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Caregivers of chronically ill persons face many and various challenges, and unless they have a supportive community around them they often have difficulty with self-care as well. The author, a caregiver herself, suggests ways that faith communities can provide such support.
I am a caregiver. One summer afternoon in the middle of a drought when my flowers needed water, it was a major effort to turn on the water and move the hose. It was not a strenuous task, but it was difficult because it meant that one more thing was in need of my care. I wanted to say, "Sorry, flowers, you will just have to depend on the water God gives you." I did turn on the water, while my husband watched from his wheelchair.
I saw many other things that needed my attention, and I wished for helpers who would magically show up and in an hour do what it takes me all day to do in between the duties I have as a caregiver.
How often we hear, "It takes a whole village!" This article discusses how pastoral leadership and congregations can be part of the village that helps caregivers.
Duties of Caring
The need for care is increasing in our country. The fastest-growing age group is those over 85. Many diseases or injuries once considered fatal have now become chronic because of advances in medical treatments. Nearly 80 percent of long-term care in our country is done by family and friends.1 People who need help with personal care also require supportive care that is essential for living at home: cooking, cleaning, shopping, maintenance, and more. As my husband deteriorated, I not only helped him physically, I also needed to learn to arrange for our automotive maintenance. I worked hard to maintain his morale by assuring him that he was still valuable and loved, even when he could not support the family. My role changed as I found myself doing things I never expected to do.f
Caregiving is very isolating. The well spouse loses the intimate partnership of marriage and is well described as being "a widow with a husband." Martha expressed isolation and being overwhelmed: Lord, do you not care that my sister has left me to do all the work by myself? (Luke 10:40a).
Congregations can reduce caregiver burden by helping with supportive care and maintaining morale.
Economic Value
Do not be afraid; you are of more value than many sparrows (Luke 12:7/Matthew 10:31). The work that the 50 million caregivers do without pay had an estimated value of $306 billion in 2004. By contrast, our nation spent $158 billion on home care and nursing home services combined, and the Medicare budget was less than $260 billion. While providing unpaid services, many caregivers reduce their hours at work or retire early " and individually average a lifetime income loss of more than $500,000.
Challenges and Resilience
No one has greater love than this, to lay down one's life for one's friend (John 15:13). Caregiving can be rewarding, but it also is exhausting and demanding. Even when I am sick or have a headache, my husband still needs my care. My risk for depression is six times greater than the general population's. The Journal of the American Medical Association reported that caregivers die at a 63 percent higher rate than their non-caregiving peers.
Caring for someone during an acute or terminal illness is demanding and tiring, but it has a foreseeable end. When the caregiving becomes chronic, it becomes like a heavily trafficked carpet: the surface becomes worn and the padding doesn't spring back.
The ability to spring back is called resilience. Resilience factors for caregivers are like the coins the Good Samaritan gave the innkeeper when he said, Take care of him (Luke 10:35). Pastors and congregations can contribute to the well-being of the caregiver by nurturing resilience.
Self-care
An angel touched him and said to him, "Get up and eat." (1 Kings 19:5). Self-care is a primary resilience factor, like the oxygen mask in an airplane. When nurses talk about holistic care, they mean that the spirit needs to be included. When rostered leaders think holistically, they need to remember that the person has a body! Caring for the body helps prevent burnout. I need enough sleep, physical activity, and a well-balanced diet in order to have the energy to provide care. As a nurse I know this, but I may need to be reminded.
I also need diversions, social contacts, and time alone to reflect and pray. Because many of us tend to neglect basic needs, church leadership can be of help by exploring lack of self-care as a symptom of being overwhelmed, not as more tasks to add to an already overfull schedule. A helpful question is "What do you need for this to happen?"
Caring Community
Caring has been described as having five components: knowing, being with, doing for, enabling, and maintaining belief.2 Knowing means understanding in depth what it's like. Being with means being present or available as a good listener and helper. Doing for includes preserving dignity while doing those things that the one in need of help cannot do. Enabling empowers self-care and facilitates transitions through difficult life events. The caring person maintains his or her own belief in the other's capacity to continue, and this helps caregivers to find meaning that sustains what they are doing.
Last Christmas, everyone I knew was getting a present from her husband. I wanted one, too. I bought one for myself. It wasn't very expensive: a necklace on sale for under $20. I knew that he would give me a present if he could. I asked our home health aide to show it to him. They wrapped it together. He was so proud when I opened it. I told him how much I liked it. Every time I wear that necklace, he tells me how glad he is that he was able to get it for me.
I cared. I knew he wanted to give me a present. I listened, not with my ears but with my heart. I did for him what he could not do: I found someone to help him make it a present to me. And I did not challenge him when he said he was so glad he could get it for me.
Living Water
Pastors and congregations can be a caring community. Volunteers within congregations can help with supportive tasks, reduce isolation, and maintain the morale of a caregiver.3 A social ministry committee, a care team, or other group can brainstorm ideas for specific local issues. Pastors can make sure there are healing services, with encouraging sermons that discuss what healing can mean. The Sunday school children at our church make cards, and volunteers deliver them for various holidays. Our church raised funds to help us pay for our first wheelchair van. Stephen Ministers or Befrienders can be instituted in the congregation.
Inquire not only "How is the person being cared for doing?" but also "How are you, the caregiver, doing?" When asking, be prepared to listen. Asking a caregiver what kind of help would be useful will result in practical suggestions. A short list:
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- Provide an occasional meal.
- Offer spring and fall yard care.
- Wash and wax the car.
- Go for a walk with the caregiver, for both exercise and fellowship.
- If possible, take the ill person out for a walk, a ride, or a stroll in the wheelchair to give the caregiver some time alone in the house.
Spiritual Resources
Caregiving is emotionally and spiritually challenging. It is painful to watch someone you love gradually or suddenly lose abilities that once gave meaning and joy to life. Many caregivers would like to discuss difficult issues, to get a theological understanding of what they are doing. Our utilitarian culture does not support loving a person who needs help. Pastoral leadership needs to be available, approachable, and able to ask, "What is it like for you?" and then listen attentively. Pastoral care includes praying for the caregiver as part of the conversation.
Prayer for caregivers
Direct us, O Lord God, in all our doings with your continual help, that in all our works, begun, continued, and ended in you, we may glorify your holy name; and finally by your mercy, bring us to everlasting life, through Jesus Christ, our Savior and Lord.
(ELW, Lectionary 23C, p. 47) |
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The universal question "Why?" may be asked in many and various ways " by the person cared for and by the caregiver. Why is there suffering? Why are prayers for healing not answered?
Stating that there are no answers comes across as despair and says faith has no answer. That is not true. Our faith gives hope for the future, reminds us that this life is temporary, and helps us live with mystery. The crucifixion and resurrection of Jesus proclaim that God can conquer the worst the world can present. Individual sin, others' sin, randomness, activity of the devil, and how God can be glorified are all topics that can open a rich discussion of the "Why?" question.
Finding Meaning and Purpose
How could we sing the Lord's song in a foreign land? (Psalm 137:4). I have heard caregivers say they feel like slaves or captives in their own home because they cannot leave the one who needs care. This brings to mind the images of slavery in Egypt and captivity in Babylon. When the caring is long and the prognosis unknown, it feels much like wandering in the wilderness.
I consider that the sufferings of this present time are not worth comparing with the glory about to be revealed to us (Romans 8:18). The persecution and suffering of so many of God's chosen ones throughout history reminds us that prosperity and pleasure are not necessarily signs of God's approval.
As you did it to one of the least of these, you did it to me (Matthew 25:40) tells us we are doing God's will, and not being punished, when we are called to care. God knows, God understands, and we are not alone.
Because of my husband's significant cognitive decline, meaningful conversations are rare but treasured. I sometimes ask if he is suffering. He always answers, "No." When I ask why, he always responds, "Because you take care of me."
I have no idea if I will be caring for him for two more years or twenty. One of my fears is that I may be among the caregivers who becomes depressed or seriously ill and thus not able to continue to care for him at home.
The gospel truly does give ongoing spiritual strength. Theological reflection on the passages mentioned here and many more, plus the support of pastors, family, and friends throughout the years provide the resilience to continue.4
We have heard that it takes a whole village to raise a child. It also takes a whole village to care for someone who is chronically ill or disabled. The church is in an ideal position to play a major role in the caring village. Bear one another's burdens and in this way you will fulfill the law of Christ (Galatians 6:2).
| Endnotes |
- The statistics cited throughout this article can be found at the Web site for the National Family Caregivers Association.
- A fuller discussion of Kristen Swanson'fs framework of caring can be found at the Web site for Creative Health Care Management.
- A helpful resource for caregiving spouses is the Well Spouse™ Association.
- A full study of resiliency can be found in Spiritual Resiliency in Older Women: Models of Strength for Challenges through the Life Span by J. L. Ramsey and R. Bliesner (Thousand Oaks, CA: Sage, 1999).
Rebecca Otterness, RNC, MS is a wife, nurse, and caregiver for her husband-an ELCA pastor and a WSA member. They live in St. Peter, Minnesota. Visit ELCA.org.
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