“Many people said we couldn’t do it,” Judy says about being able to care for Bernard at home. Before coming home with the Adult Family Care program, Bernard had been living at a nursing home after 3 months in intensive care due to an infection caused by a reaction to a medication.
Bernard has been living with his brother, Carl, sister-in-law, Judy, and their teenage daughters, Elsbeth and Daryl, for over a year and a half and Bernard is thriving. “We haven’t seen Mass General since August”, which is a major feat considering that up until this time, Bernard was at the hospital almost monthly. Bernard had a very serious bike accident when he was in his late 20s that left him with a tramautic brain injury.
Judy attributes their devotion to caring for Bernard to Oma, Bernard’s mother, who she describes as a strong lady with kindness and love for everyone. Bernard’s parents took care of their parents in the same home and then for Bernard. The home has been in the family for four generations and has seen its full share of caregiving.
Judy is now the primary caregiver for Bernard and is his Adult Family Care host. Judy speaks about how much she has had to learn and how Maria, their Adult Family Care nurse, has been a big help in terms of learning about feeding Bernard through the G-tube and how the monthly handouts that Maria brings on various topics, like flu prevention and first aid, have been very useful for her. Judy has created a binder where she keeps them all and she refers back to them.
Maria shares, “The whole family is united. Everyone participates in helping. When one can not do something, there is always someone else there to help.” Elsbeth has a soft, gentle touch and a warm smile. It is clear there is a mutual love between Bernard and his niece, who spend a lot of time together. The family tries to take Bernard out as often as possible. He likes music a lot, so whenever there is music in their neighborhood, Carl usually pushes Bernard in his wheelchair down the street to listen and watch.
Although Bernard’s communication is limited, he has always tried to communicate in whatever ways he could. When he was at Mass General in intensive care, he would take Judy’s hand and put it wherever something had occurred, like an IV. Judy would speak to the doctor about what had happened that day and the doctor thought she had read the chart. He also uses his eyes to point to things of interest to him. And of course his body language speaks loudly, he always has a big smile when Maria, and Adult Family Care Social Worker, Nathaniel, come to visit each month.
Nathaniel can’t say enough about the care that Bernard receives, “Judy is an incredible advocate. She will not take no for an answer when it comes to getting Bernie what he needs.”