If you're a daughter or son, sibling, parent, or spouse, or even a friend, some day you may find yourself in the role of "family caregiver". More than 52 million Americans (31 percent of the adult population age 20 to 75) are already there.1 They wear many hats –that of companion, personal shopper, financial manager, chauffeur, housekeeper, cook, personal care assistant, advocate, counselor, nurse, emotional support provider and more. They are a lifeline for the people they support and our long term care system. A study by AARP reveals that at 350 billion dollars, the economic value of non-compensated caregiving exceeds 2006 Exxon Mobile profits.
While the caregiving role can be enormously rewarding, it also means a lot of sacrifice. It may start with just a few hours a week. Usually the need expands and with each increase, caregivers forfeit more of their personal lives. The average family caregiver provides nearly 18 to 20 hours of care a week in addition to holding down a job and managing a family.2 It is not unusual for caregivers to be forced to leave the workforce as needs escalate. Caregiving can last from less than a year to several decades.
Caregiving comes with a whole host of conflicting emotions. Self doubt might be at the top of the list. Are you making the right decisions? Are you following the doctor's instructions correctly? When you cannot fix the unfixable you may become frustrated. You grieve as you bear witness to a loved one's decline. You grieve for the life you are no longer living. Guilt follows hard on the heels of anger and resentment.
Just as overwhelming is the never-ending "To Do" list. Most caregivers face a landscape of too little support at too high a cost. While improvements are slowly being made, our healthcare system just isn't set up to deal with those who require long term home care.
Enter caregiver burnout. It happens when caregivers try to do more than they are able to do. It's physical, emotional and mental exhaustion and leaves the caregiver vulnerable to illness. The chronic stresses of being a caregiver can lead to cardiovascular disease, hypertension, stroke, and a compromised immune system.
Caregivers are often so preoccupied with the needs of their loved ones that they fail to recognize their own warning signals. Caregiver burnout symptoms are similar to those for anxiety and depression and include:
- Sleep disturbances and fatigue
- Lost interest in once-pleasurable things
- Changes in appetite, weight, or both
- Getting sick more often
- Withdrawal from social contacts
- Persistent feelings of worry, hopelessness and sadness
- Low self-esteem
- Overreacting to minor issues
- Decreased productivity
- Alcohol or drug abuse
To evaluate your level of caregiving stress take a simple test from the PBS Caregiver's Handbook (part of the web site for our 90-minute program Caring for Your Parents). Go to Caregiver Self-Assessment Questionnaire (PDF).
If you find you have a number of symptoms associated with high levels of physical and emotional stress, contact your primary care doctor for an appointment, take the questionnaire with you, and discuss how you can get the medical, physical and emotional support you need.
1 U.S. Department of Health & Human Services, Informal Caregiving, Compassion in Action
2 American Society on Aging, A Profile of Informal and Family Caregivers
For a list of resources on end-of-life planning, go to Second Opinion, End of Life (Episode 313)
For more information about caregiver burnout, use the links below:
AARP is a nonprofit, nonpartisan membership organization devoted to people who are 50 or older. Their web site includes a section on Caring for Those You Care About featuring free online seminars on planning for and managing caregiving.
An agency of the U.S. Department of Health and Human Services, AOA is the focal point for older persons and their concerns at the federal level. The site provides a comprehensive overview of a wide variety of topics, programs and services related to aging as well as links to government, nonprofit, and commercial caregiver Web sites.
This caregiver self assessment questionnaire is available in English and in Spanish to help caregivers determine how they are coping with the challenges and stresses of giving care to a loved one.
Operated by the U.S. Administration on Aging, this is a nationwide directory of state and area agencies that deal with services for the aging. There's also a toll-free number – 1-800-677-1116 – which operates Monday through Friday, 9:00 a.m. to 8:00 p.m., Eastern time.
Family Caregiver Alliance is one of the largest and oldest organizations in the US devoted solely to caregivers. The web site includes information, free publications, and an online caregiver support discussion group. See their article on Taking Care of YOU: Self-Care for Family Caregivers.
NAC is a joint venture of several private and governmental agencies. They conduct research, develop national projects, and work to increase public awareness of the issues of family caregiving for older Americans. The site includes information for caregivers on how to take care of themselves while providing care. Check the Publications section for online brochures.
NCOA is a nonprofit organization with a national network of more than 14,000 organizations and leaders. Members include senior centers, area agencies on aging, adult day service centers, faith-based service organizations, senior housing facilities, employment services, consumer groups, and leaders from academia, business, and labor.
BenefitsCheckUp includes information on more than 1,550 public and private benefits programs from all 50 states and the District of Columbia, such as:
This site identifies federal and state assistance programs for older Americans in each community. Check out their TAKE CARE! - Self Care for the Family Caregiver quarterly newsletter.
Several other episodes of Second Opinion also explore topics that are relevant to caregiver burnout. They include:
This nonprofit organization provides support and other resources to husbands, wives, and partners of chronically ill or disabled individuals. They are a peer led, mutual aid, self-help support organization. The web site will help you find a support group in your area.
This site offers useful resources on topics that affect women caregivers. It is part of the U.S. Department of Health and Human Services' Office of Women's Health. See their section of Caregiver Stress.
For information and assistance resources for individuals with particular diseases and conditions, national associations provide a great deal of information and guides to supportive services. Many of the associations also have local offices.
For quick facts on end-of-life planning, go to Second Opinion, End of Life (Episode 313)
The following statistics are from the U.S. Department of Health & Human Services:
- 52 million Americans (31 percent of the adult population age 20 to 75) provide informal care to a family member or friend who is ill or disabled. About 37 million provide help to family members and about 15 million provide help to friends.
- 8 percent of these caregivers reported providing help over the last year to more than one care recipient.
- 38 percent of informal caregiving is provided by children to aging parents. It is the most common informal caregiving relationship.
- 11 percent of informal caregiving is provided by spouses, most often to their elderly wives or husbands.
- 7 percent of informal care is provided to significantly disabled children, most often to adult disabled children by middle-aged parents.
- About 20 percent of informal care is provided to other relatives such as grandparents, siblings, aunts, and uncles, and about 24 percent is provided to friends and neighbors.
- The average age of all informal caregivers is 43 years old. Spouses caring for their disabled husband or wife are somewhat older, with an average age of 55 years.
- Both men and women provide informal care. However, up to age 70, women are more likely to be caregivers and to provide more hours of care, to provide more care over longer periods, and to care for more than one person. On average, women provide about 50% more hours of informal care per week to their care recipients than their male counterparts.
The following statistics are based on a 2003 RAND Corporation study:
- 20% of the elderly die from a short period of evident decline, such as from cancer, with death occurring usually within a year.
- 20% die following several years of increasing physical limitation, such as from coronary artery disease or emphysema. The patient survives a few episodes but then die from an exacerbation rather suddenly.
- 40% will die according to a gradual but unrelenting trajectory, with steady decline, enfeeblement, and growing dependency often lasting a decade or longer.
- Less than 5% of people over 65 live in nursing homes. About eight out of 10 older men and six out of 10 older women live in family settings, with a spouse or other family members.
Key Point 1
Being a caregiver puts your physical and emotional well-being at risk. If you are caring for a loved one, let your doctor know. It can be important to the healthcare you receive.
Think of the last time you flew on a commercial plane. Before every flight, you are told, "Should the cabin lose pressure, oxygen masks will drop from the overhead area. Please place the mask over your own mouth and nose before assisting others." The same advice is fundamental for caregivers. When they ignore their own needs, they jeopardize their ability to be a caregiver. They also increase their risk for ongoing health problems after caregiving is over.
Research shows that family caregivers:1
- Are more likely to be have symptoms of depression or anxiety
- Are more likely to have a long-term medical problem, such as heart disease, cancer, diabetes, or arthritis
- Have higher levels of stress hormones
- Spend more days sick with an infectious disease
- Have a weaker immune response to the influenza, or flu, vaccine
- Have slower wound healing
- Have higher levels of obesity
A 2004 National Alliance for Caregiving Study revealed that both the time and the intensity of caregiving affect the level of health decline. Caregivers who reported their health got a lot worse as result of caregiving (15%) spent an average of 58 hours a week caregiving and those with a moderate deterioration in health (44 percent) spent an average of 42 hours a week caregiving.
Caregiving has to include caring for you. But how do you do it? To begin with:
- Accept your feelings, even the negative ones
- Recognize there's no such thing as a perfect caregiver
- Identify what you can and cannot change
- Be realistic about your loved one's disease
- Ask for help
- Take care of the basics – follow a healthy diet and get at least fifteen minutes of exercise a day
- Take a short respite break every day by doing something just for you
- Learn relaxation techniques
- See your doctor regularly and tell him or her about your caregiving commitment
- Talk to a professional – therapists, social workers, and clergy members
- Talk to friends
- Join a caregiver support group
- Do not self medicate with alcohol or drugs
- Maintain your spiritual life
- Involve healthcare professionals who can help you access support services.
- Perhaps most importantly, remind yourself daily of the love that inspired you to take on a caregiving role. When you do, it can help you deal with even the most difficult care receivers with compassion and humor.
Finding help can take a considerable amount of research. Here are some options you may want to pursue:
- Check into technology that can help. You can:
- Purchase an emergency response system service. Your loved one wears a button pendant and when pressed, a monitoring center is alerted and contacts a predetermined list of people who can help.
- Set up a baby monitor so you can hear your loved one from another area of your home. For the more techno savvy, you might consider a webcam.
- Use a mobility monitor to prevent wandering if your loved one suffers from dementia.
- Contact your local Area Agency on Aging to learn about caregiving services in your area. Find them by checking the Yellow Pages under Health and Human Services or through the National Eldercare Locator.
- Contact your State Unit on Aging. Find them through the National Association of State Units on Aging.
- Find adult day care programs in your area if your loved one is mobile. They can look after your loved one for a full day or just a few hours. Some adult day care centers will provide transportation to and from your home.
- Find nursing homes or assisted living facilities that offer short-term respite stays.
- Investigate support groups and internet sites devoted to the challenges of caregiving. Check our Resources page for help.
- Find out if professional counseling is covered under your health insurance plan. If you're age sixty or over yourself, you may qualify for counseling under the Older Americans Act, Title III-B. This federally funded program provides a variety of in-home and community-based services for individuals with the greatest economic and social need who meet program guidelines.
- Check out opportunities for training. The American Red Cross offers hands-on training on how to recognize and respond to emergencies and how to perform CPR. Visiting Nurse Association of American (VNAA) provides training on a variety of topics including wound care, nutrition, controlling diabetes and more.
- If you're still in the workforce, get information about the federal Family and Medical Leave Act that provides for caregivers to take up to 12 weeks of unpaid leave per year to care for relatives. Or, ask your human resources liaison about other options for unpaid leave.
- Medicare, Medicaid, and private insurance companies will cover some of the costs of home health care.
- Find out if you are eligible for Medicare home health care services by reading Medicare and Home Health Care available at http://www.medicare.gov/Publications/Pubs/pdf/10969.pdf.
- Find out if you qualify for Medicaid by calling your State Medical Assistance Office. Get the phone number by going to the Contacts Database of the Centers for Medicare & Medicaid Services at http://www.cms.hhs.gov/apps/contacts.
- Consider tapping into faith-based groups, such as Catholic Charities, Lutheran Social Services, Jewish Family and Children Services, that offer support services for caregiving families.
1 The National Women's Health Information Center, U.S. Department of Health and Human Services, Caregiver Stress.
Key Point 2
Caregiving can be a source of joy as well as guilt and resentment for families. Learning to talk to each other openly and to listen without judgment is key to achieving shared goals.
Caregivers often find themselves going it alone, even if there are other family members that can help. Geography may play a role as people become more mobile, but even out-of-towners can pitch in if they are willing and if you have a plan so they can understand the scope of their responsibilities.
If you are the primary caregiver, don't fall into the trap of expecting family members to just step in. They may be unaware of what is needed and what your life is like.
The ideal is to have family meetings with a healthcare professional present, such as a social worker or care manager. They can lay out all your options with their pros and cons, help you define clear-cut roles for each family member and support you in building consensus.
Some of these questions may help start the dialog:
- What are your loved one's wishes?
- What help do you need now and what are you likely to need in the future?
- What medical, legal and financial decisions will need to be made and who will make them?
- Who should have power of attorney and/or be named as the healthcare proxy?
- Who will serve as the primary coordinator or caregiver?
- How much time will it take for the primary caregiver to coordinate everybody's efforts?
- What contingency plans need to be put in place in case the primary caregiver can no longer function as such?
- How much are you willing to spend for paid care?
- Who will pay for what?
- How can you achieve a relatively equitable division of labor?
- Under what circumstances should you consider a skilled nursing facility?
Tasks can be divided by time, money and talent. It is a good idea to put it all in writing. Also, caregiving responsibilities will vary from day to day, week to week. Ask family members to be flexible when you need backup. Don't overlook doing simples tasks, such as providing companionship to the care receiver.
How do you get help from reluctant family members? Ask for it in very precise terms. If they refuse a task, give them a list of tasks and ask them to pick. Give them the option of doing them or paying to have them done. The trick is in not allowing yourself to become emotional or to be diverted from your goal. Know going in that the strategy may not work. If that is the case, you may need to move on.
Caregiving can cause family friction, but it can also bring out the best in people. You can smooth the way by:
- Continuing to let family member's know their help is wanted and needed
- Understanding each family member's coping style
- Making sure everyone's opinions are heard and respected
- Expressing appreciation to each other
- Being realistic about each individual's abilities and limitations
- Keeping everyone informed about changes in your loved one's condition
Conduct an off-site search for Caregiver Burnout information from MedlinePlus. These up-to-date search results are based on search terms specific to Second Opinion Key Points.
Ask Your Doctor
For questions to ask your doctor on end-of-life planning, go to Second Opinion, End of Life (Episode 313)
This list of questions is a good starting point for discussion with your doctor; however, it is not a comprehensive list.
- Can you give me advice on how to tap into local sources for caregiving support?
- How can I tell if caregiving is putting too much stress on me?
- Are there tests I should have to monitor my heart health and my immune system?
- Should I schedule more frequent appointments with you while I'm in a caregiving role?
- If you suffer from anxiety or depression:
- What can I do to manage my stress/depression?
- Why is exercise useful? How much and what type is beneficial?
- Does meditation work?
- What about vitamins?
- What other coping techniques should I consider?
- What are the different types of psychotherapy and are any of them appropriate for me?
- Do you consider my depression mild, moderate or severe?
- Should I consider anti-depressant or anti-anxiety medication?
- Is there an effective treatment that doesn't involve medication?
- What are the side effects and long-term effects of the medication?
- How much improvement should I expect from medication?
- How long might I need to take medication? How will I know that I can discontinue it?
- What is the next step if the medication doesn't work?