Family caregivers: What you should know about burnout

Tips and Support for Family Caregivers

Providing care for a family member in need is a centuries-old act of kindness, love, and loyalty. And as life expectancies increase and medical treatments advance, more and more of us will participate in the caregiving process, either as the caregiver, the recipient of care, or possibly both.

Unfortunately, caregiving can take a heavy toll if you don’t get adequate support. Caregiving involves many stressors: changes in the family dynamic, household disruption, financial pressure, and the sheer amount of work involved. As the stress piles up, frustration and despair take hold and burnout becomes a very real danger. But you can prevent caregiver burnout by following a few essential guidelines:

• Learn as much as you can about your family member’s illness and about how to be a caregiver as you can. The more you know, the more effective you’ll be, and the better you’ll feel about your efforts.
• Know your limits. Be realistic about how much of your time and yourself you can give. Set clear limits, and communicate those limits to doctors, family members, and other people involved.
• Accept your feelings. Caregiving can trigger a host of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief. As long as you don’t compromise the well-being of the care receiver, allow yourself to feel what you feel.
• Confide in others. Talk to people about what you feel; don’t keep your emotions bottled up. Caregiver support groups are invaluable, but trusted friends and family members can help too. You may also benefit from seeing a therapist or counselor.

Warning signs of caregiver burnout

Once you burn out, caregiving is no longer a healthy option for either you or the person you’re caring for. So it’s important to watch for the warning signs of caregiver burnout and take action right away when you recognize the problem.

Common warning signs of caregiver burnout:

• You have much less energy than you used to
• It seems like you catch every cold or flu that’s going around
• You’re constantly exhausted, even after sleeping or taking a break
• You neglect your own needs, either because you’re too busy or you don’t care anymore
• Your life revolves around caregiving, but it gives you little satisfaction
• You have trouble relaxing, even when help is available
• You’re increasingly impatient and irritable with the person you’re caring for
• You feel overwhelmed, helpless, and hopeless

There are services to help caregivers in most communities, and the cost is often based on ability to pay or covered by the care receiver’s insurance. Services that may be available in your community include adult day care centers, home health aides, home-delivered meals, respite care, transportation services, and skilled nursing.Explore the Family Caregiver Alliance’s Family Care Navigator, a state-by-state resource intended to help you locate services for family caregivers and resources for older or disabled adults.

Below are links to groups, organizations, and resources for Caregivers.

Alpha-1 Association

The Alpha-1 Caregivers Support Group is dedicated to providing support, education and information for Alpha-1 caregivers. 

AARP
The official Web site of AARP, a membership organization dedicated to enhancing the experience of aging through advocacy, information and services.

Alpha-1 CARE

An email list for caregivers to meet to find support, and share ideas and needs with other caregivers who understand. This group was started primarily for caregivers of Alpha-1 patients, but is open to all caregivers.

Administration on Aging
The Administration on Aging is a valuable resource for information on aging, providing information on local services for older Americans.

AgeNet Eldercare Network
Find Problem Solving Eldercare Products, locate organizations and services and use caregiver tools.

CareGivers-USA
CareGivers-USA is a nationwide, non-commercial directory of community-based caregiver support services -- intended to help individuals who are providing care for a family member or friend. All services are free and completely confidential.

Centers for Medicare and Medicaid Services

The Center for Medicare and Medicaid Services has a resource for caregivers whose family members or friends help people with Medicare called Ask Medicare. Caregivers can access and use Ask Medicare for information on healthcare information, services and resources. The Ask Medicare web site provides links to key partner organizations that assist caregivers and beneficiaries.

Department of Health and Human Services

The Department of Health and Human Services is responsible for public health in the United States and provides support and protection to older Americans.

Eldercare Locator
Eldercare Locator is a public service of the U.S. Administration on Aging. This site connects older Americans and their caregivers with sources of information on senior services. The service links those who need assistance with state and local area agencies on aging and community-based organization that serve older adults and their caregivers.

Family Caregiving 101

If you're caring for a loved one who is ill or disabled, this site was created for you. It's a great place to find assistance, answers, new ideas and helpful advice — for you and your loved one.

Family Caregiver Alliance
FCA is a public voice for caregivers. FCA pioneers programs in information, education, services, research and advocacy to support and sustain the important work of families nationwide who are caring for loved ones with chronic, disabling health conditions.

Medicare
The official U.S. government site for people with Medicare provides helpful information on Medicare coverage, Medicare plan choices and contacts, as well as useful health information to help you stay healthy. It features new Caregiver Resource Kit that offers tips and tools for organizations with an interest in supporting caregivers. 

You can access the kit via the site’s “Partners & Professionals” link.  The kit offers materials that enable organizations to:

• Share information that helps caregivers deal with issues such as paying for care, finding nursing homes, managing stress, making the most of the Medicare program and much more

• Pass along videos featuring caregivers who are meeting a wide array of caregiving challenges

• Provide brochures and other helpful information directly to caregivers, including tip sheets on topics such as managing a chronic illness, preparing for a transition from the hospital to home, planning for the future, additional help paying for care, and understanding the basics of Medicare

Mediline 

Find more resources from a list of links from Medline Plus.

National Alliance for Caregiving (NAC)
NAC educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

National Family Caregivers Association
Strives to educate, support, empower and advocate for caregivers.

Partnership for Prescription Assistance  

Caregivers can help patients determine which programs may be available and assist patients in answering questions and filling out forms with the online applications wizard.  This site lists programs that are helpful to people without insurance and less than 200% poverty income level. Although none of the three Alpha-1 augmentation therapies are availible in any of these programs. It would be helpful to those Alpha's not on augmentation therapy that fall within the income parameters with no insurance coverage. 

Social Security
The official Web site of Social Security provides useful benefit information on retirement, disability and survivor's benefits, and other online services.

Third Age

An all-encompassing website on health, wellness, relationships and more for thirdagers.

Today’s Caregiver Magazine: Provider of information, support and guidance for family and professional caregivers. 

US Department of Health & Human Services
Access the National Family Caregiver Support Program.

Well Spouse Foundation
The Well Spouse Association is the only national organization focusing exclusively on the needs of all spouses caring for a chronically ill and/or disabled husband, wife, or partner. Let others who have "been there and done that" help you face the challenges of long-term caregiving.