Ken Takeya is an experienced family caregiver, by anyone’s standards. He started taking care of his wife when she was diagnosed with Alzheimer’s disease 71⁄2 years ago. And even after that diagnosis was revised and surgery relieved some of her disability, the Kailua retiree is still hands-on for most of each week.

Even with all that practice, things come up that challenge him and others in the family who pitch in. There was the period of months when his wife, Charlotte, was admitted three times with urinary tract infections.

"I find myself in the hospital; they’re really nice people but they’re so busy," he said. "If you don’t know to ask questions, you’re not going to get answers."

The issue of caregiving is before the state Legislature now, with a measure, Senate Bill 2264, that attempts to strengthen the professional support and recognition of family caregivers. As originally written, the bill would allow a patient admitted to a hospital to name a caregiver and require the hospital to discuss the patient’s care plan before discharge or transfer.

But the part that’s really contentious is the other requirement, that the hospital instruct the designated caregiver in "certain after-care tasks" upon the patient’s discharge.

That mandate drew resistance from opponents, especially the Healthcare Association of Hawaii, an organization that includes representatives of all the acute- and long-term-care facilities in the state — with concern about liability at the center of it.

As a result, the version of the bill that is likely to pass the Senate was softened to leave training a matter of hospital discretion.

State Sen. Clayton Hee said that was done primarily to keep the discussion of the issue going in the House, where a similar bill stalled.

Susan Reinhard, a registered nurse and senior vice president of AARP and director of its Public Policy Institute, has been watching this with interest. Reinhard was in town last week to address a forum on a study she co-authored, "Home Alone," a national family caregiver survey (see story, page E-4).

Among the big takeaways Reinhard cited was the plain fact that many family caregivers are in over their heads.

"I’ve been in this field a long time," she said, "and these findings really surprised me. That almost half of family caregivers were doing the things that nurses normally did … such as injections."

What’s most worrisome is that this burden is about to land on a wide swath of the population. In the 1980s and ’90s, Hawaii and the rest of the country were flush with family caregivers because the large baby boomer population was doing much of the caregiving.

But the caregiver workforce has dwindled since then, and in the next few decades, the count of those needing care — those numerous baby boomers — will approach the projected number of family members available to provide it.

According to an AARP study released last fall, Hawaii’s ratio of caregivers to patients stood at 8.7 to 1 in 1990. By 2010 it fell to 6.1 to 1, and by 2030, it will be just under a 3-to-1 match. The study projects out to 2050, when there will be just over two potential family caregivers for every elder who needs that assistance.

To some extent, Reinhard said, hospitals feel increased pressure to make sure vulnerable patients are discharged well enough to avert readmission for the same ailment. Under the Affordable Care Act, excessive readmissions will cost hospitals in penalties assessed against their reimbursements — for example, from Medicare.

George Greene, president and chief executive officer of the Healthcare Association of Hawaii, said hospitals already have to meet standards for discharging patients set by both the federal Centers for Medicare and Medicaid Services and by the Joint Commission for Hospital Accreditation.

"I am confident that our hospitals do meet them," Greene said. "If not, they would lose that accreditation, and if CMS finds that they’re not meeting them, they won’t get their reimbursement."

The association remains opposed to SB 2264, even the Senate Draft 2 that replaces the "shall" terminology with "may." Even when mandates are converted to advisories, he said, the fact that anything is in statute heightens the risk of litigation. Greene said that if the bill progresses in the House, the association will ask leaders to let its committees discuss the issue in the interim, rather than try to put it into law.

He acknowledged that many caregivers feel ill-equipped to handle the more difficult tasks of home health care for their elders but maintained that the solution is a more robust system of community-based, clinically trained staff to help families. There already are too few of them, Greene said, which makes their services unaffordable to many households.

Reinhard, however, said there are things for which people simply aren’t going to hire a professional and that some basic support is needed.

"So they’re giving medications," she said. "Not a surprise, right? But the problem is, they’re not just helping with one pill, they’re helping with 10 and 20 medications, which have interactions.

"So the big thing around medications is monitoring the side effects," she added. "They’re scared. They’re literally afraid that they’re making a mistake. That’s what I didn’t expect as much."

Special diets are another source of stress for caregivers, she added, because there are so many different kinds.

"Seriously, we’re asking family caregivers to do things that make nursing students tremble," she said. "Because it is scary. You’re touching people, you’re doing things to them that are kind of icky, some of it, and a little scary."

Some of the caregiver testimony on the bill centered less on the home treatment issue than on the lack of consistency on connecting with a caregiver before discharge. Keri Yamamoto, an occupational therapist said her uncle very nearly was discharged without sufficient assistance getting him home from the hospital.

Her uncle was sent home from the hospital, Yamamoto said, based on the observation that he could manage with a walker. But when she arrived at her uncle’s house shortly after her father had brought him there, she saw that he had fallen trying to get up a small step. Left alone, she said, her father and aunt wouldn’t have been able to help him up.

When she pointed out to staff that it was only because of her professional background that she was able to help her family, they said, "They’re so lucky that they have you!"

"And I’m thinking, ‘That’s not the right answer,’" Yamamoto added.

Yamamoto said she previously worked at a hospital in Washington state where discharge protocols were much more consistently observed, and family caregivers were more regularly briefed on how to manage the patient’s needs at home.

"The whole discharge process is not what it used to be in the past," she said. "In this 21st century, everybody’s working. Family can’t take care of family as much anymore."

There is such a need to provide help to family caregivers, Takeya said, that sometimes they have to lean on each other. Some doctors who have worked with the Takeya family have referred other caregivers to him for advice.

"I get the doctors’ reluctant caregivers, and we get them to come to my house," he said. "The problem people have is that people who have dementia can’t really explain what’s wrong. It’s sort of a guessing game."

Hee said his hope is that some kind of accord may emerge if the discussion about SB 2264 continues into the second half of the legislative session.

"In a state that has such a large aging population, the word caregiver is no longer a foreign word to most families," he said. "The idea of medical facilities training caregivers is a terrific idea.

"But figuring out how do you encourage caregiving, and how do you encourage hospitals to share their depth of knowledge, to me that’s the policy issue."