HOW TO FIND HELP

As a caregiver of a person with cancer, you have stresses and demands that can feel overwhelming at times. It doesn't matter whether you are a fulltime caregiver taking time off work or a part-time caregiver with a fulltime job, the stress can feel constant. While there are growing numbers of resources and services available through your employer, there are also many avenues of help you can explore on your own, as well as simple strategies to ease the burden.

Don’t expect your employer to do it all when it comes to stress reduction for you as a caregiver. In fact, if you check out resources first, on your own, before going to your employer, he or she may be even more willing to help. For example, your church or temple group, community hospital or health plan or other organizations could be rich sources of help. Be creative in finding help and reducing the stress.

Seeking help on your own first, before approaching your employers, shows you have made an effort and taken the initiative to reduce stress and be not only a better caregiver but a better employee. Your employer then may be even more willing to meet you more than halfway on your requests to be absent from work or to make alternative work arrangements so you can better care for your loved one with cancer.

Here are some suggestions on where you might find help outside the workplace, along with suggested strategies on thinking outside the box to be a better caregiver.

Outside Resources

Help from the community

Organizations or individuals within your community or in your church, temple or charity group might be untapped sources of help. If you are a well-known member of your temple or church, people may begin to pitch in as soon as news of your loved one's diagnosis spreads. They might offer to take your loved one to the doctor or for chemotherapy treatments or for other appointments. They may have been through a similar experience, caring for someone with cancer, Alzheimer's disease or other serious conditions and just be able to empathize or reassure you that you will be able to handle everything. Beyond the offers of personal help, you might also ask about other sources of aid. For instance, is there a group that might provide hot meals, such as delivering lunch to your loved one at home while you are at work?

Emotional and psychological help

Your own health plan or HMO might offer the services of a mental health therapist if you would like to go for individual counseling, or perhaps find a support group. With the growing number of cancer diagnoses a year, mental health therapists are becoming more familiar with the issues of the patients and those who care for them.

If your family doctor can't recommend a therapist, you can check with various associations. Some state psychological associations maintain online referral service. For instance, California residents can go to the website of the California Psychological Assn's doctor referral section at http://www.cpapsych.org/displaycommon.cfm?an=1&subarticlenbr=54.

There is also a nationwide consumer line maintained by the American Psychological Assn., (800) 964-2000. Callers are connected with the referral system, such as the state psychological association, in their area.

Another option is the Association for Advancement of Behavior Therapy, which maintains an online referral system in which you can request a therapist in your area with expertise in cancer. Go to http://www.aaabt.organd click on "Find a Therapist." Even if a therapist you are referred to has not worked with caregivers of cancer patients, it's probable that he or she has worked with the family member of someone with a serious or chronic illness, and some of the challenges are very similar. The generic support skills that mental health professionals are adept at offering are often enough to help caregivers, experts say.

Specialized support groups

Instead of seeking the help of a therapist for individual counseling (or in addition to), you might want to seek out a specialized support group. One option, depending on your location, is through the Wellness Community, which has 23 locations worldwide. Besides providing information and support for cancer patients, the organization offers support groups for family members and other loved ones. The premise, for cancer patients, is to take a "Patient Active" approach—to be involved in treatment decisions, know their doctor's credentials and in other ways be an active participant.

Your neighborhood hospital or your health maintenance organization may offer help in the form of specialized support groups for caregivers, too. Call the hospital switchboard or call the member services department at your HMO and ask what services and resources they offer for caregivers of cancer patients. For instance, the St. Jude Medical Center in Fullerton, Ca., has an ongoing caregiver support group that meets regularly and has another support group that is designed for the patient and the caregiver to attend together.

Virtual support

If you're a working caregiver, time isn't on your side. Fortunately, there is a host of virtual support. Check out online support groups for caregivers at http://www.thewellnesscommunity.org/support/house.php, sponsored by the Wellness Community.

CancerCare, an organization for patients and their loved ones, has a caregiver empowerment, three-month online support group. For additional information: http://www.cancercare.org.

The Cancer Information Network has a new "Cancer Caregivers R Us" support group online, which allows participants to post messages, share stories and strategies. For additional information: http://www.cancerlinksusa.com/support/index.asp

Respite care

When the stresses of caregiving pile up, a respite can help. Whether the break is only for a few hours or is a weekend or longer, mental health experts say it is crucial that caregivers be given a breather. Some caregivers arrange informal respites, such as asking someone else in the family or circle of friends to take over for a weekend, an evening, a week or maybe longer. For certain people, there may be benefits available under a new program called the National Family Caregiver Support Program. Developed by the Administration on Aging of the U.S. Department of Health and Human Services, it came into being as part of the Older Americans Act Amendments of 2000. Among the people it serves are caregivers of adults who are age 60 and above.

AOA works through a national network of 56 state units on aging, 655 area agencies on aging, 236 tribal and native organizations and other service providers.You can check in with your Area Agency on Aging to see what services are offered to caregivers, or you might check in with your state's department of mental health.

Often, the resource center for caregivers in your vicinity, whether it falls under the Area Agency on Aging, the state department of mental health, or other agencies, maintains a web page. To find a nearby resource center, call the Area Agency on Aging, the state department of mental health, or ask your loved one's doctor or social worker for a referral.

Another option is to check in with the ARCH National Respite Network and Resource Center. Some of its services are funded by a grant from the U.S. Department of Health and Human Services. For additional information: http://www.archrespite.org/index.htmThe website includes state coalitions, with email and telephone contact information. Services offered to caregivers vary by state, so it's advisable to call or email with questions about your specific needs.

Another source of referral is the National Family Caregivers Association. For additional information: http://www.nfcacares.org.

Some savvy travel marketers offer gift certificates for caregivers. If someone in the family is looking for an ideal gift for your upcoming birthday or other occasion, you might mention this. For instance, the Healing Palms of Kaua'I in Kapaa, Hawaii, offers gift certificates for caregivers. For additional information: http://www.healingpalmskauai.com/.

Simple Strategies

Before seeking out legal resources such as the Family Medical Leave Act, do a bit of research and think about what you can do on your own to ease the burden of balancing caregiving and working. If you feel your schedule is stretched to the limit, get creative about easing your load and reducing your stress. Your motto should become 'Think outside the box." Here are some ways to minimize time away from the job, along with simple ways to reduce stress.

• Ask your loved one's doctor if you can schedule at least some appointments in the evening, if evening hours are available, or on Saturdays. If those hours aren't open, ask for very first appointment of the day, which almost always means less of a delay in getting to see the doctor. Or ask for the last appointment of the day, which might also mean less waiting room time and less of a disruption in your work day.
• This option is controversial, but ask your loved one's doctor (or your own therapist) if a home visit, at least occasionally, is possible.
• Think of alternate means of communication that take up less of your time to supplement the face-to-face conversations during visits and treatments. Some doctors welcome emailed questions and messages. See if your loved one's doctor is set up to do that. If not, ask if he or she has a private email to which you might send questions that arise between visits.
• Instead of playing phone tag to ask questions that come up between visits, ask your doctor if you can leave the questions on a voice mail or email them and if the answers can be left on your voicemail or emailed. Instead of in-person counseling, ask your therapist or other mental health professional if you might do some telephone counseling sessions before or after your regular workday, at least for some sessions and after an initial in-person session.
• Make use of spare minutes by turning to books devoted to caregivers. Check out your local bookstore's selection, ask your loved one's doctor or therapist for suggestions, or go online to http://www.amazon.comor http://www.barnesandnoble.comAmong the titles that may help: "Love, Honor and Value: A Family Caregiver Speaks Out about the Choices and Challenges of Caregiving" by Suzanne Geffen Mintz; "Spiritual Care: A Guide for Caregivers" by Judith Allen Shelly; "The Caregiver's Book: Caring for Another, Caring for Yourself" by James E. Miller.
• Get extra support between in-person support group meetings by asking a fellow participant if you can be e-mail or phone buddies during the week, before or after working hours. Then check in with each other on an as-needed basis to share frustration, tips or small successes.
• At in-person support group meeting, find the person who seems to be coping well and ask if he or she will mentor you.
• Find inspiration online by finding websites that cater to caregivers. Check out http://www.peoplelivingwithcancer.org, the patient information site of the American Society of Clinical Oncology, for tips. Or check out the archives of the telephone education workshops hosted by http://www.cancercare.orgAmong the workshops is one for caregivers.
• Be aware that with the excess stress of caregiving, you may not remember or absorb as much information. See if you can tape record conversations with your loved one's doctor, with his or her permission. Or get into the habit of taking along a notebook to visits to jot down information. You can use the same notebook to jot down questions that arise between visits.

Realize that all caregivers have a need for support, and that all feel overwhelmed and exhausted, at least some of the time. Take advantage of services you find in the community and online that allow you to vent your frustrations, share strategies with others and celebrate your small successes.

SOURCES:
Carolyn Long, licensed clinical social worker, UC San Francisco Cancer Center

Tom Farris, Ph.D., Chief Operating Officer, Claremont Behavioral Services, San Francisco Bay area, California

John Maynard, Chief Executive Officer, Employee Assistance Professionals Association, Arlington, Virginia

Andrea Booth, human resources independent consultant based in both Southern California and New Jersey