New York Times article: “For Some Caregivers, the Trauma Lingers”

To read the article click on the link.

This is a great article written by Judith Graham about the stress of care-giving. Graham describes Dr. Stone’s fight to honor her mother’s preferences that “doctors were to pursue every intervention needed to keep her alive.” It reveals the health care mistakes that were made as well as the pain and guilt that Dr. Stone still feels even after her mother has died. This highlights the constant vigilance needed to honor end of life wishes and living wills.

My comment on the article is below.

My family is on the other side of this equation and many have clearly stated that they don’t want to live if they can’t feed themselves. With the threat of autosomal dominant Alzheimer’s disease, ADAD, also know as early-onset familial Alzheimer’s disease, EOFAD, we have seen our family members linger in bodies while their brains atrophy.

My mom was 48 years old when her symptoms began. Implementing her seemingly simple request, to not be be feed or have medical intervention, was agony. A care facility that agreed to honor Mom’s living will when she was admitted, reversed their stance when she neared the end, forcing us to find another home. Mom’s end of life wishes required constant vigilance to ensure nothing extra was administered. This included antibiotics to heal an infection rather than simply provide palliative care.

The stress of making caregiver decisions, watching family members die, and the added layer of genetic disease throws a wallop that comes out in my dreams. I know other loved ones and possibly myself will succumb to this same fate. After Mom died, I had dreams about losing her in a snow storm or in a flood. I was always searching to find her, take her hand, and lead her to safety. Now, my nightmares have changed to autopsies and life decisions. I often wake with my hands clenched, trying to grasp the elusive cure for Alzheimer’s in an attempt to save my family.