Help and Resources for Caregivers:

What do we need to know as family caregivers?

Providing care for a family member in need is a centuries-old act of kindness, love, and loyalty. Most of the population will participate in the caregiving process, as the caregiver, the recipient of care, or possibly both. The demand for caregiving services has increased dramatically and will continue to rise with increased life expectancies and medical advances.

As the caregiving population has grown over the years, the definition of "caregiver" has taken on many meanings. The San Francisco-based Family Caregiver Alliance describes caregivers as "family, friends and neighbors who stand by those they love as they face chronic illness, disability, or death. Caregivers are a diverse group of people of all ages and from all walks of life - some new to caregiving, some just anticipating becoming caregivers, and others for whom providing care has become a way of life."

Taking care of yourself while caregiving

When you are a caregiver, finding time for positive, nurturing interactions with others might seem impossible. But you owe it to yourself to find time for you. Without it, you may not have the mental strength to deal with all of the emotions you experience as a caregiver, including guilt and anger. Give yourself permission not to be perfect…you're doing the best you can.

• Incorporate activities that give you pleasure even when you don't really feel like it. Listen to music, work in the garden, engage in a hobby…whatever it is that you enjoy.
• Pamper yourself. Take a warm bath and light candles. Find some time for a manicure or a massage.
• Eat balanced meals to nurture your body. Find time to exercise even if it's a short walk everyday. Do the best you can to sleep at least 7 hours a night.
• "Laughter is the best medicine"…buy a light-hearted book or rent a comedy video. Whenever you can, try to find some humor in everyday situations.
• Keep a journal. Write down your thoughts and feelings. This helps provide perspective on your situation and serves as an important release for your emotions.
• Arrange a telephone contact with a family member, a friend, or a volunteer from a church or senior center so that someone calls each day to be sure everything is all right. This person could relieve you of responsibility by contacting other family members to let them know the status of the care receiver or if you need anything.
• Try to set a time for afternoons or evenings out. Seek out friends and family to help you so that you can have some time away from the home. And, if it is difficult to leave, invite friends and family over to visit with you. Share some tea or coffee. It is important that you interact with others.
• Join a support group. Seek out people who are going through the same experiences that you are living each day. If you can't leave the house, many Internet services are available.
• Draw strength from your faith, or any faith-based caregiving support services. A congregation in a church or synagogue can provide the encouragement you need to feel good about your caregiving role, and may also be able to provide a break from time to time.

Finding community support

• Many organizations assist caregivers through support groups, home visitors, respite care, transportation, and other services. Call your local Area Agency on Aging, senior center, senior services organization, county information and referral service, university gerontology department, family service, or hospital social work unit for contact suggestions.
• If your care recipient is a Veteran, 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.
• Fraternal organizations such as the Elks, Eagles, or Moose lodges may offer some assistance if your care recipient is a longtime dues-paying member. This help may take the form of phone check-ins, home visits, or transportation.
• Many community transportation services are free for your care recipient, while others may have a nominal fee or ask for a donation. Your local Area Agency on Aging (AAA) can help you locate transportation to and from adult day care, senior centers, shopping malls, and doctor's appointments.
• Telephone reassurance provides prescheduled calls to homebound older adults to reduce their isolation and monitor their well-being. Check with your local AAA, religious groups, senior centers, and other public or nonprofit organizations.
• 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. (See Helpguide’s Adult Day Care Centers: A Guide to Options and Selecting the Best Center for Your Needs for more information.)

Helpful tips to make caregiving easier

• For an older person who cannot get in and out of the tub alone and who does not feel safe in the shower, install grab bars next to toilets, bathtubs, and showers. This is very important to prevent falls.
• Also, get a stool for the tub or shower or, at least, put a sturdy lawn chair right in the tub on a nonslip rubber mat. Help the person to step carefully into the tub, to sit on the chair, to shower, then to stand up and step out. A hand-held shower attachment is also very helpful.
• Use a draw sheet (half sheet) to help move the person in bed.
• Replace buttons, zippers, and snaps with Velcro® fasteners (available at local yardage or craft stores). All types of clothing, including shoes, are now being made with Velcro® fasteners.
• Use a hand towel (which is larger than a washcloth) for sponge-bathing a bedridden person.
• Add foam padding to increase the size of handles on toothbrushes, razors, combs, and utensils. Foam curlers also work well.
• Obtain an identification bracelet for the older adult you care for, containing name, address, and telephone number. If the person wanders or gets lost, an ID bracelet will ensure that they can be identified. If there is a special medical problem, get a Medic Alert Emblem (necklace or bracelet) engraved with the recipient's condition.
• Make a list of contents of cupboards and drawers used by the care recipient. Use large print, and tape the lists to the drawers and cupboards.
• Use a Chinese soup spoon to avoid spilling food if the care recipient's hand shakes.
• Older people can learn new skills if they see the value of what they are expected to learn. Take time to explain how, what, and why.
• Make audiotapes or CDs of your loved one's favorite music so that you or they can play it easily. Listening to music can lift the spirits and take the mind off pain.

Medication and health care tips

• Talk to a pharmacist about the best way to organize medications, and be sure that you purchase something specifically for the purpose of managing medications.
• Find ways to make your care recipient laugh. Laughter has many proven health benefits. Laughter helps to relax muscles and relieve pain, and boosts the immune system.
• Keep oranges and orange juice in the house. Recent research has confirmed the importance of vitamin C and other antioxidants in reducing the risk of osteoarthritis as well as slowing progression of the disease.
• Nonfat dry milk is a good protein supplement in soups, milk shakes, and casserole dishes, or mixed with water for reconstituted milk.
• Make sure your care recipient wears sunscreen as well as a hat and protective clothing when going out, whether the sun is shining or not. Some medications increase the likelihood of skin damage from the sun's ultraviolet rays.
• Ask your care recipient's physician or physical therapist to recommend a stretching routine. Stretching promotes flexibility in joints and muscles, which helps preserve range of motion.
• If reasonable, suggest a swimming class for your care recipient. Exercising in water effectively works the joints with minimal impact.

How can a caregiver support group help me?

Remember that old adage, "trouble shared is trouble halved"? A support group is one way to share your troubles. In most support groups, you'll talk about your problems and listen to others talk; you'll not only get help, but you'll be able to help others, too. Most important, you'll find out that you're not alone.

Types of Caregiver Support Groups
Community support groups	People live near each other and meet in a given place each week or month. You get face-to-face contact with people and a chance to make new friends who live near you. Since the people are from your area, they'll be more familiar with local resources and challenges. Gets you out of the house and gets you moving. You will need to attend meetings regularly to get the full benefit of the group.
Internet support groups	People are from all over the world and have similar interests or problems. You meet online, through email lists, websites, message boards, or chat rooms. Usually active all day – you can access them whenever it's convenient for you or when you need help most. You can get support without leaving your house, which is good for people with limited mobility, serious health problems, or transportation problems. If your problem is very unusual – a rare disease, for example – there may not be enough people in your area to make a community support group, but there will always be enough people online.

To find a community support group, check the yellow pages, or call a local organization that deals with the kind of problem you would like to address in a support group. (Examples are Alzheimer's, bereavement, stroke, disability, hearing or vision loss, or aging in general.) If it's a medical problem, ask your doctor or hospital.

To find an Internet support group, visit the website of an organization dedicated to the problem or do a web search on the name of the problem.

See References and resources: we have included groups for some of the more common problems, as well as general-interest support groups and websites.

References and resources about support for the caregiver

Other related links

Additional resources about support for the caregiver

Information Library – 100 fact sheets and publications on numerous caregiving issues. (Family Caregiver Alliance)

Tips for Caregivers – Provides information to help caregivers prevent burn-out and relieve the stresses of caregiving. (National Family Alliance)

Tips for Family Caregivers – Ten important tips for caregivers. (National Family Caregivers Association)

Online Guide to Caregiving – A comprehensive collection of articles and tools to assist caregivers. (AARP Magazine)

Advice for Caregivers / Terminal Illnesses - Contains articles that present advice for caregivers faced with terminal illness patients

Alzheimer's Disease caregiver support groups

The Alzheimer's Association has community support groups in most places.

Cancer caregiver support groups

The American Cancer Society has online support groups and a listing of community support groups. To find groups in your community, enter your city and state or zip code in the form under "In My Community."

CancerCare.org offers internet, community, and telephone support groups on topics related to cancer.  To find groups, choose a type of group from the drop-down menu at the left side of the page, under Cancer Care Services.

Teresa Modnick and Gina Kemp, M.A., contributed to this article. Last modified on: 3/14/07.