Patient Advocate
Every client needs a point person to oversee and organize all aspects of their care. This is especially true if the client’s care is complex, if they have co-morbidity, live in a facility and/or the family lives out of town. Sometimes family members serve this role, however, the medical system can be overwhelming and fraught with pitfalls that one must be aware of and the family will hire an advocate to help navigate the system.
In addition, when a client is in a a private home or in a facility, the employees at the facility, Social Workers, and hospice nurses, don’t have time to teach various family members protocols. Anita will either work with family to understand the care protocols, the why’s of what they were doing, the changes in medication and the medical jargon that most people simply don’t have the time to learn. The organizations caring for a client always appreciate a single point person and one who understands medical lingo, the caregiver role and can communicate the needs of both the client and their families/loved ones.
But most of all advocacy is for EVERYONE. For example, Anita has advocated for a young father who had a brain tumor. His children were emotionally and technically overwhelmed. He was about to be released from the rehab and they didn’t know what to do next. Anita was able to lay out their options in language that they understood. She explained who would do what, found out what kind of insurance he had, if he wanted to go on hospice, how many hours people would cover what roles etc. In another case, Anita’s client was placed in hospice largely because of inadequate care offered by the facility in which he’d been placed. With Anita’s intervention, he was able to be moved back home, removed from hospice and learned how to resume an independent life. She not only worked to restore his strength but also to advocate with his insurance company to handle the medical costs.
In December of 2019, I sat with a dying young man in the hospital & wrote down these thoughts as I cared for him with the little time he had left.
“I sat in the hospital last night with a brain dead man of 34 years of age. He had struggled with drugs, mental illness and homelessness. I knew so little about him and the path that had brought him to the end of his young life. So as I gently washed his face and his arms cleaning him, I talked to him about how his mother must have felt when she first held him after giving birth, about her love, her hopes and dreams. I asked him to remember how he’d felt when he’d been hugged…and I had to hope that he’d actually been hugged. Sometimes I have to dig deep for my own humanity and look for the person beneath what I see in front of me. Sometimes I remind myself that we all have our struggles but they might be less visible. Some times I have to remember that in the end nothing matters except love. Love is all there is.”