The man falls out of the bed. It breaks. This is not the first bed to drop under the weight of his flailing bones and thrashing limbs. The bed is now braced by a two-by-four, and it is only a matter of time before it will go down. His balance is poor and he falls out of the bed. This happens all the time. It is not his fault that he has destroyed three beds, two couches, countless toilets seats and an array of nearby furniture. He crashes and trips into things. His body outwits his mind. It throws him around, shamelessly.
His body has no brakes. He doesn’t just sit. He crashes.
Watch out, his mother warns. She loves him. He is 34 years old and has lived almost half his life with symptoms of Huntington’s disease. He inherited the disease from his father, who has since died. His mother takes care of him. He can no longer live at home because there are too many stairs, and he has a history of aggressive behavior. He lives in a boarding house, and his mother has spent months trying to find him a hospital bed. Such a bed would be tough enough, she hopes, to withstand some of the brutal aspects of the neurodegenerative disease. A wider bariatric bed would be even better.
He lives in the boarding house with eleven other people, mostly in their 70s and 80s. They all have dementia, but so does he. They hate his loud music so he wears headphones. Much of his time is spent playing video games in his room. No one understands why his body moves all the time, why his food flies everywhere, or when beds come crashing to the ground. On weekends, he goes to the movies or to concerts with his mother. He loves eating out. The disease has damaged parts of his brain so that no longer seems to worry about what is wrong with him or what the future holds.
This is a life with Huntington’s disease. Mother and son go to monthly support groups together. His mother has met dozens of people with the condition and everyone is different. Many have psychiatric symptoms or odd behaviors and uncontrollable dance-like movements. One woman has reached 70 years old and the only sign that she has too many copies of the gene that causes Huntington’s disease is a tapping of her feet. It doesn’t stop her from knitting beautiful scarves to raise money for Huntington’s research.
This mother’s son wasn’t as lucky. By high school, he was belligerent and oppositional, like his father. He excelled in Latin but could not focus in school. His mother worried about him and suggested he get tested. He went alone and came home with a letter saying he has Huntington’s disease. A year later, at 18, he left home. He enrolled in college but his unusual behaviors made him undesirable as a roommate. He dropped out and began couch surfing and living on the streets. At 26, he was so paranoid and psychotic that his mother brought him back to San Francisco and started putting the medical pieces in place to get him help.
He ended up at UCSF, where he is still managed today. Social workers have joined the fight to get a hospital bed. Together, the mother, doctors, social workers and nurses have filled out a dozen forms and sent them off to city, state and federal agencies.
At home, he started tripping his mother, slamming doors in her face and screaming. Often, his mother was so afraid that she locked her door. The police were summoned to their home several times. Ultimately, he pounded on his mother’s head and the police came and took him to a local hospital. He remained there for two months. It was the last time that he would live at home. Now that he is living in a boarding home they have found balance in their relationship. She manages his life, on every level.
“The hospital bed is on the top of the list,” she says. There are about 15 other items she needs to take care of for her son, but she will stay on the bed before moving on to the next task. She is in her 60s and worries about her son if something happens to her. He needs oral surgery. He needs exercise and a day care program. Soon, he’ll need a helmet to protect him from head injury due to frequent falling.
His mother is very close with her son’s doctor, Mary De May, who has been overseeing his care since 2008. The geriatric psychiatrist advocates for her patient at every turn. She has also written letters about the need for a strong bed to withstand the abnormal movements of a strong man.
The mother will not give up on protecting her son. There is always tomorrow, she says. Another call. Another letter. Another request for something that seems so simple to keep him safe. A bed.
Jamie Talan is an Atlantic Fellow at the Global Brain Health Institute, a collaborative program between University of California, San Francisco and Trinity College Dublin. She will be spending several months at UCSF’s Memory and Aging Center writing about the inner workings of the brain and giving voice to patients and the doctors, nurses, psychologists, geneticists and researchers involved in building the foundation for a whole body of non-Alzheimer dementias that are often missed, lost or ignored.