CAREGIVING AT HOME

Most of us see our homes as a refuge from the stresses of the outside world. When your spouse or another family member has cancer, your entire family life changes. You soon learn, as primary caregiver, that many factors are not under your control. Middle of the night emergency visits to the hospital or daily trips for radiation or chemotherapy treatments can wreak havoc on your home and work schedules. In addition, your kids still need to see the dentist, still get sick occasionally, and still want to (and should) participate in school and sports activities.

How can you manage the jobs of caregiving, parenting and working without experiencing burnout? Experts agree that the primary caregiver, to be effective, must learn to function as a team member. And yet, the necessity to ask for and accept help can put women in a bind, especially those who take pride in their independence, notes oncology social worker and Director of Clinical Services for CancerCare, Les Gallo-Silver.

"Reaching out for help is probably the hardest thing that anyone does," says Dr. Gallo-Silver. "We don't come from a culture that sees [asking for help] as a norm - we come from a culture that is very autonomous, very individually-driven. For a lot of people, taking care of a person with cancer presents them with the need to ask for help, even though it's not comfortable."

Dr. Gallo-Silver and his colleagues at CancerCare, Inc. (a support organization for those with cancer and their caregivers) encourage their clients to re-frame their notions of independence versus dependence. "Interdependence - where people do function independently, but they also function as a group - is actually the model for an effective family unit," he says. In this section, you'll learn how asking for and accepting support - from both within and outside the family - can make a difference in your ability to more effectively manage your caregiving tasks.

Managing Transportation Issues

Your spouse's needs for care and transportation will fluctuate depending upon the seriousness of his illness and the stage of treatment. During remission (when the cancer recedes or is stable) your spouse may be able to resume normal activities and take charge of treatment logistics. Cheryl, 47, recalls that her husband, during earlier stages of treatment for his melanoma, was able to drive himself to the cancer center four hours from their home. In fact, he appreciated the chance for reflection that the long drive afforded him. As his condition worsened and his treatments intensified, Cheryl needed to accompany him. She was fortunate enough to have flexibility and use of extra leave days through her coworkers' contributions under the catastrophic leave program. Extended trips, however, caused tremendous anxiety for her over lost income and separation from her children. Occasionally, a close family friend who had business in Los Angeles was able to take her husband to the city for immunotherapy, which had to be administered in the hospital.

Other treatments, such as radiation administered five days a week for six weeks, can create a logistical nightmare for those who cannot miss work time. Help with transportation may be available through your local chapter of the American Cancer Society, or through church or community groups who have volunteer drivers. Some cancer centers offer accommodations for family members during major surgery and treatments (see 'Caregiving at the Hospital').

If you are supervising care for an aging parent in another city or state, Dr. Gallo-Silver advises making at least one "non-emergency" visit so that you can introduce yourself to your parent's care providers. You or your parent might have the funds to use the services of a geriatric care manager. These fee-for-service professionals are conversant with the clinical and logistical issues of care delivery for the elderly. They may be private practitioners or employed through a larger agency. The National Association of Professional Geriatric Care Managers (www.caremanager.org) offers a referral service to find a care manager in your area.

Families as Nurses

Today many cancer treatments take place in the outpatient setting. Nursing care increasingly falls to spouses and family members, observes Shelley Ludwick, RN, Director of Clinical Programs/Network Development for the Visiting Nurses Associations of America. Twenty years ago, she recalls, certain procedures, such as placement of a central line (a line inserted for continuous access to a central vein for administering fluids and medicines) were done "only within the walls of the facility or hospital. Patients are now sent home with central lines, and all types of infusions - things that you would never teach people 20 years ago," she says.

Usually, the caregiver will be given instructions about operating medical equipment or changing surgical dressings using sterile technique. The trouble is, notes Ms. Ludwick, "you don't learn a complex process [such as administering medication through an intravenous line] the first time, especially when you are stressed. Hospitals are expecting families to learn in a very stressful situation, and then to carry through once they go home."

Even with generous home health provisions included in insurance coverage, visits from home health nurses or home health aides tend to be brief and not as frequent as some would like. Ms. Ludwick herself witnessed a gap in instructional support when a friend with cancer was released from the hospital with a feeding tube. Due to miscommunication between the nutritional supply company and the home health agency, the nurses had no idea that the wife had only received one lesson on how to do the feeding.

To increase your comfort level to take over nursing care, take thorough notes whenever nurses or other medical or personal care personnel demonstrate a procedure. Make sure you have a list of all necessary supplies, and find out if they will be delivered or must be picked up. During home health visits, ask that the nurse teach the procedures for administering medication or nutrition to the entire family. Cheryl's teenage daughter learned to program the computer that delivered intravenous medication, and her son learned how to help his dad to the bathroom. Many times, home health agencies also provide illustrated instructions or videos. The nurse usually brings a treatment plan that details what treatments your husband will need, and at what time of day. She will leave a chart with the family, so that you can notate times the feedings or medications were given, and whether you noticed any side effects or breakthrough pain. And do not hesitate to call the agency's 24-hour on-call line, where you will be able to talk to a nurse about problems you are having.

Experts also advise caregivers and families to familiarize themselves with hospice services in their community. If covered through your insurance, hospice may offer multiple services, such as nursing, home health aides, homemaker benefits, nutritional consulting, social work and other volunteer and spiritual support services. The average person with terminal cancer is supported through hospice less than three weeks. "I suggest strongly to people with this diagnosis that they have hospice in earlier rather than later. It is such a support to the patient and the family," says Ms. Ludwick. Hospice services may be delivered in your home or in a hospital or stand-alone location. It is important that you and your spouse discuss preferences so that you can honor these if the time comes for end of life care.

Help with the Household

Time spent on nursing or supportive care is time you will not have for your normal household duties. Your goal in accepting help is to free yourself from some tasks so that you have more time to care for your spouse, yourself and your family - and to spend quality time together. Perhaps the best way to handle the myriad home maintenance chores is to delegate different jobs.

"Your friends want to help. Let them," advises Cheryl, who was the sole breadwinner and primary caregiver during her husband's battle with cancer. During the later stages of her husband's cancer treatments, Cheryl realized a huge time savings when a friend organized a group of people who each volunteered to cook and deliver a meal a different night of the week. Melinda, 50, said a neighbor offered to accompany her to the hospital when her husband required surgery. She didn't feel comfortable with this offer, but when he conveyed his sincerity about helping, she suggested that he might want to water the lawn every few days. Seeing green and not brown grass when she came home each evening boosted her morale.

Cheryl had a similar experience. Her husband Ray had always kept the front yard immaculate. Seeing the yard getting messy "wasn't a nice greeting when I came home," and was a further reminder that "this house is not normal right now. So the neighbors chipped in and did that [yard work]. The girl across the street, when she noticed that something was dead in the flower pot on the front step, would just go put a new flower in the pot. Things like that are a huge uplift to the care provider."

Downsides of Help

Accepting help from family and friends is often vital for the family's survival, caregivers report. However, there can be disadvantages to incorporating others into your caregiving team. Some people may begin to expect regular updates on treatments and surgeries - delivered personally by you. "As a caregiver, you learn to hate the phone," Cheryl explained. If caregivers are not careful, she warned, they can get "stuck on the phone, telling the story over and over and over." She recalled one particularly difficult period when a scheduled overnight visit to a Los Angeles cancer center turned into a 13-day long hospitalization. Cheryl returned home not only exhausted from the trip, but worried about lost work time. And there was another pressure: an answering machine overflowing with messages from concerned family and friends, all wanting to know what had happened.

You are already caring for your family, your spouse and yourself. It is important to find a balance between your needs for privacy and support from others. Curbing the intrusiveness of the telephone can help preserve quality family time - and your sanity! Here are a few tips:

• Give your cell phone numbers only to key people: medical personnel, immediate family and best friends.
• Unplug the home phone during meals and family together times.
• Record a new outgoing message every few days on your phone, informing callers that you appreciate their concern, that your husband is stable or doing well, and that you're currently enjoying some 'together time.'
• Ask a trusted friend to set up a phone tree using your home phone book. This will allow you to make one or two phone calls instead of 20, thus delegating the job of keeping others posted on your spouse's progress.
• Visit The Patient/Partner Project website (www.thepatientpartnerproject.org), which offers a free service that enables you to post new updates and create your own private list of family and friends who can log on using an assigned ID number.

Keep It Flexible

Every family configuration is different. Some feel comfortable having their teenagers participate in the nursing care, and report that their children grew stronger from the experience. Cheryl's son and daughter learned how to change a sterile dressing, take notes during the nurses' home visits, and to track their father's food intake during the day while she was at work.

It is especially important, report caregivers, that you build in time for yourself and flexibility into your family life. Melinda learned to simplify tasks at home and to avoid making advance plans. "If you pre-organize too much, that can sometimes lead to another disappointment. You often have to cancel invitations because of a health emergency. Then you just feel more anxious." Instead, she and her husband and daughter learned to have a more spontaneous social life, fitting in fun on "good days."

Caregivers must also learn to cultivate asking for help. "Sometimes people think they have to be more independent, and they're afraid to ask," says Ms. Ludwick. "Sometimes it's worth that call to say, 'Listen, I'm really having a hard time here and I need some answers. And sometimes, the support is where you don't even see it. Your own parents, or your neighbors, your teenage children or your siblings - if they just knew you were struggling, they would be more than willing to provide some support."