QUADRIPLEGIC CARE AT HOME

Am I really Director of Nursing at the Cooper residence? A retired physicist and former faculty member of the Harvard School of Public Health, I acquired this position out of necessity, when my beloved wife, Tina Su Cooper, was to be sent from the county hospital’s Critical Care Unit (CCU) to a hospice or to our home, after her 100-day battle with pneumonia and its complications, caused by an exacerbation of her multiple sclerosis. The doctors’ prognosis: she had a few months to live. The Coopers’ outcome: we have done seven years successfully of quadriplegic care in the TLC (Tina-Loving Care) unit at home. This is part of the story. The rest is in our book, Ting and I: A Memoir of Love, Courage, and Devotion, published by Outskirts Press, available in ebook and paperback formats from outskirtspress.com, amazon.com, bn.com, or http://www.tingandi.com .

We needed a plan.

Orange Regional Medical Center (Middletown, NY) provided us with doctors’ orders, prescriptions, suppliers of equipment and a nursing agency. We began.

We needed a location and equipment.

The bedroom my wife and I had shared became hers alone, dedicated to her quadriplegic care, with a hospital bed, ventilator, pulse oximeter, compressor / atomizer, auxiliary oxygen supply, and a variety of ordinary nursing equipment and supplies. In the room next to hers were a Hoyer lift, a wheelchair with its own ventilator, and the concentrator that supplied the auxiliary oxygen. Eventually, we had racks and stacks of disposables, as well: heat and moisture exchangers, tracheostomy tubes, disposable inner canulas, trach tube ties, replacement hoses and tubing, sterile water, distilled water, and on and on.

We needed personnel.

A local agency tried to supply staffing for twenty-four hours of quadriplegic, ventilator-dependent care each day. The hardest shifts to cover were the over-night shifts, and I did several during this period. Their RNs and LPNs ranged in quality from excellent to marginal. We took what we were given, though in at least one case I terminated the individual soon after arrival.  The agency had nicely designed charts for tracking medications and treatments and hours of employment. They charged IBM, the source of my retirement medical benefits, about twice what they paid the nurses, which may have been appropriate, considering their expenses and their need to make a profit to stay in business. The agency was cooperative, but clearly had a hard time filling the 168 hours per week with capable and motivated employees. Although responsible for my wife’s welfare, these employees had their pay checks coming from the agency, not us.

“Who pays the piper calls the tune.”

During my career in science, I was more the researcher rather than a manager, although being a professor is a bit of both. I thought I could manage our ventilator-requiring quadriplegic care situation better than it was being managed. I started recruiting nurses, advertising in the local paper, interviewing, scheduling and then training them on our equipment. The agency, knowing it was not able to fill all the needed hours, had no complaint, and we had a mixed crew until I could get enough nurses to replace the agency fully, which I did. I had no trouble getting above-average staff because I paid substantially more than the agency did and still charged my ex-employer, IBM, less. A win-win situation.

Our first and fine health insurer (Empire Blue Cross / Blue Shield) was replaced by one not so good, “Nameless.” Nameless required much more documentation than Empire BC/BS had, to justify reimbursing me for the money I paid the nurses. Nameless refused to pay for over-night nursing, though Empire had done so without a quibble. For a year, from 10PM to 8AM, I was on duty, alone, responsible for the ventlator and all aspects of quadriplegic care. Not exactly alone, actually, as our Golden Retriever, Brandy, handled security duties in our rural home. Nothing terrible happened, although in a crisis, I  would have had to try to get help and stay with the patient simultaneously. A fire would have been almost certainly fatal. Being part of her family, I was legally allowed to give Tina her medications through her gastric tube. She had been paraplegic for a decade, so I had plenty of experience in changing disposable diapers for a bed-ridden patient. I slept lightly beside her, getting up twice a night to give meds.

Meanwhile, we appealed Nameless’s efforts trying to classify this ventilator-critical quadriplegic care as “custodial care” rather than “skilled nursing care.” We appealed through two levels of Nameless’s hierarchy and two levels of IBM‘s, then obtained an outside final evaluation that completely vindicated our position. It took a year. I still wake up in the middle of the night. Perhaps it had become a habit.

Another year or so later, IBM switched us from Nameless to United Healthcare, who have been very cooperative. Unfortunately, delays in payments, partly due to the switch, meant we were owed $50,000 to $75,000 during many months. Given Tina’s MS condition, we had saved a lot while we were younger, and we could cover this. “Provide,  provide” as one of Robert Frost’s poems advises.

We have provided an atmosphere and salaries that have let us keep most of our nurses for many years. Our motto is “Tina comes first, but everybody counts.” The nurse with the longest tenure here, Diane Beggin, RN, has been with us for almost seven years, since November 2004. She has revamped our charting and record-keeping and helps train the newcomers. She accompanies us on most trips to doctors’ offices, assuring continuity of care and good information flow. I pay our nurses to be at the hospital during Tina’s rare periods of hospitalization. They do as little or as much of her quadriplegic care as the hospital allows, and they represent Tina’s interest in a special way, providing companionship and interpreting her sometimes slurred speech.

Our story, Ting and I, is a love story.

Our wedding rings are inscribed, “A dream come true.” For our 25th wedding anniversary, I gave Tina a heart charm, inscribed, “Together forever.” We hope so. Our doctors and nurses are trying to make it come true. So far, so very, very good.

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About Douglas Cooper

Douglas Winslow Cooper, Ph.D., is caregiver, author, retired environnmental physicist. Author or co-author of over 100 technical publications, Fellow of the Institute of Environmental Sciences, he recently completed TING AND I: A Memoir of Love, Courage and Devotion, available through tingandi.com, and now serves as a writing coach .
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2 Responses to QUADRIPLEGIC CARE AT HOME

  1. Linda S. Irwin says:

    Good Morning,

    Your story is very inspirational and that’s why I am writing. My brother (50y) was in an MVA last week and is now a quadriplegic on vent. He was on a motorcycle at a stop and a truck swiped him with side mirror.
    I just sat with SW yesterday and tried to put a rough plan together for the future. I, like you, do not want my brother in a facility. He can’t talk, but he is mouthing “I want to go home.” Today, my family is going to meet to get everyone on the same page. I am an RN and the eldest. There are three other sisters who are nurses and one sister who is not.
    There are really no back up funds and I think maybe one other sister would be willing to help with care. Can you give me any suggestions on where to start, what to do. I know he has weeks to go in the TICU and rehab time; but, I would like to do whatever I can to facilitate his care.
    Thank you so much for your time and expertise.
    Linda Irwin

    • Linda,

      I will email you a copy of the pdf of our memoir, TING AND I.
      In the central portions of it are chapters on home health care
      for our quadriplegic MS patient, who is on a ventilator. I will make
      some comments here, too:

      1. Patient morale and caregiver morale are crucial.
      Acknowledge that all involved are handling a very challenging
      situation, one they can be proud of, if successful.

      2. Try to get his ventilator set-up such that he can speak.
      For Tina, this required partially inflating the cuff around
      the tracheostomy tube so that some air goes to the vocal
      cords. This will give another air path for safety and allow
      him to express his wants and needs…also good for safety.
      The added risk of aspiration seems negligible in comparison,
      assuming he is on a gastric tube or can swallow successfully.

      3. Once home, try to duplicate as much of the critical care
      unit as you can. Respiratory infection and bedsores are the
      biggest risks. People with colds must stay away. Use an alternating
      [checkerboard pattern] pressure mattress to change points of support.
      Keep him clean and dry. We use disposable diapers, not a catheter.

      4. Entertainment: we have hundreds of DVDs, to supplement an
      extensive set of TV channels. Someone must be alert to changing
      program and volume as needed.

      5. Get yourselves a set of “charts” [tables] with what is needed
      when and done by whom. You nurses know this.

      6. Physical therapy may help a bit, and the activity inspires
      hope.

      7. If kept safe and non-suicidal, he’s got decades more of life
      expectancy, during which some neurological breakthroughs may
      make his life [and his family's] much better. Keep hope alive, but
      talk realistically about it.

      8. There are probably organizations that can give you some help,
      but we did not get much from outsiders. My IBM retirees’ medical
      insurance has paid for our half-millon-dollars-a-year average
      medical costs. Most of that [$1000/day] was for nursing, which
      your family may be supplying “free.”

      9. You can reach me at douglas@tingandi.com, and I will
      be happy to correspond.

      Best wishes for your brother and your family,
      Doug Cooper

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