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About 10 years ago, when Donna Braley was 79, her family started to notice that she was having trouble doing the things she'd always loved to do -- crocheting, cooking, doing crossword puzzles. Because her children lived in different states, it took a while for them to piece together their stories and discover that their mother needed help.
The family hired a geriatric care manager, and "her assessment made it obvious to us that Mom would soon no longer be able to live at home without full-time caregiving," says her daughter Kathi Dunn.
The family moved Braley to a semi-independent apartment in a locked Alzheimer's facility in Roseville, Calif., near her son Scott and his wife, Amy. But after she was there for a few months, she became combative and difficult to manage. So they found another Alzheimer's facility that "looked like a model home with a gourmet chef," says Amy. "But it was too large." Braley would roam the huge hallways and go in and out of people's rooms, disturbing their belongings.
When money started to run short, the family searched for another option. They heard about a 15-person facility that focused on dementia, which seemed like a better fit and was less expensive. The third time was the charm: For the past two years, Braley has required total care and uses a wheelchair full-time, but the staff at her new home have found ways for her to be as active as she can. When her grandchildren visit, they play in the back yard as if it were Grandma's house, and the residents' families watch out for one another.
START THE SEARCH
When it's time to get extra care for your parents, you may be forced to decide quickly, especially if your parent has been in the hospital and needs extra help as soon as he or she is released.
"You're making a traumatic and important decision under pressure," says Byron Cordes, a geriatric care manager with Sage Care Management, in San Antonio, Texas. "The hospital may say you need to move your dad by the end of business today, then just hand you a magazine about senior-living options and say, 'Good luck finding a nursing home,'" he says.
Cordes recommends that you take the time to find out exactly what your parent needs. That often means talking to the doctor, social worker, nursing staff, case manager and discharge manager. Or it may mean hiring a geriatric care manager to help coordinate the various care providers.
It can be challenging to balance quality and cost. The median price of a private room in a nursing home tops $6,900 per month, and assisted-living facilities cost more than $3,400 per month, according to the Genworth 2013 Cost of Care Survey.
So unless your parents have long-term-care insurance, they -- or you, if you're helping to pay the bills -- may not be able to afford the ideal setting for very long. Medicare covers very little long-term care, and most people aren't eligible for Medicaid until they've spent most of their money.
But new resources can help you make the decision.
"The landscape has changed for senior housing," says Andy Cohen, CEO of Caring.com, where people share reviews of nursing homes and assisted-living facilities. "Some are more like college dorms for seniors, with good food, transportation and activities. A lot of children feel guilty, but after they visit these places, they say that Mom's healthier and happier."
Assisted living in many cases can take the place of nursing-home care, at least in the early stages of care, says Sandra Timmermann, a gerontologist in Fairfield, Conn. Some facilities have continuing care, and residents can move to another wing in the same facility if they need more supervision. Or you can hire a caregiver to provide extra assistance in an assisted-living facility so that you don't have to move your parent to a nursing home. And people with dementia and Alzheimer's have many options for memory care.
Medicaid generally covers nursing homes but not assisted-living facilities, so your parents can usually choose assisted living only if they have enough savings or long-term-care insurance. (A few states have Medicaid voucher programs, which allow a limited number of people to use Medicaid money for assisted living; see Medicaid.gov for each state's rules.)
The Medicare Nursing Home Compare tool assesses more than 15,000 nursing homes throughout the U.S. based on inspections, complaints and staffing ratings. But it doesn't include most assisted-living facilities, which have different licensing requirements in each state. You can go to the Eldercare Locator or a local Area Agency on Aging for help finding assisted-living facilities, but these resources don't assess the services. Review sites, such as Caring.com, let you see others' experience with the facilities.
Several services can help you with your search. CareScout includes ratings and profiles for more than 90,000 assisted-living facilities, nursing homes and home-care providers. For $495, you can work with a care advocate, who helps assess your needs and narrow the list to three or more facilities to visit; the advocate can also negotiate discounts at the facilities. Many Genworth policyholders get free access to CareScout for themselves or their parents, and some employee-assistance programs include access to similar services.
HIRE A PRO?
A geriatric care manager can help you explore your options. Care managers are also familiar with local facilities and benefits programs, so hiring one can be a good idea if your family has multiple siblings or if you're researching care options from a distance. Go to www.caremanager.org to search for care managers throughout the U.S. They generally charge $100-$180 per hour and are not allowed to accept finder's fees from facilities.
Geriatric care managers have made a big difference for Jennifer Russell of Tampa, Fla. Her mother, Margie Yeagley, who lived in San Antonio, seemed to be doing fine living alone after her husband died. But four years ago, Russell realized she needed more help.
Russell asked Byron Cordes, the geriatric care manager, to have Yeagley evaluated and discovered she had significant dementia. Cordes found an assisted-living facility in San Antonio with a memory-care unit, and they moved her mother right away. After two years of traveling back and forth between California, where Russell lived then, and Texas, Russell decided it would be easier to move her mother to California.
Her first step was to find a care manager in California, who helped identify the best facilities and doctors. When Russell's husband got a new job in Tampa, they repeated the process again. Russell's mother is now in a memory-care wing of a large assisted-living facility nearby.
WHAT TO LOOK FOR
After you narrow the list to two to five places, visit and ask questions. And don't just talk with the marketing people; talk with the people who are providing the care.
"Go completely unannounced and walk in at whatever time of day you can," says Cordes. "I've been in nursing homes when they've announced that a tour is coming in. You see the housekeeping staff spraying the halls with Febreze and closing the doors to patients' rooms." See how people are treated at mealtime and how they're treated at 8 p.m.
Next, schedule a meeting with the marketing director to get more details about how the facility cares for residents. Every nursing home is required to have a care plan. What would be in the care plan for your parent? What activities would the facility offer to your parent? How are the residents' physical needs monitored?
Ask about the patient-to-staff ratio (Cordes usually recommends 18-20 patients per caregiving staffer). What type of specialized training do the staff have in dealing with your parent's medical condition? Ask if your parent will get any time outside the facility, especially if he or she is in a locked memory-care wing of a long-term-care facility (some have courtyards).
Ask for a list of the costs, especially for assisted living. In some facilities, you may get a set number of hours of personal care, and you may be charged extra if your parent needs more. After your visit, ask yourself: Is this a place where you would want to spend time? Is it clean? How does it smell? Are the residents showered, with clean clothes? Is the food healthy and tasty? How would your parent fit in with the other residents?
"Does the staff treat the residents with respect or, better yet, like beloved grandparents?" adds Amy Braley.
Your parent may start out in assisted living but eventually need care in a nursing home. No matter what, monitor your parent's care with the same critical eye you brought to the selection process. If the place isn't a good match, don't be afraid to move your parent to one that feels like home.