Mandy is a young lady with Huntington's Disease. Although she is only 25 years of age, she began showing symptoms at the age of 11. After a formal diagnosis at the age of 17, her attitude was positive. She stayed on top of the latest HD research and dealt with her limitations. She participated in whatever she could and enjoyed a peaceful environment created to accommodate her lifestyle and needs. She participated in Karaoke with the family as backup singers, and she danced from a wheelchair with the help of family and friends.
Mandy is now at Stage IV of Huntington's Disease. Her family foresees a transition to the next level of the disease in the near future. Although her speech is difficult to understand, Mandy can still communicate her needs and wishes. When the family misinterprets what she is trying to communicate, they assume a loving and playful attitude in trying to decipher her words rather than expressing frustration or hopelessness. Mandy is usually the first one to start laughing at their hilarious interpretations! She currently receives speech therapy. The family is now looking ahead to when even limited communication will be impossible. They have contacted a computer company that offers equipment to assist disabled people with communication needs.
The family has talked about Advance Directives. They have contacted an elder law attorney to draft the necessary documents. This has all been done in a positive and natural course of life spirit. Mandy would like to be placed in an assisted living facility when a home setting is no longer adequate for the care that she requires. She feels she will be able to maintain a greater sense of dignity and care in a professional care setting.
The family has, as a group, selected burial plots and discussed the funeral arrangements they would like to have. Mandy, being of young heart, communicated her desire to wear a red, fitted, spaghetti strap dress for her funeral. Her mother assured her that she would get her dress, and the entire topic became a festive discussion, such as planning a party.
One of the most comforting and reassuring communications from family and friends to Mandy is the knowledge that she is loved and that she will be well taken care of and never left alone.
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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.