was just waiting for me to leave her side!

    Mom came to live with us when she ws 93 and gave up her driver’s license. I had a bridge luncheon for her when she was 101! She was always independent and willful and smart and clever and pretty and my husband and I were also old. I was 72 and my husband was 79 when she first came to live with us so she didn’t cramp our style. We had traveled the World and were happy to stick around our house and do more simple things to entertain ourselves.

    We were all old and on Medicare and compatible. We had many happy years together doing things we all enjoyed.

    My husband’s Mom, Sarah, had lived with us off and on for years but returned to Canada to die because she said it was cheaper and her roots were there. We loved Grandma Ritter too. She was a retired Nurse and when we went to Germany where we would be stationed for three years, we took her with us. She was old school and didn’t drive and my husband was her only child. Fortunately, we were good friends and got on well and only got into it now and then over the children or for her having “one too many.” She was a proper lady and had never had a drink until she was in her late 40’s and would sometimes try to make up for all those years that she missed that “pink glow” at twilight time.

    When I took care of my Mom those years after 99 when she needed help in some of the activities of daily living, we would consult and innovate. She carried normal weight until the last year. She had to wear a diaper but i couldn’t turn her or lift her in the bed but she had upper body strength and could get out of bed and stand with assistance and then she would bend over the Hospital Bed and then I could easily clean her private parts and diaper her from this position. I could get her to the commode in her bedroom with the wheel chair and she would swing into the commode from the wheel chair. She always tried to use the commode to make less trouble and work for me whenever possible. Sometimes, I feel guilt because I was sometimes not kind and actually “mean” when I was tired but most of the time I coped and our love for each other got us though the hard times. My kind and wonderful husband was always such a help and he loved her too. My kind and wonderful daughter would get INTO the shower with her Grandmom and wash her hair once a week for the last five years of Mom’s life.

    My husband’s death was very hard for me and for him but it was really only a matter of months —from September until June of the next year that he was fighting a terrible kind of cancer and he did stay on his feet by using a walker until the last ten days of his life. He hated that I had to do so much for him. We had promised him that he would never go into a Nursing Home, I was lucky! My son lived in the house, downstairs, and become proficient in servicing his trach tube and in helping me. My daughter also helped as did our youngest son. I couldn’t have kept him at home without their help. My husband had a sweet and loving nature and was always kind and good to me and the kids and his paid caretakers, as well. We did have Nursing Home Insurance and he had one CNA, Jean, who came into the house whom he would allow to help him shave and dress. He was on a catheter until the day before he died in Hospice. He was always so proud that he could handle his own bowel movements. He was on a feeding tube so this BM was one of the “main events” of the day that he celebrated alone on the commode in our bedroom. When ssuccessful, he would return to the family room with a big Grin on his face and a “thumbs up” and say laughingly well “you can’t tell me I’m full of shit today!” In my husband’s six hospitalizations in those nine months, he was always so proud that he didn’t soil the hospital bed. I made sure that they had a commode right next to the bed and we stayed with him to make sure that he was put on the commode and I had to push for and request the treating physician to request PT to walk him everyday so that he could stay on his feet.

    You know, of course, that if my husband had fallen and broken something, that hospital falls are NOT reimbursed by Medicare/Tricare for Life to the hospitals. Another hospital had already tried to hasten my husband unto death with a unilateral covert DNR so this was always on my mind. It would have been much easier for both Tom and if the physician and the hospital hadn’t lied to us and betrayed our trust and if we hadn’t found out that they were killing the old people to save money in “end of life care.”

    I blog on this Over 65 Blog to WARN and to BLAME those who somehow failed to protect the Medicare/Medicaid Safety Net for the people and instead sold out to Big Insurance, Big Pharma, Big Medicine, and Big Medical Supply.

  2. Jim Sabin

    Dear Carol

    Thank you for the wonderful family stories. I laughed at your mother springing “Gin!” on you, and remembered my elderly aunt, who, in similar fashion, loved to “knock” when I still had lots of points in my hand. And I laughed again at your account of your husband’s pride in his BMs. Memories of this kind are treasures for us.

    By now you’ve warned readers adequately about your concerns. No need to repeat. But your stories of caretaking are a gift.