Pam and Tom Brems have three children. Their two sons, Alex and Ryan, were born 7 years apart with the same brain malformation. This life-limiting illness became apparent shortly after they were born. Alex, born in 1987, lived to age three and Ryan, born in 1994, died at age eight. Their daughter Jennifer, born between the boys, was not affected.
During their lives, both boys required 24-hour care which was provided exclusively by Pam and her husband, with no respite services available during Alex’s lifetime and very limited respite services during Ryan’s life. Their insurance did not cover respite care and it was years before Pam’s own research found a Medicaid waiver which they were able to use with Ryan. The Brems family did not have any local family support and their son’s medical needs were too advanced to utilize regular childcare options. Palliative care was never offered as a support service for either of the boys.
Pam adamantly believes that respite care is not a luxury while caring for a child with 24/7 care needs. She states, “Respite care is as vital to the life of a marriage and family relationships as a suctioning machine is to a child with swallowing issues.” She asserts that respite care is an essential component to help parent caregivers maintain a healthy mind and marriage because many marriages do not survive the stressors of a chronically-ill child. Respite care also provides crucial time to maintain healthy relationships with other children in the home.
Pam is excited about Life House Atlanta providing much needed palliative and respite care for families in a child-focused “home” environment that is different from the typical medical setting.
