Althea from North Carolina

I am a long distance caregiver for my sister Joyce, who lives in Tennessee. She is a survivor of an aneurysm and colon cancer. She fell in her bathtub in 2012 and was rendered a partial quadriplegic, confined to a wheelchair. We are a large family (seven sisters and two brothers), of whom I am the eldest sibling. We are geographically challenged. Upon discharge from rehabilitation, she left Tennessee to live with our youngest sister in Illinois. In 2013, she returned to Tennessee to live with a sister, closer to her home. As the eldest sibling and a specialist in the fields of Rehabilitation and Gerontology, I was asked to implement a caregiving plan. I traveled 650 miles from North Carolina to Tennessee and remained for two months to complete the plan. The plan allowed her to transition back home with her husband, one year ago. She was able to remain at home with 40 plus hours of assistance each week, from caregivers supplied by a home health agency. I continued to provide caregiving from a distance that included decision making and regular contacts with caregivers, agency personnel and medical professionals, and traveling back to Tennessee several times.

Her medical condition became more challenging in the spring of 2014. Colon cancer returned with a vengeance, diagnosed as stage four. Her husband was unable to provide the proper care for her. She did not share her diagnosis with family for fear of “being a burden” to us. However, in September, family members were made aware of her diagnosis. I traveled back to Tennessee to convene a family meeting to inform our 87 year old father of her condition and need for care, as well as to assist with transitioning her from the hospital to a Nursing Home/Rehabilitation facility to begin Hospice and Palliative Care for end-of-life assistance.

I am truly blessed and grateful for my professional experiences, including a pastor’s wife. These experiences prepared me for the intellectual and spiritual aspects of caregiving. However, we are limited regarding strategies and experiences that can prepare us emotionally, for the caregiving of close family members (parent, sibling, or offspring), particularly, from a distance. When traveling home it helped me emotionally to express my feelings while in route, as well as to travel half the distance, spend the night in a hotel and travel the other half, the next day, somewhat refreshed.

Currently, as a long distance caregiver, I call my sister on a daily basis. Additionally, I keep in contact with other family members, as well as her healthcare providers. Her condition has improved since placement. Upon admission, she was only able to ingest liquids. Over the past month, she has progressed to pureed foods and now solid foods. I am aware of the concept of the “calm before the storm.” However, with physical therapy, occupational therapy, speech therapy, good caregivers, the love of family, and most importantly, strong faith, she is surviving!

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