Published on:

Discussions With Families Who Have A Member With Huntington’s Disease Proved To Be Enlightening

At the request of the Illinois Chapter of the Huntington’s Disease Society of America, I was recently asked to give a presentation at their annual meeting on, “How to choose a nursing home”. Had I been asked to speak about how to find a nursing home for a person with Huntington’s disease, the task would have been much more challenging.
For those of you who are not familiar with the disease, here are some very general characteristics of the disease:

1. It is a neurodegenerative disease that causes deterioration of the brain cells. It can strike as early as the age of 30 and progress for several decades. It can also strike children and the elderly. The disease is hereditary. Its victims exhibit inappropriate behaviors that can sometime be violent.

2. The early stages may include involuntary movements, depression, and irritability. The disease may affect the person’s ability to work or get along normally at home. In the middle stages, the person may need medication to control the movements. Occupational and physical therapy may help to control the person’s voluntary movements. Swallowing may become an issue, so speech therapy may also be needed. A person’s ability to work or get along at home may be affected. There are really no long term care communities that claim to have staffing geared toward dealing with the disease.

3. In the late stages, a person needs total assistance with all activities of daily living, and choking is a major concern.

I had only had experience with placing one person with Huntington’s disease during the very early stages of opening my business. In preparation for this presentation, I called several of the senior living communities to see if a person with Huntington’s would be acceptable for admission. I received answers that included anything from a flat out, “no,” to “it all depends upon how old the person is and how the symptoms are being controlled.” Senior living communities have minimum age requirements and a young person could feel severely out of place.  But some communities told me for the right case an exception would be considered.

I had some interesting discussions with the relatives who were attending the conference. One parent told me that although she had found a nursing home for her child, they had such terrible trouble controlling his behaviors that the administration stated they would never accept another resident with Huntington’s disease again. Another individual who attended my presentation told me that he had a 27 year-old son who was afflicted with the disease. He had made arrangements for his son to live out of state with a group of ex-convicts. His son lived with them in a private home and the father paid his room and board.  When I asked him, “How in the world did you come up with that arrangement?” He said, “I am a former corrections officer. My son was beating his mother, so he is not allowed to come home.”

I was truthfully moved when I observed the attendees who were afflicted by the disease, and how sad it was to see their uncontrollable movements. I was even more moved that there are so few options for the people who have the disease and the extent to which family members went to get them placed. But, I was hopeful when I heard one of the relatives say they were looking into opening a nursing that was especially for people with Huntington’s.