“And at the end of the day.. just give them my cell phone number. Please. It is my personal cell phone number, but I understand that a call for hospice information is a call from someone in crisis. I am happy to take that call.”
I do a lot of inservices with case managers, discharge planners, social workers and I end most presentations about hospice information with this statement. I double down on the statement by distributing my business card - with my cell phone number- to attendees.
And honestly, most days, even weekends or days when I am out of town, I take calls from unidentified numbers and talk to family members inquiring about hospice care. It is not the most boundaries thing that I do, and it probably serves some codependent need in me, but I think that I can help.
Wednesday this week, I was not officially working. I had fielded several phone calls, however, through the course of the day, while trying to juggle some personal errands. This is where the blurred boundaries get tricky. So at 4:00, when I was in the dentist’s chair, getting my teeth cleaned, I had NO patience for my phone ringing.
“Ignore it,” I said, with suction in my mouth.
But it rang again. And again. And. AGAIN. No message left in between - just perpetual redialing. My children were not in my presence so I worried someone was in crisis. I couldn’t ignore it, so I jumped out of the chair - paper bib around my neck- and answered.
“This. Is. Jenny!” I said, through clenched teeth, in an unfriendly tone.
“Hello. My name is John Doe and my wife has Alzheimer’s. I have been caring for her by myself for five years but she is ...is…. is… not good… Susie Jones in my support group suggested I call you..”
I am not proud of my response - that was driven by lack of boundaries I had allowed.
“Uh, yeah, HI, John Doe. I am not available to talk right now. I am in an APPOINTMENT. IF you listened to my voicemail, you would have heard the number of our intake desk. I suggest you call them and they can help you.”
“Oh….. um, ok. It is just that Susie Jones suggested your name and…”
“Great. So you’ll call intake and they will take care of you. Goodbye.”
And back in the dentist’s chair I hopped, indignant from the interruption. Checking the status of one’s teeth is really an insight into one’s health, is it not?
Just about 48 hours after that phone call, I was ringing John Doe’s doorbell. He had, in fact, gone ahead and called intake. He was seriously considering hospice for his wife and an evaluation was deemed appropriate. I am the evaluation nurse, so it was on me to show up at his house at the agreed upon time. As luck would have it, traffic was bad, so I was running late. I called to inform John Doe and he was clearly irritated. I was irritated with this visit.
When John Doe opened the door, I addressed him properly as Dr. Doe. He asked that I call him John. I apologized for being late. He told me my outfit was “very fashionable”. I softened.
John led me to the living room and I was struck. The carpet showed the clear marks of a removed coffee table. One MILLION times I have bemoaned the ever present glass coffee table in confused patient homes, worried about its potential as a cause of death secondary to a fall. The vacancy of the coffee table in this living room was so striking, I felt a little badly about my previous arrogance and preaching to families that it “has to go!” It leaves a void. An undeniable metaphorical void.
Dr. Doe, or better known as my new friend, John, treated me with heartbreaking chivalry. I noticed his shirt and slacks were clean and well pressed and I thought about the effort that must go into presenting that way. An 81 year old man who had either had to learn the business end of an iron OR find a way to get to and from a dry cleaner. When he sat on the couch opposite me, he had already laid out beside him a legal pad, a pen, a picture of his spouse from a healthier time, her driver’s license and Medicare card and a brochure about hospice and dementia.
It was more heartbreaking than flowers and well wishes placed at the site of a recent trauma. There was an obvious trauma here in this house. Things had been rearranged because circumstances had been rearranged.
John proceeded to conduct the interview with formality and I believe he was initially surprised that I had more questions for him than he had for me. As he told me about his wife’s condition, I gathered that she was likely a FAST 6 (incontinent, requiring assistance for all ADLs, barely ambulatory, barely verbal). I also learned that John was doing her care- beautifully, I might add- all by himself, every day, for the last 5 years. I explained hospice, Medicare criteria, private duty care, and services available to John and he took copious notes. I also learned that John’s beloved had been a critical part of developing one of Atlanta’s most beloved landmarks, was a well known horticulturalist, and spoke fluent French. John proudly shared her picture from “before”.
It was then time to see John’s wife who was safely in bed, in a room barren of potential safety risks. I believe I was right about her FAST level. She held my hand and told me she was, “happy” and grabbed my hair to say, “pretty”. I loved her. She was peaceful and kind. She also had no idea who John was, where she was, or that she was soaked with urine. I’m certain that happened while John and I were speaking because all other indicators showed meticulous care.
This whole thing- story and details- is about what happened when John and I went back upstairs. I was ready to conclude the visit and inform John that I would request records and an order from the doctor and see what we could do to help. I was nonspecific because she seemed borderline. But as I tried to inform John about the next steps and compliment him about the care he provides, he said this:
“It would be nice if you could send some help. Sometimes I speak to her with clenched teeth. I don’t like when I do that. It is hard to be patient because everything she does takes so long. And I don’t know her anymore. But I get frustrated, and I shouldn’t talk to her that way.”
Tears welled in his eyes and dripped on his starched shirt.
“Well. So. You will be in touch Monday, yes?”
And I assured him I would. I complimented him again for his good care. I reminded him he was human.
He crafted for me the best way to get out of his driveway. And then said thank you.
It took me about 7 K turns to get out of the driveway but I was already in tears on the 4th one. Dear God. Caring for a demented loved one is SO. INCREDIBLY. HARD. Thankless. Merciless. Hard.
But I wasn’t teared up about that because unfortunately, I see that a lot. I was teared up about John’s shame from speaking through clenched teeth. I was teared up about my own shame from speaking to John through clenched teeth. Patience is a precious commodity, it seems.
The moral of this story is likely obvious, but I think no less worthy of stating. IF you find yourself speaking through “clenched teeth”- as nurse, as caregiver, as parent, as teacher, as HUMAN- ask for help. Frustration is an authentic response and not one to be shamed. And remember what Mr. Rogers said, “look for the helpers. Always look for the helpers.”
John. I am sorry. Help is on the way.