My husband and I have six adult children. The oldest, Amanda suffered two anoxic brain injuries when she was 19 years old. She is a quadriplegic and requires considerable nursing care. She has a g-tube for feeding, a trach, and is bedridden. Pressure sores, as well as poor lung function, are a constant threat to her health. She requires continuous pulse/ox monitoring and suctioning at all hours day and night. Due to the severe nursing shortage throughout the US, we are unable to have all of our approved nursing shifts covered for Amanda. We are eligible to receive 92 hours of nursing care through the week; we receive only 56 hours of help, leaving me to cover 36 hours. Note that this does not factor in the “12 hour shifts” that I cover every night without relief. When our nurse had to be out for an extended period of time due to a back surgery in October 2019, all of our hours went unfilled. As a result of being her sole caregiver, 24/7, my physical and emotional health suffered, as did my business. Being a full-time caregiver without any real break or respite is impossible to keep up and leaves us very isolated and lonely.
We would love the Family CNA Program to pass here in Missouri. It is important to realize that compensating a family member for their time, especially when no other help/nursing coverage is available, can assist financially and make it possible for the family unit to survive.