Nothing makes you appreciate something like losing it forever. I’m finally ready to write about this. I’m already getting emotional so I’m not sure if I’ll make it through this post.
I was a hospice nurse for a year. I left my job in a beautiful California beach town in May to travel the world. All the death, mixed with some other factors, inspired me to do so. I found great love in all the death, and that much love can be a heavy thing.
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I suppose this post is me giving a go at organizing my thoughts for the book I plan to write based on these experiences. I have a title, but I’m keeping it under wraps for now. This little posting window on this steemit post page gets me to write. It’s a positive mental anchor, so I’m using it to get this out, to give birth to the story.
I met my patients on the pretense that they would soon be dead. Some of them were unaware, due to dementia or Alzheimer’s. Sometimes, I was not to use the word hospice in front of my patients. At first, I had ethical concerns about this, but after having experienced the job, I understand. It was always the patients that were early on in the progression of their Dementia. Families knew that their loved one would deny the care, or not fully understand what it was all about. So I was their private home nurse that came to visit them.
...I feel tears welling up.
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Many of my patients knew perfectly well that they were going to die soon. We all know we’re going to die but not all of us get to know that the medical field estimates you have six months or less. That was never a guarantee, some of my patients did what we called “graduate” from hospice care. After six months to a year, if their condition had not declined significantly we had to take them off the hospice program. But that was one in one hundred, and we almost always saw them again.
Some of my patients died the next day, some died minutes after I arrived at their home to meet them. They were often unconscious, but that didn’t keep me from meeting them-
That thought tugged at my emotions pretty hard. I had to take a thirty second break. Okay. Here we go...
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I’ll start with Laverne. That’s not her real name because I’d be violating HIPPA laws by using her name. I’ve also changed the details. I hated Laverne when I met her. She was one of my first patients. She was an old British lady who had a problem with everything we did for her. She and her daughter had questions about everything, questions that I couldn’t answer.
My title was RN Case Manager. I led the team of aids, social workers, and spiritual counselors. I directed the whole thing and I didn’t know what I was doing yet. She was the third patient assigned to me. I barely knew how to properly admit her. Hospice care is much different than hospital care. In the hospital it’s about getting you better, in hospice care it’s about keeping you and your loved ones comfortable.
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The logic and rules are different; the end game is death. The drugs are different, used for different purposes, some are covered, some are not. The same goes for procedures. Any procedure directly related to the hospice diagnosis that had curative rather than palliative ends was not covered or would get them removed from our program. If it was unrelated to the diagnosis, they could be treated and remain under our care. It was all very confusing, especially for me who was being looked to as the expert when I was almost as new to hospice as my patients.
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I could never get cellphone reception in Laverne’s house, so I’d have to step outside to call the Medical Director, Dr. R, or to text him or the office. This was a huge pain in the ass but gave me cover to ask the always understanding Dr. R what the hell to say to them.
Imagine you have been a trained baker for a couple years, but cookies were never your thing. Your thing was cheese cake. But you recently got a gig as a chocolate chip cookie baker. You learned how to bake chocolate chip cookies by following a recipe, and after having made these cookies a few times you have to present them to cookie lovers for eating. You must also then answer questions from them as though you are an expert chocolate chip cookie maker, not a donut maker or cake maker, a chocolate chip cookie maker!
Sure, you may be a trained baker, but you never thought about whether chocolate chip cookies could be made with gluten-free flour, or the difference in the types of ovens available for cooking the cookies, or all the different chip brands and specialty shops, or at what altitude is best for that amount of flour- And no, you don’t know if they taste better with milk, or coffee, and/or why! ...Now, change questions about cookies to questions from a daughter asking about keeping her dying father out of pain and his general care. “Can I let him eat whole grain bread?”
“Um, I guess, Is there a reason you think that would be dangerous?”
And then they go into a long and complicated history of their father and bread that makes me wonder if there’s something beyond my knowledge of whole grain bread and this particular medicine. So I have to call Dr. R and ask him even though I think it’s a stupid question, but I can’t not double check because of the off chance that there is a thing about whole grain and this drug that I have not yet come across or could not find on internet legitimate medical sites.
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Yeah, so beyond the typical stress of death and hunting down liquid dilaudid for a new admit in uncontrollable pain as fast as possible on a Saturday evening while you’re on call, there’s the “Can she have apples with Mirtazapine because my niece is a Nutritionist and she says she can’t” questions.
So, Laverne and her young, pushy, daughter had these types of questions. I felt full of shit sometimes; I wanted to be full of answers. I felt they could smell the bullshit on me because the truth don’t stink. I had a lot of truth, but one speck of bullshit and you’re not to be trusted.
Laverne called the office everyday for the first week and a half. On call nurse’s were called to visit her. She had what was thought to be a urinary tract infection, we weren’t positive because we only had signs and symptoms to go on. Blood tests were not covered by the hospice program. The medicines we prescribed her were not working and she was limited in her pain meds due to allergies. Everytime I saw Laverne she had a problem with the way our office worked, the way the American healthcare system failed to work, the way Medicaid was set-up, the equipment we used to treat her, nothing was up to par, and why did she suddenly have more bruises on her arms and legs! She was never happy.
And then I made her laugh.
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Our relationship changed. She appreciated a good sense of humor, and lucky for us that’s something I had. I began to look forward to visiting with Laverne. Somedays, she had no issues with which to be dealt. I’d take her vital signs and then sit and laugh with her. We’d pet her three big dogs, and her friend’s wiener dog who was always at the house, they loved attention.
Laverne loved to watch Judge Judy every day, the wiener dog hated Judge Judy. It would sit in front of the screen and bark at Judy. Smart dog, I hate Judge Judy too.
Laverne would tell me about England and her brother, and I’d tell her about my life and the girl I was dating with whom I quickly fell in love and not long after broke my heart.
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Laverne would say, “Oh, the hell with her! She’ll realize the fool she was someday. Either way she can bugger off. Don’t be a fool as well, she’s the past, life moves on.” She didn’t say these exact words, but that’s how I remember it, it’s the essence of our conversations on the matter.
As a nurse, especially a hospice nurse, you have to be careful about sharing the problems in your life with patients you get to know; they’re dying, your problems are trivial. Your focus should remain on their needs. But sometimes, they know you, and you can’t hide it from them. You feel rude not to share what you’re going through- in an extremely measured manner.
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At Christmas time Laverne decorated her house with musical Christmas toy decorations: a reindeer that sang Frank Sinatra Christmas Carols, bears on a carousel that went round and round to Jingle Bells, a Christmas Chalet with little moving people and a working train, and many more of the like. Each visit she shared a new trinket she had on display.
Laverne had multiple-morbidities, all of which I can’t remember. Her hospice diagnosis was heart failure. She barely qualified for hospice care when she first came on. Patients must get recertified every three months. I had to search for things in my documentation to justify keeping her on for the first two recerts. She didn’t seem to be declining all that much. I started treating her in July, around Christmas she began using home oxygen during the night. She could’ve went without, but it made her more comfortable.
She also had a brain disorder I’d never heard of before treating her. It developed after she’d had a mild stroke years before meeting me. The disorder affected her memory and her patience (thus explaining her grumpiness.) It was different than dementia and showed itself in sneaky ways. She had a hired caregiver with her during the days. Her name was Thelma. She cooked Laverne’s meals, drove her places, and kept her medicine in order. Laverne’s estranged husband in Texas took care of her financial and legal matters.
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In January, Laverne began to decline. She needed more sleep, she was having trouble breathing, and she had to use her Oxygen more often. She also began having mild chest pains. We prescribed her Nitroglycerine. I had to explain to Thelma and her daughter that they may have to watch her have a heart attack and die in front of them. That’s what hospice was, you let people die from what was killing them, but you kept them comfortable while it happened.
Laverne began to ask me more questions about how long she had, how it would go. I answered her honestly as best I knew how. I said the same thing I said to most of my patients. We can’t predict, you could be around for a long time, or you could be gone tomorrow, but here’s what you’re dealing with and how it can hasten your death. Patients usually decline with a downward slope of ups and downs.
They’d improve under our care at first, they’d have a bounce, because they were getting a nurse visit at least twice a week, a nurse aid visit twice a week, a social worker visit twice a month or more as needed, visits from a spiritual counselor as needed, and visits from Dr. R upon request. But most always, each down was bigger than the next up, like a rubber ball running out of kinetic energy.
Somedays, I’d sit with her and hold her hand as we talked.
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One morning in early March, I got a text from the office. The office texted me with updates every morning and all day long. I hated my phone. The text informed me that Laverne had fallen in the middle of the night. A nurse was called out, and by the time she arrived, Laverne was on a stretcher getting into the ambulance. She’d broken her hip. When something like this happens it means you’re admitted to the hospital, and if you’re admitted into the hospital you’re off of hospice care.
There’s something about breaking a hip when you’re an elderly person that causes great decline in health. It takes a lot out of you and there’s a lot that can go wrong. Laverne may have had the opportunity to return to our care after leaving the rehab facility.
She never left.
During our weekly meeting four weeks later, the social worker mentioned in passing to our director that since she had died the previous week, we needed to complete some paper work with her estranged husband.
My heart sank. “Laverne died?” I asked.
He nodded matter of factly.
The meeting went on. I sat, holding my emotions, trying to calm myself. People die every day, but I wasn’t there for her. I didn’t even know.
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Every week in the meeting we would talk about the patients who had died under our care that week. Everyone who had anything to say about them said what they had to say, they shared the experience with the group. Afterward, one of the spiritual counselor would lead us in a non-denominational prayer, words of remembrance. It was cathartic. Since Laverne wasn’t under our care at the time of her death, I didn’t get to do this. I wasn’t there.
...And now the tears are threatening a visit.
Hold on a minute.
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Okay, I’m good.
The next week in the meeting, as we went through the deaths, I spoke up at the end and said that I’d like to say some things about Laverne in order to honor her. I held back tears as I spoke of many of the things I’ve shared here. I had to stop abruptly toward the end so as not to break down in front of everyone (it wouldn’t be the first time or the last.)
When I tell people that I was a hospice nurse, they say it must be hard, all the death, they say they couldn’t deal with it. It’s funny, I often feel, and know to be true, that they have no understanding of what it’s like. It’s beautiful.
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Things mean more when facing death, the bullshit of life slips away. I’ve never seen so much unconditional love expressed by people. When a loved one is dying, people drop everything, the dying becomes the priority, they do things they’d never thought they would do, make sacrifices they never knew they’d have to make, and deliberate over decisions with no happy answers, and there is love, you can feel it.
Families expressed deep appreciation toward me, expressed their love to me. I’ve held them as they cried, held them as they died.
When I think back on it. I like to think of myself as their pilot. In each case, all of us, the patient, the family, and the hospice team were on a plane together. It was set to land in a place unknown to them, and I was the captain of the plane. The doctor and the hospice director were on the ground in the radio tower guiding me. Sometimes it was a short flight, sometimes it was longer, but the goal was always a smooth ride with little turbulence, good service, and a safe landing at their new and exotic location.