She was a tough and fiesty Wyoming cow girl ~ 67 years old. And it just so happened, the nurse assigned to her when she was admitted to hospice was also tough and fiesty. Younger and certainly less of a cowgirl, but she was raised in Wyoming and missed her mom and dad who were still in Wyoming on the ranch.
The woman we admitted to hospice had been widowed for decades. She now lived in a basement apartment below her son's home on his horse ranch because she had become unable to safely care for herself alone. Her admitting diagnosis was a progressive and untreatable form of lung cancer. She lived life as independently as she could for as long as she could; dragging oxygen tubes and using a scooter when walking became difficult, she did whatever she had to do, never complaining about any of the things that came as a result of her declining health.
Her greatest joy was watching her family compete in rodeos. She loved horses, dogs and her grandchildren most in the world. Her hospice nurse was a consummate professional who always managed to provide loving, tender care to her patient’s without becoming emotionally embroiled in their lives.
Until she met Sue.
They developed an instant connection based on a deep appreciation and respect for one another. They became good friends over the course of the months Sue was on Hopsice care and reports during staff meetings on Sue's slowly declining condition began to be peppered with confessions from her nurse of how attached she knew she had become to this patient. In speaking with our nurse privately about her deep connection to this patient I understood that in her heart she was struggling not only with the loss of a patient she had become close to, she was also struggling with what it was bringing up for her around what it might feel like to lose her own mom, who was very close to Sue's age. This had never happened to her before.
She had never really thought about her parents dying but Sue reminded her of her mom and the emotional toll for this nurse, especially when Sue died, was something I wanted to be sure our whole staf was sensitive to.
In my own visits with this particular patient I came to see her as an inspiration. Her grandchildren were little and she wanted so much to believe that they would remember her. We talked about writing legacy letters or doing a life review that she could leave as a legacy to them. My sense was that she wanted to but didn’t want to at the same time. Almost as though she didn't believe her life was worthy of that, if that makes sense. That conversation was the one time she really shed tears, when we talked about how important it is to feel like our time here has made a difference in some one else’s life. Sue assured me she was not afraid of dying, she was, however, afraid of suffering. She was not a “religious” person by her own admission but also by her own admission she believed in God and she also believed in an afterlife.
As her cancer began to take a stronger hold on her day to day life, her suffering was sometimes almost impossible to manage. She had declined a hospital bed until the very end and when the very end looked imminent she relented when we helped her understand it would be easier for all of us to care for her if she were in a maneuverable bed. She was having a lot of trouble finding a position that was comfortable and the hospital bed gave her an easier way to reposition herself. Visits from her nurse became more frequent. At our final staff meeting before Christmas, her nurse was making daily visits out to the ranch where Sue lived.
On Sunday afternoon, the day after Christmas, I got a call from Sue's nurse. She was on her way to Sue's house because the family had called. She asked if I might be available to meet her there. And I said I would come.
A continuos drip morphine pump had been delivered and set up a few days earlier due to the aggressive pain from her cancer.
The family had called that morning and reported that at that moment they felt Sue was resting comfortably but they were all exhausted and felt the end might be near. They were asking for our support.
I arrived before her nurse. Sue's adult son, and only child, was cleaning tack and preparing saddles in the open barn just outside her living quarters. He said his wife had gone for a drive. Sue and her DIL were very close and much of Sue’s direct care had fallen to her. They were all exhausted and I had already decided that when I got there I would try to get them to do just that, go for a drive. I could see, that her son was doing exactly what he needed to be doing and hoped that her DIL would find a restful place to pull over and possibly shut her eyes for a bit.
I went in and sat by Sue’s bed. Her breathing was rapid and shallow. I touched her forehead and told her I was there. There was no response. Her nurse arrived shortly after I did and for the next two hours we adjusted pain meds, adjusted positions and adjusted our approach. We sat across from each other and held hands over her. We spoke to her, reassuringly that we were there trying to help her find comfort, that her family was supported, that she was not alone.
And in all of this she moaned and continued to breathe shallow rapid breaths with great difficulty. Her pump was discharging incredible amounts of morphine. Her nurse administered Ativan for agitation. And still Sue moaned. I could almost feel my co-worker suffering as much as our patient. Desperate to try to make it better, we talked about what it could be that was causing her so much distress, what had we missed in the 10 months that we had been caring for her, that might explain all this reluctance to go.
We talked about the difficulty in just being with someone in their difficulty and struggle around dying and how important it was for both of us to know in our hearts that we were making it better through our presence than it would be without us but that we could not do for her, the work she had to do, to die. And that at this point whatever demons she was struggling with were hers alone. We could only accompany her so far and at some point she would have to release this life and step into whatever was waiting.
And all of a sudden, as we were speaking of this, Sue seemed to relax. Her breathing began to slow and her oxygen sats were unreadable. I told the nurse I was going to go up and get the family and Sue'slittle dog, Savannha, who immediately curled up by Sue's side.
Her son stood at the foot of his mom’s bed, with his hand on her foot, tears running down his face, the nurse and I on either side of her bed. We watched her finally relinguish the fight and surrender a body that had long ago stopped serving her. In that moment, because of what we had been watching for the past hours, our own tears were as much ones of relief as of sorrow. Her labor had been long and difficult. It was not one of those beautiful, peaceful deaths. It was difficult and challenging and her nurse who was also her friend had done an amazing job being there through it all. She knew it was an honor. She knew it was the very least she could do for this patient who had become such a special friend and she would not have wanted to be anywhere else…and, she suffered in the experience of this death.
I bring this story to you today, I think, because it isn’t pretty. It’s important to know that the work of dying is not always pretty. And it’s important to remember that as much as those caring for them try to ready themselves for an inevitable death there are always going to be those patients that will touch hearts in unusually deep ways resulting in unavoidable pain when they die.
I had the privilege recently of observing an oncologist as she sat bedside with one of her patients to tell him the treatments were not working.
She did not tell him he was dying because we do not know when that will come but when she told him she could not continue to give him chemotherapy, she cried. And he cried. And his daughter cried. And I cried. No dry eyes and not one single apology for any of those tears. That was the best part. His physician did not say she was sorry for the tears. She said she was sorry for the failure of the chemo to buy him any more time. Then she leaned over and hugged him for a long time.
When we care for others, feeling our own pain in watching them suffer, is real. Allowing ourselves to express that pain, makes us real too.
I would always say to hospice volunteers and staff that it's so ok to cry with the families or patients that they care for, as long as we stop before they do. Otherwise, roles are reversed very quickly and we bcome the ones being cared for and that is not why we are there. And, it is the main reason, we need to have ways, places, people to listen and support for staff to process being the disenfrachised mourners when pateints die.
When someone is a patient, it means thay are being cared for by people who initally were strangers. Even doctors who care for folks become the disenfranchised mourners when one of their clients or patients die.
It's a strange and unsettling feeling. Usually, no one even acknowleges the heartbreak and sadness for those who have cared for someone. No one sends us cards. No one brings covered dishes to the door. Flowers are not delivered. It is isolating, confusing, sometimes enraging and definitely sad.
Sue'snurse experienced this in a big way when Sue died. The family was grateful in the moment. There were so many hugs and tears and words of thanks when she and I were preparing to leave once the funeral home had removed the body. But after that, nothing.
We learned in hospice to do it for one another. We lerarned that a moment of remembranbce, once a month, to light a candle and read the names of the patients who had died, gave the nurses and aids who had cared for them a chance to talk how it felt not to have them on their calendars any more.
This particular nurse learned a lot from her crusty old Wyoming cowgirl. She knew she had been put in Sue's life for a reason and she took time off after Sue's death. She went home to visit her parents. I want to believe that she will remember Sue for the gifts she left behind; that eventually she will forget the pain of losing her, the pain of watching her struggle so desperately to get out of here, and just feel thankful for the privilege of having known her.