The Tough Love Job of Patient Advocacy

Image of Jeff Healy at Grapefield Beach, Aruba

Tough-Love Job

I’m hoping (and praying) that I’m finished with a very tough job. No, it’s not setting up a Google Campaign, or brainstorming a logo design with a new client. What’s the job, you ask? It’s not what you’d expect. It’s the full-time job of advocating for my husband, who was hospitalized twice in six weeks. After not feeling well on and off for about a month, I came home to find Jeff writhing with stomach pain, a pain that would take days of morphine drips to get under control. It’s taken me a few weeks to sit down and write this; admittedly, I took better care of my family than I did myself during the ordeal. But it’s important that I share this with you, in the hopes of preventing future frustrations for my friends, family and clients.

Our first visit to Westerly Hospital was in the early evening hours, and getting information from the staff was like pulling teeth. I found myself asking over and over “Where are you taking him?”, “What’s next?” and “Any results yet?”. Not a single bit of information came freely, and answers would come in days, not hours. The doctors seemed like ghosts to me; my visits in the ensuing days came too early or, more often then not, I had “just missed” them. I made some critical errors though: I was trying to take care of Maia as much as I could, trying to keep things normal for her. But there was nothing normal about this situation; I should have relied a lot more on my family. I desperately wanted to be part of what was going on with and around Jeff, but I was stubborn. I’d learn my lessons the hard way and spent more than a few nights awake, alone and frustrated.

Procrastination is not in my vocabulary, and my clients and family will attest to that. I want results and I want them fast, and I do whatever it takes to get them. I’m not very good at relying on others to give me the information I need. The question of what was causing the stomach pain was answered quickly: Pancreatitis. The reason behind it was much slower to come. After CT Scans, Ultra Sounds, an MRI and finally an Endoscopy, the culprit was revealed three full days later: The Gall Bladder. It was uneventfully removed a few days later.

When it came to the second visit just five short weeks later, I felt like a pro. The two visits were like night and day, literally and figuratively. Jeff was again admitted to Westerly Hospital, this time in the morning. The nurse in the ER was on top of things and I knew what was going on every step of the way. I was allowed to stay with Jeff during the tests because this time, I asked. I knew where the warm blankets were when Jeff got cold, I knew where I could (and couldn’t) get the best cell phone signal, and I called on family to help out with Maia so I could concentrate on taking care of Jeff.

To be continued…

The Tough Love Job of Patient Advocacy Part 2

Tough Love Too

Due to the heavy pain medication Jeff was on, it would be two full days before my husband spoke more than a few words to me since that visit. But I was getting answers this time around, doctors came and went and with every visit, I had another piece to the puzzle because I spoke up. I was relieved to find out that there was a good chance that this was an isolated case. The doctors believed that his pancreas was traumatized too soon after the surgery; an assertion that was validated by Jeff telling us that the dog had jumped on him the night before and he felt a “pop”.

While Jeff still struggles with some digestion issues and I suspect a bit of exhaustion every night he arrives home from work, he is on the mend. He’s also one not to complain. And I’ve stopped complaining about that first hospital stay. I’ve finally figured out that there is only one person who was truly in charge of Jeff’s well-being: Me. If he needed something, I tried my best to make it happen. I realized that advocacy is not about taking a back seat, it’s all about firmly taking the wheel.

My advice to you:

  • Know the names of every person in charge of your loved ones care.
  • Ask questions, over and over if needed.
  • Don’t be afraid to step on a few toes if you have to.
  • Do whatever “it” takes.
  • Be strong, and ask for help from family and friends so that you are able to assist in the hospital or home care.
  • Remember: YOU are the customer in every way, shape and form. YOU are paying for the hospital stay and their doctors’ salaries, in the form of insurance premiums. YOU are paying for every test, and all medications.
  • Finally, take care of YOURSELF, so that you have the energy and power to care for your loved one both in the hospital and when they arrive back home. It’s the best gift you can give yourself and your family.

It took some time, but I realized that advocating for Jeff was not much different from running my business: Asking the right questions of the right people, having the right answers to probing doctors, keeping constant, open communication, and knowing when to call in reinforcements. Relying on others is the hardest part for me, combined with not knowing something that I knew somebody, somewhere already had an answer to.

I’ve modified my hopes and prayers some as I complete this post. While they still include the continued recovery and health of my husband and family, they are also geared towards you. That YOU learn how to advocate for others, especially family when facing a health crisis. That you learn from my mistakes, as well as from my successes. And finally, that you never have to worry about becoming an advocate for a loved one. But if you do, it’ll be a tough job, with big results.