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Things You Learn in Hospice Care

By Kristin
Posted on

I had the conversation with my sibling.

The important thing is that this conversation has started and that it will be an ongoing conversation

My older sister is 32 years old with a 12-year-old daughter. We all live together in a house that we are renting in a mid-size college town. About 2 or 3 years ago, my sister was diagnosed with rheumatoid arthritis and sarcoidosis. There are some days that she can barely use her hands due to the swelling and stiffness. Before her diagnosis, she had broken an elbow, broken her arm, sprained both of her ankles on multiple occasions, and had nearly torn all of the ligaments in one of her feet. Looking back on these injuries, it seems pretty clear that the sarcoidosis was probably the culprit. She has undergone several different treatments, none of which have worked. She is currently on a schedule of receiving some kind of chemo drug infusion that is supposed to lessen her symptoms and keep them in check for a year. Not going so well…
I have been speaking to my sister, on and off, about end-of-life and her wishes. Why? I am pursuing my MSW and recently started an internship at a hospice facility. I have learned a lot, including a bit more about sarcoidosis. In doing research for resources and support groups for various life limiting illnesses, I discovered that sarcoidosis has a pulmonary component. My sister has already had the need for a nebulizer in the fall. If her pulmonary functioning declines, it is likely that she will one day be in hospice. I provided her with a POLST form and we discussed it briefly, ending with me telling her to take it with her to her next doctor’s appointment.
My sister is not dying. She may have decades left of her life. The important thing is that this conversation has started and that it will be an ongoing conversation until the time comes that she can no longer participate in it.

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