An interview with Nikki Graham, who brought 72-year-old Donald Rothstein into her family so he wouldn't have to live in an institution. (The photo shows them together.) From The Journal-Gazette in Fort Wayne, Ind.:Donald Rothstein greets a visitor with a courtly kiss on the hand and a happy “Hello, how are you ?”
Sitting in his favorite chair in the living room of a spacious ranch home facing a big-screen TV, he is living the life that he always wanted – as part of a family.
But it hasn’t come easy. Rothstein, who has Down syndrome, has beaten many odds.
For one thing, at 72, he has exceeded the current expected lifespan of people with his condition by more than two decades. For another, he is not living out his senior citizenship in a group home or institution.
Instead, Rothstein has become another son to Nikki Graham, 57, a former administrator at a social services agency that serves people with disabilities.
The mother of a grown son and daughter, Graham and her husband, Chuck, a dental technician, befriended Rothstein a dozen years ago when he was having trouble fitting in at the group home where he was living.
To give him something to look forward to, they started taking him to church and out to eat. After a while, she says, it became harder and harder to get Rothstein out of the car when it came time to go back to the home.
Then, she started getting calls from staff members saying he wouldn’t take his medicine. “Can you talk to him?” they’d ask.
“I’d say, Donald, if you don’t take your medicine, we won’t be able to come get you,” she recalls. “And he’d calm right down.”
Donald started spending holidays with the family – Thanksgiving, Easter, and finally, Christmas. Finally, Graham and his caseworker made a plan for him to stay with the Grahams for three months.
He’s now been with them for 10 years, through an arrangement Graham has worked out with Forte Residential Inc., of Syracuse, which provides family-centered care for adults with disabilities.
Sipping a vanilla Coke in his chair, Rothstein pipes up. “This is better for me,” he says, later adding his favorite phrase: “No worries. No worries.”
So you said Donald’s mother died in 1965. What happened to him then?
“We think his stepfather cared for him, but he, of course also was older and couldn’t keep doing it … He also had a sister, but his sister also has passed away. … When we met Donald, he was in a (group) home. Before that, he was in the State Developmental Center. He’d been in the (social services) system a long time. He was 61 then and he was very unhappy.”
Why was that?
“The other residents weren’t mobile, and he was the only one who was. But he couldn’t go anywhere or do anything because there wasn’t enough staff. … He was kind of going into a depression.”
So why did you decide to take him on?
“His caseworker was telling me, ‘We need to find a place for him,’ but wasn’t having any luck. We had plenty of room, but I didn’t know how much of a task it would be … But I thought, ‘It’s only for three months. … He really got attached to me and after three months, he didn’t want to go (back), and there wasn’t any guarantee it would be any better for him to go, so he just stayed.”I imagine that was quite an adjustment for you and him.
“We had to Donald-proof the house! He’d move things, like dish towels and silverware, from one drawer to another. … He didn’t like blinds, so he’d pull up the blinds and tie the cord into a million knots. So we’d compromise. … In the beginning, he’d hover over his food, because he was afraid from all those years in institutions that someone would take it from him. … And he wouldn’t wear clothes unless his name was put in them. They’re taught that unless your name is on it, it’s not theirs.”
Have those things gotten better?
“Yes, but he’s aged a lot in the last five years. He has dementia – people with Down syndrome are so susceptible to it – and the things that come with that. … He’s not continent any longer. … He forgets things. He has days when he forgets how to put his clothes on. … He gets his days and nights mixed up. Sometimes he’ll stay up all night.”
So he has his quirks?
“He has his quirks. (One of them is) he can outwait anybody. … One time we went out to eat, and he didn’t want to go home. … We tried talking to him, and bribing him, and finally we picked him up in his chair and took him to the van. And then it was, “I sorry, Mikki.” (“Mikki” is his pet name for Graham). And when we got home, he jumped out of the car, like nothing had even happened.”
I can tell you love him a lot.
“I have to say his own mother did a wonderful job with him. He was always very well mannered, very polite, always, ‘Thank you’ and ‘You’re welcome.’ … He has bad days and his grumpy days, and sometimes he doesn’t like to get up in the morning. And he doesn’t know the meaning of ‘hurry.’ … But he’s always very cordial and happy, the most gracious person.”
You know, this is really quite an extraordinary story.
“I don’t think we’re unusual at all. I think if the opportunity presented itself, there are lots of other people who would do this, especially when it’s better for the person – we’re not staff. We’re not professionals. We treat him like a son. We’ve been given a lot through him. We’ve learned patience, understanding, tolerance. … I think the 10 years he’s been with us, he’s had a happy life. Our biggest worry now is that’s he’s probably in better health than either one of us, and he’ll outlive us.”
