Family Caregiving: A Personal Glimpse

The holiday season is a time for reflection. It can be a difficult season for those who have lost someone dear to them or know that this will be the last holiday with a seriously ill loved one. For this last “quick fact” of the year, I would like to reflect on the incredible work of families.

This past year I took off my nurse practitioner clinician hat and embraced the role of daughter helping to care for my father in the final stages of Lewy Body disease, a type of dementia. Palliative care has been the constant throughout his long illness. By stepping into a more personal experience of palliative care, my conviction was reinforced that palliative care meets an individual and family’s unique beliefs, values and needs.

My shift from professional to family caregiver this past year has provided great insight into the family experience. It hit home that families need information and caring guidance regardless of the disease type and regardless of what they already know.

Palliative care has no agenda. The heart of this type of care is a team of professionals who get to know the patients, their loved ones and caregivers. Understanding patients and families ensures that the treatments match their goals, not the goals of health team or health plan.

When my father was first diagnosed, the neurologist gave us a stern warning: This will either tear you apart or bring you closer together as a family. See if you can do the latter, but get help now.” We were lucky in a sense. My father, a retired surgeon and pioneer in medical ethics, spoke frequently about serious illness and “what ifs” when we were growing up. So when we were faced with the reality of his condition, these kinds of discussions were not new to us.

Initially, my father took the lead, talking about the likely course of the disease and his wishes for medical care. His highest priority was to maintain both mental and physical function as long as possible. He wanted to remain at home, if possible, and minimize hospitalizations, always keeping my mother’s comfort level in mind.

Dad has been unable to walk, move, feed or care for himself for nearly four years now.  We are grateful for his initial guidance and for the guidance of geriatric and palliative care specialists we sought early in his illness and along the way. They helped transition Dad to hospice care as the disease progressed, enabling him to stay at home. Amazingly, he has not been back to a hospital or had to get to a doctor’s office in over three years. They come to us. And he is comfortable. So is my 85-year-old mother who takes loving care of him. His 7 adult children, in-laws and grandchildren (and his beloved “grandpets”) have all been cared for along with him.

This Thanksgiving we could not get Dad out of bed to sit at the table. He’s just too weak. So we ate around his bed. We talked about Thanksgivings past, with memories of sitting around the fire with all the grandparents, long walks and family time. My brother, a Catholic Priest, said Mass at Dad’s bedside and read prayers; my father was quietly attentive. His faith is the most important thing in his life and gives him peace. Mom cooked her famous turnips and Dad enjoyed them. While his appetite is poor, even just a taste made him smile. He is still aware at times — and those times are precious.

Palliative care matches treatments to patient values, beliefs and life goals. Not only have I provided this type of care to others – now I’ve lived it. It can be done. Dad led us in this from the beginning and we have taken his lead and learned much along the way. As we continue to gather together this holiday season and anticipate his death, I can honestly say to him, to my mother, to my siblings, and yes, even to me – job well done. I am so thankful to the palliative care providers who have been with us since his diagnosis, and who continue to guide us still.

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