People who care for an adult child, partner or sibling have to face the reality that their loved may outlive them. Planning ahead is key but it's not easy.
People who care for an adult child, partner or sibling have to face the reality that their loved may outlive them. Planning ahead is key but it's not easy. Noreen Vance 's beloved sister Angela has severe Down syndrome and needs help with daily life.
Their mother cared for her for decades but refused to confront the possibility that she might die before her daughter. Vance tried to talk about the future, but her mom just shut the conversation down. So there was no plan in place when their mother had a major stroke. Because of the brain injury, she couldn't understand how impaired she was, and didn't want to let go of caregiving even though she couldn't manage it anymore.The number one thing that worries family caregivers for adults with an intellectual or developmental disability isn't money or safety. It's the future. In a recent study, 72% of caregivers for people with Down syndrome said they worried about the long-term, and 68% were worried about what would happen after their own death.It's an especially acute concern for the families of people with Down syndrome, because people with the genetic condition are living far longer than they once did. But many other people care for someone who could possibly outlive them — an adult child, a sibling or a spouse. Research from AARP shows that almost 16 million Americans are in this situation. From right: Noreen Vance and her sister Angela with Noreen's son and daughter who help take care of their aunt.Contingency planning is key but that doesn't mean it's easy, says Vance:"These are hard, awkward conversations." Facing the future may mean confronting difficult questions and frightening scenarios. "We've seen as we've worked with families, is this fear of even talking about it," says Katy Schmid, senior executive officer of The Arc, a national nonprofit supporting people with disabilities and their families."Nobody wants to talk about death, and they're overwhelmed with the questions they may not have answers to."Vance, who eventually took over her sister's care, is now a strong advocate of formal planning."It gets easier the more you do it," she says. Experts concur that making 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:. Vance and her son now care for her sister, along with help from others. To avoid the scenario with her mom, who couldn't recognize that she was no longer capable of taking care of Angela, wrote her future self a letter. In this handwritten pledge, she told herself that if two trusted friends agreed that she wasn't up to it anymore, she would hand over her car keys, and let others make financial and health decisions."That's a great starting point," agrees Schmid.. Besides you and the person in question who needs support, who else will be involved in their future? That might not necessarily be the closest family—sometimes aunts, nephews or even friends are more willing to step up. Who does your family member trust the most, and who should be on call to help make decisions during a crisis? In Vance's case, she also brought in her sister's social worker, who has known her a long time.Think about the concrete basics that your person will need if you are gone, such as government benefits, medical support, and housing. List which are already in place, and which you need to set up for the future. Planning ahead means that you have time to think it through and research options.along with the person you care for that describes 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: Talk to other people who have been through the process, suggests Packard. That might be through a support group for families, or online. For instance, Vance got her letter-writing idea from another family in a similar situation.As life changes, so should the plan. Establish a time to revisit the plan once a year, like taxtime or the person's birthday.It's common for family members to disagree. Ultimately, though, the needs and wishes of the person who needs the care take priority—and that's where a detailed written plan provides a reference point or ultimate authority."This plan should be something that empowers the individual," says Schmid.: The Arc, a grassroots organization for people with disabilities and their families, has a template to walk you through the steps of creating a written plan together with an adult child with a disability. The questions are designed to help everyone figure out the details of ensuring that the person lives the way they want to, even if a main caregiver dies. There's also aalso covers aging and future planning, with a form to help you create a letter of intent and record of daily routines.
United States Latest News, United States Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
New Mock Draft Has Buccaneers Making Interesting Decision at Pick 15The Tampa Bay Buccaneers would be remiss to make this choice once they get on the clock for the 2026 NFL Draft.
Read more »
LA Rams receiver Puka Nacua sued for allegedly making antisemitic remark, biting womanStar Los Angeles Rams receiver Puka Nacua has been sued for assault and battery by a woman who says he made an antisemitic statement and bit her on the shoulder on New Year's Eve.
Read more »
Rams receiver Puka Nacua sued for allegedly making antisemitic remark, biting womanA woman has filed a lawsuit accusing Rams receiver Puka Nacua of assault and battery, alleging he bit her during a New Year's Eve outing. Beyond denying the accusations, Nacua's attorney characterized the lawsuit as blackmail.
Read more »
Rams receiver Puka Nacua sued for allegedly making antisemitic remark, biting womanA woman has filed a lawsuit accusing Rams receiver Puka Nacua of assault and battery, alleging he bit her during a New Year's Eve outing. Beyond denying the accusations, Nacua's attorney characterized the lawsuit as blackmail.
Read more »
First woman leads Texas' oldest prison, making history at Huntsville UnitFor 175 years, the oldest prison in Texas was led by men. Now, for the first time, a woman is in charge.
Read more »
Cree Thomas making plays in secondary during first spring with BuffaloesThroughout spring practices, Colorado quarterbacks haven’t been trying to throw the ball to Cree Thomas. In fact, they’d like to avoid it.
Read more »