Rona lives in rural Oklahoma and is the mother of three children. Her youngest child is a 13-year-old with Down syndrome. Her daughter is non-verbal and has significant intellectual disabilities. She can’t be left unattended. Though Rona feels fortunate that she and her husband are employed and that they have health insurance, she is frustrated because even with two health insurance plans they constantly fight to secure approval for support services critical to their daughter’s well-being. The insurance company has even approved requests for in-home therapy, only to cancel it later stating that it never should have been approved at all.
Rona works in an office setting she truly enjoys. She recognizes that her work supports her in ways other than just financially. Her work provides a break from her house, and challenges her mind – which improves her outlook on life and helps her deal with the stress of caregiving. Rona’s boss has come to understand that she requires some flexibility in her schedule as it is not uncommon for Rona to have to leave work immediately if her daughter’s school calls. In the beginning, Rona felt guilty about leaving work for these short periods and would often work without taking breaks to prove she was still a good employee. Rona enjoys her job but if it wasn’t for the year round caregiver duties she would take a more career oriented job like she held in the past and enjoyed. This current job gives her summers off which is a huge deal for a caregiver without good options for care for an almost adult child.
Respite services are very important to Rona and her family. Respite allows her to be a mom to her other children, attend to her own medical needs, and even have an occasional date with her husband. Respite gives her guilt free time away from caregiving and allows her daughter to stay in her routine.
Rona expects to be a caregiver for the rest of her life or for the rest of her daughter’s life. It’s doubtful her daughter will ever be able to live on her own. Rona worries about what would happen to her daughter if she or her husband die, or if Rona and her husband end up needing care themselves in the future. She stated, “It’s very sobering to think about.”