Care, Competency and Consent: What Four Nights in the Hospital Taught Me

Thursday night I was admitted to the hospital and this morning I awoke in my own bed.

It’s been a long time since I was in the hospital that long. I had a lot of feelings about it. At first I felt anxiety and boredom, along with mild annoyance. I had stuff to do. The bed had no back support and was intermittently moving around thanks to new technology to prevent bed sores. After two days I felt like a “sick person,” and didn’t like it.

But on a deep level, I felt secure. I had done my research and chosen doctors affiliated with this hospital after seeking recommendations from local family members. I had established relationships with these doctors and my relevant specialists came to see me. This hospital was close to home, part of a large network, but a smaller branch. It had an excellent reputation and my aunt had recommended it. I knew that I was safe there. And that helped me to relax.

A major reason why I preferred this hospital was rooted in something practical: all the phlebotomists and nurses were competent and respectful about getting lab work done. They found a vein quickly and often without pain. They didn’t argue when I told them to use my hands, not my arm. Staff at other hospitals I had visited for lab work and tests struggled, needed multiple sticks and often had to change staff to someone more skilled. When an IV was needed and I consented to them using my arm for a bigger needle, it was difficult for them. The staff that this hospital were all excellent with such a delicate but ordinary routine– and to me that’s vital.

When you’re hospitalized, it’s easy to let your fear and pain, if you’re afflicted with it, consume you.  Luckily this time I had no pain. Discomfort, yes. But not pain. Regardless it’s to easy to detach from the immediacy of your care and let others take the reigns– if they are competent and you trust them. If you’re able to think on that level, which many are not because they are too sick. My Dad has been there at every hospital stay, and most of my doctor visits. And that was needed, because he was the calming presence who reassured me to trust my doctors and that it was important to make decisions and get things fixed rather than avoid them. He was there to squeeze my hand when I needed blood work or IV’s that caused me to breathe deep because my veins are collapsed and scarred in many places. He helped me pay. In the past I would look to him to help me understand the most important information and usually go with his advice.

But I was younger then. So was my Dad.  Now he’s 76 and I’m 38. He falls asleep in his chair more often. He doesn’t chat as much. I don’t need to ask him as much and we share companionable silences. I have done a lot without his help and done it successfully. Without realizing it, I did absorb his analytical nature and ability to cut through the bullshit and find out what needs answering by the doctors and hospital staff. I taught myself to have a list of questions ready along with suggestions. I have spent much of my life in a hospital setting and handle it better than most. I realized it was up to me to help myself heal and actively participate in my care and recovery.

And I realized something  wonderful: I am a competent woman even when I feel uncertain and stressed. My Dad visited me every day, but was only present once when my doctors were visiting me. That first night. He stayed till 12:30 a.m., making sure there was a plan and I was safe.

So I asked all the important questions to learn about my diagnosis and options. I called and texted my friends and relatives to learn if anyone in our family had my symptoms. I asked my friends if they had ever dealt with something similar. I Googled away to educate myself as best I could. I questioned the nurses about updates and the next step in my treatment.

And I became a strong advocate on my own behalf. I realized at one point I no longer needed input from anyone else, even the doctors. I had made decisions. Obviously every doctor is prepared to make the ultimate decision when necessary and to negotiate aggressively for treatments families may want to avoid because of risk, price, or an inability to accept their loved one is sick enough to warrant that level of intervention. But it’s up to us as patients to make sure we understand what’s happening and draw the boundaries about what is an option and what is a hard “no.” We need to know our bodies and what we feel and not hold back when something makes us uncomfortable.

They had goals for my treatment plan and release and they met those goals in the predicted timeframe. They were patient enough to advocate for the least-invasive course of action, rather than the quickest solution. They decided to use meds rather than surgery and wait it out an extra couple of days to let me heal, and that was reassuring to me. They explained why I wasn’t a good candidate for that surgery and that it was an option but more likely a short-term fix that would bear addressing again in the future. I agreed with them and we proceeded with success. But the whole way through, they cared about my safety and consent.

At 4 a.m. when I was being woken up for blood work, they were kind and did not rush me. Every time, I was asked if it was okay. Most times they knew to use my hand, so a note must have been in my chart. I woke up just enough to move my arm for their access and then luckily fell back asleep instantly.

Once my symptoms were gone for a satisfactory amount of time and my lab work had returned to healthy stable levels for more than 8 hours, I was released quickly. They didn’t drag the paperwork out. I felt exuberant and 200 percent better.

I was grateful. During those four nights I had no responsibility other than seeing to my immediate needs: going to the bathroom, ordering my meals from food service and eating them, and answering questions about what was bothering me and what was working. I asked for a fresh hospital gown, to have a nurse wrap my IV so I could shower, to have another glass of water or more blankets. I brushed my teeth and washed my hair. Otherwise I received the IVs ordered and relaxed. I took my meds when they were brought to me on a schedule. I was able to text and call my family and friends, and receive visitors.

I slept when I needed and watched TV when I wanted. I got to catch up on some re-runs of the original “Roseanne,” which delighted me. I watched the Grammys Sunday night and squealed about each gown and musical performance.

Now I am healthier and comfortable with renewed energy.

I had been telling one of the nurses who I interacted with the most about Lady Gaga’s Grammy win for “Shallow” from her soundtrack contributions to “A Star is Born.” I told him that he NEEDED to watch this song and that it would *CLEAN UP at the Oscars. He hadn’t seen the movie yet but agreed she and Bradley Cooper have insane chemistry and they should just get together already! As he was wheeling me out to exit, my Dad went to get the car. I had declined a wheelchair but it’s just a service they provide to help your transition and show you that last bit of care as you leave. So I allowed myself to accept it.

My nurse surprised me by finding “Shallow,” on his phone and playing it close to my ear. He didn’t tell me, he just let me notice it, which is interesting because my left ear is my deaf ear and it’s a surprise I didn’t miss it.

“Tell me something, girl….” The song was close enough that I heard it.

“Are you happy in this modern world?”

It was so unexpected and considerate. It even seemed a bit romantic. I just enjoyed the moment– that my favorite song for more than six months was being played for me by someone. A stranger, really.  A female trainee nurse was there also so I didn’t comment or flirt, but if I hadn’t already been sitting down I might have swooned or asked him to dance with me.

Maybe that moment was a little gesture from God, reminding me that he’s paying attention to this girl. To keep believing and that the Next Good Thing in my life will be happening soon.

Regardless, not a bad last moment to remember in that hospital. I may be single this Valentine’s Day, but I’ll remember that song and that bearded male nurse and smile on February 14.

Uncle Donnie’s Last Thanksgiving : Saying Goodbye and the Power of Touch

*This is the speech I read today at his funeral, written last night.

HERE is his obituary, if you’d please take a moment to read about his life.

Regrettably, I didn’t spend much time with Uncle Donnie. But I was happy when he moved to Illinois circa six weeks ago to Brookdale Assisted Living.

I never knew my grandfathers– both died before I could meet them. I visited his room three times, and twice in the ICU at Presence Medical Center in Joliet. I didn’t know exactly what to say– I felt a bit intimidated. But he made and effort to make me comfortable as if it were his own home. I found I liked him, though he was a bit gruff. He sat in his leather chair and I sat on the bed, and we shared a companionable silence. We watched TV.

Both of us had a hearing-loss, but he really struggled to hear me. I could see how much he struggled to communicate. Even speaking slowly and enunciating well, often I still failed to convey my words in a way he could understand. But he took an active role in our conversation and asked me questions when I was feeling shy.

In his mini-fridge, he had a few basics: green grapes, Cheesehead’s string cheese, Sprite and Hershey’s milk chocolate bars. Each time I visited, he would offer me anything available– he wanted to be hospitable. He ate the string cheese in bites, while I peeled it. Thought he possessed little, he was instinctively generous and wanted to share.

I regret that I waited till the tend of his life to cultivate a friendship with this gentle man. He wore a beautiful gold watch, and allowed me to clean it up for him. He trusted me so easily with what must have been a prized possession. He also wore two medals on a gold chain– St. Christopher, and St. Francis, I believe. He had a beautiful crucifix on his wall. Clearly, he was a devout Catholic man.

I never called him in Florida for the same reason I never reach out to many family members I wish I knew better- I don’t know what to say. But I learned while visiting that what we say does not matter-rather, it’s our gesture of reaching out that matters.

When my Dad told me he was in the ICU on Black Wednesday, I went to visit him. He had a breathing apparatus on, but recognized me when I touched his arm. A nurse came to draw blood and I held his opposite hand for support. I knew how much it can hurt. He didn’t fuss or complain as she did her job.

On Thanksgiving my parents and I went back, and I was able to see him one last time. He was less responsive, but still fighting. Breathing was hard for him. We watched TV.

Other family arrived. Uncle Donnie never spoke that day, but he responded immediately to touch. He would turn his face toward the person and it seemed to deeply relax him. I watched our family keep a vigil at his bedside- holding onto Uncle Donnie. Letting him known we were there, that he was loved. We took turns being alone and saying goodbye. We were sitting around his bed just talking normally, when I left for maybe 20 minutes. I came back and he had just been unhooked and passed. All of us cried. We prayed over him.

I’m grateful I was given this chance to know him. To have a few moments to experience what it must be like to have a grandfather. Our love for him brought us together on Thanksgiving and he made his peace with life, his beloved family, and departed.

Now I bet he’s up in Heaven, smoking his Pall Mall Menthol 100’s, eating a Hershey’s bar, and watching over us.

As my father said, our dear Uncle Donnie went home for Thanksgiving. Home to rest with our eternal Father.