November is National Family Caregiver Month. This month we are rolling out our new Public Service Announcement on radio and television to highlight the importance of respite care for family caregivers. The family featured in our PSA is a “real” Florida family. We’re vary happy to share some of their story in today’s post:
Reeta is a mom who is caring for her 20-year-old daughter, Betsy. Betsy has cerebral palsy, seizure disorder, quadriplegia and extreme separation anxiety.
Reeta also cares for her husband who has diabetic neuropathy in his hands and feet.
The family began their caregiving journey when they brought Betsy home from NICU as a foster child when she was 2 months old, weighing 5 lbs 6 oz. She was a 26 week preemie and weighed only 2lbs 1 0z at birth.
When asked what types of supports they have surrounding their caregiving duties, Reeta explained that they have Nursing services and patient care providers, adding “we are one of the lucky ones.” She also expressed that extended family members do not provide caregiving support because they are intimidated by Betsy’s need for constant supervision for seizures and anxiety as well as her 6 g-tube feedings and 28 medications.
Betsy’s family is able to access formal respite care services through the Medicaid APD waiver. Their agency providing this care is Special Friends Care. This respite care allows Reeta to have some time away from home. Betsy also goes to Gainesville Health and Fitness twice weekly, school at Sidney Lanier 4 days a week accompanied by her Nurse, and Magnolia Park for therapy weekly.
In terms of support, Reeta expressed that some of the most important things she needs are
knowledge of what services that are offered for Betsy as she will be transitioning to Adult services.
To help her feel less overwhelmed, Reeta finds it very helpful to talk with other parents who have been through it already. Having a strong, understanding support system is essential.
One of Reeta’s self-care strategies is finding some alone time in the evenings after Betsy is asleep.
Reeta also shared that when they adopted Betsy they also adopted Katie who was 18 months old. She had Cystic Fibrosis and had numerous medications, treatments, hospitalizations, doctor appointments, and therapies. She was developmentally delayed and struggled to get her diploma. She had a shirt she wore the last months of her life that stated NEVER GIVE UP. She was 21 when she died. Reeta had a significant period of time when she was giving over 50 medications, numerous respiratory treatments, and g-tube feedings to both girls. After Katie died, it was a challenge to adjust. She has now gone back to work part-time and is spending time preparing for Betsy to transition to adult services when she turns 22.
Welcome to the Florida Lifespan Respite Alliance
June 1, 2016
You hear the term, "respite" and you wonder - what exactly does that mean? You are not alone in not knowing or misunderstanding the term. Many family...