The 2015 report Caregiving in the U.S., documents 43.5 million unpaid family member caregivers in the U.S. Thirty eight percent of those report high emotional stress from the demands of caregiving. Those statistics don’t lie, but they don’t tell the stories of real people’s lives. Here are some touching examples of challenges of family caregivers in Galveston County.

A wife in her 80s reports that after her husband’s extended hospitalization and lengthy rehab, he was unable to walk, at risk of falls, with occasional incontinence, and vascular dementia. “I had to accept his losses; they have also been mine,” she says. “I have to accept the fact that I cannot care for him alone, that I must allow a stranger into my home to help me.”

“Our roles have been reversed. Now he depends on me. His dependence is sometimes hard to bear.”
“Sometimes I feel trapped. I’m irritable and impatient.” Expressing the isolation that besets caregivers, she concludes, “Alone at night, I grieve.”

Not all caregivers are spouses. Another caregiver of a nonagenarian mother thrives on the joy of mothering, grandparenting, and caring for great grandchildren. Serving as primary caregiver for her progressively more demented mother creates stress and complex feelings. Mother, 98, has good moments and not so good. Dedicated, caregiver daughter experiences frustration, guilt, and deep sorrow.

After a Sunday visit, Mom returns to her assisted living facility agitated, “You don’t listen to me.” After a day of being an attentive, caring daughter, she replies, “Mother, that’s not fair.” Mom launches into a fantasy of unknown people visible only to her.

“Open your eyes, Mom. There are no people.”

“I see them right here! You don’t listen to me. They are right here.”

The daughter faces a common dilemma: filled with guilt at losing her patience, filled with terror about her mother’s dying, and overwhelmed with grief at the demons of dementia. Where does she turn?

“We’re especially concerned that not enough is being done to support family caregivers in the public or private sector as they age,” explained Gail Gibson Hunt, of the National Alliance for Caregiving.

Three health care professionals in Galveston have teamed up to create a supportive service for family caregivers. Amy Barrera-Kovach, UTMB Family Medicine Social Worker, Deborah Goolishian, consultant in UTMB’s Employee Assistance Program, and Alice Williams, Executive Director, Libbie’s Place, understand the needs of caregivers. They created The Caregiver Connection for ongoing educational and emotional support for caregivers of adult family members with dementia or special needs. They welcome every caregiver in the county to attend monthly meetings to connect with others like themselves, get in touch with feelings and address those inevitable changing roles and relationships. The group meetings will also emphasize the importance of the caregivers attending to their own needs. The sessions will provide practical coping strategies and access to readily available community resources.

Dr. Victor S. Sierpina is the WD and Laura Nell Nicholson Family Professor of Integrative Medicine and Professor of Family Medicine at UTMB. Dr. Sierpina’s wife Michelle helped contribute to this column.