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Community education programs, training needed for legions of Americans
Caring for a dying or chronically ill loved one at home is a labor of love that goes largely unnoticed by the rest of society. Caregivers sacrifice careers, time with other family members, and even their own identities to fulfill a promise of unconditional love. Yet despite their heroism, the rest of the world not only fails to recognize their efforts but has also abandoned them.
"Caregiving is a hidden activity in America," says Suzanne Mintz, president and co-founder of the National Family Caregivers Association in Kensington, MD. "All people see are media images of thin, healthy people, and they don’t want to see people who are ill and need help."
An estimated 25 million people, mostly women, are caregivers. They care for their frail, elderly parents and for chronically ill spouses. Eventually, many of these caregivers continue on as the custodians of their loved ones as they go through the dying process. And for the few who choose hospice, it isn’t until then that caregivers are paid the attention they deserve.
The real number of caregivers is closer to 50 million, according to the National Family Caregivers Association. The association surveyed more than 1,000 people last year and discovered that more than 26% had taken on caregiver responsibilities in the previous 12 months.
Whatever the number, Mintz believes hospices should play a larger role in providing caregivers with the help they need when they need it most: before the patient is admitted to hospice.
"Let’s face it, by the time the patient is admitted to hospice, they have just a few weeks — sometimes a few days — before the patient dies," says Mintz. "That’s too little time to be of any help to the caregiver."
Mintz says hospices can help caregivers through bouts of low self-esteem and isolation and can provide programs to educate them on the daily routine of caregiving. Most importantly, hospices can help educate caregivers on the medical needs of the patient so caregivers can not only perform the daily duties of caring for a loved one but can also act as an advocate for the patient. For example, hospices can use this opportunity to help caregivers and patients establish an advance directive, a power of attorney, or a living will so caregivers can make sure their loved one’s wishes are followed.
Even before caregivers receive care from hospice workers, they are burdened by a myriad of factors, including:
• Physical stress. The host of responsibilities that go along with caring for a loved one can take a physical toll. General homemaking and housekeeping activities such as cleaning, laundry, shopping, and meal preparation require energy and can be tiring, particularly when added to existing responsibilities in one’s own home.
In addition, personal care required for the supervision of medications and the maintenance of hygiene also can be stressful, particularly in situations of acting-out behaviors, incontinence (loss of bladder or bowel control), colostomies, or assistance with bathing. Lifting and transferring individuals with limited mobility is not only tiring but also can result in injury to the caregiver or the impaired person. In some instances, there is the additional responsibility of maintenance of equipment such as wheelchairs or hospital beds.
• Financial stress. When money is limited, many families assist with the cost of care, causing financial burdens on all family members. Often, the sick person was the sole provider or contributed largely to the household’s income. The lost income causes financial uncertainty on top of other stressors.
• Environmental stress. For people who choose to care for their loved ones at home, their home environment can cause undue stress because homes are ill-equipped as health care facilities. If the patient elects to remain in his or her own home, modifications such as railings and ramps may have to be installed. If the patient cannot remain in his or her own home, alternative arrangements must be sought, such as moving in with a friend or relative or specialized housing (retirement hotels, senior apartments, residential care homes, intermediate care facilities, or nursing homes).
• Social stress. Caregivers who provide personal care 24 hours a day can experience social stress through isolation. Caregivers may find themselves too tired or unable to have personal time with family and friends. What can result is a build-up of anger and resentment toward the person receiving the care.
• Emotional stress. All of the above factors often result in tremendous emotional stress. Compounding these sources of stress are the difficulties in managing one’s time, juggling multiple responsibilities, and feeling the pressure of the patient’s increased dependency.
The Hospice of the Florida Suncoast in Largo, FL, provides a number of caregiver outreach programs based on the assumption that caregivers are in need of help before they become eligible for hospice care.
Among them is a series of evening classes aimed at providing education on the mechanics of caregiving, such as how to lift patients out of bed; patients’ physical and emotional needs; living wills and durable power of attorney; and community support programs.
Still, it’s difficult to get people to attend such classes, says Becky McDonald, RN, vice president of programs for the Hospice of the Florida Suncoast. "People come and go so rapidly, taking care of their loved ones," says McDonald. "They don’t take any time away from the person they are caring for."
For that reason, McDonald says, programs that work on a one-on-one basis with caregivers work best. In addition to its community service classes, the hospice also has developed a palliative care program using a sliding-scale fee-for-service model to cover the cost of care.
The Suncoast Palliative Care program features a nurse practitioner case manager and an interdisciplinary team that provide care to patients who have shown a functional decline and whose physicians have diagnosed them with no more than two years to live. Aside from the care given to patients, the program also focuses on the caregiver by providing respite care and education.
Hope Hospice and Palliative Care in Fort Myers, FL, offers a number of programs, as well. "Our hospice is looking at how to get to caregivers sooner," says Samira Beckwith, CHE, ASW, president of Hope Hospice and Palliative Care. "One of the essential core services of hospice is caring for the caregiver."
Hope Hospice’s caregiver services include:
• inpatient and outpatient respite care;
• extending alternative therapies (such as massage, music, and art) to the caregivers;
• community caregiver training classes;
• caregiver support groups;
• a volunteer respite program.
Mintz says caregiver support groups are particularly important. In addition to offering useful information, such groups provide a unique forum for caregivers to come together and share their feelings in a supportive environment. Group therapy helps caregivers feel less isolated and can create strong bonds of mutual help and friendship.
Participating in a support group can help caregivers manage stress, exchange experiences, and improve skills as a caregiver. Sharing coping strategies in a group setting lets caregivers help others while helping themselves. It may also help caregivers to realize that some problems have no solutions and that sometimes simply accepting the situation is the best thing to do.
Emotional isolation is often coupled with physical isolation that prevents caregivers from learning about community services. Hospice must provide information about community resources that might be helpful. Caregivers will likely seek assistance from in-home services or adult day care; homemaker services to help with cooking and cleaning; or an aide to help the patient bathe, eat, dress, use the bathroom, or get around the house.
Of course, the burden of fulfilling these tasks requires an escape from time to time. Respite care can help caregivers get away for a short time or accomplish tasks that have been put off in lieu of more important matters.
Hospices do not have to be the sole providers of respite care. Hospitals, nursing homes, and residential care facilities could offer families the opportunity to place older relatives in their facilities for short stays.
Aside from practical help, hospices can provide the skills and advice to help caregivers cope with the challenges that lay ahead of them, says Mintz. For instance, caregivers need to know how to set realistic goals, as well as how to seek help when they can’t reach those goals. Teach caregivers to recognize their limitations and define their priorities. For example, help them prepare a list of tasks — running errands, meal preparation, taking the patient for a walk, taking children to and from school — and a list of family, friends, and community services that can assist in completing these tasks.
Caregivers also need help communicating their needs to family, friends, and the loved one they are caring for, says Beckwith. Often, family dynamics that existed prior to an illness can hamper communication, or the illness may have reduced contact with the caregiver. Turning to family members or friends for emotional support and help can be a mixed blessing. Visits from these people may cause the caregiver to feel less alone and more able to deal with caregiving responsibilities. On the other hand, relatives or friends can be critical of the way the caregiver is providing care. Caregivers need to be made aware that these family members are responding to what they see at that time and are lacking the benefit of experiencing the whole picture and any gradual changes in the patient’s condition. Harsh criticism may be a response to their own guilt about not participating more in the care process.
Another key factor in a caregiver’s ability to cope is the caregiver’s ability to maintain his or her health. Hospice caregiver training should stress the following:
• eating three balanced meals daily;
• exercising daily;
• getting enough sleep/rest;
• allowing sufficient leisure time.
All this education and training must be given long before a patient becomes eligible for hospice care, says Mintz. Even if a patient lasts two months in hospice care after battling a chronic illness, such as Alzheimer’s disease, the benefit of caregiver education is muted.
"Former caregivers have already gone through the challenges that a hospice is addressing," says Mintz. "They are likely to say: I’ve spent so much time going through all this, what do I do with all this information now?’"