When did we cease to be human? At what point in party division did “us” versus “them” become every man for himself?
I am frustrated, overwhelmed and rapidly becoming cynical at the thought of being able to make difference at any level.
Seven days ago a 59-year-old man had a stroke. This man has worked his entire life. He’s owned businesses, worked hard, and was a commercial truck driver. He has almost always had health insurance. He has broken his body performing manual labor, and had surgeries and car accidents. Basically, he lived a normal event-filled life.
He has a small family, and one son. That shared son is who he and and I have in common.
At the beginning of this year, this 59-year-old man took a turn of bad luck. He ran afoul of some technicalities. He got entangled in a court case that was destined to be settled. He lost his job working for a college and lost his relationship of 17 years. Suddenly single and without a plan, he was couch surfing a bit, trying to regain his bearings and get himself on track again. He never did drugs. He never smoked. Never drank. He was raised a good Catholic altar boy.
My husband and I opened our home and our hearts to this man who was forever tied to us through our love of our son, who was about to graduate high school and head off to college. The man helped us with some projects and was doing his own semi-independent thing.
Two months ago he lost his right foot to gangrene. Always a guy who loved to eat, he had not managed his diabetes well. He liked sugar and didn’t like medicine. The consequences of that came home to him when he got an infection and lost his right foot. It knocked the wind out of him a bit.
He finally made it out of the hospital and was working hard to learn to walk again, how to stride, healing up the very sensitive remainder of his foot, and getting a prosthesis made. He was lucky enough to get some medical coverage through Obama care during this time, and managed to get an appointment with a primary care physician and begin the process of getting the important things done.
Seven days ago he had a stroke in the early hours of the morning in my living room. Our son found him, called 911 and saved his life.
My whole world imploded. After a lifetime of being co-parents, I found myself his power of attorney. I needed to make important decisions regarding his quality of life, the care he receives, and the next steps that will determine his recovery.
He has settled into a level of disability that is staggering. He is paralyzed. He can no longer eat his beloved ice cream. He is being fed through a tube in his stomach. He cannot walk. He cannot lift himself or sit up. He cannot transfer himself or speak loud enough to be heard. His world changed, but so did ours.
I have sat up nights reading, educating myself and preparing to make sure he gets the help he needs to regain some sense of independence. I formulated a plan, researched facilities and figured out how to manage to get all the things done that were needed.
Then today, I received the costliest education of all. I learned that the system is broken; irreparably broken.
The reality of a catastrophic health crisis is this: Health care is a business. If you have fallen on hard times, you may not get the care you need, even though you have state coverage. This is the trap we have fallen into. He has Medi-Cal, and is covered for services in as much as the county offers mandated coverage for the infirm and needy. The coverage is a joke. No one accepts it. What good is insurance coverage that no one will accept? So far, every facility has DECLINED to accept him for care. I didn’t even know that was an option!
“Declined? What does that mean?” I asked.
The discharge coordinator patiently explained the scenario we are facing. This man is relatively young; only 59. If the long-term care facilities accepts him, they by law are required to offer certain age-appropriate programs for the younger patients. Rather than offer those programs for the rare younger person who suffers a stroke in this way, they simply decline to accept them.
This is mind-blowing. Not only this, but he also is a complex case. He has paralysis. He cannot swallow. He is a fall hazard. He requires a full Hoyer lift for transfer. His diabetes is poorly managed. He has speech issues. His dominant side is damaged, so he can’t write or communicate well.
The discharge coordinator also explained to me that she hadn’t worked much on his case today because she was only one person, and she had other patients that had been waiting for a bed for two weeks, a month, two months, and even three months.
These people are waiting, languishing in an acute care facility, because they could not get the care they desperately need because the facilities simply say no. They say no for a variety of reasons: They don’t like the insurance, or the reimbursement rate, or the family in general. They don’t have to give a reason. They can just say no. It is capitalism at its finest.
We are in the critical first three weeks of recovery and one week is completely gone. This is time when rehabilitation is the most effective. Skills are gained, abilities sometimes return, and yes, sometimes they do not. I am staring at the calendar, at the clock, Googling every possibility with frenetic intensity. I have never felt so helpless in my life. This man is in dire straits. He may never get better. He may not get a place to go for care, either. How is this even a possibility?
I asked the discharge nurse this today. She sighed and said, “Yes, the system is broken. This is the reality. He may just have to stay here. It happens.”
Stay there? In that tiny room that really doesn’t have enough room for a visitor. Staring at a TV with no socialization, no decent rehabilitation and no hope.
Our system is broken. The greed of the machine has caused us to disregard our humanity, to lose compassion, and to forget these are real-life people, not just statistics.
This man is someone’s son, brother and father.
I have wrestled with the option of bringing him home and caring for him myself. But I can’t lift him, and I can’t provide 24-hour care. I cannot transfer him. I cannot be the only one caring for him. Others have to be able to assist! I have a full-time job, pastor a church, and have a husband and son to provide care for.
I am beginning to doubt my ability to fix this. I don’t know how we continue as a culture when we throw away the ones who need the help the most, those who cannot help themselves. We just put them on a shelf and shut off the light and walk quietly away.
Lord help us all.
Barbara Ward is a second generation Redding native, from a large local family, the “Webbs” of Anderson and Cottonwood, California. With a long resume of skills and interests through the years, Barbara is a self-proclaimed nerd and computer/social networking engineer as well as an Administrative Wizard which manages several local corporations while actively involved in the development of several commercial projects in the Shasta County area. Currently her passion is Co-Pastoring a local church, “Lifewalk Church” with her husband & best friend; Jerry Ward. She has one son who is currently plotting world domination with his 2016 graduation from High School (ANTHS) and is actively involved in community outreach through her Christian rock/power praise band, Remnant. Some of her best work is performed while partnering with the Good News Rescue Mission, Freedom Riders (CMA), Recovery Community and many other service organizations.