My grandmother, Elnora Farmer, passed away in 2008. It devastated me and my entire family that our matriarch was gone. After 16 months of illnesses, hospitals, nursing homes, caregiving and information overload, Gram was gone. It was all over.
Her health and healthcare crisis became the focal point our lives back in 2007 and early 2008. Our strong and stoic Gram finally took a hit she could not recover from with her health. She had recovered before no matter what hit her in life. She was a giant to me. I lived downstairs from her growing up, so I felt close to her. How could she be ill? And close to…I didn’t even want to think it…death?
I had just gotten my job as a hospital executive in employee communications in 2007 and I was on a high. But the low I faced everyday was knowing Gram was ill, but she was fighting. She always was a fighter.
I felt bad that I wasn’t there with her. I was 256 miles away from her. What could I do? I needed to help her. Something in me had to do something. I spoke to every doctor I knew that would give me a few minutes. They gave me advice, but only because I knew them. I would relay information to my Mom, who while in charge of caregiving because she lived downstairs from Gram.
My Mom was having a hard time caregiving. Her job was on her back about the time off she was taking after over 35 years at the job. She had a hard time managing her feelings about everything, and caregiving only exacerbated the issues. She was overwhelmed.
I heard the frustration in my mom’s voice through the phone. Ever since she became caregiver for Gram, she often sounded like that.
“What’s wrong?” I asked.
“I’m going to jump out of the next window I see,” she told me. “They’re trying to put Gram out of the hospital. We don’t have test results, and she has a tracheotomy for God’s sake. We can’t take care of that at home and no one is volunteering to teach us. We can’t take her home.”
This hit a nerve for me. I was a hospital communications executive at the time, but I was a social worker just a few months ago. I was the same person that discharged patients before they were ready. Patients and families and expected them to do exactly as I said to.
But this was Gram. My Gram…she fed me when I was sick and saved me from spankings and punishment. She always protected me and finally, I can protect her. I had to.
“Mom, have her call me.” I knew the game the social worker had to play to keep getting her paycheck, I had played it so many times.
The social worker called me right away. I introduced myself and said, “My Grandmother will not be leaving the hospital today. Not only does she not have the test results she needs, but you know sending her home with the family will be unsafe. No one in my family knows how to care for a tracheotomy.”
“Well, her insurance won’t pay anymore.” Which of the three insurances that she had said that? I used that excuse so many times. Patients don’t check to see if the things they are being told are true, or if the sound true.
Then I got pissed. That’s the same lame excuse I used to discharge patients. I wanted to jump through the phone. This would not stand.
“Look, sweetie. I played the same game as you as a discharge planner. So I know how things go. Now if you put Elnora Farmer out, I will have The Joint Commission, the Department of Health and Medicare Review in their going through your files to see exactly how you treated her. You want that? Then go ahead and discharge her.”
Silence. “Now you have a nice day,” I said.
My mom called me back in an hour and said, “They’re moving now. The doctor is coming with the test results and the nursing facility is coming to review her chart. What did you say to her? You threatened her, didn’t you?”
“No, Mom. I told her what she needed to hear.” I don’t play when it comes to how patients and caregivers are treated while in the healthcare system.
Then I thought to myself for awhile after that, why did I have to go that far? Why did I have to say all that for the hospital staff to do the job they are being paid to do? What about patients and families who did not have the benefit of a healthcare insider’s knowledge?
I made it my mission to revolutionize health care through increasing the education and healthcare literacy of patients and caregivers. I dedicated my career to giving healthcare power to whom it belongs – patients and caregivers.
I could only do this after my Gram died because I finally knew how families really felt during those tense and helpless times. I finally knew what I was contributing to as a social worker in healthcare. I have been a party to things in healthcare, some I am sure are unbeknownst to me to this day, that make me sick.
I will no longer see patients discharged before their time to go home. I will no longer watch families go through unnecessary confusion due to the “business of healthcare.” I will not watch another hard-working caregivers dismissed by healthcare staff. Not on my watch.
There are many of us – people who want to improve healthcare for patients and their caregivers – people who want to make the healthcare experience easier because they have suffered through it, people (like me) who want to teach more patient-centered and efficient tactics to make the lives of patients and caregivers easier. I mean, things are hard enough some days just waking up in the morning.
WHY does healthcare and caregivng have to be so damn difficult?
I miss my Gram every day. But she is my inspiration to make things better in healthcare. All of us that want to help, we have a story. We each have a reason why we want to fight the huge corporate monster call healthcare. Their moms, dads, kids, friends and other people that give them the fuel to help the vulnerable in healthcare, they are important to your care. Mine too!
Just like my Gram. The fuel that keeps me fighting. And teaching whoever wants to help make healthcare better.
Join the Movement of Facebook, “Keeping PACE in Your Healthcare.” I post all kinds of tips and info for patients and caregivers to enhance their healthcare experience. They deserve it. You do too.