YOUR OPPORTUNITY AND RESPONSIBILITY
Providing skilled nursing care at home is both challenging and rewarding for the caregivers. Home care is a blessing for the patient. Having chosen to provide it, you deserve to congratulate yourself. To make this project more manageable, take advantage of the advice provided here.
HOME FROM THE HOSPITAL
Someone you care deeply about is being released from the hospital, with the alternatives of home care, hospice care, or a nursing home. You have to decide, or help them decide, which alternative is best. If you decide on home care, you may need to manage it. This book will help you understand how to provide skilled nursing care at home and will aid in your decision-making.
The co-authors have been involved for over a decade in supplying and managing skilled nursing care at home for Tina Su Cooper, wife of co-author Douglas Winslow Cooper. As I wrote (Cooper, 2011),
In June of 2004, when she came home from the Critical Care Unit after the 100 days that nearly killed her, Tina was on a ventilator, quadriplegic, fed through a gastric tube. Not only was she totally dependent on us for her care, the list of infections and problems that had developed while hospitalized was daunting. She had been “colonized” by two strains of hospital-acquired bacteria and given only months to live. She was safer at home or in a hospice than in the hospital, our doctors agreed. Being given the choice of home or the hospice meant there was a good chance she had only months to live. She took it in stride.
Over a decade later, Tina’s health has remained strong, and even though the losses caused by multiple sclerosis have been severe, including quadriplegia, dependence on a ventilator and the need to be fed and medicated by a gastric tube, she has been able to live an added eleven years and generally enjoy her life at home.
We, the co-authors, have long thought it worthwhile to write a book about our experience, but only recently got down to doing it. Excerpts from the book will appear here.
WHY HOME, NOT NURSING HOME, OR HOSPICE?
Why would your patient rather be at home? The people, places, and things are familiar. It’s comfortable. Why do you want to care for the patient at home? You want to be together. You distrust care given by others, especially at a distance. In some cases, it is less expensive.
In a nursing home, there is a community of patients, some whom your patient would like and some less attractive. There are schedules with limited flexibility and personnel with limited time to provide care. The nursing home is generally at a significant distance from the patient’s friends and family, inhibiting visiting and monitoring the care, as will the rules of the facility. Physicians may visit, reducing the need to travel, a plus.
In a hospice, it is acknowledged that the illness is terminal, and the goal is patient comfort, an advantage. However, some families and some patients may well not want to accept this prognosis, and there is always a concern that being labeled as “terminal” may lead to receiving poorer care.
Home care can be a blessing. As written about my [DWC’s] wife’s situation seven years after choosing to be home rather than in a hospice (Cooper, 2011):
“…Tina was very fragile when she first came home. Her needs were many — ventilator-dependent, unable to speak, tube-fed, unable to eat or drink by mouth; physical therapy to keep her joints pliable, causing pain no matter how gently it was done, and medication being given on schedule day and night, interrupting the little sleep she was able to find amidst all the new noises and activity in her room. While her body remained fragile, Tina’s spirit grew strong. (Her complaining consisted of a frown on her face.) She withstood the changes in her health condition with the attention she received from the nurses, each one caring for her as a friend as well as a patient.” [Terry Bush, LP]
She’s been home for seven years since then. Through my IBM retirees’ medical benefits, we have had round-the-clock nursing, first through an agency and then from nurses we have obtained on our own. Most of our nurses have been with us for years, as Tina is a cooperative and cheerful patient, always appreciative of the care she receives. Here, “TLC” is “Tina-Loving Care.” There have been some scary times, including several bouts of pneumonia, and many trips to the doctor in our special van. There have also been lovely times. We say “every day is a blessing.” Every day is Valentine’s Day….
Tina still cares about her friends, her family, her nurses, keeps up with the news, and relishes the documentary and music channels on TV. She chats on the phone, spends an hour or two out of bed in her wheelchair daily, and provides an inspiration to those who know her. She is our heroine.
Now, 2015, three years after that was written, Tina’s condition is somewhat worse, with significant losses in cognition and ability to communicate, but she still indicates she enjoys her life, and we are still happy that she continues to be with us.