A good thing to know as a human, is that even if you feel or look less than lovable, someone probably loves you anyway.  Tonight I was called to the home of a patient by a neighbor who heard the patient’s wife screaming.  The patient had expired as all had expected and his wife was having a hard time.  I met the neighbor, Shelly, in the driveway when I pulled in.  As I reached into the back seat for my stethoscope, she knocked on my window.

 

“I think he’s been dead for awhile, ” she said.  “He’s ice cold. I heard her screaming and she’s upset because I called her sister but she can’t be alone.  She’s really taking it hard.”   She scurried back to her car, slammed the trunk and said, “I have to go to the dump.”

 

I went to the back door as instructed, stepped up three stairs onto  the porch, carefully picking my way around planters and pig statues. I knocked on the window pane and the thin plastic gave under the weight.  I knocked on the wood part instead and a small dog barked.  The door opened and a middle aged, unkempt woman in a tank dress stood looking at me.  Her blond hair was stuck in several places to her puffy, tear stained face.

 

“I’m Brenda.” I said. “I’m from Hospice.  Ellie, I’m sorry to hear the news about Max. Can you show me where he is?”

 

She still hadn’t said anything and started to sob again but pointed to the living room.  I had never met Max, but of course knew his history from team meetings and report.  I had also looked up his diagnosis and information prior to my arrival.  He had died from cancer.

 

“Are you a hug person?” I asked, reaching out to touch her back gently with one hand.

She was not, and continued to cry in bursts, sometimes waling.  I wanted to hug her and to talk with her, but for now, I focused on Max, who was so small and white, I hadn’t at first seen him lying on the sofa.  Shelly was right.  He had likely been dead for several hours.  I placed my stethoscope on his chest, knowing that I would hear nothing.  Next, I listened over the airway.  No breathing.  There had been no question and anyone would have recognized Max as deceased.  I turned from the body to get the pronouncement form, a worksheet Ellie would give to the funeral home when they arrived for the body.

I could feel Ellie’s eyes on me.  I looked up. Usually, the pronouncement is a formality.  The family knows the patient is gone and no one expects to hear otherwise.

“Is he?….”  She begged.

I  paused.  Then, gently answered, “Yes.  He’s gone.  I’m sorry Ellie.”

She sat on the sofa and began to cry.  She looked so alone that I almost couldn’t bear it.

“Is there someone coming to be with you?”  I asked her.

“Yes. My sister is coming. I am sorry there is no place to sit. I guess I could turn the air conditioning on now. He was always cold.”

I  had no plans to sit but she was right.  Every surface, be it furniture, shelf or nook in the wall, was covered with something; papers, knick knacks, dust. I am not judging.  It’s hard work taking care of someone who is dying.  It’s a full time job.  I shoved away a magazine and used a corner of the kitchen table to open my computer and look up the name of the funeral home. I phoned  and the funeral director could hear Ellie crying over our call.  I had to ask him to repeat himself a couple of times.  I told Ellie I would stay with her until her sister arrived.  Then I asked her to tell me about Max.

“I’m sorry I didn’t get to meet him when he was alive.” I began.  “What kind of things did he enjoy?”  Asking this question of people was one of the best pieces of advice I got from my mentor when I was learning to do pronouncements.  Even someone who is wracked with grief will often be soothed remembering a loved one.   Ellie  got a distant look in her eye and a small smile crept to her lips.

“He loved to fish and play his guitar,” she began.  “He was so funny too.  He could always make me laugh. You know,”  she leaned toward me, “I sat with him all day long.  I just went out to feed the horses and when I came back…” She looked at me, daring me to disbelieve her.

“Some people need to die by themselves,” I told her which seems true.  “There are some people who wait for days for a family member to arrive and some who wait until everyone is gone.”

Ellie nodded.  She was quieter now.  I excused myself for a moment when my pager went off.  I went outside to call the answering service just as a car pulled in.  Ellie’s sister and niece met me in the driveway.

Meeting Ellie’s sister, Linda, was like meeting a more composed Ellie.  They could have been, and maybe were, twins.  Both Linda and her daughter were very worried about Ellie.

“Is she okay?”  Linda asked.

I assured her that she was.  She was very sad, and crying loudly sometimes, but she was okay.

“Have you seen other people act like that?” Ellie’s niece asked. “She’s very depressed to begin with,” she explained.

“Yes.” I assured them both.  “Everyone reacts a bit differently, but she is okay.”

I knew that Ellie had a history of  mental health issues.  I notified the office for urgent bereavement,  which means that our bereavement team will follow up with her immediately instead of the customary 1 or 2 weeks.  Anytime there is a dramatic response like that to an expected death, it’s worth a prompt follow up. Most times, the family member is okay but there were enough signs that Ellie needed additional support.

It was reassuring to see, that when she was hot, sweaty, teary and falling apart, her family and friends were there to love her and help her cope with her loss.

 

It was an innocent, polite question. My patient’s wife asked how my weekend away was. She only knew I had taken a long weekend because we had to juggle their visits around last week. Otherwise, she wouldn’t have known my plans. It’s nursing 101. Don’t talk about yourself. Instead, focus on the pt and his life and concerns.  
I was taken off guard because Maureen and I often grouse together about the summer heat. It has been a record breaking one for heat and draught. We New Englanders are not used to steady temps over 90 and weeks without rain. We are used to complaining about the weather and it has been exceptionally uncomfortable and Maureen tells me that has never liked heat. This year she is also facing the loss of her husband of 41 years so I imagine the extreme temperatures are extra annoying.  
So when she asked me how my weekend in Northern Vt was, I answered ” cool, comfortable and nice and quiet.” The correct response would have been ” nice. Thank you.” And that should have been that. That is all they cared about at this stage of life. Edgar certainly didn’t care. He was dying of cancer. Maureen was being polite and I should have registered that. She had a list of questions that were important for her as she continued to care for Edgar. Questions that were of greater importance at this moment than how my days off were.
“He’s gotten very sleepy'” Maureen explained. “Are we giving him too much medicine?”
I explained that it is often hard to tell if the sleepiness is due to the side effects of some of his medications or part of his end of life process. I suspected the latter. She understood that. It’s a tight line between keeping patients comfortable and somewhat alert. I try to ask patients and their families if comfort or alertness is more important while the patient is still engaged with the world. It’s not a great choice but some do have preferences. Some patients say that they would like to put up with a little more discomfort if it means staying present with their loved ones longer. Others want to be deliberately sedated because they are scared of the experience or bored when they can’t do the things they enjoyed. If a patient is already disengaged when I meet her, I watch closely for signs of discomfort and let that be my guide. I teach families to watch for any signs of fretfullness like a furrowed brow or restlessness. Families and caregivers become very good at this and know the patient well so are able to spot symptoms quickly.
 The couple is very friendly and I like Maureen. These are the types of patients who are easy to slip into familiarity with. Hospice nursing is so very personal and we enter families lives at such an intimate time that the boundaries can get fuzzy. I want my patients and their families to feel secure in the knowledge that they are cared for. The art of the deal is learning to balance the genuine caring and connection that we feel for our patients and families while keeping our professional skills at the front of our practice.  

Sent from my iPad

One of the reasons people choose hospice services is because they no longer want to go back and forth to the doctors office or to the hospital.  Hospice doesn’t prevent anyone from going to the hospital if they want to, of course, but we can assist patients with nearly anything at home so we teach them to call us instead of 911.  Each family has a set of bright pink stickers on which our number , 555-6840, is printed. The patients place the stickers on their phones to remind anyone who wants to call 911,  to call hospice first.

I was visiting with a nursing home patient one evening when my pager went off.  It was a distress call from the family of a patient named Bill, whom  I had met once before.  When I got Bill’s wife Denise on the phone, I could barely understand her through her sobs and her words all tumbled out at once.

“I’m sorry….I called 911.  I didn’t know what to do.  Bill fell. I think he’s gone.  The paramedics are here. I don’t know what to do.”

I reassured her that all was well and I could hear someone in the background saying ‘do you want me to do CPR?’ then louder, ‘ DO YOU WANT ME TO DO CPR?!’

“I don’t know what to do!” Denise said again.  ” Bill has a MOLST form.  He didn’t want that.  I don’t know what to do!”

“Denise.”  I began softly.  “It’s okay.  You can honor Bill’s wishes or override them as his health care proxy. Think a second and don’t let anyone push you.  You know what to do.  You and Bill talked about it.”  It was clear to me that the person shouting in the background was so worked up  that he was not thinking clearly.  I knew the bright pink MOLST form that stated DO NOT RESUSCITATE was on the front of the refrigerator in the home.  I was also surprised that a paramedic would sound that frazzled.  I later found out that the person performing CPR was a neighbor, not anyone from emergency services.

I told Denise that I would come out and see them in just a few minutes.  Fortunately, though our agency covers a three county territory, Bill and Denise were only a few miles away and in the evening, the traffic would be light.

The local police were still on the scene when I arrived.  Sargeant Cook introduced himself and asked if there was anything we needed that they could help with.  I have grown to love when police happen to be on hand during a visit.  It most often happens, like this one, when a patient has died.  We are privileged to have some professional and efficient officers in our territory and they are always helpful and compassionate with the families.  How much I appreciate police could be the subject of a separate post.

I found Denise, who had neighbors with her and was calm and focused.  She had already called the funeral home because the director was a friend of the family.  Usually, the hospice nurse does this and it happens after  officially pronouncing the patient dead.  However, another thing about hospice nursing is that you just have to go with whatever the family needs.

Sargeant Cook led me to the room where Bill lay in his bed.”We moved him to his bed,”  he said quickly. “I hope that’s okay. He was lying on the floor and didn’t look too good.  I hope that’s okay.”  His eyes were wide.  In their business, it probably wasn’t okay to move a body without permission.

“Yes.  Thank you.” I said.  “I am sure his family appreciates it. ”

I looked at Bill.  There was no question that he was gone.  He was a cardiac patient and I would bet that he had a heart attack or other event and died, then fell.  Not the other way around.  I placed my stethoscope on his chest to confirm no heart rate.  Sometimes the heart makes a discoordinated sound (a squishing sound, really) even after death for a short time.  This has been unnerving to me in the past and I have to listen much longer, but Bill’s heart had clearly stopped.  I then placed the stethoscope over his throat to be sure I did not hear any breathing.  I looked at my watch and recorded the pronouncement time. 8:15pm. Sometimes families look at the pronouncement form before handing it to the funeral home official and are concerned that the time of death is recorded as long after they know the patient died.  I explain that it is really the time of pronouncement and that they know in their hearts what time their loved ones left Earth.  I turned to Sargeant Cook.

“I am required to notify the medical examiner because a fall was reported within 24 hours of expiration.”

“Okay.  Then I will notify my supervisor also so we all record the same information.”

It was the first pronouncement in which I had to notify the medical examiner and I was pleasantly surprised that I remembered.

As expected, the ME declined the case because neither I nor the police felt that what looked like a fall contributed to Bill’s death.

I stayed with Diane after the police left.  She didn’t want to be around when Bill’s body left the home.  This is a common request from family members.  When the funeral home pulled up, she chatted with her friend from the service then scurried to her bedroom and closed the door before Bill’s body rolled by.  The funeral service quietly took Bill’s body outside to the waiting black Suburban.

I told Diane I wouldn’t leave until  her friends from Connecticut arrived.  They were already on their way and it would be a matter of perhaps thirty minutes.  She talked about Bill and how unreal everything seemed.  I hadn’t known that they had been together for thirty five years.  Diane wrote down the places she wanted to invite people to send memorial contributions.  Just before Diane’s friends arrived, she apologized again for calling 911.

“I am so sorry that I didn’t call hospice first,”she began.  “I could only reach that one phone in the bedroom at the time, and the number 8 key doesn’t work.”

 

 

 

 

 

 

 

 

 

 

 

 

 

On my way home from work this evening, a white tailed deer ran across the road. Luckily, we didn’t collide. This beauty was just close enough for me to notice her in the dusk. According to “Animal Spirit Guides” by Steven D. Farmer, white tailed deer are about the rocky path behind you. “You’re entering into a time of plenty, but the path to get there has not been without sacrifices.” 

One year ago today, I had completed one week of orientation as a hospice nurse case manager at my new job. It has been a year of being cracked open, whipped around and cracked open some more. I have dived deep into my emotional self and learned that I am not crazy. I have been introduced to the notion that we are all entitled to our feelings no matter what they are and even if we can not identify them. I have taught some of my patients about that. What delicious relief when it sinks in.  

I have been pushed to be my best and have appreciated that in hindsight. When I took the job, I told my old friends that I was going to have to “step up my game.” I am grateful that I had the right kind of guidance to learn to meet those challenges. I won an award last month for showing extraordinary compassion to my patients and coworkers. It felt good to be recognized by people who do such amazing work themselves.

Last summer, I couldn’t wait until I understood more of the layers of hospice nursing. Learning about eligibility and what is covered by whom is a tangled mess for the new hospice nurse. Which medications are on our formulary and what does that have to do with coverage and relationship to primary diagnosis? The RN case manager has a major role in identifying eligibility and coverage.  

I even envied my mentors for simple things like knowing everyone in the agency by name and how to buzz up the back stairs in our affiliate hospital without reading all the signs. (I can almost always find my patient rooms on the first try now for the GIP hospice patients.)

I will soon get an opportunity to mentor a likeness of my former self. Our agency has hired a new nurse and I remember perfectly the things that were helpful to me. I can not wait to show her the strategies I have learned and been given along the way this year. Some are for patient care and many for self care. I remember exactly the points at which I was grateful that I stuck with it and the places I learned to rely on the team. Then and now, there are many, many times that I recognize the immense privilege of being part of a hospice team that works at our level and provides an experience to patients and families that preserves comfort and dignity at the end of this life.    

The deer also means that I am “…poised for an enticing adventure, one that will take you down many different paths and lead to many important insights.”

It’s been that already, of course, and it’s only been one year. This is an adventure that is new again and again. The many different paths are those to each patient’s home or that of his or her trajectory as well as my own winding path through the continuum of understanding.  

I wish I had recognized the message when I received it. I would have asked more questions or sat in silence instead of just knee jerk talking, like I do when I don’t know what else to do. It was a simple, powerful message but when it hit me later, I had to pull over on the side of the bumpy dirt road amongst the lupines, and breathe for awhile.

 

I rarely wear yellow gold, but the earrings were special. They are large, gold hoops inside hoops with a fresh water pearl in the middle. They were given to me by a retired physician who lived to be 97 because she never took anyone else’s advice, but relied on her intuition. I put them on that morning and looked in the mirror. They looked good, actually. She had said that there were no obligations except to wear them in good health. I thought about how special she had been and that if I wore them, something special could happen. Then, I put it out of my head to make room for the hundreds of details that had to be sorted out before the weekend. Did all of my patients really have enough medication to make it through? Did I need prescriptions for any controlled drugs before the doctor’s offices closed? Would FedEx get supplies delivered on Saturday even though it wasn’t guaranteed? There were emails from family members to answer, paperwork to finish up and the list felt like it went on for miles.

My first patient was Fredda. She is actively dying and I had been visiting every day since she became minimally responsive and bedbound. She’s too weak to move herself in bed now, so her caregivers turn her every two or three hours if she can tolerate it. I hadn’t talked with her at all over the last few visits because she was either unresponsive or asleep and I wasn’t going to wake her for my convenience. Checking her vital signs or looking at her swollen legs were irrelevant now. I saw that she looked comfortable and talked with her family and caregivers for the majority of the last few visits . She was so close to the end. Her sister said yesterday that she has had periods of time when she is awake and tells everyone that she is having fun. She is happy and emotionally in a great place. As recently as two days ago, she asked people to stand her up in kind of a dance where she gets a hug and a change of perspective. After a few minutes, she tells her sister that she should be in bed for Heaven’t sake and Jillian helps her back to bed.

My car wound around past the apple orchard on the bumpy dirt road that led to Fredda’s. I was admiring the expansive mountain view looking East into Massachusetts when a tractor pulling another piece of farm equipment chugged onto the road in front of me. I hardly minded doing 4.5 miles per hour because it gave me more time to look over the tops of the tiny new apple trees and out into the valley. Near the turn, a field of lupines shimmered purple in the soft, warm sunshine. The tractor turned off.  Left up another hill and right onto Twist Hill where Fredda lived in her art studio apartment. She had a lovely little farmhouse too but the more modern structure in the backyard with its big glass view of the woods was where she intended to die and where she had spent most of her time over the last 3 months as her conditioned changed.

“Knock, knock. It’s Brenda. ” I said as I always did when I slid open the screen door and kicked off my shoes. We aren’t supposed to take off our shoes in patient’s homes but it means so much to Fredda that I always have. I  keep new socks in my car in case I find myself wearing bare feet under my shoes on a hot day. It’s quiet and Jillian is there, along with two of Fredda’s friends. One of them, Carly, is a nurse and has been so helpful to Fredda. Carly tells me that Fredda has been saying things that don’t make sense about children needing to see her and how cute someone was when she was little. Another friend, Kathleen, is sitting in the chair at the side of the bed and gets up when I come in. I smile at her and sit down so that I am facing my patient. “Hi Fred.” I say, leaning close to her. “It’s Brenda.”

Fredda doesn’t always know us all anymore. “Brenda.” Her tiny voice says. “She moves her head to look my way but she doesn’t see me. It’s as if she is looking at something beyond me. People often do this in their last days. They also talk to and about people who have passed before them. I’ve seen it so often that I know it’s universal. Fredda’s daughter Marlene has told me that Fredda recently described Carly’s husband perfectly, though she never met him when he was alive. “A lot of people love you.” She told me.

“I can see that a lot of people love you too.” I said back although I should have either kept quiet or thanked her. I touched her thin warm arm with my hand, getting as much of my palm on her skin as I could, intending to give her some Reiki. After about 30 seconds she inhaled deeply and sighed.

“Thank you for that.” She said.  “Every time you come in here, there are..” she paused and tried to wrestle her hands out from under the blankets. “There are….” she finally got them free and held them up so her palms faced me. “There are two big orbs next to your head. They’re beautiful.” This time, I did thank her. It was wonderful to hear that. There are people who can see  energy and at the end of life, the veil between worlds is so thin. She had been back and forth across it for days. I kissed her on the forehead.

“Safe travels, my dear.” I said. I say this to many of my patients at this part of their journey. When they are mostly not here and very near the finale. I’ve never had anyone be awake enough to respond before.

“Thank you, my dear.” She said.

I doubt I will see Fredda on Earth again. She is ready to go. It feels good to know that Hospice has helped her reach her goals of being alert as long as possible and comfortable. I hope that if we meet again, I  get to know her better. When she is gone, she will understand why I wasn’t able to hear my message when she gave it to me. I am so grateful that, in the field of lupines, it suddenly came in loud and clear. ‘A lot of people love you.’  I will be listening more carefully from here on.

 

Forgive me blog, for I have sinned. its been nearly a month since my last post.  That coincides perfectly with the amount of time our agency has been understaffed.  Though all of us want to freeze admissions to catch up, no one wants to deny someone who desires end of life care.  Illness and vacations have drained us of staff at a time when our census is at a record high. The perfectionist in me who cherishes perfect customer service has gotten irritable and defensive when things fall through the cracks because  of it.  I don’t want to “bump” a routine visit for someone new when our census is like this. I feel that we should continue to take excellent care of the patients we have now at our usual top tier level of service. On the other hand, I want to help everyone.

Increasing revenue is necessary, of course.  Of equal importance is preserving our reputation and staying in regulatory compliance, but we will do both of those things because that’s what nurses do.  We keep up. We will see all of the patients we need to and we will be engaged and present with each one.  The stuff that does drop off our plates will likely go unnoticed by them and their families because it will be things like the finishing touches on our documentation, our rest, our hobbies and our family time. And, obviously, our blogging time.  It is not forever but it does make an emotional withdrawal from the bank of the spirit each time we are unable to do all that we want to for each of our patients. Our team and managers hope we don’t lose anyone.  We talk about that with each other. We say things and pretend we are joking, like “you’re not going to tear your hair out and quit or anything right?  Are you okay?”  That is code for “please be okay and don’t ever leave.” This is a wonderful job.  It’s hard and most of us love it.  I am new-ish but everyone else has been on the team for years. More than a few as many as twenty.  What each member needs, really, is a day off to catch up, and a day off to rest.  Then, our team would be back and running in top form. (Maybe when it slows down a bit.) Thankfully, we are all still sticking together the way we agreed to.  We have the support of an excellent manager, our medical director and each other and we will get through this, hopefully, the way an actor notices he’s flubbed a line but the audience doesn’t.  The work of the hospice team, is, after all, a performing art.

 

Updates on Ingrid and Fredda:  Ingrid has decided to revoke hospice and pursue treatment and we are rooting for her.  She went into the hospital for a surgical consult for her wound and we do not know where she went from there.  I hope to cross paths with her again some day and I hope she gets to see Joe Bonemassa live in concert.

Fredda is having ups and downs.  I visit her more frequently now because she is weaker and a little scared.  She feels secure with even 15 minutes of emotional support in person.  That’s an easy way to make someone more comfortable. Her symptoms of pain and vomiting are under control and her family has come together to care for her.  She says she is in a good place emotionally if not so much physically as she puts it.

 

 

 

My exit sign is lit. I passed a flyer on someone’s door today advertising a class called “Feeling Grief in Your Body.” This was before my exit sign lit but it came back to me along with the ever present, at least in the way back of my mind, question about if hospice nursing is good for me or working to sabotage my mental health. I have one foot at the ‘I can’t do this’ door and one in front of the ‘I have to do this’ door.

It was the last visit of the day. I am supposed to schedule only 3 visits a day instead of the usual 4, because I am the primary nurse on call in the evening after the office closes and am likely to have to add another visit or spend a good deal of time talking with patients’ families on the telephone. Evening is sometimes a time of day when people feel scared or overwhelmed and when symptoms catch up with patients and they need more help. This was my fifth visit today but I had known early that I had a heavy assignment and had really been pushing to keep my documentation up to date and get the visits done thoroughly and in a timely manner. I was doing great and was all caught up with the day’s documentation when I arrived at Ingrid’s. She lived alone in a senior apartment building. Her son Aaron lived nearby and often checked on her. She also had a woman named Candy who helped with household chores and shopping. Candy had known Ingrid for more than 10 years and the two were very fond of each other. Candy was more like a daughter to Ingrid than a paid caregiver.

I visited Ingrid 5 evenings a week for wound care to a diabetic foot ulcer that she had had for months. It sometimes got better but had not changed for a couple of weeks and last week began getting worse. The foot seemed to be melting away. Ingrid most often denied pain but she sometimes would admit that it hurt. I now realize that if she admits that her foot hurts, it would likely be excruciating to most people. She was reluctant to take medication for pain. I could speculate about why. I wondered if she felt that suffering had some significance. We always think about that. This beautiful, earthy woman who exuded pure love to everyone and everything now, had been a holocaust survivor. She knew how to suffer and endure torture. She is, as the saying goes, one of those people who would drown 6 feet from shore rather than ask for help, simply because, for most of her life, there wasn’t any. I am sure that she has witnessed some of the blackest evil there is. She knows terror intimately and how to wait out torture.

Aside from a past that she spent years and years working hard to recover from, “the work,”she called it, she was fond of looking her best. She could make a sweatshirt bathrobe look like Paris fashion because she would accent it with a truly lovely silk scarf and make sure she had on lipstick and that her hair was brushed. She was proud and fiercely protective of her independence and prided herself on being “able to clean myself.” For the previous couple of weeks, I had tried to broach the subject of how she would like to proceed should she ever find herself unable to provide her own personal care. She changed the subject every time. Aaron was not much help. He was so attached to his mother that he intended her to live forever whether or not she wanted to.

I rang the buzzer in the lobby that called Ingrid’s intercom so she would buzz me in. It rang a bit and then I heard a feeble “Hello?” She always said it so it sounded like “hell ohhh,” dragging the last syllable out in a long, low tone. The tone was not as low and she sounded weak. Perhaps she was tired. The day before had been Mother’s day and Aaron had probably been there and maybe some local friends and Candy.

I let myself in to see her seated in an office chair in the middle of the living room, wearing only a slip and a bra. She was pale and had had a loose stool but could not get up to get to the bathroom. A pile of soiled baby wipes sat in a tissue box on the seat of her rollator walker in front of her. She became teary when I reached her and asked if she was all right.

“I wanted to have myself all cleaned up when you got here,” she began. “I’ve had some diarrhea and I couldn’t make it to the bathroom. Oh dear. I wanted to look nice when you arrived.” Ingrid didn’t sound like her usual confident self at all. She even seemed confused.  She was 90 but had been a physician and had retained her sharp mind.

“It’s okay, Ingrid.” I told her. “I can help you. Let me help you to the bathroom and get you feeling fresh again. These things happen. I know it’s embarrassing but it’s okay.” Then I found out that she could no longer walk. Nor had she eaten a thing all day. Or drank because she couldn’t reach her water. She had a lifeline emergency button on a string around her neck and her phone within reach and did not call anyone. Then the worst part became obvious. “Did you get up this morning and into the chair or have you been here longer? Did you sleep in your bed last night?”

“I think I slept in the chair. I must have fallen asleep.” (On my way home several hours later, I wept over this.  Yesterday while I was celebrating Mothers Day, another human being had been trapped in her living room, unable to even get to the bathroom.)

She had been in that chair for well over 24 hours. I couldn’t get her into the bathroom by myself. I didn’t dare. If she tried to stand and fell… I called Aaron. I usually text but I dialed him.

“Aaron. It’s Brenda. ” Ingrid (he refers to her by her first name and to his father as ‘Ingrid’s ex-husband’) needs some help to get to the bathroom. We could use your help. Can you come?”

“Sure.” He said. He sounded groggy. “I was just resting. I can get there in about 10 minutes.”

I had considered calling the fire department first. They are generous about helping to transfer patients when needed but Ingrid resisted and I knew Aaron was near by. When 20 minutes had passed, I texted him. ARE YOU CLOSE?

He wrote back 3 MINUTES AWAY.

Okay. I was only beginning to get an inkling that things were not right. 20 more minutes went by. I texted him again. PLANNING TO CALL THE FIRE DEPT BUT INGRID REFUSES SO WE WILL WAIT FOR YOU.

He wrote back HALFWAY THERE.

What?! I asked Ingrid if I could now call the fire department, and tried not to let on that I thought her son was an jerk. I said things that nurses say instead of “where is that asshole?” like “I hope he’s okay.” I assured her that we would put Aaron to work on something else when he arrived.

With Ingrid’s permission, I knocked on her neighbor’s door. Bobbi and Pat came to the door. They were so generous about helping and came right over, Bobbi in pajamas and Pat in shorts and a tee shirt. We got Ingrid transferred onto the wheelchair , into the bathroom and onto the toilet. I wanted to put her straight into bed but she insisted on sitting on the toilet so Pat and I helped her get there. Bobbi met Aaron at the door and I could hear her talking with him.

“It’s okay. This sofa has your name on it. Sit right here, Aaron. Everything is okay.” Aaron was intoxicated. When I went out into the living room, he just stared at me. I admit to feeling angry but know that he is fighting off demons in his own way too. He was scared and very dependent upon his mother emotionally. Maybe financially too, and she was getting ready to leave.

I called my supervisor to give her an update and to find out what my options were. I was not about to leave Ingrid in the care of her drunken son and it certainly wouldn’t have been fair to her to send her to the hospital. No one knew what to do that would both preserve the patient’s dignity and keep her safe. Pat and I got her into bed. I called Candy and explained the situation. She was an hour away but said she would come.

During the hour that I waited for Candy, Pat and Bobbi went home and asked to please be updated when Candy arrived. I changed the dressing on Ingrid’s foot. It had been soaked with urine, likely while she was trapped in her chair all day. Pat and Bobbi came back again to see if Candy had arrived and to check on Ingrid. Aaron was beginning to come around, but not too far. He could walk unassisted but still wrinkled his face at me whenever he made eye contact or while listening to something I said. He reminded me of Foster Brooks, the comedian who played a lovable drunk on many variety shows back in the day. Way back. Talking with Aaron about final arrangements or how he thought he would fare once Ingrid passed, was useless. He said things like,”I can keep her alive until she’s 100 if we have a wheelchair, and “I will probably be mad at her when she passes and she will say ‘don’t be mad.’ I stopped after that and finally Candy arrived.

I reviewed the tentative plan, let her know that Ingrid could no longer be alone safely and could not walk. I didn’t want to say out loud that she had been in the chair for more than 24 hours but I had to. Fortunately, she was clean and asleep in her bed by then with a clean dressing on her foot.

While I was minding Ingrid and her family, my supervisor had been getting the ball rolling with some options to investigate in the morning. Bonnie, one of our social workers would see Ingrid first thing. A nurse’s aide would be there to provide personal care. I said goodnight to Candy and Aaron around 11 pm and went out into the night to my car. A few texts to the supervisor to let her know I was on my way out and she texted that the team would know about the situation by morning. Our Hospice team has a wonderful voicemail system so that everyone keeps current with all of the patients. Hopefully, before I was even up, it would all be sorted out. That is the magic of hospice. A member of the team identifies an issue and the right other members are dispatched to help. I am not sure what will happen to Ingrid. I will keep you posted. I feel she may choose to leave Earth instead of her beloved apartment and all of her treasures. We will keep tabs on Aaron after that for 13 months to set him on the path to healing from his grief. I am lucky too, because I know that the team is also keeping tabs on me and I will get out of this okay. I will not have to feel this grief with my body forever and that exit sign is dimming already.

My phone rang at 830 in the morning.  I didn’t hear it, but it did.  I work until 930 at night and paint until 2 am sometimes. When I  checked my messages at 10, there was a distress call from one of my patients.  Patients eventually get my number and I don’t mind calls.  I tell everyone that if they need something urgently, please call the main number in case I happen not to be working and that usually works fine.

Fredda was not much older than me and a wonderful artist.  I always enjoyed making visits to her because we would meet in her studio with its big glass view of the woods. She had a anal tumor that had recently grown so large it was visible under her clothing. At her admisson visit, she told me that she had lived a blessed life and was not worried about dying. She was only concerned about comfort. She showed me her bed, tucked into a cozy nook and surrounded by photos and paintings that represented the memories of her life

“That’s where I will die,” she said, pointing.  “Right in that spot.”

I so admired her.  She had lived her life her way and that was the way she would die.  She didn’t want too many interventions.  She told me she really only agreed to hospice care to get morphine.  It was such a hassle to get enough of it through conventional care. She was right about that.   She otherwise used medical marijuana and some supplements.

We talked about what to expect as the end draws near.  It was likely that the tumor would begin to bleed and eventually, bleed so much that she would fall asleep and be carried away. Over the last month, I had encouraged her to get dark sheets and towels in order to minimize the visual effect on her family.

“I can’t sleep on black sheets,” she told me.  “They will just have to deal.”

Fair enough. I still mentioned to a family member that black towels were a good idea.

Her phone message was garbled but I heard, “It’s a bad day. I am having so much pain.  I am on my way out…which is okay but I’m bleeding again and it’s a little scary. Anyway, I just wanted you to know what’s going on.  Thanks.  Bye bye.”

Normally, I start work at 1 o clock in the afternoon so I try really hard to do my own thing until then.  Hospice nursing is emotionally and mentally demanding so we learn that if you wish to be able to do the job for any length of time, caring for yourself is non negotiable. It’s so easy to try to be available whenever your patients need you but important to allow the team to cover issues when you are not working.  Fredda was different though.  She was suspicious of new people and intensely private.  I was the only nurse who had seen her.  Our medical director had met her and that was it.

I texted Eileen, our nurse manager.  I gave her the information and asked her to call Fredda.  I WILL START EARLY TODAY IF THAT’S APPROPRIATE. I added.  I COULD BE THERE BY NOON.

I am a registered nurse.  I have seen some things that I sometimes forget not to talk about in polite conversation, and then, when I see the looks on people’s faces, I realize they are scared. Nurses can take a lot.  In addition, my baseline personality is pretty calm.  I don’t worry about much because it seems like a poor use of time.  Today, however, I couldn’t get to Fredda’s fast enough.  I was certain that I would arrive just in time to witness her last breath and  wanted her to be comfortable and not scared when that happened.  I wanted to protect her family from the gallons of blood that it would look like were running from her body.

Her sister, Jen, met me at the door.  “She’s in the studio.  Her friend Kit is with her.”

Kit is a pediatric nurse and her presence is reassuring for Fredda so I took a deep breath, and slid open the studio door. “Knock, knock. It’s Brenda,” I said.

“In here.” Kit called. “We’re in here. By the bed.”

I rounded the corner and saw Fredda, standing next to the sink, eating a slice of watermelon.

“Hello,” she said.  “I am feeling so much better.  I am very sorry for the call this morning.  Thank you for coming.  I hope I was nice to Eileen on the phone.  I didn’t want someone else to come.  I am a suspicious sort. I felt better just knowing you were on your way.

“I am so glad you are feeling better.”  That was for sure.

On my way to the next visit, I was still thinking of Fredda.  This is how it is as a hospice nurse.  I sometimes wake up in the night thinking about my patients.  I often dream about them.  I do a mental inventory about their medication and supplies, did I choose the right plan for wound care, is the estranged daughter going to show up before her mother dies. That sort of thing. I worry that it isn’t healthy for my mind to be racing every second and I know that my colleagues have the same issues.  What I don’t know, is how you help that. Yes, we are nurses.  We are also human.

While thinking about Fredda and how I had felt on my way to the visit, I wondered if I was feeling protective of her as I would any of my patients or if I was basking in the knowledge that I was the only nurse she wanted there. I’d like to think the former, but, like Fredda, I am suspicious, but of myself.   Thankfully, I realize that most patients want their own nurse and I can feel good that my patients are no different. But I also remember that I am part of a team. When I am not available, other nurses take brilliant care of my patients and I would be wise to prepare my patients up front for this possibility.  It’s good for me and good for them.

My assignment was to begin at the home of a cancer patient who has had difficult to control pain.  Francie went quickly from oral morphine  to a CADD pump that delivers morphine continuously. She can give an additional dose when needed by pushing a button. She needed it as often as the pump allowed and we had gone up and up on the dose which is okay with opiods. There is no ceiling on the dose and it’s whatever works for the patient, only nothing had worked for her for more than a few days at a time.  We started oral ketamine, an anesthetic which looked promising for a couple of days until Francie called the office with an urgent need for help. She couldn’t take the pain anymore. She lived alone and always responded well to companionship. Each time I or anyone else had visited, her pain decreased. Every member of the team had noted this. I assumed I would get there, we’d talk, review her medications and make sure she had remembered to take what she could and I would leave her more comfortable as always. Although I enjoyed visits with Francie, her house was dangerously dirty and cluttered. It smelled of old cigarette smoke and used cat litter. I usually scheduled her at the end of the day so that my clothes didn’t carry unpleasant odor to other patients. Cigarette butts were on the parts of the living room floor that were visible between clothing and trash. The thing that didn’t make any sense was that Francie was an intelligent, engaging woman. She was a skilled conversationalist. She knew about science and the arts and kept up with what was going on in the world. In the midst of this squalor stood a perfect cello and she played several instruments. Underneath ropes of cobwebs, paintings and photographs of her own creation hung on the walls. We didn’t know her whole history. Here was a bright, articulate, engaging woman living among piles of trash and dirt. I found Francie lying in her bed, half awake, maybe not even half, smoking a cigarette.
“Are you awake enough to be smoking?” I asked, leaning over to look at her face.
“Yes. I never smoke if I’m not awake enough.” She extinguished the cigarette.
Cigarette butts of all sizes covered her bed. Some were half under her body and a pile of ashes lay on her pillow. There were more ashes on the floor in the carpeting. Then I noticed burn holes in her shirt.

“Where is the pain, out of 10 today?”

“10.”

“Have you given yourself a bolus dose with the pump?”

Francie hit the button, delivering an extra dose of medication, while I tapped out a text to our medical director. PLEASE CALL ASAP. INTRACTABLE PAIN.
Dr. G called right back and I reviewed what Francie had taken and at what time.

“Give another 20 mg of ketamine and call me back in half an hour.” he instructed.

Thirty minutes later, Francie reported in a whisper that her pain was 9.5. With another bolus dose of morphine, it was at 8. At the 45 minute mark, I texted Dr. G. PAIN HOLDING AT 8. OTHER SAFETY CONCERNS HERE. PLEASE CALL.

Dr. G. was tied up with an emergency. I tried our manager. She had stepped out.  I could not leave Francie alone.

“Can you get out of bed Francie?” I asked her.
“No.”
“When was the last time you got out of bed?”
“Yesterday.”

“And the pain now?”

“11.”

I texted Dr G. again. I hate to admit that, without being able to reach anyone, I was beginning to feel trapped and worried about Francie.  I couldn’t leave nor immediately make her more comfortable.  My eyes burned from the smoke and I felt queasy. COULD USE YOUR ASSISTANCE ASAP

I phoned our social worker and explained the situation.

“I can’t leave her here.” I said. “I called her friend to come stay with her until I hear back from Dr. G. but she can’t be here for 3 hours. She is baking bread.” The last word wavered and I felt tears begin to prickle at my eyes. It wasn’t just the smoke. I stood next to a window and slid it open.

“There isn’t much you can do about this right now.” Bonnie explained. “This is how she chooses to live. We’ve tried to get her to go into a facility before.”

“Yes. I know.” I hung up. I did know that people have the right to live however they choose if they are of sound mind, but still did not feel safe leaving her.

The phone rang. I explained to Dr. G about the pain and the cigarettes, the burn holes and that Francie hadn’t been out of bed since yesterday. We decided that the only compassionate thing to do was to admit her to the hospital for pain control and so that someone was with her.  I called our office to arrange transportation. Francie agreed to go and while we waited, I rounded up the things she wanted to bring.

“Will it help? ” she asked. “I can’t take this pain. Maybe I am supposed to suffer because I am a bad person,” she said softly.

I listened as she tried to reconcile parts of her life.
“I think we can get the pain under control in the hospital,” I told her. “There are doctors and nurses there to help you 24 hours a day. We can help you better there.” Hospice would be able to continue care for Francie in the hospital also.
“Will you feed the cat before we go?” she asked. “Leave the door unlocked because then my friend can feed them.”

I cracked open a can of Bandit’s food and he came running. I freshened his water and looked out the window over the kitchen sink as the ambulance pulled in.

We got Francie to the hospital and her pain under control. She is now mostly unresponsive, but for the first time, comfortable. She is sleeping in clean sheets and able to rest. Her forehead is smooth and her limbs are relaxed.  I often wondered if part of her intractable pain was the environment in which she lived all by herself. Maybe it’s the combination of medication and the ability to change things around the clock as needed that have helped Francie to be more comfortable. I think being around other people and feeling cared for have a lot to do with it too.

 

My phone rang. “Hey Brenda, it’s Eileen. We have someone over in the Emergency Room for an informational and maybe sign on. It sounds like she isn’t doing very well. She is in room 12.”

Nursing is always about re-prioritizing, no matter what your specialty is. I checked to be sure I had the information booklets I needed, made a legal u turn and headed for the hospital. When I pulled into the lot, I took a moment to open my computer and get an overview of the patient I was about to see. While the computer came on, I phoned the facility where I had been headed to make sure they knew I would be delayed. Gladys was 5 days away from her 94th birthday. She and her son were in one of the glass doored rooms with a curtain pulled around them. Gladys was unresponsive.

” Hello. I’m Brenda, one of the nurses from Hospice,” I began. “Are you Peter?”

“Yes.”

Peter looked bewildered but we talked a bit about hospice. His father had been on hospice service years earlier. Peter’s mother had been sick with respiratory difficulties for a long time but now, with pneumonia, it looked like the end was very near and Peter knew exactly what to do.

“I just want to take her home. That’s what she wanted. To be at home in her own bed.”

“We can help with that.”

I texted our team coordinator, Kristen, to “stand by.” I would need equipment fast. Gladys needed a specialty type of oxygen delivery system because she needed a high flow. I asked Kristen to please order a bed, an overbed table, and the high flow oxygen. The case manager in the ED already had prescription for morphine and lorazepam faxed to the local pharmacy. There was no time to wait for delivery from hospice pharmacy tomorrow. People with respiratory difficulties respond well to morphine and lorazepam. Morphine is a pain killer but also eases shortness of breath and lorazepam takes the edge off the scary feeling that you can’t breathe. Peter would send his nephew Bruce to pick up the medications and wait for the equipment company.

I went out to the desk to touch base with the case manager. “Has anyone seen Robin?” I asked amidst people buzzing by in every direction. Our hospital has one of the busiest EDs in the area and it often feels like it.

“Okay,” I told Robin. “The equipment is on its way. You should be able to book the ambulance for about 5 or 530 and I will go see her once she is home.”

“Great.” Robin said. “I will go call them now.”

Gladys arrived home at 600pm and I made a visit to her there. She remained non responsive but was comfortable and her face and body were relaxed. She was tucked into a hospital bed in her little room at the back of the house where she had raised three children, where her husband had left Earth years before. There were black and white photos of her children on the walls over her bed. They were graduating from high school, or posing in their Easter clothes as little kids. Gladys had a small framed wedding picture on the table by her bed. In the picture, she and her husband were no older than their youngest grandchildren.

I made sure that Peter understood how to administer medication if it were needed and how to turn her in bed. There were other family members in the home and all listened carefully as I showed them how to draw up the medications. They asked thoughtful questions and were prepared to do whatever was needed for Gladys for however long it took. When I was certain they had our phone numbers in view, and would be okay until we visited again tomorrow, I said goodbye.

As I stepped off Gladys’s front porch that evening, I couldn’t help notice that directly across the street was a bar. Outside the side door was a woman in flip flops and pajama pants smoking a cigarette. She was also having an animated discussion on her phone I thought it so ironic that behind me, the veil between this world and the next was growing so thin, while in front of me, it was as thick as a stone wall.

At 830 that same evening, Gladys passed away. I visited again to do the pronouncement. Peter had been in the other room at the time, though he had been by her side the entire day. Some people worry that their loved one is alone at the time of death, but some people need to be alone to die and won’t until they are. Peter was sad, but not distraught. His mom had gotten what she wanted. She had gotten home. EDs are wonderful places and many, many lives are saved there. When the end is inevitable, however, many people feel much more comfortable at home. Gladys got home just in time to die. Lots of people mobilized quickly to make it happen and it was a big win for her and for her family.