In ideal situations, professional caregivers become the “home support team” – a vital part of the family or household network that advances the goal of keeping the ill, disabled, or elderly patient at home as long as possible. In these circumstances, professional caregivers become the patient’s family and lifeline. Yet in other circumstances, the caregiver’s ability to be of help is restricted by patient and family choices. I share two reflections to illustrate these points.
Frank owned a construction business and was very successful at his trade. He was happily married and had 2 young children. Driving home after a very exhausting day, he fell asleep at the wheel of his car and crashed into a tree. Frank was 45 at the time and he suffered from a spinal cord injury that left him a quadriplegic.
Frank completed his rehabilitation months after the accident and was sent home. He had always been proud of his home and the extensive renovations he had completed prior to his accident, but none of those changes would now meet his unique needs. He could do nothing for himself except chew, swallow and breathe. Frank would have to learn to rely on someone else for everything.
Several months after his homecoming, his wife came to the difficult realization that she could not handle the drastic turn their once-privileged life had taken and decided to take the children and leave Frank. His siblings were all at least a decade older than he was. Despite these stumbling blocks -- bigger stumbling blocks than most of us could ever imagine -- Frank did not give up.
He hired around-the-clock caregivers. They bathed him, exercised his arms and legs and
dressed him every day. They learned his bowel regime and how to care for his catheter. They made his meals and fed him. They turned him and transferred him into his motorized wheelchair that he could control by blowing into a straw. They drove him to his appointments and into his office three days a week. Despite the many road blocks, Frank was determined to continue to work at his company. These dedicated women were well paid for their services; paid out of Frank’s savings, paid from the retirement plan he would never enjoy, paid from the selling of his beloved company when he could no longer handle the demands. These caregivers became more than his helpers; they became his family.
I met Frank nine years after his accident, when a small nick on his hip very soon became a bedsore. My visits to his house were always more involved than just caring for his wound. Frank lived for company, he was humorous and charming. He would tell his story without pity or rancor. He loved to hear about my life. We shared past experiences as we were close in age. We laughed a lot.
Sadly, as so often happens to individuals with spinal cord injuries, Frank’s health spiraled out of control over the next year. Despite diligent care and many different types of therapy, his wound never healed and infection set in. More complications developed unrelated to the wound. Frank now spent long periods in the hospital; his beloved caregivers could do little for him there, and could stay at his side only for short periods. Frank died not in his beloved home but alone in a hospital.
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Ethan was a wild young man; he liked to party, enjoyed drinking heavily and using recreational drugs. He was 19 when he crashed his motorcycle and suffered a traumatic head and spinal cord injury that left him paralyzed from his neck down.
Unfortunately, his family was unable to care for him and he went from the hospital to a skilled nursing facility. He had been there for over two years when he and Becky,
one of the young staff members there, decided that they could share a house and she would take care of him there. It would be so much better; they could have friends over anytime and party there. Because he was an adult, his family could do nothing to stop the relocation.
They were both young and had no real concept of how much time and energy Ethan’s care would require. Many aspects of his care were left undone on a daily basis but they were enjoying their freedom and fun. Friends came and stayed often, their sleeping bodies sprawled out on the couches and floor. Ethan remained in the same position for far more hours than he should because there was no one awake to reposition him. Meals consisted of chips, soda and pizza. Bathing was not a daily affair, nor was cleaning up after his bowl movements or caring for his catheter.
After several weeks of this, he had a doctor’s appointment. The medical staff was appalled at his deteriorating condition. Ethan had bedsores in numerous places on his body, some were superficial but several were large and infected and caused him great pain.
Home care was ordered. On my arrival the first day, Becky defensively stated, “I know how to take care of him, and you don’t need to be here.” While she may have known what he needed, she was quite obviously not providing the care. I tried to teach her on each visit, but she would storm out of the room angrily. It was apparent that she was not following through on the care required when home care was not there either.
One day, I arrived at the home to find them both asleep on very soiled sheets, the room smelling stale of urine and stool. It was then I noticed that one of Ethan’s pain patches was on Becky’s upper arm. I woke both of them up. Becky left the room while I bathed Ethan and cared for his wounds. He told me when we were alone that he wanted to go to the hospital because he knew he needed more care than he was getting at home. I called for the ambulance to come and then went out to tell Becky about his decision.
Becky became extremely angry at both of us, yelling at him that he couldn’t go to the hospital as that would ruin everything. She also kicked me out of the house and would not allow the paramedics in the home when they arrived.
All appropriate individuals were notified; supervisors, doctors, police and adult protective services. But nothing more could be done as Ethan now refused to leave the house. And Becky refused to allow any other health care staff into their home.
A week later, one of Ethan’s friends arrived at the house and found him alone and
totally unresponsive. He carried him to the car and drove him to the hospital. Ethan died there in intensive care of sepsis (massive total body infection).
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