1 in 5 North Carolina Adults are Caregivers: Addressing Unpaid Family Caregiver Burden with Supportive Services

Medical advances paired with expanding home care technology and shorter hospital stays have placed increased responsibilities on family and friends. Yet, most caregivers report they are ill-prepared for their role. There are services and supports specifically designed to assist family caregivers. Three days stand out from the last 10 years of working with family caregivers in North Carolina. They each began with a phone call. One came at the start of a Monday, one as I was readying to leave for the day, and the third somewhere in the middle. All of them were memorable for their raw desperation, their honesty, and the glimpse they provided into Carolina families and the lives made fragile by caregiving.

The Monday morning call was from someone at a regional organization who had hired a local home care agency to provide overnight weekend respite care to relatives of an older woman. The family was supposed to return Monday morning to relieve the home care worker, but the agreed-upon time came and went. A few phone calls by the home care agency revealed that the family had decided not to come back, ever. They shared that they had done all they could for their grandmother and that it was time for someone else to take care of her.

The end-of-day call was from a woman who was very careful not to give any hints of identity or location. She asked me what would happen if we got a call from a payphone telling us that there was a man home alone in serious need of care. Would someone be sent to take care of him? Would he be okay? I could hear need in her voice and I tried to get more information so we could reach out with possible help, but she would not share. Things she said led me to believe she was the caregiver for her husband, and at the very end of her strength to continue in that role.

The last call was from a woman in her 30s. She had a disabling condition and was no longer able to bathe herself. Her caregiver was a male relative and neither of them were comfortable with him bathing her. She had no one else to help, could not afford to hire someone for this, and did not qualify for public assistance. Every service I mentioned, she replied that she had already tried it and been told no. I spent the rest of the afternoon coming up empty as I looked for a solution that would preserve this woman's dignity and independence.