In hospice, we don’t just witness families lose loved ones to cancer, pulmonary disease, renal failure, or other terminal illnesses - we often see the heartbreak of families losing their loved ones twice, once cognitively, then physically. Such is the case currently being discussed openly through the life of Rebecca in This Is Us.
With most terminal or end-stage disease processes, the agonizing decision often has to be made in determining the quality of life vs. the number of days. Sometimes the patient has their mind made up more firmly than a concrete retaining wall. Still, other times the family asks to meet with medical teams, spiritual advisors, etc. Occasionally, there are offers to “try one more” treatment or medication. The difficulty lies in determining if having mother here two more months while experiencing intractable nausea & vomiting from treatment outweighs opting for only possibly having her with us two more weeks. Still, knowing that in those two weeks, she will be pain-free, and her nausea and vomiting will be managed.
In This Is Us, Rebecca’s son, Randall, notices that she is becoming more forgetful than usual and encourages her to seek medical attention.
Rebecca is diagnosed with Mild Cognitive Impairment (MCI), a neurocognitive disorder that involves cognitive impairments beyond those expected based on an individual's age and education but which are not significant enough to interfere with instrumental activities of daily living.[1] MCI may occur as a transitional stage between normal aging and dementia, especially Alzheimer's disease.[2] It includes both memory and non-memory impairments.[3] The cause of the disorder remains unclear and its prevention and treatment.
Rebecca has the opportunity to participate in a medical trial, and although she would like to enjoy quality versus quantity of days, Randall’s opinion of her care differs.
As happens in many instances when family members feel responsible for all aspects of their loved ones' care, these family members often neglect their health, mental and physical. Miguel gave his life caring for Rebecca in the May 3rd episode of This Is Us. Although indirect, it is often the result of caregiving responsibilities.
Many family members and caregivers may not realize hospice is for people with a life expectancy of 6 months or less. Medicare provides this benefit and the hospice team is more than just doctors. At Hospice Brazos Valley, we also provide social workers, hospice aides, and volunteers to help families navigate the end-of-life journey.
In the May 17th episode, Rebecca reached the final leg of her journey, and we walked through this with her. What we witnessed in this episode is exactly what we often describe to surviving family members when we feel the patient may be “seeing” others who have passed before them. The imagery of the train was brilliant because it signified the movement of different parts of her life in review. She was not ready to move to the final car, the caboose until she sensed that Kate was there with her.
In hospice, we have observed that hearing is sometimes intensified as one is passing, and goodbyes are always a good idea because patients are often waiting to hear these beautiful and comforting goodbyes.
As a hospice certified nurse, Jenny Schoen, LVN, says that she often is present when goodbyes are said, “Sometimes when I see the family members say their goodbyes, it is not out of the ordinary that the patient will pass within minutes or hours. Oftentimes, the patient’s facial expressions will change and tension will ease when this kind of closure occurs. When I am in the room it is hard to hold back tears but saying goodbye is one of the most selfless things a loved one can do. It gives the family member peace and comfort knowing they provided that closure to their dying loved one.”
Once Rebecca went through the caboose doors and resigned herself to laying down on the bed, she saw Jack. This is what Schoen often imagines when she sees patients pass with a smile on their faces.
Much like the train in This Is Us, hospice services allow family members to be involved in the journey to transition from each stage of the end of life with compassion and comfort. Our clinical professionals at Hospice Brazos Valley provide guidance and support to make this difficult time more bearable.
William encompassed “the end” so amazingly well when he said, “The way I see it, if something makes you sad when it ends, it must have been pretty wonderful when it was happening.”