“But, you are just going to give him to me? How am I going to take care of him at home? On my own?” The words never came out of my mouth, but the thoughts screamed loudly in my mind. I had given birth to a gorgeous baby boy and now, a few days later, a nurse was preparing me for discharge and I can honestly say, I was panicked. I think she sensed my nerves because she continued to reassure me, giving me the bit of insight and knowledge that I felt I lacked. This all felt new and foreign to me. But, 20 years later, I think about that nurse and how her calm reassurance got me through those difficult first weeks.
In so many ways, the journey of birth mirrors the journey of death. The unexpected moment of passing, the fear of the unknown and caregivers worries of how they will be able to care for the patient.
Just as those first days with a newborn can be challenging and feel like you are on the craziest emotional roller coaster, so too is the process of caring for a hospice patient. There are tears, there are laughs, there are fears, there are “oops” moments and finally, there are moments of deep satisfaction that the patients wishes are being honored.
When a terminal patient is returning home with hospice, many caregivers are often surprised to learn that there will be times, even days, where they might be alone with their loved one. Hospice caregivers are not very often present in person 24/7. Hospice isn’t ever considered to be a primary caregiver. What hospice does is educate and empower the family or primary caregiver to be able to provide care.
I have met with many families, who will often say “I don’t know how I am going to do this”. Each time, I have them take a deep breath – this is a step by step journey and not a sprint. Though listening to their fears and concerns, I am able to garner what their baseline of knowledge is. It is so profoundly important that we meet each person on their level. We aren’t here to impress anyone. Save the fancy terms for the hospital. Be open, be honest, be truthful and be kind.
Empowering the caregivers also means doing whatever is within our scope of practice to allow them to more easily and safely care for the patient. At end of life, I will often pre fill medication syringes of the prescribed dose of medication and leave log sheets with instructions. Many caregivers have built in fears regarding dying including things like the “death rattle” (phlegm caught above the throat that causes no discomfort to the patient, who is too weak to swallow it down) for which turning and repositioning, as well as oral care are the best solutions. There is also the very difficult subject of nutrition at end of life – the transitioning patient does not require food and nutrition like those that are not. No, you are not starving them. Often times, giving them something may lead to aspiration or can pool and result in swelling to the extremities. None of these subjects are easy to talk about. But, listen to their fears. Address their fears. Provide comfort, education and support.
Recently, had a caregiver that was almost terrified of caring for her transitioning loved one. The patient’s wish was to pass at home. She was granted that wish, but, her caregiver was overwhelmed with anxiety and fear about the whole process. That first visit took hours. Calm reassurance. Education that was simple and to the point. Reassurance over each visit. She would often end the visits by saying “I just hope you are physically here when she is dying and actually dies. I don’t know if I can do it alone.” Well, the patient did pass. The caregiver was alone. When I called to check in later in the day, as the patient passed overnight, her caregiver tearfully said “I was so scared of her dying. But, when it all actually happened, I didn’t feel scared. What you said was with me and we made her final wish come true. You were not here but I didn’t feel alone.”
That OB nurse so many years ago guided me through many sleepless nights with her words and wisdom.
Hospice nurses might not always be physically present, but, caregivers will never be alone.