Marguerite is a beautiful woman who, before the onset of HD, enjoyed ballet, singing, modeling in fashion shows, occasional extra film assignments and participating in stage productions. She married at an early age and has two children. Although her husband loves her and is compassionate, the rest of the world has not been quite as sympathetic nor have people in her community understood the nature of her illness and the accompanying personality and behavior changes. In time, her friends avoid her as do her child's school staff, grocery clerks and even medical staff. It becomes clear that her family needs to orchestrate a support group around her.
Since it is no longer safe for Marguerite to drive, the family secures transportation from a county transportation service for the handicapped.
Her aunt invites her to join her church Bible study class and a women's group that has frequent activities throughout the year. These activities encourage meaningful social interaction and Marguerite feels renewed spiritual strength.
Family gatherings also change. Many now take place at Marguerite's home to make it more convenient, to promote her self-esteem and create happy memories for her husband and her children while she is still living at home. Family and friends respond to the family's invitation to help by orchestrating some of these gatherings. As Marguerite's abilities decline, family and friends adapt tasks and activities to meet her abilities.
These subtle but powerful changes produce a much happier and content person as Marguerite realizes self-worth and happiness. Being appreciated by others reaffirms her as a person. The quality of her life does not decline although it is altered to accommodate the changes brought on by Huntington's Disease.
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.