Dec 3 2012

Caring For, and Learning From, a Relative with Intellectual Disabilities

Susie Breitenstein, PhD, RN, PMHCNS-BC, is an assistant professor at the Rush University College of Nursing and a Robert Wood Johnson Foundation (RWJF) Nurse Faculty Scholar.  Breitenstein is a child and adolescent psychiatric clinical nurse specialist; she works with children and families with developmental and intellectual disorders.


My Uncle Greg was born in 1947. He was the 5th of six children.  About six months after his birth, my grandparents were advised to place him in an institution. Greg had the genetic disorder, Trisomy 21, more commonly known as Down Syndrome. In 1947, there were few services for children and adults with intellectual disabilities and very little expectations for independence and cognitive and social abilities. In fact, institutionalization was considered the best option for the child and family. My grandparents rejected this option and chose to keep him at home and raise him with his siblings. This was not an easy decision as they were told that he would never walk, learn, or participate in society.

Throughout his life my grandparents, Greg’s siblings, their spouses, and his 25 nieces and nephews took great joy in his accomplishments and his personality. After he learned to walk, every evening my grandfather would take him on a walk in the neighborhood. When he learned new things, his family rejoiced. When he participated in family, religious and social events, we applauded. When he sang ‘Silent Night’ off key, we beamed.

Greg was full of life—the friendliest and happiest person I’ve known.

During Greg’s life, many changes occurred regarding understanding of Down Syndrome and treatment options for individuals with Intellectual Disabilities. In fact, in 1959, the chromosomal abnormality causing Down Syndrome was discovered. In the 1960s there emerged the field of developmental pediatrics and understanding that an enriched environment can support cognitive function. In the 1970s, the right of every child to a free and appropriate education was established.

Parenting and caring for any child has its ups and downs and it is the same with a child with Down Syndrome. The challenge with a child with Down Syndrome, however, is that depending on the child, the level of independence varies. In my uncle’s case, he was not able to live independently, needed assistance with activities of daily living, and required lifelong care. Greg could not be left alone as he loved the outdoors and frequently wandered outside, he had chronic respiratory problems, and toilet training was a huge undertaking. In his early years, because there was no school for him, so my grandmother spent most days with him. Later, as more services and programs were available he was able to participate in a workshop and social events.


There were emotional and financial challenges associated with caring for a child and dependent adult. In fact, more challenges arose as my grandparents aged and started to make a plan for his care after they were no longer able to care for him. They transitioned him to a group home prior to their inability to care for him.

My family was fortunate in that they were able to support his transition.  However, today with shrinking state budgets and funding, many families with adult children with Intellectual Disabilities are unable to make these transitions to alternative living situations until the caregiver is physically unable to provide the care.

My uncle died eleven years ago. His last years were not easy for him. My grandparents had died while he was living in a group home. He developed dementia and became agitated, impulsive, and required several hospitalizations. After his death, his family came together to celebrate his life.

Our family was blessed to have my uncle; his presence in our lives was a gift, bringing immense joy. Greg was the keeper and originator of many family traditions. In fact, he lives on through these traditions.

There are support groups for those experiencing challenges similar to those my family faced:

National Down Syndrome Society -
National Down Syndrome Congress -

See other posts about caregiving on the RWJF Human Capital Blog.
Learn more about the RWJF Nurse Faculty Scholars program.

Tags: Caregiving, Diversity, Family and Social Support, Nurse Faculty Scholars, Nurses and Nursing, Nursing, Voices from the Field