The past 12 years that we had lived in marriage were the best years of my life. Every one that knew us, knew us as either Terry and Rob or Rob and Terry, we were synonymous one with the other. Many of you knew us in MD where we met, fell in love and got married. You all encouraged us to follow our dreams and our hearts, so we did.
In her last few days, Terry was tormented by “Sundowners Syndrome” or “Sundowning” which is normally associated with Alzheimer’s or dementia, but also presents itself in cancer and other terminal patients. As her caregivers, we were unaware of this syndrome – how it presents itself, how it affects the patient, and how to treat it. We thought it was something totally different, and we did almost everything wrong in the way that we responded.
Even as I called in to the help line multiple times at night, got a triage assistant and a callback from the Hospice staff, we basically all missed it. When I spoke to various nurses, counselors, and staff – we all missed it. We missed the symptoms, the behaviors, the opportunity that we could have done better for Terry.
Terry’s final wishes were this: She wanted no Obituary, No Visitation, No Church Service, No Burial, and No spending money on Flowers that will probably die and have to be thrown out. She wanted to be cremated, and eventually when I pass, we want our ashes to be spread together. Her children and I will quietly say what we feel in our hearts in private and together.
In the meantime, what I believe is the best tribute that we can pay to her is this:
I am setting up a memorial fund that will be given in her name to the Hospice with the request that this fund be designated to help both Hospice Workers and Caregivers in the identification and proper treatment techniques of “Sundowners Syndrome” in Hospice Patients.
Knowing Terry and her remarkable spirit, I think that this would honor her life in a way that would make her proud.
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