Editor’s Note: This is part three of a series on options for caregivers in the face of what the system cannot provide.
The most important conversations about aging often begin with words families avoid: What matters most to you? Who should speak for you if you cannot? What medical treatment would you want — or not want?
Joy Harter, a Bloomington-based mental health counselor and death doula who works with aging people and their families, [SG3] encourages people to have those conversations early. They do not need to be perfect. Families can “fumble,” she says, as long as they begin honestly and keep the focus on the person’s values, priorities and story.
That approach can prevent relatives from having to guess in a hospital room, during a sudden decline or after dementia has made decisions more complicated.
Start with values, not forms
A health-care document matters. But Harter’s approach begins with reflection.
What makes life meaningful? What are a person’s greatest fears about illness or dependency? What trade-offs feel acceptable? Is being at home important? Is comfort the priority? What does dignity look like to that person — not to a spouse, adult child, clinician or facility?
Gunther’s parents had discussed advance directives before their health crisis. Her mother had indicated that she did not want extensive interventions if her quality of life was poor. Yet applying that principle became complicated as Alzheimer’s advanced. A medication may prevent a stroke, for example, but stopping it might not cause death and could lead to more disability. The family still had to interpret her wishes in real time.
That is why a conversation cannot end after a form is signed. The people most likely to be called upon must understand the values behind the choices.
A practical starting point
Harter recommends resources such as Five Wishes, an advance-care-planning document designed to guide personal, medical and comfort-related decisions.
Its first two wishes address the foundation of decision-making:
The person I want to make care decisions for me when I cannot.
The kind of medical treatment I want or do not want, and when.
Five Wishes also addresses comfort, how a person wants to be treated, and what they want loved ones to know. The organization advises people to discuss the completed document with their chosen health-care agent, physician and family, and to ensure that copies are available in the medical record and to those who may be involved in care.
The choice of a decision-maker deserves particular care. It may be a spouse, adult child, sibling, friend or another trusted person. The best choice is not necessarily the closest relative; it is someone who can listen, ask questions, understand the person’s values and act under pressure.
Build a team before it is needed
Families should not wait for a hospitalization to identify professional support.
A financial adviser can help forecast long-term-care expenses, consider insurance and benefits, and prepare for the possibility that one spouse will need expensive care while the other continues living independently. Bennett credits a financial adviser with helping her understand what her household could afford, though the uncertainty remains difficult.
Hospice can also be misunderstood. Bennett initially was unclear about what hospice would mean for Larry. Once he enrolled, she found that it added care and support, including frequent help with personal needs and regular clinical attention. Hospice is not “giving up”; it prioritizes comfort, symptom management and support for both the patient and family.
Death doulas and end-of-life advisers can serve as nonclinical guides: helping families talk through priorities, prepare questions for professionals, make room for grief and recognize that a caregiver’s identity may shift. Harter encourages families to stay present rather than arriving with a fixed agenda or the need to fix what cannot be fixed.
Keep revisiting the plan
The conversation should evolve as health changes. Review documents after a diagnosis, a hospitalization, a move, a major loss or any change in the person chosen to make decisions.
Gunther keeps copies of her parents’ directives and key incapacity documentation in multiple places because families cannot assume that hospitals, facilities, physicians and banks are communicating with one another.
While these won’t eliminate grief or uncertainty, they do give the people a clearer path through both. When a crisis arrives, a family may still have hard choices. But they will know whose voice they are trying to honor.
The League of Women Voters, a non-partisan, multi-issue organization encourages informed and active participation in government, works to increase public understanding of major policy issues and influences public policy through education and advocacy. For information, visit the website www.lwvmontcoin.org or the League of Women Voters of Montgomery County, IN Facebook page.
