The New Testament commands Christ’s followers to “bear one another’s burdens.” But applying that principle to caregivers — people who shoulder the around-the-clock responsibility for meeting the needs of someone who cannot live independently because of advanced age, illness or disability — can be challenging.
“I think it is a two-way street when it comes to alleviating some of the burdens caregivers bear,” said David Rockett, minister of senior adults and congregational care at First Baptist Church in Covington, La.
“The caregiver must recognize their need for help and willingly accept assistance and help the one being cared for to understand that some relief will, in the long run, help the caregiver be a better giver of care. Churches and Sunday school classes must be educated to this need and respond with action and commitment.”
Caregivers must recognize their need for help and willingly accept assistance, say observers.
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Caregiving may involve short-term care for an ill or injured relative or long-term care for an older person in declining health, a person with a chronic malady or a disabled person of any age.
Caregiving for a person with a terminal illness differs in some respects from caregiving for a person with long-term disability or chronic condition, said Randall Maurer, professor of psychology and family ministry at Hardin-Simmons University’s Logsdon School of Theology in Abilene, Texas.
In the case of a person with a disease that almost certainly will bring about death, the caregiver “anticipates the loss, but also faces an impending sense of release and relief, which may produce guilt,” he said.
The caregiver for a person with a long-term disability, on the other hand, may think, “My life will never be my own,” he added. That can lead to feelings of isolation and even depression.
Under any circumstances, caregiving creates stress for families, accentuating and magnifying previously existing strengths and weaknesses in the family, Maurer observed.
“Anytime there is a crisis in a family, to understand what is going on at that moment, you have to understand the family relationships that have developed over time and the history of the family. The crisis just brings out a lot of what has been swept under the carpet before,” he explained.
Inevitable role
Almost inevitably, one individual in the family emerges as the point person for caregiving.
“Often, one person is designated as the primary caregiver, and the family as a group allows it to happen,” he said. “That person may be the adult child who lives closest to a parent who needs care, or the caregiver may be a spouse who naturally wants to assume that responsibility.”
That role can create resentment if the caregiver believes other family members fail to shoulder their share of responsibility, and it also may create a set of expectations for the caregiver by others in the family.
“If anything goes wrong, families can react negatively and blame the caregiver,” Maurer noted.
Families face additional stress from dealing with the entry of medical professionals into their lives. Some struggle with “having to make space” in their family structure for professionals, whether a visiting nurse, a physical therapist or attending physician; other family members disengage and relinquish responsibility when a health care professional enters, he observed.
Caregivers of all kinds carry heavy burdens, but those who care for dementia patients face the added stress of providing for a person whose personality and behavior they no longer recognize, said social worker Emily Booth, who has been involved more than a year with a dementia caregiver support group that meets at First Baptist Church in Goose Creek, S.C.
“People with Alzheimer’s and other forms of dementia not only become forgetful, but also may wander and sometimes can become combative. It’s stressful for the caregiver who has known a person to be one way their whole life, and now there is this change,” Booth said.
Danger of neglect and abuse
The feeling that the person with dementia has become a stranger can, in some extreme cases, even lead to neglect and abuse, Maurer noted.
“The caregiver may come to a point of thinking: ‘Why am I devoting my life to care for a stranger? I’m giving my life to a person I don’t recognize and who doesn’t recognize me,’” he said.
A spouse who cares for a mate with Alzheimer’s or a similar condition may feel intense isolation — not only cut off from the person with whom they fell in love, but also from other family members who may no longer want to be around an individual with dementia, Booth said.
“Some caregivers have no support from other family who are not coping appropriately with the situation,” she said. “Maybe they don’t want to see a loved one in a different state. They want to remember the person they knew back in fun times and hold onto those good memories.”
The person who feels ongoing responsibility for providing care may feel resentment toward other family members who distance themselves from an unpleasant situation, she added.
“Families are families, and they are going to function in certain ways. It’s sad, but I see a lot of family discord,” Booth said.
Suggested actions
Pastoral care providers note several actions churches can take to help caregivers:
• Give them a break. Provide short-term respite care. Offering to sit with an ill or disabled person while the caregiver goes shopping, enjoys some personal time or attends worship services.
“A couple of our classes [at First Baptist in Covington, La.] in the past scheduled members to sit with loved ones on Sunday mornings and allow the caregiver to come to church,” Rockett noted.
• Help with housework. If a family is comfortable allowing someone from the church to enter their home, offer to do housecleaning or laundry. Meals may be welcomed and appreciated, but be aware of dietary restrictions, and don’t provide so much food that it becomes overwhelming.
• Educate. “One way we have tried to help our caregivers is by providing information about resources both here in the church and in our community that caregivers might find useful,” said Mark Seanor, senior adult minister at First Baptist Church in Birmingham, Ala.
Recently, the church held a conference on spiritual care for caregivers led by Edith Fraser, chair and professor of the social work, psychology and counseling department at Alabama A&M Univer-sity.
New Birth Baptist Church in south Dallas likewise seeks to help connect people in need to community agencies and other resources, working with groups such as the Senior Source and the Dallas Area Agency on Aging. In one five-year period, the church provided workshops and other ministries that touched 2,800 people, said Arthur Melton, coordinator of the church’s caregiver support group.
• Listen. “Be careful not to theologize too much,” Maurer said. “Just provide a listening ear to a caregiver. Provide encouragement by your presence.”
• Be sensitive. “Support is wonderful, but well-meaning people need to know the limits” and not become intrusive, Booth said. “Be respectful of the caregiver and the family.”
Ken Camp ([email protected]) is managing editor of the Baptist Standard.
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