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.
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.
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...
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.
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.
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.
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.
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 who not long after broke my heart.
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.
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.
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.
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.
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.
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.
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.
I did my best to land them safely at a peaceful destination that everyone will someday never leave.
!steemitworldmap 34.4208 lat 119.6981 long A Hospice Nurse Story, d3scr
Excellent post. It's very interesting and readable, and it's all told in a clear and colloquial voice.
I particularly like where you wrote "the bullshit of life slips away." As I was reading this post, I had a similar (unstated) thought, such that this post is about life / death, whereas so much other material that we read is ultimately inconsequential.
Each day, we might read (or compose) various posts about the economy or about some cultural tidbit or even something educational. And they all serve their purpose.
But, at the end of the day, it's often good to forget the "bullshit" and good to consider how all the nonsense fits into the grand scheme of things. Posts like this do that for us.
Peace.
This is beautiful and sad and uplifting all at the same time. You made me cry and I appreciate that. It is not every day I get a strong enough emotional connection with what I am reading to bring tears to my eyes. Love you man - Cheers - Carl
Thank you @carlgnash. That’s a great compliment. It was difficult for me to write. Like I said, I’ve been wanting to start a book about my year, but everything was too close emotionally. I’ve given it time to simmer on the stove. Laverne is one of many deeply poignant cases I had. Everyday was a new amazing experience and a conversation I never thought I’d have with someone. It’s a dramatic subject and one I’m not used to approaching in my writing. I get bored with my writing if I don’t come across something funny every couple paragraphs. I’m confident I’ll find the funny parts in these stories when I dive into them, they’ll need some comic relief.
Think you may enjoy this one too https://steemit.com/writing/@travelman/travelman-in-cambodia-what-it-felt-like-to-visit-tuel-sleng-genocide-museum-and-the-killing-fields
Beautifully written and the analogies helped convey your message. It was very sad but at the same time was enjoyable to read about how you brought happiness into their life. It is very true how people begin to drop everything for a dying family member and show their true love no matter what. Upvoted and thank you so much for sharing something deeply emotional and close to your heart.
Thanks. I’m glad you enjoyed it.
This is a really personal and heartfelt story @travelman. A lot different to your normal posts, that's for sure. Sorry for your loss. I imagine that was a difficult job.
The quality of your writing is improving all the time as well. I can see it just in the the time we've had SWM up and running. I think this is your best piece of writing yet.
Yeah, travel’s nowhere in the tags. Thank you for the nice compliments. I feel that by writing multiple times a week the speed of my writing has improved. It takes me less time to write and edit something halfway presentable. The ephemeral nature of steemit keeps me from spending too much time on any post Yet, I still spend too much time though because my writing is a labor of love- In fact I’m spending too much time editing this response as I go.
I have a disordered mind, everything spills onto the table at once like a child dumping a bin of legos. It takes me a while to put it all together. I have to cut myself off from going back and reworking sections. It pains me to look back and read poorly constructed sentences I left abandoned on the side of the steemit highway.
It was a difficult job but not in the ways that you would guess. I don’t think of the patients passing as my loss, it was merely the end of our time together. The difficult part of the job was the on-call and the constant texting from the office. I alway felt on alert and it was difficult to turn off the job.
Congrats on getting curied. This post totally deserved it.
Thanks for an emotionally difficult story that was told with care and compassion. You are so right about how the dying person becomes the purpose of everything. Love is raw and real. Perhaps it is why we feel like this so seldom, because we cannot stay that vulnerable forvery long. I can see how one could be seeped in the sorrow finding it a hole hard to climb out of. Many Thanks.
Thank you for your thoughtful comment. It means a lot to me that people are responding to this post.
I can guess you have a bounty of experience to share with us. Please do continue writing.
Since you liked this one I thought you might like a heads up about this post https://steemit.com/writing/@travelman/confessions-of-a-first-year-nurse-nurse-man-year-one-episode-i-nurse-man-does-something-right-for-once
You have my utmost respect for the job you do. It takes a strong person to deal with death on a daily basis! Thanks for sharing. Resteeming this most worthy post.
Thank you. Thanks for the resteem. I’m not sure if it’s strength. Maybe a certain kind of strength that comes more naturally. I didn’t have the strength to stay in the ICU, it was a different kind of lifting. I think I’m just wired to be able to deal with it better than some people. Thanks again.
You are most welcome. Yes, it does take a certain strength to deal with the terminally ill and death in general.
Since you liked this one I thought you might want a heads up https://steemit.com/writing/@travelman/confessions-of-a-first-year-nurse-nurse-man-year-one-episode-i-nurse-man-does-something-right-for-once
I'll check it out.
I really enjoyed reading your post @travelman, so sad but also full of hope in the end, a lovely way to look at it! You piloted them safely to their new destination; takes a special person to do this kind of work, well written post!
Thank you. And thanks for incorporating the “pilot” thing into your comment. I was hoping people would respond well to that analogy.
A truly beautiful story and you told it well. People who are not in the medical profession or have never had a family member die don't truly understand what the caregivers go through or the one dying. It is a noble profession but one in which burn out happens quickly. Caregivers need to take the time to be good to themselves.
Yes, self-care is stressed in the nursing field, but not stressed engouh. On top of the daily stress, many nurses (like myself) tend to judge themselves very harshly, like we’re never good enough, and all the other nurse’s think we suck. It messes with your head. I’m still debating if I will ever return to nursing.
Very beautiful! Nothing I could write that would not seem trivial in comparison. The Lord bless, and keep you!
Thank you. Your compliment means a lot to me.
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😍A very informative post. Great job. Keep it up! 😍
I wasted a few seconds of my life reading this and checking out your page to find that the exact same comment is posted a billion time elsewhere. To give you a chance, what was so informative about my post?
Awesome post friend.
I like your all content because your content type and quality is so good.
best of luck go ahead friend.
Awesome post friend.
I like your all content because your content type and quality is so good.
best of luck go ahead friend.
Weird, it’s almost like I’ve heard this somewhere before. Like, exactly the same? Hmm? I can’t quite place it... Deja Vu, I guess.
Beautiful post. @travelman
Great Blog post!
Thanks for sharing!
Beautiful clouds and atmosphere :-)