Caregiver Burnout: Signs of Strain and Respite Options in California

Burnout is an everyday word, not a diagnosis. The National Institute on Aging uses the term caregiver stress and says the ongoing demands of caring for someone else can strain even the most resilient person. It notes that caregivers tend to have a higher risk of physical and mental health issues, sleep problems and chronic conditions such as high blood pressure.

The institute says it is not always obvious when a caregiver needs help, and lists these signs to watch for:

• Feeling exhausted, overwhelmed or anxious
• Becoming easily angered or impatient
• Feeling lonely or disconnected from others
• Having trouble sleeping, or not getting enough sleep
• Feeling sad or hopeless, or losing interest in activities you used to enjoy
• Having frequent headaches, pain or other physical problems
• Not having enough time to exercise or prepare healthy food for yourself
• Skipping showers or other personal care
• Misusing alcohol or drugs, including prescription medications

Its advice is not to wait until you are completely overwhelmed. If several of these describe you, tell your own doctor that you are a caregiver. The institute says a doctor can advise you about your physical and mental health and may know about support groups and respite care in your community. If you feel sad or hopeless, raise that with your doctor directly.

The National Institute on Aging defines respite care as short-term relief for primary caregivers, giving them time to rest, travel or spend time with other family and friends. It may last anywhere from a few hours to several weeks at a time, and it can take place at home, in a health care facility or at an adult day care center.

The Alzheimer's Association adds something families often overlook: respite is not only for the caregiver. It can give a person living with dementia the chance to be with other people and take part in activities matched to their abilities. On guilt, it is direct: seeking help does not make you a failure.

California's Department of Aging quotes the director of one Caregiver Resource Center, who says that respite is not a luxury and that caregivers need time to recharge so they can continue providing care.

These are the main forms a break can take. They can be combined.

Two notes on the table. Adult day programs differ. Community-Based Adult Services (CBAS) is California's day health program for Medi-Cal beneficiaries who meet medical necessity criteria, and the Department of Aging says its centers provide nursing services, therapies, personal care, hot meals and transportation to and from home. Ask any adult day center what it offers and what it costs.

A short stay in a licensed home means a residential care facility for the elderly (RCFE), the license held by assisted living communities and board and care homes. Not every home offers short stays, and those that do need an open room. Our page on respite care placement explains what a home asks for before a short stay.

California has two networks for family caregivers.

The first is the Family Caregiver Support Program, reached through your local Area Agency on Aging. The Department of Aging says it offers information, referrals, training, counseling, support groups, help with care planning and respite care. It serves adult family members and other informal caregivers who care for someone age 60 or older, or for a person of any age with Alzheimer's disease or a related disorder. To reach your local agency, the department gives the number 800-510-2020.

The second is the network of 11 California Caregiver Resource Centers. The Department of Aging says the centers serve family caregivers of adults affected by chronic and debilitating health conditions, including dementia, Alzheimer's disease, stroke, Parkinson's disease and traumatic brain injury. They provide services in all 58 counties at low or no cost, and no means test is required. Core services may include:

• Family consultation and care planning with trained staff
• Respite care, described as financial assistance for temporary in-home support, adult day care services, short-term or weekend care and transportation
• Short-term counseling with licensed counselors, for individuals, families and groups
• Support groups, online or in person
• Legal and financial consultation with attorneys on powers of attorney, advance directives, conservatorships and related matters
• Workshops and training on dementia, long-term care planning and stress management

According to the National Institute on Aging, respite from a friend, relative or volunteer may cost nothing, while professional services charge by the hour or by the number of days or weeks. It says most private health insurance plans do not cover respite, some long-term care insurance plans may, and Medicaid may provide payment assistance. In California, Medicaid is called Medi-Cal. Ask the county or the health plan what applies.

There is one Medicare exception. For a person receiving hospice care, the institute says Medicare will cover most of the cost of up to five consecutive days of respite care in a hospital or skilled nursing facility.

The Alzheimer's Association suggests looking into scholarships, sliding scale fees and government programs.

Respite helps most when it is regular. The Alzheimer's Association suggests trying a provider before an emergency forces the choice, and notes that regular stays can make a new setting easier for a person with dementia to adjust to.

Sometimes the breaks stop being enough. The National Institute on Aging says that in time an older person may have to move to a residential facility such as assisted living or a nursing home, and that the primary caregiver will need support through that change. If you are weighing it, our comparison of assisted living and home care and the signs it may be time for assisted living are the next two things to read. If your own health gives out suddenly, see emergency assisted living placement.

If a relative is in immediate danger, call 911. If you fear you can no longer keep someone safe at home, tell their doctor and yours.

Hamssa Benrekia is a senior living placement specialist in Torrance with a background in hospice, palliative care and home health. She helps families in the South Bay and Harbor area of Los Angeles County find licensed homes with an opening for a short stay, and assisted living communities and board and care homes when a longer move is the choice. She does not arrange home care or run a day program. To ask what is open for your dates, contact Hamssa. More topics are in the California Assisted Living Placement Guide.