Dirty Details

Dirty Details

marion deutsche cohen
foreword by marty wyngaarden krauss
Copyright Date: 1996
Published by: Temple University Press
Pages: 224
  • Cite this Item
  • Book Info
    Dirty Details
    Book Description:

    In 1977, at the age of 36, Jeffrey Cohen, a physicist at the University of Pennsylvania, was diagnosed with multiple sclerosis. But it wasn't until 10 years later that the "dirty details" began, when the disease had progressed to the point where he could not transfer himself out of his wheelchair. That point is where his wife Marion begins her memoir of caregiving: "If I had to explain it in three words, those words would be 'nights,' 'lifting,' and 'toilet.' And then, if I were permitted to elaborate further, I would continue, 'nights' does not mean lying awake in fear listening for his breathing. 'Lifting' does not mean dragging him by the feet along the floor. And 'toilet' does not mean changing catheters."

    But "dirty details," Marion Cohen teaches us, involves more than "nights," "lifting," and "toilet." There is the loss, anger, fear, and desperation that envelops the family. She reveals what it felt like to be consistently in "dire straits" with no real help or understanding, what she characterizes as society's "conspiracy of silence." Chronicling their lives in the context of her husband's progressing disease, she discusses the raging emotions, the celebrations, the day-to-day routine, the arguments, the disappointments, and the moments of closeness. During the 15 years she cared for him at home, both continued to work on various projects, share in the rearing of their four children, and be very much in love. This powerful, honest narrative also delves into the process of making the "nursing-home decision" and those decisions Cohen made to put her and her family's life together again.

    eISBN: 978-1-4399-0373-5
    Subjects: Sociology

Table of Contents

  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-vi)
  3. foreword
    (pp. vii-x)
    Marty Wyngaarden Krauss

    Dear reader, be prepared. This is a powerful and stirring book. It is unsparing in its honesty, its bluntness, its directness. Marion Cohen pulls us, willingly or not, into the daily life experiences of being the well spouse of a person with a debilitating and messy disability. She does so with little patience for the obfuscation of the harsh realities of transportation, communication, dressing, feeding, and, indeed, toileting that so frequently accompanies other tales of care giving. This book is almost a rebuttal to the comforting impression held by so many that there is a nobility in care giving that...

  4. preface
    (pp. xi-xviii)
  5. one the trike and the 49 bus
    (pp. 1-14)

    We had it down pat. As soon as I’d hear that “Mar!” I’d yell back “Okay!” so I wouldn’t have to hear it again. I’d hear it again anyway. “Mar! Toilet!” I’d sink; I’d shrug; I’d tantrum, to myself or aloud.

    I’d race up the stairs and down the hall to Jeff’s wheel-chair, which we called “the trike.” I’d unlock both brakes at the same time, spin around to the back, zoom through the two doors, enter the bathroom backwards and swing clear of the sink, then spin around in front and lock both brakes at the same time. As...

  6. two nights, lifting, and toilet: the first conspiracy of silence
    (pp. 15-31)

    Several friends don’t understand why, at Inglis House, they don’t put Jeff on the toilet, why they just wait for him to go and then clean him. They think that’s terrible. But I’ve done toilet, and I know why.

    I also know about the way they do handle it at Inglis House. That’s no picnic, either. Only too well do I remember those nights, sometimes two or three times a night, never just in the bedpan, or even on the towel underneath the bedpan, but always on the sheets—both the top sheet and the bottom sheet—and sometimes on...

  7. three dire straits
    (pp. 32-46)

    The period from Jeff’s diagnosis in 1977 to mid-1988, when Jeff could no longer transfer from and to the wheelchair, might be described as one of stress. But during the nearly six years from then until he went into the nursing home, we were in full-blown dire straits.

    Well spouses don’t suffer ordinary stress; we do not need stress-management workshops. Calling dire straits stress undermines well spouses and makes us feel alienated and confused about where we stand. Jeff and I would watch movies about young love, or old love. When these movies were interrupted by toilet, I’d remark, “No...

  8. photo gallery
    (pp. 47-70)
  9. four scared
    (pp. 71-85)

    I was scared. Scared about specifics, like what if Jeff fell on the floor and there were no attendants around to help get him back up (something that actually happened several times)? And scared in general—the kind of scared when you’ve just started a new job or had a new baby, and you don’t quite know what you’re scared of.

    “You’re one body in charge of moving two bodies,” Bret would say at age about eleven.

    “It didn’t feel secure,” our daughter, Marielle remembers now at twenty-four. “We could never plan anything. There were so many factors that could...

  10. five too many variables: relationships within the household
    (pp. 86-109)

    What happens to love when the lovers are forced together, in close quarters like a bathroom, or a toilet? What happens to love if the lovers are Siamese twins? Or when one of the lovers is a Siamese twin–with his attendant? What happens when one of the lovers is, in twelve-year-old Bret’s words, in charge of both bodies? If the two of you were the only ones left in the world, what would happen to love, even without that one-sided dependency? What happens to love during just plain hard times, temporary hard times, when things are simply not going...

  11. six a separate species: relationships with the world and with ourselves
    (pp. 110-126)

    Well spouses often talk about how old friends no longer come around. They add that they no longer feel comfortable with old friends, and they can’t make new friends because they never go anywhere. “We don’t fit in with married couples,” they continue, “nor are we exactly swinging singles.” Saying things like this, some of them have tears in their eyes.

    My own experience has been slightly different. While I have contended with some of that isolation, I have also had many good friends who have listened, if not understood. Moreover, many of my friendships have been enhanced by my...

  12. seven preparing for his ghost: about loss
    (pp. 127-138)

    About five years ago Sophie, a new friend who is an artist a generation older than I, had me over for lunch. Her apartment was beautiful, enhanced by and integrated with her sculpture. It came out that she had been a well spouse for thirty years. “First it was heart attack,” she told me, “and it was at a time when doctors were advising him to take it easy—”

    “Which meant,” I interjected, “you taking it hard.” She nodded.

    “Then it was Parkinson’s,” she continued. “And next . . . well, I now believe it was Alzheimer’s.”

    We talked...

  13. eight where do we stand? the second conspiracy of silence
    (pp. 139-166)

    Where do we stand? It took me years to voice this question in this way. Meanwhile I asked other questions. Vague, silly-sounding, perhaps childish and self-centered, groping questions. Suppose I was so tired from lack of sleep that I couldn’t think clearly? Or couldn’t think at all? Suppose I was like two women in a long-ago dream, encased in glass, seen but not heard, not felt, not even sensed? Then would it be meaningless or ridiculous for friends, relatives, social workers, and sometimes even other well spouses to say, “You have to help yourself”?

    Suppose it’s impossible for us to...

  14. resources
    (pp. 167-167)