Feature story: The retirement-home dilemma

Miriam Angus, 92, has lived at Channing House, a senior living center in Palo Alto, for nearly 20 years. When she moved in, the former bookkeeper was 73 and very active, driving the state to visit her children and grandchildren and taking advantage of all Palo Alto had to offer. An extrovert, she participated in many activities and was known for hosting cheery happy hours.

“I had been burdened with my own mother’s care for far too many years,” she said of her decision to move into a retirement community where health care would be an option. “I did not want my children to do what I had done.”

Angus was on the waiting list for a unit at Channing House for five years. By the time she moved into a one-bedroom overlooking the glossy magnolias on Webster Street, her husband had suffered an extended illness and died.

Angus has thrived at Channing House — for example, completing her memoirs. She remained in good health until a nasty bout of shingles cost her the vision in one eye. Then, eight years ago, venal occlusion began restricting the blood flow in her good eye. Her physician told her she would lose her sight completely in six to nine months.

Though she loved her apartment, she immediately notified the Channing House staff she wanted to move into an assisted-living unit on a lower floor, so she could adjust to the new surroundings before she lost her sight entirely.

“I did not want to be a burden to my floor,” she explained.

Today, Angus, “Mim” to her friends, lives with surprising self-sufficiency, thanks to her razor-sharp mind, sunny disposition and her facility with technology, like voice-activated e-mail from Google. She is able to give a tour of the entire 11-story facility quite easily, having memorized its layout. The only assistance she requires is when she drops something on the floor and then requires a staff person to find it for her and pick it up.

Palo Alto is home to more than a half dozen senior living communities. Some are nonprofits; others are run by religious organizations. Still others are part of large corporate chains, such as Sunrise and Vi (formerly known as Classic Residence by Hyatt). Most include a range of services, from recreational programs for those living independently to various levels of health care for people in assisted-living and skilled-nursing units.

Some homes, but not all, provide care for those with Alzheimer’s. Few, however, are designed for low-income seniors, and most facilities have waiting lists (see PDF).

Those who work with the elderly say many residents who raised families in the community want to stay here, if they can afford to do so. But not all seniors make the transition to assisted living as gracefully as Angus. Often, the decision is made in a time of crisis, when illness or depression forces the situation. Consequently, at a time requiring a clear head, many instead feel vulnerable and grief-stricken over the loss of their independence, which makes it difficult to make good decisions.

Experts such as Michael Griggs, head of social work at Palo Alto’s Avenidas senior center, said the No. 1 problem for most seniors is waiting too long to make decisions about their future care.

“You want control, I understand, but you have to take control early on. If you wait, it will be taken from you,” he said.

It can be difficult to parse the choices and separate facts from emotion during the search for residential care.

“Let’s face it, next to buying a home, this is probably one of the biggest decisions of your life. When we are older, and often more frail, there are also issues of health and mental health. All this stuff makes it much more complicated,” Griggs said.

Because the most desirable facilities have waiting lists — and some impose maximum age limits for entry — there are seniors who will miss out on the chance to live in a particular senior community. Last-minute choices often mean going where there is an opening, which may not be the senior’s first choice or the best fit for his or her immediate condition.

Fran Ogle, 77, has lived at Vi on Sand Hill Road for one year. Two years ago, she and her late husband, H. Kelly, were happily living in the Sharon Heights home they built in 1960. But when her husband was diagnosed with terminal liver cancer and his health quickly declined, she knew she did not want to live alone.

“In the week before he went into the hospital for the final time, I said I didn’t want to live in that house by myself. And he said, ‘I don’t want you to live by yourself,'” Ogle recalled.

She knew someone who lived at Vi, and she liked the location across from Stanford Shopping Center. Ogle put her name on the waiting list. But it was a year before an apartment came available, and even then she had little choice.

“I took what opened up,” she said.

In that short time, Ogle struggled with home repairs without her husband’s help. The fence fell down, and the sprinkler system broke.

“Now I go to bed at night without worrying about tree branches falling on the roof, and so on,” she said.

The array of choices for residential care can be overwhelming, said Joe Matthews, an attorney, author of “Long-Term Care,” and an editor at Caring.com, a website devoted to helping seniors and their families manage their care.

Seniors are not only renting or buying an apartment, they are also buying a contract for care such as assistance with daily-life tasks or skilled nursing.

Channing House and Vi are continuing-care retirement communities. That means they have increasing levels of care, so residents can remain at the same facility as their health declines and they need more help. A resident may progress from independent living, in their own apartment, to one of two levels of assisted care, where they may have private or shared rooms, to skilled-nursing care, which has more of a hospital-like atmosphere.

Not all health situations are covered, however. At Channing House, for example, those who develop Alzheimer’s must go to another facility; Channing House is not equipped for late-stage (violent, combative or wandering) Alzheimer’s care.

And there may be social drawbacks to consider. At Vi, residents who need assisted living or skilled-nursing care move into adjacent buildings and may not see their old neighbors on a regular basis.

Lengthy contracts spell out who decides when seniors will move into advanced levels of care, and why.

Facilities licensed as continuing-care retirement communities (CCRCs), sometimes called “life care” facilities, such as Channing House, have extensive contracts and must adhere to a slew of state laws, most falling under the state’s Health and Safety Code, when it comes to the care they provide at each level.

Thus both state law and facility policy dictate the level of independence seniors must achieve in order to be able to stay in a given level of care. Often these are simple and sound straightforward, such as being able to get out of a chair unassisted.

But seniors don’t always understand the repercussions — or anticipate them. And it’s tempting, experts agree, for a senior to want to fudge certain criteria in order to stay in a unit or on a floor where they feel comfortable. These contracts will also spell out whether seniors are able to hire outside help to assist them or if they must rely solely on the services provided by the facility.

“There are always going to be disagreements,” Matthews said. “Problems usually arise around whether the criteria are clear enough, who needs to be consulted and who makes the ultimate decision.”

Such issues came into play recently in litigation, now settled, between Channing House and a former resident, Sally Herriot. Herriot’s health was declining, but she did not want to move from her apartment and so hired private help for 16 hours each day rather than moving to the assisted-living floor at Channing House. (According to the settlement, Herriot moved out of Channing House but has the right to move into Channing House’s skilled-nursing wing in the future without paying an entrance fee.)

Matthews’ own mother, now deceased, bristled when she found she needed to move, briefly, into assisted care following an illness.

“She ended up back in independent living but wound up hiring someone to come in a certain number of hours a day to help her. Her facility allowed that, and allowed caregivers to spend the night.”

But, Matthews said, not all do, and it gets quite expensive.

“That’s why assisted living can be a great thing for people.”

Both Griggs and Matthews urge seniors and their families to get help when comparing retirement communities, the services they offer and the regulations that govern their operations.

“Geriatric-care managers can be immensely useful in the search process,” Matthews said.

Geriatric-care managers and social workers who serve older adults will help seniors investigate the levels of care into which they may progress and steer them away from making decisions based on surface details, such as the light in the day room or the quality and variety of desserts.

“The problem is people tend to look almost exclusively at the front end and not at the back end or middle parts,” Matthews said.

Likewise, Griggs recommends having a third-party involved in the process.

“I would encourage any older adult who is planning on making that move (to a senior living facility) to have an advocate with them and to ask as many questions as possible. You should probably compile a list of questions before you sign any contract. … The more you know, the more empowered you’ll be,” Griggs said.

In addition to health care services, seniors should ask whether fees increases, which cover ongoing care, for example, will be capped at a certain percentage, or what the procedures are for resolving problems or complaints, such as issues with roommates.

Matthews said a lawyer should review the complex legal contracts required to buy into a continuing-care facility.

“Many times, you are sinking your life savings into one place,” Matthews said.

As careful as seniors are in selecting their retirement homes, disagreements do arise. Then, Griggs and other experts recommend going to either the Long Term Care Ombudsman Program at Catholic Charities of Santa Clara County or the Ombudsman Services of San Mateo County, a nonprofit that investigates and works to resolve complaints on behalf of residents in long-term care facilities. Ombudsman Services, for example, will send a volunteer to accompany a senior to a meeting with staff about transitioning into a different care level.

Difficult transitions rarely lead to litigation, as they did in the case of Herriot. But the case points out the problems when seniors find it difficult to accept they need more care than they needed previously.

Not all seniors find the changes upsetting, though it is a natural reaction, experts say. Angus’ neighbors, a married couple, live in two separate units, on two separate floors, at Channing House. She is lively and in good health, but her husband has a form of dementia and needs careful attention and care to ensure he eats properly and doesn’t wander from the facility. She lives in the couple’s spacious one-bedroom, with tomato plants on her balcony and a spectacular view of the leafy Stanford University campus, while he lives on a floor where he gets greater assistance. The arrangement gives her a degree of freedom she would not otherwise have. She is in and out of his room constantly, she said, and the two eat meals together.

Angus views her floormates as her family. One of her daughters lives in Palo Alto, and she and her husband are considering signing up at Channing House, Angus said.

For her part, Ogle said her three adult children are “thrilled” she lives at Vi, and Ogle likes knowing they don’t have to call her daily to check on her.

“It has worked out extremely well,” she said. “The whole family would move in if they could.”