Providing care for a family member in need is an age-old act of kindness, love, and loyalty. And as life expectancies increase, medical treatments advance, and increasing numbers of people live with chronic illness and disabilities, more and more of us will participate in the caregiving process.
There are many different types of family caregiver situations. You may be taking care of an aging parent or a handicapped spouse. Or perhaps you're caring for a child with a physical or mental illness. But regardless of your particular circumstances, you're facing a challenging new role.
If you're like most family caregivers, you aren't trained for the responsibilities you now face. And you probably never anticipated you'd be in this situation. You may not even live very close to your loved one. At the same time, you love your family member and want to provide the best care you can. The good news is that you don't have to be a nursing expert, a superhero, or a saint in order to be a good caregiver. With the right help and support, you can be a good caregiver without having to sacrifice yourself in the process.
New to family caregiving?
- Learn as much as you can about your family member’s illness and about how to be a caregiver. The more you know, the less anxiety you’ll feel about your new role and the more effective you’ll be.
Seek out other caregivers. It helps to know you’re not alone. It’s comforting to give and receive support from others who understand what you’re going through.
Trust your instincts. Remember, you know your family member best. Don’t ignore what doctors and specialists tell you, but listen to your gut, too.
Encourage your loved one’s independence. Caregiving does not mean doing everything for your loved one. Be open to technologies and strategies that allow your family member to be as independent as possible.
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.
Caregiving can trigger a host of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief. It's important to acknowledge and accept what you're feeling, both good and bad. Don't beat yourself up over your doubts and misgivings. These feelings don't mean that you don't love your family member—they simply mean you're human.
What you may feel about being a family caregiver
- Anxiety and worry – You may worry about how you will handle the additional responsibilities of caregiving and what will happen to your family member if something happens to you. You may also fear what will happen in the future as your loved one’s illness progresses.
- Anger or resentment – You may feel angry or resentful toward the person you’re caring for, even though you know it’s irrational. Or you might be angry at the world in general, or resentful of other friends or family members who don’t have your responsibilities.
- Guilt – You may feel guilty for not doing more, being a "better" caregiver, having more patience, accepting your situation with more equanimity, or in the case of long distance caregiving, not being available more often.
- Grief – There are many losses that can come with caregiving (the healthy future you envisioned with your spouse or child; the goals and dreams you’ve had to set aside). If the person you’re caring for is terminally ill, you’re also dealing with that grief.
Even when you understand why you're feeling the way you do, it can still be upsetting. In order to deal with your feelings, it's important to talk about them. Don't keep your emotions bottled up, but find at least one person you trust to confide in.
Places you can turn for caregiver support include:
- Family members or friends who will listen without judgment
- Your church, temple, or other place of worship
- Caregiver support groups at a local hospital or online
- A therapist, social worker, or counselor
- National caregiver organizations
- Organizations specific to your family member’s illness or disability
Even if you’re the primary family caregiver, you can’t do everything on your own, especially if you’re caregiving from a distance (more than an hour’s drive from your family member). You’ll need help from friends, siblings, and other family members, as well as health professionals. If you don’t get the support you need, you'll quickly burn out—which will compromise your ability to provide care.
But before you can ask for help, you need to have a clear understanding of your family member’s needs. Take some time to list all the caregiving tasks required, being as specific as possible. Then determine which activities you are able to meet (be realistic about your capabilities and time). The remaining tasks on the list are ones you'll need to ask others to help you with.
Asking family and friends for help
It's not always easy to ask for help, even when you desperately need it. Perhaps you're afraid to impose on others or worried that your request will be resented or rejected. But if you simply make your needs known, you may be pleasantly surprised by the willingness of others to pitch in. Many times, friends and family members want to help, but don't know how. Make it easier for them:
- Set aside one-on-one time to talk to the person
- Go over the list of caregiving needs you previously drew up
- Point out areas in which they might be of service (maybe your brother is good at Internet research, or your friend is a financial whiz)
- Ask the person if they’d like to help, and if so, in what way
- Make sure the person understands what would be most helpful to both you and the caregiving recipient
Pablo Casals, the world-renowned cellist, said, “The capacity to care is the thing that gives life its deepest significance and meaning.” It's essential that you receive the support you need, so you don't lose that capacity. While you're caring for your loved one, don't forget about your own needs. Caregivers need care, too.
Emotional needs of family caregivers
- Take time to relax daily and learn how to regulate yourself and de-stress when you start to feel overwhelmed.
- Keep a journal. Write down your thoughts and feelings. This will give you perspective and serve as a way to release strong feelings.
- Talk with someone to make sense of your situation and your feelings.
- Feed your spirit. Pray, meditate, or do another activity that makes you feel part of something greater. Try to find meaning in your life and in your role as a caregiver.
- Watch out for signs of depression and anxiety, and get professional help if needed.
Social & recreational needs of family caregivers
- Stay social. Make it a priority to visit regularly with other people.
Nurture your close relationships. Don't let yourself become isolated.
- Do things you enjoy. Laughter and joy can help keep you going when you face trials, stress, and pain.
- Maintain balance in your life. Don’t give up activities that are important to you, such as your work or your hobbies.
- Give yourself a break. Take regular breaks from caregiving,
and give yourself an extended break at least once a week.
- Find a community. Join or reestablish your connection to a religious group, social club, or civic organization. The broader your support network, the better.
Physical needs of family caregivers
- Exercise regularly. Try to get in at least 30 minutes of exercise, three times per week.
Exercise is one of the best ways to relieve stress and boost your energy. So get moving, even if you’re tired.
- Eat right. Well-nourished bodies are better prepared to cope with stress and get through busy days. Keep your energy
up and your mind clear by eating nutritious meals at regular times throughout the day.
- Avoid alcohol and drugs. It can be tempting to turn to substances for escape when life feels overwhelming, but they
can easily compromise the quality of your caregiving. Instead, try dealing with problems head on and with a clear mind.
- Get enough sleep. Aim for an average of eight hours of solid, uninterrupted sleep every night. Otherwise, your energy level, productivity, and ability to handle stress will suffer.
- Keep up with your own health care. Go to the doctor and dentist on schedule, and keep up with your own prescriptions or medical therapy. As a caregiver, you need to stay as strong and healthy as possible.
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.
- Caregiver services in your community – Call your local senior center, senior services organization, county information and referral service, university gerontology department, family service, or hospital social work unit for contact suggestions. In the U.S. call your local Area Agency on Aging.
- Caregiver support for veterans – If your care recipient is a veteran in the U.S., home health care coverage, financial support, nursing home care, and adult day care benefits may be available. Some Veterans Administration programs are free, while others require co-payments, depending upon the veteran’s status, income, and other criteria.
- Your family member’s affiliations – Fraternal organizations such as the Elks, Eagles, or Moose lodges may offer some assistance if your family member is a longtime dues-paying member. This help may take the form of phone check-ins, home visits, or transportation.
- Community transportation services – Many community transportation services are free for your care recipient, while others may have a nominal fee or ask for a donation. In the U.S., your local Area Agency on Aging can help you locate transportation to and from adult day care, senior centers, shopping malls, and doctor's appointments.
- Telephone check-ins – Telephone reassurance provides prescheduled calls to homebound older adults to reduce their isolation and monitor their well-being. Check with local religious groups, senior centers, and other public or nonprofit organizations.
- Adult day care – If your loved one is well enough, consider the possibility of adult day care. An adult day care center can provide you with needed breaks during the day or week, and your loved one with some valuable diversions and activities.
Find caregiver services in your area
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.
Family caregiving tip 5: Provide long distance care
Many people take on the role of designated caregiver for a family member—often an older relative or sibling—while living more than an hour’s travel away. Trying to manage a loved one’s care from a distance can add to feelings of guilt and anxiety and present many other obstacles. But there are steps you can take to prepare for caregiving emergencies and ease the burden of responsibility.
- Set up an alarm system for your loved one. Because of the distance between you, you won’t be able to respond in time to a life-threatening emergency, so subscribe to an electronic alert system. Your loved one wears the small device and can use it to summon immediate help.
- Manage doctor and medical appointments. Try to schedule all medical appointments together, at a time when you’ll be in the area. Make the time to get to know your loved one’s doctors and arrange to be kept up-to-date on all medical issues via the phone when you’re not in the area. Your relative may need to sign a privacy release to enable their doctors to do this.
- Investigate local services. When you’re not there, try to find local services that can offer home help services, deliver meals, or provide local transportation for your loved one. A geriatric care manager can offer a variety of services to long-distance caregivers, including providing and monitoring in-home help for your relative.
- Schedule regular communication with your loved one. A daily email, text message, or quick phone call can let your relative know that they’re not forgotten and give you peace of mind.
Manage caregiver stress and avoid burnout. There's no getting around it. Caregiving is stressful. But you don't have to be overwhelmed by your responsibilities. Learning to manage stress is part of being a good caregiver. And it's not as impossible as you may think. Read Caregiver Stress and Burnout.
Resources & References
Helpguide’s Yellow Pages
Resources for public assistance, social services, and other health and human services.
AARP - Tools, work sheets and tips on how to plan, prepare and succeed as a caregiver.
Eldercare Locator - Connects families to community-based resources for senior care.
Family Caregiver Alliance - Covers a wide range of issues, from how to talk to an attorney to federal and state legislation related to caregiving.
Next Step in Care - Helps family caregivers of chronically or seriously ill patients navigate the health care system as they transition between care settings.
A Place for Mom - Free referral service that directs families to housing and assisted living facilities.
National Family Caregivers Association - Tips to help caregivers care for themselves.
National Association of Area Agencies on Aging - Portal for options that allow people to choose home and community-based services and living arrangements that suit them best.
Family caregiving services - internationally
Looking for Local Carers’ Services? – NHS services available to UK carers of disabled children and adults, including respite care. (NHS)
Commonwealth Respite and Carelink Centres – For Australian residents, provides information and support services for older people, people with disabilities and those who provide care and services. (Australian Government)
Carers New Zealand – Offers help and advice for New Zealand carers, including guidance on respite care services. (Carers NZ)
Programs and Services – Information on services for seniors in Canada, including in-home support. (Government of Canada)
Long distance caregiving
Caring From a Distance – An organization for long-distance caregivers in the U.S., providing service directories and helplines. (CFAD.org)
National Association of Professional Geriatric Care Managers – Offers information about care management and how to find and hire a geriatric care manager. (NAPGCM)