Karen* from New Jersey

For her father-in-law with dementia plus other illnesses, "it’s back and forth, all these doctors... a nightmare"

*Names have been changed at the family’s request

Ted* and Ellen*, a central New Jersey couple married for 56 years, are both in their mid-80s. Though Ellen had a stroke years ago, she had been well enough to manage Ted’s medical care when his health issues were minor and his Alzheimer’s disease relatively mild. But as Ted’s dementia worsened and Ellen faced illnesses of her own, she has leaned more on Mark* and Karen*, Ted’s son and daughter-in-law. Professionals in their mid-50s, busy with two careers and two children, Mark and Karen help as much as they can. But the last year, Karen says, has been an exhausting roller-coaster ride through different care settings and courses of treatment.

"His Alzheimer’s had been slowly progressing for about 10 years. In spring 2010, a bed opened in a Veteran’s Administration nursing home and he went in — but within weeks, they said he pushed one of the employees and once something like that happens, they send patients to the VA hospital to have medications adjusted to see if they can get them in a more manageable place. He was there for a couple of weeks on pretty strong medication. Ellen felt he was doing well; she said, 'I think he’s leveled out and I can take him home.' But what they didn’t tell her was that the medication they had him on could not be administered outside the hospital setting.

"He got home in summer 2010 and things began to deteriorate. He would wander away and she’d have to call the police to find him. She didn’t want him to go back to the VA nursing home, so she tried a care center near their home, but he didn’t need as much physical care as other patients so he’d be left unattended. She took him back home for a month, and then couldn’t find anything else; she’s desperate for help at this point, so he goes back to the previous facility.

"Then she finds a smaller, home-like facility she thinks will be better for him. When he moves in there on a Friday, he has a runny nose. On Sunday, she visits him and he’s curled up in a chair, shaking. That night he takes a fall, and they have to send him out for a CT scan. He can’t verbalize anything so she’s trying to be his advocate. It’s back and forth, all these doctors coming into play, you forget what came first anymore. The CT scan on his head came up negative, but he was found to have pneumonia, and blood in his urine.

"It was getting very complicated for Ellen to even keep track of all this; we were trying to remind her of things and help her make notes. And then during his hospital stay, she got sick and was diagnosed with pneumonia. So then I’m playing both sides, trying to go to the hospital to help with him, and dealing with doctors on her end who were not doing their job — and it was a nightmare. Mind you, she was coughing up blood, and they were saying 'We’ll get back to you by Friday on your approval from insurance.' I’m on the phone with the doctor’s office: 'Are you kidding me?!' He’s in the hospital, she’s down for two weeks with pneumonia... I was trying to hold down a job and care for my own family — and having to be very pushy about calling the nurses and doctors’ offices because if you’re not pushy, they’re so busy that you don’t get answers.

"In January 2011 Ted went back to the smaller care facility but the sickness really had set him way back. He was not able to walk or feed himself, he was totally out of it. He became dehydrated so he had to go back to the hospital — he’s maybe 30 pounds under the weight he should be, his bones are popping out of his back. They kept him in the hospital a while and checked everything all over again. The hospital social worker found a nursing home that seemed a more appropriate setting, and after a couple of weeks there, he was turning around, trying to do some walking and working with an occupational therapist to learn to feed himself again.

"This morning, Ellen got a call from a nursing home that is closer to us, where he’s been on a waiting list for more than a year. They told her there was a bed open but she would have to act by 2pm today, which would mean getting him out of the other care facility tomorrow. So that’s a half-dozen moves in and out of care settings in a year — and we’ll see what happens from here...”

Ellen later updated Ted’s story, and the news was not good. When she visited Ted in the new care facility, another resident’s son told Ellen he had seen staffers curse, push and even sit on Ted. "After talking first to the assistant nurse supervisor and then to relatives, friends, and officials, I'm still at a loss as to my next course of action," Ellen says. "Trying to get the care my husband deserves has become a full-time, frustrating job."