from Jody...
Mom enjoying family photos with niece Betsy.
Niece Gracie assuring us that the Howell sisters can deliver Mocha Almond ice cream.
After a day with Gracie and Betsy, Mom talks into the night with Classy, another visitor from North Carolina.
May 27, 1999
I write from New Haven, after having spent five full days in Gainesville with Mom, Dad, Blake, and Meredith, and just before leaving tomorrow for a 2 week jaunt out West for two weddings. Because I haven't yet seized the opportunity to write for the Website, I thought I would try a few quick paragraphs to fill you in on my role in some of this crazy journey.
As most of you know, I have just finished my second of three years in a nurse practitioner program at the Yale School of Nursing. The foundational R.N. training has prepared me well, as has the first year of the Master's portion, but nothing could prepare me for the nursing care we all have been practicing with Mom. Nursing is about caring for people in the midst of their illness, and helping them deal with their responses to illness. At this point in Mom's journey with the glioblastoma, nursing care needs to be at the center of her treatment rather than medical interventions that aim to cure. This kind of care includes getting her hot washcloths when she feels a headache breaking through her pain medication, cool washcloths when she feels nauseous, ice cream or an omlette or a banana when she feels hungry (usually for comfort foods - soft, sweet, and not too spicy), ginger ale when her mouth feels dry.
Though the physical aspects get primary attention, there are many other ways of being with Mom that feel therapeutic - probably as beneficial to her as they are for me. For example, playing piano so we can sing hymns on key together, giving her a hand massage, reading her mail aloud to her (reading has become difficult for Mom, especially when it requires deciphering handwriting), reading from a book (the latest was the Tibetan Book of Living and Dying, and sections of the Book of Job), bringing breakfast into her bedroom so we can chat while I nibble and she relaxes, and making time to reminisce, reflect, and wonder about things past, present, and future. We are all looking forward to having the new screened porch finished so that Mom can get some fresh air and be protected from critters and direct sunlight.
I am planning to spend all of July and part of August in Gainesville with the family and am looking forward to doing more of this informal nursing care with Mom. I hope to bring old photos and to catch up on photo albums with Mom's creative help. I hope to read aloud more of whatever Mom wants to hear, and give more massages, and sing more songs, and blend more smoothies, and enjoy each precious day as it presents itself to us. I feel incredibly lucky to have time off this summer to just BE with my family as we work together on embracing dying as a part of the process of living.
Thanks for your continued love and support during this time.
-- Jody