On being a hospice caregiver…and a nurse
By Barbara Taylor, RN, CHPN
As a certified Hospice and Palliative Care Nurse, I was confident in my ability to provide compassionate, quality care to my patients and their caregivers. Not until I became a caregiver myself did I have a true appreciation of the burdens of that role.
My sister became a hospice patient at 42 years old, losing her battle against pancreatic and liver cancer. Though intellectually I knew what to expect as she approached her death and how to clinically manage the symptoms associated with the dying process, the physical, emotional and spiritual effects of caregiving were unexpected. I found myself “second guessing” myself, the care I was providing and the plan of care that was in place. Trying to comfort and explain the processes to her son and other family members were much more challenging than I would have expected.
Thankfully, my sister had a very peaceful, pain free passing. Though I miss her and wish she didn’t have to leave us so soon, I value the time I had with her and the honor that was bestowed upon me by being her primary caregiver.
My experience has given me a greater understanding of the trials and burdens of caregivers and a greatly renewed appreciation for the roles of the Chaplains, Social Workers, Home Health Aides and volunteers as the patients and families experience this most difficult time. These are the people who encouraged me to be the “sister” and not the “nurse” which made my final days with my sister so rewarding. They supported her son and mother in ways that I could not and for that I will be forever grateful.
I would offer these few suggestions to those of us who are both healthcare professionals and caregivers:
- Allow other family/friends the honor of participating in the patient’s care
- Allow yourself to ask for help
- Allow the patient to have the full support of all members of the hospice team
- Be the family/friend and accept that there are some things you just can’t “fix”
My practice has changed since that time, in that I truly encourage all my patients and families to accept the support of all the members of the Hospice Team, as they each bring to us a very unique perspective as we travel this road together.