‘What if I die first?’ Making a plan is key for family caregivers. Here’s how : NPR

Noreen Vance’s beloved sister Angela has Down syndrome and needs help with daily living. Their mother cared for her for decades but refused to face the possibility that she would die before her daughter. Vance tried to talk about the future, but his mother simply ended the conversation.

So there was no plan in place when their mother had a serious stroke. Due to the brain injury, she did not understand how weakened she was and did not want to give up her care, even though she could no longer manage it.

Family chaos ensues. And Angela’s care took years to resolve.

The number one thing that worries family caregivers of adults with intellectual or developmental disabilities isn’t money or safety. It’s the future. In a recent study, 72% of caregivers of people with Down syndrome reported worrying about the long term, and 68% worried about what would happen after their own death.

This is of particular concern for families of people with Down syndrome because people with this genetic disorder are living much longer than before. But many other people care for someone who might survive them – an adult child, a sibling, or a spouse. AARP research shows that nearly 16 million Americans are in this situation.

From right: Noreen Vance and her sister Angela with Noreen’s son and daughter who help care for their aunt.

Noreen Vance

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Noreen Vance

Contingency planning is essential, but that doesn’t mean it’s easy, Vance says: “These are difficult and delicate conversations. » Facing the future can mean confronting difficult questions and scary scenarios.

“We’ve seen, in working with families, this fear of even talking about it,” says Katy Schmid, executive director of The Arc, a national nonprofit that supports people with disabilities and their families. “No one wants to talk about death and they are overwhelmed with questions that they may not have the answers to.”

Vance, who eventually took over custody of his sister, is now a strong advocate of formal planning. “The more you do it, the easier it becomes,” she says. Experts agree that developing a plan and reviewing it regularly is the best way to ensure stability when situations inevitably change. And many organizations provide resources to guide families through the steps. Some suggestions:

Write yourself a note. Vance and his son now take care of his sister, with help from others. To avoid the scenario with her mother, who could not recognize that she was no longer capable of caring for Angela, she wrote a letter to her future self. In this handwritten commitment, she told herself that if two trusted friends agreed that she was no longer good enough, she would hand over her car keys and let others make financial and health decisions. “It’s a great starting point,” admits Schmid.

Decide who will be involved. Besides you and the person in question who needs support, who else will be involved in their future? This doesn’t necessarily have to be the closest family: sometimes aunts, nephews or even friends are more willing to take over. Who does your family member trust most and who should be available to help make decisions in a crisis? In Vance’s case, she also enlisted the help of her sister’s social worker, who has known her for a long time.

Make a list of the haves and have-nots. Think about the concrete basics your person will need if you leave, such as government benefits, medical support, and housing. List those that are already in place and those that you need to put in place for the future. Planning ahead means you have time to think about it and research options.

Write a letter of intent as well as the person you are caring for, describing how they live today (habits, hobbies, daily routine, preferences) and something about their history, to help minimize disruption during a transition. The Down Syndrome Society has advice on what this letter might include. My Health Passport can also be useful in helping anyone with a disability communicate better with doctors and other professionals.

Reach out: Talk to others who have been through the process, suggests Packard. This can be done through a family support group or online. For example, Vance had the idea to write a letter to another family in a similar situation.

Keep it fresh: As life changes, so should the plan. Set a time to review the plan once a year, such as tax time or the person’s birthday.

Dealing with drama. It is common for family members to disagree. Ultimately, however, the needs and wishes of the person needing care take priority – and this is where a detailed written plan provides an ultimate reference point or authority. “This plan should empower the individual,” says Schmid.

Explore more resources: The Center for Future Planning: The Arc, a grassroots organization for people with disabilities and their families, offers a template to guide you through the steps of creating a written plan with an adult child with a disability. The questions are designed to help everyone understand the details of ensuring the person lives the way they want, even if one of their primary caregivers dies. There’s also a collection of videos of people talking about how they did it, as well as a library of webinars focused on aspects of life like employment, housing, and financial planning.

The National Down Syndrome Society’s Care Guide also covers aging and future planning, with a form to help you create a letter of intent and a record of daily routines.