What Would Love Do?
How to Find Family Consensus on Behalf of an Aging Loved One
By Rev. John McFadden, Valley VNA Chaplain
During a continuing education event for primary care physicians, those attending were asked to identify the single greatest challenge they faced in providing care for their patients living with dementia. The response was nearly unanimous: “Families that are not all on the same page.”
Families in Disagreement
Families in disagreement can be an issue in many situations related to health care, but this is particularly true when some form of dementia is a part of the aging journey. The sister who lives with or near mom is exhausted by the ongoing challenges of caregiving, but when her out-of-state siblings come to visit, mom summons the inner resources to put her best face forward, and they wonder what their sister finds so upsetting and demanding. Sometimes the opposite is true. The son who interacts with dad on a regular basis fails to note the small changes taking place over time, but when his sister comes for her first visit in six months, she is shocked and dismayed by the changes she sees in her father. “How could you not have noticed?”
Even when siblings live relatively near one another and are largely in agreement about matters of importance, making decisions about an aging parent’s care needs, possible transition to residential care, and end-of-life issues is far from easy. Some of the most common obstacles to making wise decisions include:
- “Mom made us promise we would never put her in a home.” This promise may have been exacted many years ago, when a fiercely independent woman saw older friends withering in a facility that offered little beyond essential medical care. Quite likely, she could picture herself becoming physically frail at a later point in her life, but her imagination did not extend to the possibility of cognitive frailty that made navigating everyday life—cooking, cleaning, personal hygiene—no longer possible. But still, “We promised her…” can have a powerful hold, feeding guilt and breeding dissension among siblings.
- “If it were me, I would not want to remain on a respirator, but dad never made his wishes clear.” Very specific advanced directives are one of the most wonderful gifts we can give to our family members. In their absence, many struggle with the sense that they are projecting their own values and desires onto a parent or grandparent nearing the end of life.
Get Help to Make Important Decisions
We may feel bound by our promises or paralyzed by the lack of clear directives, yet decisions need to be made. A family that is caught up in disagreement or conflict about a parent’s care decisions will often remain trapped in that state until they turn to someone who can help them navigate a path through it. When it is possible, turning to a moral and spiritual adviser—a priest, pastor, or rabbi—can be tremendously helpful. He or she will have waded in these waters before, and hopefully can bring both wisdom and compassion to the family by helping them to come to a consensus all know to be the right one. If there is a trusted family physician, he or she can also be an invaluable source of guidance, particular if that physician has provided care for the parent or grandparent over time.
If the older family member is living in a residential community, the commun ity itself will have helpful resources to offer: a chaplain, social worker, or care team. They will be persons who know and love your parent and wish for your parent to have the best possible quality of life, a life that includes meaning and joy even in the face of losses. As with a spiritual advisor, they will have walked this path with other families.
Ask Yourselves, “What Would Love Do?”
A wise geriatrician who has led many family conferences about care decision in the course of her career shared, “My goal, in the end, is to bring the family to the question that matters most: What would love do?” Promises made in very different circumstances, the absence of clear directives—all of these, in the end, must give way to the existential question of what our deep love for our parent or grandparent requires us to do.
We may never reach the point of 100 percent certainty, and nagging doubts may still nibble at us. But often the difficult decision made in love yields wonderful outcomes. The mother who never wanted to go into “a home” thrives in new ways as she experiences greater social engagement and stimulation, receiving care from staff who value her. The father who never made end-of-life choices clear is removed from the life support that had offered only discomfort, not quality of life, and we see his peace and comfort as he prepares to cross into the great mystery beyond this life. Love, in the end, should always have the final word.
To learn more about our chaplaincy at Valley VNA, or to inquire about in-home care or assisted living for people experiencing Alzheimer’s Disease or dementia, please call (920) 727-5555. We offer a wide range of services and support for both seniors in need of care and their caregivers.