My uncle, we’ll call him John, was the high-functioning co-owner of a large company which he and his partner had built from the ground up. He remained very hands-on. Fair, generous and well-liked, John was the type of boss who would not ask employees to do anything he wasn’t willing to do. When he began to have memory issues, John’s partner accommodated him by overseeing his work in order for him to remain active in the business for as long as possible.
Ultimately, John took up residence in an assisted living facility where he lived for three years. When he was no longer able to meet the requirements for that facility, he moved to a memory care unit in another location.
Since John’s son was a young father with many responsibilities at home, we cousins took turns visiting John at different times each week in order to cover as many days and times as possible.
One day while I was visiting, I learned that John’s son had been advised that his father needed to be in hospice. I questioned the nurse regarding the need for hospice since John was already in a memory unit. The nurse eventually turned his back on me and walked away. John’s son obviously didn’t know the questions to ask when hospice was suggested and I had no authority to intervene. Nevertheless, I made it a point to visit at an unexpected time and encountered the hospice nurse. Upon questioning her regarding their services, I concluded that, other than a harp player, no services would be provided by the hospice that were not already being provided by the memory care unit’s staff.
As my uncle’s condition continued to decline, another cousin and I kept vigil the best we could and were the people most present, given my young cousin’s responsibilities at home. I witnessed the confusion of two CNAs over medication they were supposed to administer. These CNAs were members of the memory care unit’s staff. Hospice staff members were not there to administer medications, check on his positioning hourly as they said they would do, or visit him. John was prescribed Haldol, which was contraindicated due to his age and dementia.* I observed that this drug caused him to hallucinate — not a pleasant way for one’s life to end. Although the hospice charged for services, they did not deliver.
The point I want to make is the importance of choosing the right health care agent. It isn’t enough to choose someone who loves and cares about you. It must be someone who is knowledgeable, will ask appropriate questions, and is firm enough to stand up for your rights and protect your wellbeing. Although I fit both categories, I was not named as John’s agent and had no legal authority to intervene.
Do not let what happened to John happen to you or your loved ones. Choose health care agents carefully.