I am currently helping friends with their severely disabled child. The child needs round-the-clock supervision; this is especially challenging during the night, as someone must monitor the child’s condition at all times. Because of the pandemic and my friends’ precarious financial situation, they are relying on friends to take a night shift, which used to be covered by a nurse. I am now monitoring the child at night once a week, while other friends or family take other nights.
The night shifts are certainly exhausting, but they are mostly doable for me. I am acutely aware, however, that there is no end in sight. And there is a very limited pool of people prepared to give up a night’s sleep. But in helping I feel that I have lost a friendship, as our relationship has become so transactional. I feel as if I am no longer seen as a friend but as a health care worker. I want to stop, but how can I when I know the consequences of stopping will be so catastrophic for the family? I know the child is not my responsibility, but I also know there is no one else to fill the void. Name Withheld
I wrote about high-priced drugs for years. Then my toddler needed one.
Anakinra is expensive — on average, private health plans pay about $4,000 a month for it — so we needed to get approval before it would be covered....
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