Need long-term care? Buyer, beware

February 16, 2009

It can be tempting to trust in "experts," to believe they've got it all under control. But the consequences can be dire.

A case in point: After having surgery recently, my dad had been gaining strength and weight. He could walk across a room. But he took a turn for the worse after moving into a rehab center to recuperate. He lost his appetite and stopped attending therapy.

My sisters and I were visiting him almost daily and could see he was doing poorly, but we had no idea how poorly until I arrived one morning, 10 days into his stay, to take him to the doctor.

Seeing him outside his blankets for the first time, I was stunned by how thin he had become. At the doctor's office, he was so weak he could not sit up. He swayed and seemed ready to fall at any moment.

The nurse there immediately said he was dehydrated. Normally sharp mentally, he was groggy and couldn't respond to the doctor's questions. The doctor deemed his condition so serious that he ordered an immediate IV and admitted him to the hospital, where he stayed five days.

Afterward, I felt immensely grateful for the timing of the doctor visit. If not for that, it seems my dad might have died at the rehab center with no one's noticing.

It was a shock to realize he could deteriorate so rapidly while under 24-hour nursing care, and without anyone's alerting us. This was the hardest of the lessons learned from the time my parents and in-laws have spent in six local nursing homes and rehab centers in the past three years. Here are some others:

• Don't wait for a crisis. Nobody wants to think about having to move into a long-term-care facility. It's often a painful transition, but even more so when you have no time to prepare. If you think a family member is at risk, do some investigating now. It's hard to make a wise decision in the midst of an emergency.

• Choose carefully. Read ratings and reviews (www. medicare.gov/nursing/overview.asp is a good place to start), but with a grain of salt. My parents had vastly different experiences at two places with the same staffing rating. Visiting is a must (sometimes the smell tells you all you need to know) but even that may not paint an accurate picture.

• There's no substitute for firsthand knowledge. Seek input from friends, relatives and clergy members (who visit many such places). E-mail and online networking sites enable you to poll a lot of people quickly.

Don't underestimate the importance of proximity. The ability to visit frequently is key.

Hospitals they ain't. Be an advocate for your loved one, but be reasonable. My family's expectations were way too high at first. Wait times after pressing a call button may be long, nurse-patient ratios are lower than at a hospital, and staff may have less training. Nursing homes don't offer the level of care of a hospital, especially these days, and especially in Indiana. The Hoosier state ranks in the bottom 10 when it comes to nursing home staffing, according to a new study by the Centers for Medicare & Medicaid Services. Because of high turnover, every year Indiana nursing homes must replace almost all their nursing assistants, who provide much of the caregiving. Competent, compassionate professionals are out there, though, and they have a tough job. Say "thank you" often; a little gratitude goes a long way.

• To know you is to love you, or at least give you better care. Especially at first, spending a lot of time at the facility is the best way to make sure staff are aware of a family member's needs and preferences, and to monitor whether those needs are being met. Get to know nurses and aides by name. Put concerns and special requests in writing, perhaps even on a dry-erase board in your loved one's room. Attend the "care plan meetings" facilities hold for each resident.

• Listen to your gut. If care is lacking on a regular basis, request a meeting with the unit supervisor. Go up the chain of command, if necessary. In extreme cases, file a complaint with the state at www.in.gov/isdh/21533.htm. As a last resort, move your loved one somewhere else.

Trust the experts, but only to a point. A life could end up being yours to save.

Parent is associate editor of IBJ. To comment on this column, send e-mail to tparent@ibj.com.

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