Michael Sloss鈥 mother was diagnosed with dementia about five years ago, and his father a year after that.
Now Sloss and his brother care for both parents, ages 83 and 85, whose personalities have been transformed by the decline in their mental and physical health.
The brothers wrestle with their parents鈥 memory loss, anger and delusions. They nurse them when they鈥檙e sick and help them bathe. And they lift their father into and out of bed.
鈥淢ostly, it鈥檚 been rough,鈥 says Sloss, 60, of South Pasadena, Calif. 鈥淏ut we have been blessed with a lot of support.鈥
The brothers first sought help from their family鈥檚 church, which offered a respite when their parents attended Bible study and fellowship for a few years after their diagnoses. But that ended when the elder couple鈥檚 physical ailments made it too difficult to transport them to and from services.
Eventually, the brothers found the , which has connected them with support groups, caregiver classes and services that give聽them breaks from caregiving.
The USC organization is one of 11 nonprofit across California that serve about 14,000 families a year. Their aim is to offer low-cost or free services, regardless of income, to people caring for someone 18 or older.
Their offerings include stress-busting activities like yoga and meditation; legal and financial consultations; and tips on how to choose a home health agency, talk to doctors or manage difficult behavior.
鈥淭his was designed to help everyone, including middle-income families,鈥 says Donna Benton, director of the USC center.
by the AARP Public Policy Institute and the National Alliance for Caregiving聽found that roughly 43.5 million adults in the United States had provided unpaid care to an adult or child in the prior year.
The need is expected to increase as baby boomers age and become caregivers for loved ones or require care for themselves, says Amy Goyer, AARP鈥檚 family and caregiving expert.
鈥淎s our health care improves, people live longer, but they tend to live longer with chronic illnesses or conditions,鈥 she says.
There also will be a declining number of caregivers for those in need, because Americans are having fewer children and family structures are changing, Goyer adds.
Simply put, caregiving is hard, it may get harder, and it often leads to emotional, physical and financial hardship.
鈥淧eople tend to think it鈥檚 something temporary 鈥 like a sprint, and then it turns into a marathon,鈥 Benton says. 鈥淎nd then you have all the wrong coping tools. Then you burn out.鈥
Goyer cares for her father, who is 93 and has . Caring for a loved one with Alzheimer鈥檚 or dementia adds an extra burden because of its intensity, she says. 鈥淚t鈥檚 caregiving on steroids because of the constancy of it.鈥
Help is available, much of it for free. But the network of resources is like a 鈥減uzzle you put together,鈥 Goyer says, so be prepared to make multiple calls and queries to different organizations.
If you鈥檙e in California, start with the Caregiver Resource Centers. Find out which one serves your county through the or calling the USC center at 800-540-4442 to be transferred to the right location.
A staff member will work directly with you to determine what you need.
鈥淲e鈥檙e there as a comprehensive, one-stop center,鈥 Benton says. 鈥淚f you have someone who helps you cut through the red tape, it can save you hours and days of aggravation.鈥
Whether or not you鈥檙e in California, Goyer suggests, reach out to your local Area Agency on Aging, which can also connect you with resources. Visit and enter your ZIP聽code to find local contact information.
When you call, request a personalized assessment of your situation, Goyer recommends.
鈥淎lways ask them, 鈥榃hat support do you have for caregivers?鈥 The person you鈥檙e caring for might be eligible for chore services or housekeeping or respite care,鈥 which can give you a break from caregiving, she says. 鈥淚n some cases, if their income qualifies them for Medicaid, they might be able to get home health aides.鈥
The Family Caregiver Alliance, a national group based in San Francisco, can link you to support, most of it free. Visit and click on the 鈥淔CA CareJourney鈥 tab to fill out the online survey.
After you receive personalized suggestions, you can follow up with a staff member online or by phone (800-445-8106), says Executive Director Kathleen Kelly.
The alliance, which has been helping caregivers for nearly 40 years, says its clients frequently ask how they can better care for their loved ones, where they can find emotional support for themselves and whether they can get paid for the care they are already providing, since many of them had to quit their jobs, Kelly says.
Their needs change over time. 鈥淲e鈥檙e a place that people can come back to,鈥 she says. 鈥淲e deal with people over the long term.鈥
If you鈥檙e interested in doing more digging:
- Visit , where you can find help in multiple languages, free online webinars and resource guides.
- Contact disease-specific organizations such as the or the ; or , which offers resources and information for caregivers.
- Reach out to friends, family members, neighbors and your place of worship, if you have one. Hospitals often have social workers who can help connect you to services.
Sloss, the South Pasadena resident, has taken classes that have taught him to better communicate with his parents and defuse confrontational behavior. He and his brother have also benefited from respite care, which allows them to have some time for themselves. And they have relied on their caregiver group for emotional support.
鈥淭hose are people going through the same things you鈥檙e going through and can really identify with your situations,鈥 Sloss says. He urges other caregivers not to forget about their own health and happiness.
鈥淪eek help. You should definitely get a respite, whether it鈥檚 from a family member, friend or organization, because you need time to recharge,鈥 Sloss says.
鈥淯nfortunately, some of the patients outlive the caregivers because the caregivers don鈥檛 necessarily take care of themselves.鈥
This story was produced by , which publishes , an editorially independent service of the .