IAmA Nursing Assistant for a hospice agency in Cleveland OH. I have taken care of folks who have terminal illnesses and are sick and/or dying for 5+ years. AMA

Have you ever had to talk to family members about their loved one being there in your care? If the family members are struggling to come to terms with the reality of the situation do you feel the need to say something?

Family members are usually on board with the fact that their loved one is under hospice care. of course we also get families who, unfortunately, are in denial of the hospice diagnosis, we have a Hospice Social Worker who are involved with these types of families. Families who are in this sort of denial are very hard to speak to, we try to see things their way but sometimes their way truly is very unreasonable and unrealistic. Its very difficult to say anything though, I can only tell them that I'm deeply sorry and that their loved one will be cared for very well and will be kept comfortable until they inevitably die.

Good to know, thanks for answering. Also, thank you for doing what you do. From reading this so far I can tell it's not something just anyone can do.

I appreciate your kind words and I truly believe that we all, as humans, have the compassion to do this job, its all about allowing ourselves to care for someone who is dying and experiencing the 2nd most important day in their lives, the day they die.

With full respect to the care you show for people in hospice I'd like to know your personal opinion on the right of a dying but still right thinking person to end thier own life.

I'll be secretly prepared for my end should I be diagnosed as terminal and the law can go suck as egg. My life, my decision.

I get told by patients all the time that all they want is to die, especially if they have a painful and debilitating disease such a cancer. Im actually one who completely agrees with what Dr. Kevorkian did, he provided a way out for people who had a terminal disease, were suffering and "lingering". Many of my patients are miserable, have uncontrollable pain, no quality of life and just want expedite their dying process.

Thankyou.

It is a ULTRA sensitive issue and I appreciate your willingness to discuss it.

I have no way of finding out - but I really do wonder. People who are strictly anti-euthenasia, do they at the end of thier lives, suffering in pain and discomfort ever look back on thier beliefs and wish they too had the choice.

Not entirely related, but Mother Theresa was against painkillers because she believed the poor people in her care should have the full experience to get closer to God. But when she had an illness and was in pain, she got painkillers.

Yeah, I guess you'd have a change of heart once you're in that situation.

I often wonder that, Im sure those people will have a different point of view if they ever get to that point.

Earlier this year I helped to look after my father in the last weeks of his life. He died of cancer in his stomach and had to deal with pain until literally starved to death. It was really hard thing to go through, for him and for us, the family. Thanks to the doctors we were able to give him -liberally- morphine. I don't think anyone that go through that will be against euthanasia. If my destiny is to get painfully sick or get some horrible debilitating condition, I will go to Dignitas in Switzerland and will do what this lady did.

Yeah, its actually illegal to commit or assist in suicide in the United States while its common practice in other parts of the world.

Just wanted to say thanks you for doing the work you do. I lost my mom to cancer and the hospice people were like angels to me. No only did they take care of my mom, they gave me a chance to sleep. I was trying to take care of her but at the end she needed 24 hour care and I was just not capable of that. They provided 24 care and the main nurse cried some when she found out my mom had passed away. I don't know how you all do it but I am truly great full for the help you provide. Thank you.

Thank you so much for that, I can tell you that after a while, this becomes much more than a job, i love what I do because of the gratefulness that we get, the many thank yous.

Do you ever cry when you lose a patient?

I have, not often but definitely have. For example, a couple of years ago I cared for a man who's diagnosis was Chronic Liver Disease, I cared for him for about a year and a half and we did develop a great friendship, especially because he was 52 years old and still able to walk around, cook, and even drive. This was also a patient who was on the brink of entering "stable status", this is when a hospice patient is no longer exhibiting hospice symptoms, essentially are no longer seen as they're gonna die within 6 months. I remember me calling him on a Friday afternoon to see how he was and he had told me that he had a pain in his stomach but that he felt alright, the unfortunate thing was that the next Monday (I don't work on weekends) I find out that he had died the the before on Sunday. It was by far the most devastating death Ive ever experienced while at this job. We are, obviously, encouraged not to get too attached to patients but this patient was special, we became friends.

I would imagine, I think it probably takes a very empathetic and caring person to care for others, would be very hard not to develop some type of special bond with your patients, especially for them to feel comfortable. I commend you for helping others, very admirable.

Ive always said that if you do not develop a bond and a friendship with patients then you can't provide the compassionate care required for this job.

What led you to get into the hospice business?

I was a manager of a store in my local mall and really was tired of working a meaningless job and a friend of mine told me that she had gone for her STNA license and that maybe I should too. I actually had no clue what it was to be a nursing assistant but said hell with it and went for it. Shortly after I started I found out that it was about physically caring for people, meaning bathing, feeding, toiling, etc. I wasn't too sure I wanted to proceed with this training but stuck it out since all I had going for me was an exciting future in the world of retail. After I finished I started working in a nursing facility but wasn't very fond of the job, loved the residents who lived there and that I cared for in a daily basis but the administration and management was awful. Once again my friend (who persuaded me to do this) tells me that she started working for a hospice agency and loved it. So basically got hired and here we are 5+ years later, loving my job and glad and thankful for my friend who helped me into this field.

Thank you. My dad is in the hospital and will be transferred to hospice in the next couple of days. Knowing there are people like you to help take care of him had taken a huge weight off of our shoulders.

I appreciate that and I'm sure your dad will be well taken care of. Hospice care really is a whole different field of medicine, one that encourages and promotes comfort and quality of life as opposed to preventative and/or aggressive treatment.

Have you ever encountered somebody who had been abandoned by their family?

Absolutely, I primarily go to patients homes/houses, but also go to nursing facilities and some of those folks really are abandoned, we are told by patient and facility staff that we are the only company that this patient gets. I am actually going to work 12 hours on Christmas Day to visit patients in nursing homes who otherwise wouldn't have anybody to spend Christmas with.

Also, Ive actually cared for a man who was actually homeless, we got the hospice referral from his Dr and were told that his address was literally under a bridge on the West Side of Cleveland. We used to drive out and bring him food and a thermos full of hot coffee. We were fortunate enough to place him in a homeless shelter in downtown Cleveland where he dies a few days afterwards. That is actually one of the prouder moments of my life.

What's the best life advise that one of your patients has ever given you?

I know this may sound cliche but Ive teen told many time to not take life for granted, which is very fitting for this line of work. I cared for a man earlier this year who told me to watch Jimmy V's speech during the ESPN Espys from about 20 years ago. I did and it really moved me, unfortunately the patient died before I was able to thank him for telling me to watch it.

I have had a few friends who have died from cancer, and they have all been very philosophical about it towards the end. That is, they accept the fact that they are dieing and are at peace with it. Is this something that is common among your patients?

Absolutely, folks usually accept the fact that they are nearing the end of their lives. I'd say that at least 80% of all patients i've cared for usually are not only ready to die but are welcoming it, especially cancer patients since its such an awful and sometimes painful disease.

I think this is an amazing thing you are doing. This seems like a tough job not many are willing to do. I have read lots of ram dass books and his thoughts on death. This has inspired me to want to get into hospice care. Do you have any advice for people wanting to get in to the field? Also I am about to move in with my grandma to take care of her she is very stubborn especially about things like getting proper nutrition how do you deal with patients that don't want to do things that will ease some of their pain?

As for advise, be willing to deal with heartbreak often, the patients that you will care for are under hospice care because doctors have determined that they have 6 months or less to live (some make it much longer but others barely make the 6 month mark). As for stubborn folks such as your grandmother, I'd have to say that someone is entitled to their own free will, if they don't wanna eat something or take something to make them comfortable, that unfortunately is their own prerogative. On the other hand, if a patient is dealing with some sort of mental illness such as dementia, alzheimer's, etc. that is definitely a different story. This people no longer have the ability to make their own decisions an must be heavily encouraged to do what the caregiver believes is best.

Thank you for doing what you do.

Thanks, I'm very fortunate to be working in a field that's as rewarding as this one.

Anything paranormal/unexplainable you've witnessed around those on the fringes of death?

In my experience, when someone dies, there seems to be an overwhelming sense of calmness and peace, its eerie actually. Only real "paranormal/unexplainable" experience was a candle (at least 10 feet away) being blown out at precisely the same time of death of a patient, they took their last breath and the candle went out.

Given this exposure and desensitization to death, how do you think you will react when you realize you're about to die?

Clarifying: (I realize it's hard to predict exactly, but maybe how you predict you would react now compared to before your experience)

Thats so incredibly hard to say, I'll say this much, I hope I'm as content as most of my patients are. Even though I work and deal with death all day, Im still very scared about whats after this life. I have come to terms with the fact that death really is a beautiful thing, its gonna come to all of us and I can only hope that I experience the natural death that all my patients experience as opposed to death by accident. The dying process itself really is fascinating and beautiful, the way the body prepares itself to shut down, releasing endorphins to make the transition painless, causing unconsciousness and calming your every nerve and muscle and allowing you to literally drift off into the unknown.

I totally thought you were a girl, most guys don't like the idea of nursing especially hospice.

I was about halfway through nursing school when I took time off for personal reason and I know how emotionally exhausting it can be. You're doing a wonderful thing though. I kind of want to go into hospice care but I'm undecided, I think seeing so much death would kind of wear you down.

I thought the same thing but it really is a totally different experience to what you may think. We don't care for a dying patient, we care for a living person who has a terminal diagnosis. We're all going to die, its just that hospice patients have an idea of when they're going to die. We try to make their last months, weeks or days as memorable as possible for them and their families.

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A few years ago during this same time, Christmas, I took care of a man in his 60s who was actually a member of Cleveland's chapter of the Hell's Angels and was, even in his condition, a terrifying man who took no shit from anybody and wasn't willing to accept any sort of help. Bikes were his life but he was too sick, too debilitated to walk, let alone ride a bike. Our Coordinator of Volunteers was able to set up a "drive by" from a few hundred bikers in the Cleveland area who actually drove by the front of his house on Christmas day, revving up their engines and making as much noise as they possibly could (we got the okay from the city and neighbors to do this as their was gonna be so much noise). I remember the wife telling me that the patient said to her that he couldn't believe that anybody would care so much about him to set up such a spectacle. He died a few days after that.

From one NA who works in assisted living facility to a hospice NA ...

Thank you so much. I know a lot of people that are so grateful for you. They look forward to their shower days or whenever they get to hang out with you. You guys ate so awesome!

Yeah, we as hospice workers do also look forward to seeing our patients, especially in a nursing home setting knowing that some don't really have anybody/anything else to look forward to during the day. And Ive met some awesome people who I personally like to hangout with as much as they do.

My grandmother was in the hospice and passed away on the 12. I'd just like to say thank you for being there and caring for the patients. Too many of them die alone, and you all help them out with your kindness.

It sounds like you had a good experience while your nana was under hospice care and I think that's what all of us hospice workers, no matter place of work, strive for. And yes, too many do die alone but we do what is called "presence care", where we would literally go in and sit quietly with someone who we believe to be actively dying and may have less than a day to live. We try to not make patients die alone or in pain.

Didn’t have a question, just wanted to say I think you have the hardest job imaginable, and praise your strength, knowledge, and empathy to do such work. Much props.

Thank you, this is not a physically tough job but I do believe that its a very emotionally tough profession, especially knowing that Mr. X, who over the past year you've developed a nice relationship with, will die soon.

How has your work changed how you live your life?

I've definitely gotten a new appreciation for life while working in this field, life is a very fragile thing that I see end on a daily basis. I've also found myself trying to spend more time with my family.

We live in a death-phobic society. What's the one thing that we need to know about death and dying, before we do it?

Well, in my experience, death seems to be a beautiful experience. Patients nearing the end have told me that they've never been so relaxed in their lives. Natural death is a wonderful thing since the human body prepares itself to slowly shut down. Organs slowly shut down, breathing becomes shallower, the brain releases endorphins which create a feeling of euphoria, comfort and relaxation and then we drift off.

I know this is late and you may not see it, but thank you. My mother died in March 2012 and her last week was spent at home under hospice care. You are all wonderful and I am forever grateful.

I thank you so much for that, I get stopped on a daily basis by folks with experiences while under a loved one is under hospice care and I, personally, never get tired of listening. Its awesome to know that what we, as hospice workers, do is so incredibly appreciated.

I've heard a few people (doctors and nurses) say that they can tell when a person is about to die. That there's a specific smell and visual characteristics that people display? Are you able to confirm this and maybe describe what they are?

Absolutely, we see what we refer to as the "death rattle", this is built up saliva and mucus that lingers in the throat, most people who are exhibiting this are usually already unconscious and ready to die. And as for smell, the only thing that come to mind is a smell of bleach, very odd scent that is unlike anything Ive smelled before. This is usually cause by the body itself as its shutting down, organs cease to function and do release quite a distinct scent, not a rotting or decomposing smell though.

What is your personal take on what happens when we die?

I feel like their HAS to be something after this, whether its heaven, afterlife, etc. I believe that we all will be in a higher plane of existence. Our brains primarily work out of electrical impulses and, like they taught us in high school, electricity cannot be created nor destroyed, only transferred into another form of energy.

I used to deliver meds to these people, nursing homes etc..

Sometimes you could smell someone had lost control of their bowel movements. It was the most godawful smell I have ever smelled. Are you familiar with what I'm talking about? Do you know what causes this?

I am familiar, usually the bowels and bladder release at the time of death. The smell also is usually pretty bad since someone's body does go through somewhat of a shut down period which can take anywhere between 1-5 days, this is what we refer to as "actively dying", pretty much your body is dying from the inside out while you're still alive and this can cause quite an odor at the time of death.

oh my. So it wasn't just poop i was smelling. I was smelling death.

If the odor was coming from someone who was dying, unfortunately yes.

Is the smell/process distracting to the family if they happen to be there at the time of death? If so how do you deal with it?

We try to prepare the body before the actual time of death, especially by putting an adult brief (diaper) on the patient, this will catch and contain any urine and/or feces that the body might release. We also perform what is called "post mortem" care, this is when we clean a body up after the patient has died, essentially a full bed bath, this is not only for any release of bowels but also to show respect for the deceased, we wouldn't want the family to see their loved one in a mess.

One tip my nursing assistant instructor gave was to spray just a little bit of the patient's signature perfume/cologne. It smells nice for anyone and smells like mom/dad to the family.

Great tip, thanks! I usually try to light a candle or incense.

What has been the most heartwarming moment of your time working so far?

One of my first cases was a lady who was in her mid 90s living and being cared for by her daughter. I remember calling to set up visits and she'd always refused, Im guessing since I was a man that was nearly 70 years younger. After a while the daughter convinced her to take a visit from me and see how it goes. I arrived and explained that my visits do not have to involve personal care and could be strictly social. We started out visiting twice a week and having amazing visits, she would tell me incredible stories about her childhood and I would share stories about whats new in the world since she couldn't really get out anymore. We developed a great bond and she asked me if I can come visit every day. We had daily visits for about 3 months. She started to quickly declined and didn't want anybody at the bedside other than her daughter and myself. Before she died she told me that letting me into her life was a smart decision and that she had grown to love me as a grandchild. She died the next day, the bond her and I developed was amazing and unforgettable.

So, I hope this is something you've heard so many times that it has become annoying and, while meaningful, largely insignificant: I really appreciate your work. Hospice workers were extremely helpful and comforting to my family (and especially my grandmother) when my grandfather died two years ago. I do have a couple of questions, which I hope you are comfortable answering.

Do you - as someone involved in the industry - have an opinion about teaching students about hospice/palliative care (specifically in high school). I took a Bioethics class at my private high school where we read books about medical ethics issues, including the book Dying Well by Dr. Ira Byock. I feel this class had an important impact on my life, but I've often wondered about the opinions of professionals regarding this kind of class.

And, on a more lighthearted note, have you ever had a patient say something completely inappropriate/make a comment about you thinking you had already left? My grandfather had a wonderful, talented nurse who also happened to be quite large. My grandmother was walking her to the door and my grandfather, thinking she was gone, looked at me and said "Isn't that the biggest ass you've ever seen?" I don't think she heard, but she was an amazing woman and I often hope she didn't hear that comment and think we appreciated her any less.

I apologize, this comment was quite long. Thank you for your insight into a largely overlooked part of life.

I do believe that people should be exposed to death early on because this is a natural part of life, why avoid it. I think the more we know, the more informed we can be through life and avoid the fear of death. It shouldn't be the elephant in the room.

As for inappropriate comments from comments, I have heard TONS! Seems that people's "filter" are no longer a worry of theirs, especially when they know that they won't be around long enough to get any backlash. I had a patient earlier this year that would speak very inappropriately to his nurse and social worker, all while his wife was sitting in the room. He would blow kisses to the nurse and was always trying to get a feel of her breasts, it was incredibly uncomfortable and we would all tell him that this wasn't acceptable behavior, I don't think he cared and kept this up until he died.

What's worse: dealing with death on a daily basis or living in Cleveland?

Source: lifelong Clevelander

You know, if you look for the bad in this city, you'll find it.

Ill say this, adversity brings out the best in people, whether we live in the worst parts of a city or dealing with death, we all need help at some point or another and their is enough good people to provide it. I've taken care of folks who live in the worst parts of this city (93rd and Kinsman, 55th and Broadway, MLK and Harvard) and these turn out to be some of the most delightful people I've ever met.