Bob Veillette is a journalist, musician, veteran, husband, father and grandfather. On April 8, 2006, after finishing a free piano concert at the Silas Bronson Library in Waterbury, Conn., he suffered a massive stroke that left him with locked-in syndrome.
As a result, Bob is cognizant, but almost completely paralyzed. He can blink his eyes together and has very limited movement of his head. He can see, hear, smell, think and feel pain, but he cannot speak. He is fed by a feeding tube that provides him the nourishment he needs, but leaves him feeling constantly famished.
He communicates using his eyes. He opens his eyes and looks up for "yes" and closes his eyes for "no." When someone is ready to take dictation, Bob closes his eyes and the other person reads out letters, listed in order of most frequently used. When the other person reaches the right letter, Bob opens his eyes and looks up, spelling out words one letter at a time. He has tried a few computers that track eye movement to write words, but he has been unable to use them because the stroke left his pupils with an involuntary flutter that meant the computers could not acknowledge his letter choices. He is hopeful that he will find a technology that will help him communicate more efficiently.
Before the stroke, Bob was an avid runner, well known in the area as an accomplished jazz pianist and a respected journalist. He worked at The Republican-American newspaper in Waterbury, Conn., for more than 40 years as a reporter, city editor and most recently, managing editor. His wife Bonnie is his full-time caregiver and they have three adult children, Stephanie, Greg and Mark, and three grandchildren.
In October 2006, after six months in hospitals with little progress, his family brought him home to Naugatuck, Conn. Given his condition, no suitable nursing home in the region would accept him and his family preferred to bring him home.
So, for the next 16 months, Bob’s family was responsible for all of the expenses related to his care at home. While he was in a rehabilitiation hospital, Medicaid paid for all of his care, and it would have continued to pay for it if he had stayed there, or been sent to a nursing home. But once he went home, Medicaid payments stopped because the family was put on a waiting list to get into the only Medicaid program in Connecticut that he qualified for that would help pay for his care at home. Bob finally was accepted into the program in January 2008, but it does not cover the cost of all of his care. The family still must pay thousands of dollars each month in expenses.
As a result of his frustration over the limited choices available for home care in Connecticut’s Medicaid program, Bob joined a grassroots effort to reform the system in early 2008, an effort that led to state laws being changed to allow for more home-care choices within the Medicaid program. To learn more about this movement, visit www.letfamilieschoose.org. Even though Bob helped change Connecticut's Medicaid laws, those changes won't help him and Bonnie for years.
As a result, Bob's friends and family continue to hold fundraisers to help pay for his care. He and Bonnie are currently living off the money collected through these fundraisers, his pension, Social Security and Medicaid. The money from the fundraisers also allowed them to purchase a wheelchair-accessible van so his family can drive Bob to therapy and other places without hiring an ambulance. Due to financial constraints, Bob has had limited ongoing physical therapy since leaving the rehabilitation hospital, but he has had no speech or occupational therapy.
Despite the difficulties, Bob has maintained his trademark optimism and his sense of humor, saying: "It's not unfair. It is a blessing. I was hung up on material things. This 'stroke thing' straightened me out."