Last month I wrote about my mom dying. Mary Hughes (nurse leader extraordinaire) from PEI wrote to say that she wanted to hear my thoughts on being a daughter and a Hospice Palliative Care (HPC) nurse.. how was it easier? in what ways was it harder?
I have reflected on this over the past few months.. here are my thoughts of the moment. I am interested in hearing your thoughts, and insights. Please either respond to the blog or write me an email directly.
In what way was care easier because I was a HPC nurse and a daughter?
As a HPC nurse, I know that death happens. I am not surprised that someone can get sick, be diagnosed and die within a short period of time.
I know about symptom management and use of medication and other comfort measures. I know it is helpful to take medications to prevent pain rather than chase it when it has escalated. I know that breakthrough doses can be taken if the pain is not controlled, and that dosages can be increased to provide pain management.
I know about decreasing appetite, and I know that the dying do not die because they eat less, but that they eat less because they are dying.
In knowing these things, I provided care, I tried to anticipate changes, I requested medications, route changes, and equipment in advance.
“Knowing” the basics of hospice palliative care surely made the pathway familiar and made it easier to care.
As a nurse I knew that hospital beds could fit more than one person. On a few occasions, we climbed in and napped along side mom.
In what ways was caring for my mom more difficult because I was HPC nurse?
As a palliative response nurse, my work for more than a decade was in responding to people who were dying and who were in crisis of some kind, either symptom management, or psychosocial. Knowing that crisis can and do occur, I wanted to prevent even the possibility of discomfort. This was difficult when I wanted to balance her symptom management with the concern of siblings who might have been concerned that her decreased level of consciousness was related to medications. On the one hand I wanted her to be comfortable, and on the other hand I felt the incredible sorrow of realizing that she was no longer able to respond. I felt the tug between protecting her and the desire or hope that we could help her be as alert as possible.
Working with loved ones who had other ways of doing things was difficult at times. It was challenging. We had to be committed to the shared goal of pain management, and be flexible on the plan of care to achieve that goal.
A most difficult challenge for me was when my mom developed a few skin wounds. I felt I could have prevented this had I been more adamant about regular turns.
What was unique, but not positive or negative about being a HPC nurse and daughter?
Entering into the caregiving experience, I was aware of how difficult it is to “be family”, to sit and to wait with the dying. I came to understand this on an even deeper level.
I thought of the term “difficult family”. I did not want to “be difficult”. I did not want to experience contention, nor did I want to inflict contention on the health care team. I thought more than a few times of my prefered term “difficult situations” and just how very challenging family caregiving is.
As the HPC nurse/daughter, I wanted to respect the requests and suggestions of my siblings with regards to care for our mom. I wanted to respect the different styles of grieving and communicating. If they were clear about how they wanted something done, I wanted to try and be helpful. (And though I wanted to do this, I was not always successful!)
Mostly, I wanted to prevent my siblings from suffering. I hoped that I could provide care and act in a way that would make it easier for them. Again, I was successful in this, as it is painful to have a mom die.
The struggles to balance, juggle and respect the opinions and needs of family members was perhaps the most difficult. In retrospect, a few months later… I think that we worked pretty well as a team. As siblings we had gathered from around the world, with such different personalities and experiences. Throughout her last months we provided our mom with great support. She died pain-free (her first priority) at home, at the far end of a rather isolated island,with all of us present.
Being a HPC nurse and a daughter, had its challenges I am sure, but overall, I would not have traded that expertise for anything!