Noreen Vance’s beloved sister Angela has severe Down syndrome and needs help with daily living. Her mother cared for her for decades but refused to face the possibility that she might die before her daughter. Vance tried to talk about the future, but his mother shut down the conversation.
So when his mother suffered a major stroke there was no plan. Because of the brain injury, she was unable to understand how disabled she was, and did not want to give up caregiving, even though she could no longer manage it.
There was chaos in the family. And it took years to sort out Angela’s care.
The number one thing that family caregivers for adults with intellectual or developmental disabilities have to worry about is not money or safety. This is the future. In a recent study, 72% of caregivers of people with Down syndrome said they were worried about longevity, and 68% were worried about what would happen after they die.
This is a particularly serious concern for families of people with Down syndrome, as people with the genetic condition are living longer than ever before. But many others care for someone who could possibly outlive them – an adult child, sibling or spouse. Research from AARP shows that about 16 million Americans have this condition.
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
Making contingency plans is important, but that doesn’t mean it’s easy: “These are tough, awkward conversations,” Vance says. Facing the future may mean confronting difficult questions and frightening scenarios.
“What we’ve seen as we’ve worked with families is that people feel afraid to even talk about it,” says Katie Schmid, senior executive officer of The Arc, a national nonprofit that supports people with disabilities and their families. “Nobody wants to talk about death, and they’re overwhelmed with questions they probably don’t have answers to.”
Vance, who ultimately assumed responsibility for her sister’s care, is now a strong supporter of the formal plan. “The more you do it the easier it gets,” she says. Experts agree that creating a plan and revisiting it regularly is the best way to ensure stability when the situation inevitably changes. And many organizations provide resources to guide families through the steps. Some suggestions:
write a note to yourself. Vance and his son now take care of their sister while helping others. To avoid this situation with her mother, who could not understand that she was no longer able to take care of Angela, she wrote a letter to her future self. In this handwritten pledge, she told herself that if two trusted friends agreed that she could no longer do this, she would hand over the keys to her car, and let others make financial and health decisions. “It’s a great starting point,” agrees Schmid.
Decide who will attend. Besides you and the person in need of support, who else will be involved in their future? It doesn’t necessarily have to be immediate family – sometimes aunts, nephews or even friends are more willing to step forward. Who does your family member trust most, and who should be on call to help make decisions during a crisis? In Vance’s case, she also brought her sister’s social worker, who has known her for a long time.
Make a list of the rich and the poor. Think about the solid basics your person will need when you’re gone, like government benefits, medical aid, and housing. List which ones already exist and which you need to establish for the future. Planning ahead means you have time to think it over and research options.
write letter of intent Along with having the person you care for, describe how they live today – habits, hobbies, daily routine, preferences – and something about their history, to help minimize disruption during the transition. down syndrome society the advice is About what this letter may contain. my health passport It may also be useful for helping a person with a disability communicate better with doctors and other professionals.
access to: Packard suggests talking to other people who have gone through the process. This could be through a support group for families or online. For example, Vance got the idea of letter-writing from another family living in a similar situation.
Keep it fresh: As life changes, so should plans. Set a time to revisit 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 who needs care take priority – and this is where a detailed written plan provides a reference point or final authority. “The plan should be something that empowers the individual,” says Schmidt.
Find more resources: Center for Future Planning:The Arc, a grassroots organization for people with disabilities and their families, has a template to guide you through the steps of creating a written plan together with a disabled adult child. The questions are designed to help everyone ensure that the person lives the life they want, even after the main caregiver dies. there is also one Video A collection of people talking about how they did it, and a library webinar The focus was on parts of life such as employment, housing and financial planning.
National Down Syndrome Society caring guide It also covers aging and future planning, helping you create letters of intent and a record of daily routines.
