News story about Pennsylvania family coping with PSP

This long article on a family dealing with PSP was published last week in a Central Pennsylvania newspaper, The Patriot-News. It’s a very realistic portrait of 69-year-old Larry Freeman in the final stages of PSP. He is cared for by wife Sue, son Chuck, and other family members. Larry is on hospice at home. He is mute and moves very little. He was diagnosed with PSP by Johns Hopkins in Baltimore.

It’s also a realistic portrait of Larry’s wife Sue and the overwhelming stress she feels. Part of the stress comes from so many family members living in her home.

Online, there are a dozen photos of the Freeman family as well as a one-minute video of Sue feeding Larry.

There are two points made by the author that I don’t agree with. Families who place their loved ones in care facilities are described as keeping a buffer between “themselves and their loved one’s impending demise.” The only difference in my mind is that the care facility is doing some of the “dirty work.” They certainly weren’t a buffer to my father’s impending demise.

Also, patients who stop taking in nutrition are described as starving to death. There’s a lot of data showing that people whose bodies are shutting down do not experience starvation.

As disease takes over dad, Perry County family crowds together to provide care
By John Luciew
The Patriot-News
Published: Monday, April 11, 2011, 11:50 AM