By Susan C. Jenkins

What do you do when all of a sudden you find yourself the primary #caregiver of a 50-year-old brother with rapidly progressing multiple sclerosis? Well, if you’re like Virginia Miles, you jump in with both feet and learn everything you can about the system. You learn what the options are, what obstacles you are likely to face, and how to overcome them.

Lessons learned

The first lesson Virginia learned is that the further along the disability is, the greater the challenges in navigating the system. The second lesson was the importance of speaking up and never stop asking questions. Learn all of the possible options that exist and keep pressing for more information if you aren’t satisfied with what you’re hearing.

The first hurdle she encountered was the cost of her brother’s medications—over $30,000 a year. Her brother had no private insurance, and because he was under 65, the drugs were not covered by a government program. Virginia approached the pharmaceutical manufacturers who made the drugs her brother took and requested a discount on compassionate grounds. She got it. Next she approached the pharmacy where he filled his prescriptions and negotiated a reduced markup. She was eventually able to bring the cost of his drugs down to about $150 a month, a reduction of more than $28,000 a year.

The challenges mount

The next hurdle she had to overcome was her brother’s day-to-day care. Because he was entitled to only three hours of home care per week, living alone wasn’t a safe option for him. Compounding the problem of being unable to care for himself was the fact that no effort was made to match the care provider’s skills and personality to her brother’s needs and temperament, making the arrangement awkward. Adding to the difficulties were the care provider’s frequent late arrivals and no shows. Clearly, Virginia had to find another option.

While home care was inadequate to allow him to stay in his apartment, a long-term care facility didn’t seem to be right either. He didn’t need that level of care, and Virginia felt it wasn’t a good option for someone his age. Someone recommended a group home, but care at that facility proved to be inadequate as well. In fact, they weren’t even aware that her brother climbed out of the window at night to get some fresh air! Eventually, she determined that a long-term care facility was the best option, despite her initial reservations. At first, it seemed like a great place, but things went downhill pretty rapidly.

A new path

Virginia’s experiences led her down a new path. She formed her own company, Compass Healthcare Solutions (www.compasshcsolutions.com) to help guide others through the crosscurrents of the healthcare system. She offers the following advice to families and caregivers who are faced with navigating the system.

Susan C. Jenkins is a freelance writer and editor specializing in medicine, pharmacy, and healthcare (linkedin.com/in/susan-jenkins-74ab0123).