Adult children and their parents end of life journey

 My Niece, who was in her early 50’s died almost two years ago, but the pain of her passing is still hard for the family. We were out to dinner with her Mom and Dad and their partners the other day. Because of COVID the Celebration of Life had been postponed and was held about two weeks ago.

The discussion about her end-of-life journey was uplifting and sad and was needed to help move forward. For an adult to lose a child is one of the worst things that could happen and the grieving stays with us until we pass.

What we know is that when we are ready to go, we hope that we will not be a burden on our adult children so they will not have to be there to manage our end of life, physical decline or cognitive decline but hopefully not both:

There is a study done by the Life Actuary Society on how adult children coped with their parent's end-of-life issues. They found that parents experiencing cognitive decline usually required a longer period of care, were more dependent and had less say in decisions. Cognitive decline often happened gradually, and aging parents often hid signs of impairment initially. Children did not always recognize the severity of the decline, and by the time it was dealt with, it was often quite significant.

Parents often had a triggering event that led to sudden physical declines such as a fall, a stroke or heart attack, but sometimes the decline was gradual, caused by factors such as arthritis or macular degeneration. Sometimes there were a series of incidents where parents might decline and then get better for a while. In some cases, children absorbed the need for more help and in other cases, the parent needed to move to a new type of support arrangement.

Health changes happened suddenly and some gradually. Generally, the adult children tended to react to their parents’ changing needs rather than plan for them. This tendency surfaced in some interviews among siblings who did not have strong relationships with each other; this may have exacerbated a lack of planning.

The study found that a variety of events or functional decline led adult children to increasingly take responsibility for their parents’ care including widowhood (especially when the deceased parent managed the finances); loss of the ability to drive or get around on public transportation; loss of the ability to physically maintain a residence, cook or clean; and mobility issues or other issues that required long-term care. One specific triggering event was the inability of the parent to remember to take medications. Irrespective of family dynamics, one of the factors that precluded planning was that, until they experienced it, adult children often didn’t understand the toll caring for a parent would take on them.

Adult children often helped take their parents to doctor’s appointments and consult with the doctor. In this research, it was most common for the adult children to follow the doctor’s advice without question and play an active role in making sure it was followed. However, several did get second opinions or seek geriatricians, and a few questioned the doctor’s decision later.