SCOTT SIMON, HOST:
For caregivers of adults, siblings, spouses or grown children, constant worry surrounds the question of survivorship. What happens if they die before the person they care for? Almost 16 million Americans are in this situation. Reporter Kat McGowan brings us the story of a woman caring for her disabled sister. She's seen how hard things can be and how important it is to plan for the future.
KAT MCGOWAN: California social worker Noreen Vance (ph) has always cared for family in one way or another.
NOREEN VANCE: I don't remember a time when I wasn't responsible for other people. Oldest female in a typical Irish Catholic family, I was automatically responsible for my brothers and sisters.
MCGOWAN: That includes her younger sister, Angela (ph), who has severe down syndrome. Angela is nonverbal and needs help with basics like bathing and dressing. Their mom, a special education teacher, took on most of that responsibility. But as Angela grew into adulthood and then middle age, the big question kept coming up.
VANCE: And I would ask my mom, what do you think about, you know, down the road, should something happen to you? And my mother would shut that right down. I really wish they had made a plan for what did happen, which was that my mom had a massive stroke and was unable to care for Angela.
MCGOWAN: At first, the family pulled together, but soon there was conflict, bitter arguments, a restraining order, even a lawsuit.
VANCE: It was a mess. There was a big fight. I just said, well, let's all sit down as a group and talk about this. Let's do this calmly. That did not happen.
MCGOWAN: Her mother had additional strokes, and by 2019, could not manage Angela's care. As a social worker, Vance says she's seen this situation many times.
VANCE: Like my mom, they had great intentions of taking care of this person for the rest of that person's life, but then something happens to them. In my mom's case, she really didn't want anybody else taking care of Angela. That was her daughter. That was her responsibility.
MCGOWAN: Even as Vance's mother neared death, she refused to let go of her daughter.
VANCE: Her dying words to me were, bring Angela back.
MCGOWAN: After her mom's death, Angela did live in a nursing home for a while, but then the care there went downhill. One day in early 2024, Vance and her then 20-year-old son, Josaiah (ph), arrived to find Angela with a blank look on her face.
VANCE: So we were planning on just taking her out to lunch. But as soon as we got her in the car, we kind of looked at each other, my son and I, and just decided we can't leave her there.
MCGOWAN: Once again, they had to improvise. There was no plan for this.
VANCE: But I said, I can't do this and work full-time. And my son stepped up and said, I will take care of her till we get additional supports.
MCGOWAN: He is now his aunt's primary caregiver, a responsibility that has passed from mother to sister to nephew.
VANCE: He's been surprisingly really, really good at it. And she has responded really well.
MCGOWAN: Vance won't make the same mistake her parents did. She's made sure that Angela will be OK no matter what happens.
VANCE: She'll remain living in this home for the rest of her life, and we will have additional supports brought in, and it will be overseen by my son and daughter. And we revisit the plan. We'll talk about it at different times.
MCGOWAN: They've knit together a support system that includes a day program, state benefits, help from her daughter and from a neighbor, so they can actually relax and enjoy each other's company. Angela's bedtime ritual, for instance, is a two-person job, but it's everyone's favorite.
VANCE: She's giggling the whole time 'cause she knows what's coming, and my son will say, OK, we're going to pick you up. And then we do one, two, three, wee, and then she gets all tucked in, and then we sing a song, and then she gets a kiss on the forehead. That time of the evening is the best time of the day. It just makes all the hard work worthwhile. And my daughter, my son and I agree that the best sound in the universe is Angela laughing.
MCGOWAN: Unlike her mom, Vance expects things to change. She's considering a graduate degree, and her children may move away or start their own families with less time for Aunt Angela. But because of the plans they have in place, they can talk about that future. It's not such a scary thought.
For NPR News, I'm Kat McGowan.
SIMON: And for advice on making a caregiving plan and other resources, you can visit npr.org/caregiving.
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