January 2001 I resigned from my full time position of over 12 years, to become a host caregiver in the MassHealth AFC program. After meeting the specified requirements, I was approved as a host family and began receiving the $19 a day tax free stipend for providing personal care assistance and 24 hours a day supervision. WestMass ElderCare received slightly more than that for "administrative costs and overhead". I thought it a bit odd that the non-profit organization would receive more, as I was responsible for around-the-clock as-needed care, and as best as I could tell, they only had a LSW and RN stop by the house for an hour or so once a month. Of course, there would be report filing and driving time etc. too, but compared to 24/7 ?? As Massheatlh also provides care recipients in the AFC program with up to 8 hours per week of Home Health Aide services when approved, I imagined this would also figure into the "administrative costs" and that once things settled down a bit I would be able to use those 8 hour as a respite from my care responsibilities and be able to work in my career part time to help offset the reduced income. What I made all month from AFC I had made in my career in a week and a day, but I believed that if I could schedule the respite for the weekend night differential, I should just about break even.
After a few months I asked about getting some respite, but to no avail. My savings where steadily declining, as monthly operating expenses were $100 more than income.
I asked for respite a few more times with the same negative result. Eventually my savings ran out. I converted my Life Insurance to a pre-paid funeral account, gave up my car, and signed up for low income assistance. I was thus able to just keep up with expenses, although it also meant that I had no days off, ever, from my care responsibilities.
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