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.