Caregivers for the Ill Need Care, Too

Spiritual distress arises when a person finds it difficult to discern meaning, find comfort and draw upon a source of spiritual strength in order to cope more effectively. It speaks to what gives meaning, purpose, and comfort to a person's life.
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"I didn't think it would be this hard."

That's what Camille said to me, the professional, board-certified chaplain on the hospital unit where her mother was a patient.

I've thought of Camille and her mom as the week of October 21 marks the start of Chaplaincy Care Week, which calls attention to the expertise that professionally trained, board-certified chaplains provide to patients and their loved ones -- regardless of religion or beliefs -- in health care institutions and in other settings.

Camille's mother, Natalie, was in her mid-70s. Always an active woman deeply involved in and loved by her family, she had suffered a stroke a few months earlier. Then she became frailer and was diagnosed with early dementia. When it became clear that Natalie was unable to live on her own, Camille and her husband, "empty-nesters" who had the space available, decided she should live with them. She was now in the hospital, because she had an infection that was not responding to antibiotics.

Camille was struggling with the issues that family caregivers often face. Her once-strong and independent mother had changed. The load of providing for her daily -- and often moment-by-moment needs had increased.

"I am just so tired."

Caregivers like Camille are a growing group. A study released earlier this year from the Pew Research Center and the California HealthCare Foundation found that nearly 39 percent of adults performed caregiving tasks in 2012, close to a one-third increase from just two years before. And with this rise, comes added physical and emotional distress: caregivers tend to pay less attention to their own physical needs and may suffer from extreme sadness, loneliness and even depression.

Camille told me she had all the information she needed from doctors, social workers and others who were taking care of her mother, but she admitted that information was overwhelming to her. The suggestions of finding a local support group and going through a list of online resources, she said, only added to her feelings of stress.

"I can't put her in a nursing home -- she's my mother."

Camille was facing the hardest of decisions any caregiver can make. She was wrestling with the desire to have more time with her husband and engage in the mid-life they had imagined for themselves while having those hopes and dreams interrupted by the physical needs of her mother. Camille's sense of responsibility and guilt were colliding: how could she make choices for her mother that, whatever they were, would affect her own life.

"I just can't find any meaning in all of this."

I've encountered thousands of people like Camille, struggling with the stressors of caregiving. Her comments and questions were ones of not only emotional anguish, but also spiritual distress.

Spiritual distress arises when a person finds it difficult to discern meaning, find comfort and draw upon a source of spiritual strength in order to cope more effectively. Spirituality isn't always religious, although it can be. It speaks to what gives meaning, purpose, and comfort to a person's life. When those things are compromised -- as they were in the midst of Camille's feelings of exhaustion and being overwhelmed by the tasks, information, physical and emotional demands of her mother's care -- spiritual distress and struggle can be especially challenging.

In my initial conversation with Camille, the most important intervention to her spiritual distress was simply to listen -- to allow her to share her emotions freely without judgment or advice. Caregivers need, above all else, to find a safe person with whom they can talk.

It is also important for family caregivers to find ways to renew, to reach into those places of one's own spirituality to find the things that bring strength, comfort and renewal. Camille was a person of faith, and although she had not been able to attend religious services because of the demands of her mother's illness, we talked about ways in which she could utilize her religious resources: prayer, a few moments of quiet time found in each day to sit alone to relax her mind, and asking her faith community for support and visits. For other caregivers, renewal might be found by engaging in gardening, reading a book, or making time for exercise.

As Natalie's hospitalization progressed, Camille was more able to be open with the members of her mother's care team about her concerns and emotions when she and her husband met with them for care conferences. In the end, she made decisions about her mother's care that she felt comfortable with. And for herself and her husband, we were able to identify a spiritual plan of care to address her spiritual distress and engage their resources beyond her mother's hospitalization.

Professional chaplains, like my colleagues at HealthCare Chaplaincy Network in New York and thousands of chaplains throughout the U.S., provide support to patients and families struggling to cope with acute or chronic health conditions. We're trained to work with persons of regardless of religion or beliefs, working in partnership with physicians, nurses, social workers and others.

If you are a caregiver like Camille, spiritual distress may also be one of the many emotions that are engulfing you. If so, reach out to a chaplain in the health care setting where your loved one is being treated or has been treated. Also, respite care may be available; talk to a social worker or your loved one's physician.

As you take care of a loved one, please take care of yourself, too.

Rev. Sue Wintz is a board certified health care chaplain with over 30 years of clinical, administrative, educational design, development and teaching experience. She is a consultant for chaplaincy care leadership and practice at HealthCare Chaplaincy Network in New York, and managing editor of the online professional journal PlainViews. Sue is a past president of the Association of Professional Chaplains.

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For more by The Rev. Sue Wintz, click here.

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