Nurses didn't respond to the call button, doctors didn't return my calls, some went on vacation, and there were new nurses almost every day. All of their differing opinions about her prognosis was baffling. I never really understood what was going on with her condition because I was told so many different things about the effects of new treatments and new medications. I simply put faith in the medical staff that they knew what they were doing and tried to do my best for my mom. Get the nurses when she needed them. Put cold washcloths on her head. Feed her ice chips. Massage her feet. Put pictures on the wall. Read to her. To witness my mother's suffering was excruciating. She was helpless to do anything about her gagging from respiratory procedures, or the hum and drone of the machines hooked up to every orifice of her body. She was confined to her bed and on full life support. Her only moving parts were her eyes. Medical staff moved in and out of her room almost as if she wasn't a human being.
One day I walked into her room to see that her hospital gown had ridden up past her waist, leaving her completely exposed. Her door was wide open. I had never seen someone stripped of all dignity the way my mother was. Not intentionally, but because when hospital staff gets overly busy, this is what happens. Their focus is on the body. There is no hospital department for mental and emotional care.
The hospital was a war zone. I never grew immune to the site of a body bag on a gurney against the wall in the ICU hallway, never grew numb to the moans of dying patients, never could grasp how nurses could eat their lunches and laugh while my mother was in extreme discomfort, lying in the room across from the nurses' station. I suppose they have to inure themselves simply to cope with their jobs. I never completely understood how she have been moved to a step-down unit where the air conditioning was broken where she developed a fever and no nurse came to help her. Even after I'd asked several times.
Towards the end of her life, my mother developed hospital psychosis. Lying in her bed, her eyes on the ceiling, she spoke to imaginary people. At least the depression had lifted temporarily. Until I called in a specialist from the local university to offer a second opinion. I don't know what he told her, but after his visit and his meeting with me and my stepfather about there being no hope for her recovery, her mood plummeted. She simply stared out the window to the snow covered parking lot.
I was not prepared for what happened four months after my mother died. My godmother, Martha, who I was very close to, fell ill. Several times over the next few months she called me to take her to the ER because she was having trouble breathing. She was admitted to the hospital the last time for seven months due to congestive heart failure, renal failure and complication due to her diabetes.
Martha was placed on full life support, complete with a trach and ventilator, intravenous food, and was hooked up to machines that calculated her heart beat, oxygen level and urine output. Like my mother, she was not able to get out of bed, not able to speak, and not able to press the nurse's button when she was in need. Like with my mother, I fed her ice chips, put cool washcloths on her forehead, brushed her hair, and put up photos and cards on the wall across from her bed.
But this time I was determined to educate myself on all aspects of the hospital system and her care. I learned how to advocate for Martha. I learned to work the hospital system. I learned who to speak to and who not to, discovered which doctors and nurses offered the most accurate information and who cared the most about Martha. I involved myself in her care by asking the nurses what I could do to help. I brought them cookies and expressed appreciation for all that they were doing to care for her.
By the time she died, Martha had been subjected to neglect, misdiagnosis, medication allergies, medication errors, and inappropriate care. Worst of all, she suffered needlessly, miserably.
I was determined after these two experiences to find out if my mother's and godmother's experiences were the norm. I found out that in fact they were. Among the fifty families I interviewed, some with extreme cases like my family members', others with less extreme cases, all expressed immense concern over what had happened to their hospitalized loved ones. Some cited belief in fatal medical mistakes. Others talked about total neglect. All expressed complete confusion about the how the hospital system runs . Each and every family member reported feeling helpless. I've heard dozens of stories from family members who had loved ones go into the hospital and for reasons unknown to them, never came out. They either developed hospital pneumonia, or something went wrong with a procedure, or they contracted a series of hospital diseases and in the end, couldn't fight them off.
I decided I had to do something. Perhaps write a book to empower families with knowledge. But first I had to find out from registered nurses and doctors what was happening in hospitals and what family members could do to help their hospitalized loved ones. All of the more than eighty-five hospital registered nurses, dozens of physicians, hospital social workers, physician assistants, and other hospital staff I interviewed said the same thing: "You must have someone, a family member, in the hospital with the patient at all times. Hospital care is in crisis." After hundreds of hours of research and more interviews, I wrote Critical Conditions: The Essential Hospital Guide To Get Your Loved One Out Alive. It is a book focused on educating readers on how to oversee and support a loved one's medical care, how to reach doctors when you really need them---every time, how to navigate the hospital, how to prevent medical errors and much more.
This book is my way of turning a lot of darkness into light. Because I was helpless and so overwhelmed, stymied by the hospital system, I wanted to empower families who have loved ones in the hospital so they don't ever have to feel that way. And more importantly, to help them save a life -- the life of their hospitalized loved one.