Elder Care and Assisted Living - Who Will Care For You? Part 1

Making the Right Moves

Despite these challenges, families can find high-quality assisted living facilities. But start your search well before you or your parent actually needs care. If your parent’s health declines, assisted living might not even be an option, says Deborah Fins, an aging-life-care expert in Worcester, Mass. Many facilities will not take people who are wheelchair-bound or need help with multiple chronic conditions, but some allow residents to stay if they become more infirm. To help you target your search, here are four key questions to ask:

1. What Kind of Help Will the Resident Need?

Perhaps your parent no longer drives and is becoming socially isolated. Or he or she can’t manage stairs or forgets to turn off the oven. For seniors who need moderate amounts of support, assisted living could be the smart choice. Assisted living is working well for Sharon Koenig, 76, who lived alone for two years after her husband died. “I kept waiting for him to come in the door,” Koenig says. She also was having trouble tracking her medications. With help from an aging-life-care expert, who is familiar with local facilities, Koenig looked at several senior residences, including a small nursing home.

Unlike some of the other places, Regal Palms in nearby Largo, Fla., a large facility with several levels of care, offered a varied menu of activities. Last October, Koenig moved to the assisted living section, into a two-bedroom apartment that has space for her 50-gallon aquarium. She gets help with medication but still does her own laundry. “Some people might be afraid of a big place, but I think it’s better,” she says. “There’s always someone to have dinner with.”

Smart move: Make sure your family member has a medical evaluation from a primary care doctor—or a specialist, if your parent has an illness—to understand the level of care required, as well as how those needs might change. For more perspective, hire an aging-life-care expert to help point you to appropriate residences. “Given the wide variation in the types of services provided by assisted living communities, it’s well worth spending the several hundred dollars for a professional care manager,” says Stephen Maag, a director at LeadingAge, an association of nonprofit senior-living groups.

2. How Good Is the Quality of Care?

Make sure the residence is licensed to provide assisted living, to ensure that there’s at least a minimum level of oversight. Take a close look at the residence’s inspection record, which indicates how often it has been checked or whether it has had complaints. (See “10 Helpful Resources,” below.) Some states, such as Florida and California, maintain consumer-friendly assisted living websites that list inspection records and regulatory actions. But some states do not, or they fail to update them. You can also ask your state ombudsman’s office about a facility’s complaint record.

In the end, the best information about quality of care could come from people who visit facility residents, as well as from the residents themselves. Ask the residents specifics about the care—whether meds are delivered on time, for example—and how management responds to complaints, suggests Liz Barlowe, an aging-life-care expert in Seminole, Fla.

Try to make multiple visits to the residence—including at meal time and on weekends. Most facilities will welcome you even if you don’t have an appointment. Talk to residents, and see whether the staffers seem happy or appear overworked.

Smart move: Ask how the residence would handle a fall, a common occurrence. Would a nurse be on hand to evaluate your parent, or would he be sent to the emergency room? And ask whether “the facility provides an on-site clinician or medical staff that can help the resident avoid the expense and health risk of an unnecessary trip to the ER or a hospitalization,” says Alan Kronhaus, M.D., CEO of Doctors Making House Calls, a North Carolina medical group that provides on-site healthcare to assisted living residents.

3. What Are the Real Costs of Care?

Ask for a written list of the fees, and make sure the information is included in your contract. (See “Putting Your Contract Under the Microscope.”) Some facilities have all-in costs that cover room, board, and care for a particular level of assistance, and others have point systems or charge à la carte. (See “11 Ways to Afford the Care You Need.”)

Be sure to get clear information about the circumstances that could trigger higher or additional charges and how the facility assesses those fees, says Patty Ducayet, state long-term-care ombudsman for Texas. What would it cost to have your dad driven to a doctor 10 miles away vs. 5 miles away? Is it okay to hire private aides?

Smart move: Ask about the policy for lowering fees. Say your mom requires a higher level of care for a week to recover from a hospital stay. How quickly can the fees be cut when she has recovered? “Bumping down the charges tends to take longer than bumping up,” says Karen Jones, a state long-term-care ombudsman in San Luis Obispo, Calif.

4. Can Your Parent Be Kicked Out?

Involuntary discharges rank among the top complaints in most states, according to the National Consumer Voice survey. Discharges are usually triggered by lack of payment or care needs that exceed the facility’s capacity to provide the services. The discharge terms should be detailed in the contract, as well as the required amount of notice you’ll receive, which is typically 30 days.

For Jill Goldberg, the possibility of her mom’s discharge was unexpected. Her mom, Sylvia Wenig, 94, was living in Brookdale West Boynton Beach in Boynton Beach, Fla. “We’d been getting great care there,” says Goldberg, 61, who lives near Boston. But after a hospitalization, Wenig lost her mobility and was not allowed to return to the facility. Goldberg asked if her mother could return for a week or two to allow time to find another facility, but Brookdale refused.

Goldberg says she persuaded the hospital to let her mother stay a few more days, and with help from an aging-life-care expert, she moved Wenig to a nursing home. Says Brookdale spokesman James Hauge, “For residents who require more care than the community is able to provide, we inform them of other care options and actively help them find a community that can meet their new care needs.”

Smart move: Don’t rely on the marketing director’s assurances that your parent will be able to age in place. “Verbal agreements are nearly impossible to prove,” says Jones, who recommends getting the promises in writing. With assisted living, it’s better to know exactly where you stand.

Blog reprinted from article called: Elder Care and Assisted Living: Who Will Care for You? By Penelope Wang, August 31, 2017, https://www.consumerreports.org/elder-care/elder-care-and-assisted-living-who-will-care-for-you/

Living with Alzheimer's, As a Patient and a Caregiver

Reprinted from: http://www.wnyc.org/story/alzheimers/
Jul 23, 2015

More than five million Americans suffer from Alzheimer's disease, and according to the Alzheimer's Association, and 15.5 million Americans are currently caring for them.

A new drug might provide some hope for those showing very early symptoms of the disease. This week at the annual Alzheimer’s Association International Conference in Washington, the pharmaceutical company Eli Lilly released new data on a drug that seems to prevent the buildup of amyloid plaques in the brain—the type of plaques many doctors believe are tied to Alzheimer's.

Scientists say it's much too early to tell if the drug will make it to the market, but for those who care for Alzheimer's patients, the potential treatment offers at least a glimmer of hope for a disease with very few prospective cures on the horizon.

Dr. David Kramer was diagnosed with Alzheimer's in 2012 at the age of 56. He retired from his job as an emergency room physician and currently lives with his wife and caregiver in Florida. He says he’s cautiously optimistic about the new data from Eli Lilly.

“I have some preliminary optimism with the results, but I had an opportunity to read the paper on the study that was discussed and presented,” says Kramer. “The data is very, very preliminary, and there’s not any clear evidence from what I can see that this will have any long-term effect. But it’s way too soon to tell.”

Like Kramer, Meryl Comer is also watching with some hope. She has been an Alzheimer's caregiver for 20 years—her husband, a former research physician at the National Institutes of Health, was diagnosed with early-onset Alzheimer's at the age of 57.

Comer, who is also a journalist and author of the New York Times bestseller, “Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer's,” cares for her husband along with her mother, who also has Alzheimer’s disease.

“It’s promising, but premature, and people tend to read the headlines only—we’ll receive calls saying, ‘Good news, your problems are over,” she says. “They don’t understand the complexities of the disease. It’s easier to get to Mars than it is to find a disease-modifying therapy for a very complex issue like Alzheimer’s.”

Comer applauds pharmaceutical companies that are working to find treatments and cures for the disease, despite the many false starts and failed attempts that have already been made.

“We went through a phase where, after these failed trials, we were afraid that we would be abandoned at a time when the numbers are growing exponentially—44 million globally are suffering from the disease,” she says. “The other new hopeful part is there are 13 new therapeutic compounds, and four or five are disease modifying therapies. I stay close to the science, as do all advocates, because we are desperate for a disease-modifying therapy. Just give us five more years of quality of life—think what that might mean to an individual.”

Despite the excitement around the findings presented by Eli Lilly, the hope of a treatment for an Alzheimer’s is just that—a hope.

“While these may have potential, even after the phase three trials are done, you still do not know if the effects will be long lasting—whether the slowdown in the progression of the disease, if it actually does occur, will be consistent overtime,” Kramer says. “There’s a lot to learn.”

Even with all the uncertainty, Kramer says that he does not feel powerless in the face of his diagnosis. 

“I feel that it’s important for me to enjoy the time that I have now,” he says. “My wife and I focus on doing everything that we can now and enjoying life. There is a definite benefit in having an early diagnosis, as I was fortunate to have. I can then say, ‘Alright, I know what I’ve got, but I’m doing well now.’ As long as I can continue to do well and live well with the disease, I plan on doing that.”

But not all are so lucky. Comer says that many doctors are reluctant to give an early diagnosis of Alzheimer’s because there is no cure. She says that her husband was misdiagnosed for four years, with doctors saying that her husband’s condition might have been Lyme’s disease or depression.

“It’s insulting to families who are lost and confounded by behaviors, because behaviors are the first things that appear around the disease,” she says. “We have to [call for] an early diagnosis—give us a chance to live in the moment with our loved ones, don’t decide for us.”

An early diagnosis, Comer argues, helps families and those suffering with the disease to live fully, especially since the disease can progress at different speeds.

“Often you’re moving from crisis to crisis,” she says. “You really try to look at the successes—that he had a good day. The caregiver actually forgets who they are because you are so focused on protecting the dignity of the loved one who has the disease and of giving them their last ‘hurrah.’ That takes tremendous energy.”

Comer adds that this is the “biggest women’s issue since breast cancer” since women often outlive men, and the majority of caregivers are women, who are also much more likely to give up their careers for a loved one in need.

“I interact a lot with many, many people with dementia, and I tell you that the primary concern that all of us have is about the health and welfare of our caregivers,” Kramer adds. “I’m much more concerned about the impact of this disease on my wife than I am on myself.”

Click here to hear the entire story from NPR