My Gram and My Family Went Through It…
The helplessness of watching a loved one living their last days is so torturous. It’s enough to wrestle your mind to accept that someone you love is dying…
Yet, you have to also deal with the “business” of healthcare. That’s what healthcare is – and you are a customer.
You will have to make quick decisions with deep impact on the patient. You will be bombarded with information. There will be pressure, and little time to think about your decisions. You will question if you are right or wrong. It all happens so fast that you don’t know which way to turn.
But, what if there was a way that you could just focus on the patient (even if it is you) and their healing, and you are prepared for the the business of healthcare? What if there was a way to find out your power as a patient or loved one? What if there was a way to get the most from your healthcare appointments and get guidance on how to get the best care and treatment possible? Guess what?
There is. It is called healthcare and patient advocacy. Here at Live Better Boomer! Healthcare Advocacy, it’s all we do.
My grandmother, Elnora Farmer, was such an integral part of my life. She lived upstairs from me and my chaotic childhood. I came up in a an abusive and angry household, but my Gram was the beacon in my life. She saved me all the time. From trouble, spankings and a lot of chaos. She was there for me when I was sick, which was a lot, and showed me love. Because I wasn’t like the “normal kids” and had a lot of sickness (including a diagnosis of epilepsy and looking back, depression) I didn’t feel worthy or valuable. The only person I felt loved me was my Gram.
I became a social worker to help the world, so I could get approval and feel valued. There were many things that I did to feel valued that absolutely made my life worse instead of better. But, I knew helping people would work. I could take on the world. This is when I still thought value comes from the outside, instead of within.
I was a social worker for many years to find out that it was a profession with a ton of stress, low pay and so much red tape that you had to wade through in order to help anyone. You filled out paperwork only to get to more paperwork. I began to hate it. I saw inconsistencies in the profession that needed to be removed in order to really help people. I was burning out. Healthcare is especially hard, because you not only deal with their lives, but their health, as well as the expectations of their families.
I also began to resent it because I repeatedly asked myself, ‘why do I continue to do this?’ and I was still struggling in my life and with my finances. I was helping people with their loved ones, but no one was helping me. Another depressive time in my life and I still didn’t feel valuable.
I went back to college to get a Masters in Journalism, I got married, had a baby and started writing freelance. While all of those things were wonderful, they didn’t give me the satisfaction or worth that I craved inside. My daughter is my crown jewel, but it was after I had her that I really saw that being a mother or a wife, which are outside roles, were worthwhile, they didn’t give me the self-worth I was searching for. I got divorced because the love I was searching for wasn’t in that relationship.
I became a social worker in a hospital and played the same game for awhile to get a paycheck, and I couldn’t find any writing jobs. I saw so many things that pissed me off in the way that patients were treated by the hospital. Patients would have to be discharged before they were ready, medical errors happened and people were treated disrespectfully when all hospitals preach is patient satisfaction. My Gram not to depend on anyone, and to stand up for what is right.
Finally, I became a hospital executive and people really respected my opinion and work. It felt good. I was on a high…until I got three phone calls that changed my life forever.
My Gram had went in for surgery for a simple procedure and over the next few months, became very ill. She had at least a dozen hospitalizations between the procedure and her death. My mom was handling everything for Gram, and it became really rough on Mom career-wise and health-wise, being Gram’s caregiver.
The Three Calls That Changed My Life
My mom called me in October 2007 and said, “Gram is really ill and they are not giving her much time. Her systems are failing. Come home.” I just started my executive job and had to leave? Oh, boy. My boss let me go and I drove five hours with my little girl to get home. I prayed so hard for Gram. She couldn’t go, not yet. I didn’t have enough time with her. She loves my daughter and they have only had a few years together. I wanted my daughter to have the quality time with Gram that I’d had.
Gram had gotten better for awhile, but she became a shell of the strong Black woman I once saw. It was killing me that I couldn’t do anything to help her, like all of the times she helped me. I wasn’t local to her across the state. I felt absolutely helpless.
My Mom called me again and said, “I’m going to jump out of the first window I see. This hospital is driving me crazy.” She went on to tell me that Gram was going to be discharged ASAP, but they didn’t have test results. Gram has a vent by then and there was no way she could come home safely. She needed 24-hour care. No nursing home would take her by the time she needed to leave.
I realized that I finally could help. I told my mom to have the social worker call me. I knew this game very well.
The social worker/discharge planner called me and I let her know who I was. I also told her exactly this: “Look sweetie. We both play the same “discharge-and-get-the-beds-free-for-sicker-patients-and-more-money-game.” With my grandmother, that game won’t be played. I know for a fact that she doesn’t have what she needs to get a safe discharge.”
Social worker: “Well, her insurance is running out. They won’t pay…”
Me: “Let me say something to you. I know, having been a social worker, that you are discharging her unsafely. Now, if you want me to send in the Joint Commission, Medicare Review and the Department of Health in there to tear your files apart, it’s no problem at all. They can take a look at how you have treated my grandmother.”
Hospitals hate those three names because they have the ability to ultimately hurt their profits.
Me: “Now, you have a nice day.”
I felt great, triumphant. What I did helped my Gram in a meaningful way when she was at one of the worst points of her life. I felt it was small, compared to all of the things she had done for me.
However, I started asking myself, “Is this what I did to families? Is how we felt how they felt?” I wanted to really hurt that social worker, but she wasn’t doing anything but her job. I realized then that not only was it the people in healthcare, but the healthcare system that was a problem.
The third call was for me to get home again. I was still new at my job. And while it was rough on my boss because we were a very small department, I will never forget what he told me, “People won’t remember next week what you did here this week. But the experience with your grandmother, you will remember forever. Go.” I am in debt to him until this day (thanks Dr. Brice).
I was there and I had to talk to her, only to find out she couldn’t talk. I saw her in her ultimate deathbed, and learned she was making the choice not to have dialysis, which would have prolonged her life for awhile. But as in life, she asserted her power. In death, she was going to do the same thing. Her power was her healthcare power because, with all the information that was thrown at us, she made the decision to die.
I asked her, “Is this what you want to do?” She nodded.
I asked her, “Did you have a good life?” She moved her hand in a “so-so” fashion.
I had to ask her, “Gram, was I good to you? Was I a good granddaughter? Did I call you enough? Did I tell you “I love you” enough?” By then, I was distraught.
She touched my face and nodded yes. It meant the world to me.
I told her, “I don’t like what you’re doing, but I have to be at peace with it.” I only saw my Gram cry one other time in her life, at her mother’s funeral. Somehow I knew with that, she was going away from me. And a few days later, with the pressure of hospital staff to make a life-altering decision about what was to be done with my grandmother’s life, my family took her off life support. I had a fever the day before and the day she died. I guess it was God’s way to keep me from seeing her last breath.
I was angry, hurt, devastated. A piece of my heart went with her. I wanted to blame people. I definitely was angry at the hospital staff, trying to force a decision on my family about the life of our matriarch. along with the guilt I felt about what I had done to patients, I had to do something about this healthcare system and how it permitted people to work.
I started writing. I created an e-book about hospital stays and how to survive them, but the voice was angry. So I scrapped it. I came up with a world of ideas. I had moved away and changed positions. I worked for a healthcare advocacy company as a health assistant. I like what we were doing, until it became about the measurement of how long the calls were instead of the outcomes of how we helped people. Again, I hated it. Again, outside factors got in the way of helping.
In 2012, I had my own health issues that lasted for a few years. I could not work and it gave me a long time to think. I wanted to help. I know I can help patients & families from the things I have learned in my social work career. Without patients, the healthcare system is bankrupt. I wanted to let patients know what they needed to get the power they deserve for the high costs of healthcare. I used my methods of asking the right questions and I also asked doctors if they wanted active patients…they said yes!
It was then that the stars aligned and LBB! was born. I found my purpose. I found my confidence. I found my value and worth. I turned another bout of depression from being ill into something that could help people, and it helped me. I had a moral obligation to let people know what I knew as a patient, family member and healthcare insider.
I am here to help you. It would be my honor to do so. No matter what, this is me. I am a healthcare and patient advocate. I have dedicated my career to this and I have dedicated my business to my Gram.
I love you Gram. I hope you’re still proud of me. Elnora Farmer (1932-2008)