Hey Nurse: Don’t Judge A Patient’s Family

Every August I remember this woman who doubted me in 2017, and her doubts keep me going to this day

[Editor's Note: Suzi originally wrote this soon after her mom passed away on August 27, 2017.]

Dear Nurse Who Underestimated Me,

So Mom died.

She was my best friend, Thelma to my Louise, and she passed away — transitioned, I’d like to say — to the great beyond aka heaven, three weeks ago.

You might not remember Mom and she might be just another patient to you, but I think this needs to be said. You underestimated me — and her. That, along with many things you did, was a mistake. Yeah, I want to get this off my chest but I’m also hoping other people who are in caregiving roles for people they love can learn something, too.

You met Mom a few times in her weakened condition because COPD and lung cancer was slowly picking away her vivacity. You met me, too, but I was always in a frenzied, unattractive state — black circles, frizzy hair like a mushroom on top of my head, vampire paleness — because of some health drama concerning Mom. You didn’t see my mom as a fierce fighter, almost a real-life Wonder Woman, who once held a pistol on a man in her living room and told him to get out or she would shoot him. (That’s another story for another time.)

You probably didn’t really take it seriously when I said my dad dubbed Mom and me “Thelma and Louise” not only because we thrived on road trips but also because we never take shit from anyone. That includes you.

There was that night, when you first appeared in my living room, after Mom slipped out of her chair as I tried to transport her. A group of nice firemen appeared and put her back in her chair after a 911 call. Then you showed up.

You were nice. You talked about your parents. You sat with my mom while I drove fast to Walgreen’s before it closed to buy Pedialite because she may have been dehydrated. Then when I returned, you asked me the question: Are you prepared for your mother to die at home?

What kind of question was that to ask me at that moment? Shouldn’t that have been in a more relaxed atmosphere? No, I don’t no, no, no, no, no. What? Why are you asking me this question, I wondered at that moment. Who is ever prepared for a parent to die?

“No, I don’t know if I can handle that,” I asked honestly.

“Something to think about,” you said.

Little did I know that one question would start a tidal wave of your co-workers asking the same thing, repeatedly to the point that I became more and more paranoid and frankly, depressed. Often, I wondered if all of you were gaslighting me — the only child trying to do the best she could under the most exhausting, frightening, horrifying circumstances with a mom who never wanted to be in a nursing home. But surely medical professionals wouldn’t do that, would they?

The next time I called the answering service to speak to a night nurse, you called me back. I was concerned about Mom’s oxygen levels and you told me to crank up the machine to three then five and bring it back down once her numbers returned to the nineties. Then you asked me the same question: Am I prepared for my mother to die at home?

The reporter in me — she still lurked at moments in between my caregiving role — wondered: What’s your agenda?

In mid-July, Mom coughed up some blood, but that was not the issue I called to discuss with you. It was her delirium. Her strange behavior. Her hallucinations where she saw birds coming to retrieve her and visions of herself dying as a blue angel. When she started singing “When The Saints Go Marching In” at the top of her lungs, fear and concern consumed me. Mom never sang. Ever. Not in the car. Not at church. Not ever.

You said you would call the doctor to prescribe an antibiotic for the blood likely caused by an infection. It was the same doctor who had never once laid eyes on my mom and who had argued with me a week or so earlier that she would need a pain killer as her disease progressed as I explained mom was allergic to all pain killers. Seriously, she was. Morphine almost killed her in 2015.

You called back. The doctor refused antibiotics and told the nurse to tell me — second-hand news — that Mom was actively dying. She said to not let Mom see the blood (seriously, women see more blood than that every month) and to prepare myself because she had only four or five days at most to live. “Are you prepared for your mother to die at home?” you asked again.

“No, I don’t know,” I said.

You said if I couldn’t handle it, I should call 911 and have Mom admitted to in-patient hospice via the emergency room on the weekend. Actually, you should have come out and examined her. If 911 needed to be called, you should have done that, too, according to hospice protocol. Oops. Fail.

Mom was admitted to the hospital, and as the nurse wheeled her to the seventh floor, I noticed she pulled out the IV of fluids. In the room, a nurse announced vitals were only checked once a shift unless I wanted more. Yes, of course, I wanted Mom to be treated like a normal patient if she was in a hospital room. Even if she was dying, as everyone said, which I knew she wasn’t. Not right then.

Mom had a urinary tract infection that did not get diagnosed for 48 hours because you, dear nurse, did not order the test. That test only happened after a hospital nurse who seemed to have issues with the entire concept of hospice witnessed Mom raging and cursing out her entire family and I demanded the nurse for a test. Thankfully, she listened.

You vanished but were replaced with a team of people questioning whether I could care for Mom at home. The team forcefully recommended that I place Mom in a nursing room that cost $5,000 a month. They did not respect my wishes to care for her at home. For an entire day, they worked a hard sell on this nursing home, but I didn’t cave.

Two days later, another hospice nurse — equally as rude as you — questioned if I could care for Mom and whether I could handle her dying at home. If I learned anything from those four days in the hospital, it was this: Stick to your guns and never retreat from your intuition in any situation, but particularly when caring for a loved one regardless of how hard it is.

I took Mom home and fired your hospice group the next day. People can do this. Hospice is not free. They receive payment from Medicare and a patient has a right to choose what hospice group to use. Mom’s pulmonologist did not allow us to choose and enrolled us in one that was connected to the hospital where he practiced. Warning: This is not ethical.

Mom never rebounded fully from her urinary tract infection. She had good and bad days. But she never took one pain pill during her illness or complained about pain — a good thing considering she was allergic to more than twenty-five drugs and most were painkillers. When she became anxious, I gave her a pinch of Xanax because too much knocked her out for days. More or less, she slept. A lot.

I did not.

From the moment she returned home until she died, I worried every minute. I flew around the house like a crazed raven looking for something to do that would help her live a second longer. Pedialyte hydrated her. Bugles made her happy. Once she wanted a Coors Light, thinking it would help her kidneys, so a friend rushed over a six-pack. Her morning bacon was a given. She ate it daily until the last two days of her life and became obsessed with chocolate milk during her last week on Earth.

I controlled her breathing treatments twenty-four hours a day better than an air controller manages a fleet of incoming planes. I held her hand in the middle of the night when she was confused and attempted to refocus her rambling thoughts in the ether world back to reality. I usually failed miserably in that feat and tears endlessly ran down my cheeks.

You bossy nurse who thought you were a caregiving judge and jury, you underestimated me. On the last day of her life, Mom had already transitioned to another world. I watched her fade away for hours. I held her hand and prayed. I cried and even slept for a bit. She had every chance to leave me while I was out of the room. But she didn’t.

Felicia, her night aide came early that Sunday night, and we positioned Mom and brushed her hair. We made her pretty. Twenty-minutes or so later, she gasped and Felicia told me it — that thing I had dreaded my entire life — was happening. Another deep breath and she was gone. Yes, I watched my mom take her very last breath peacefully like a perfectly-written scene in a movie.

There are times when I’m still mad at your judgment of me. But I realize that in a twisted way, you gave me and Mom — Thelma and Louise, forever — a strange gift.

Watching my mom die empowered me. If a person can do that, a person can do just about anything. That moment took more courage than I knew I had. But it wasn’t more than my mom, who always told me I was stronger than I thought, knew I possessed. Ultimately, dying at home like Mom and I wanted, Mom gave me even more courage than she had during my life to carry on without her.

Sincerely,

Suzi