Recently at our Hospice CareCenter at Northwest Community Hospital we cared for a patient, Robert*, who was formerly at a nursing home. He was without family. The only friend we knew about, who was responsible for his power of attorney, lived some distance away. Because Robert was minimally responsive and had not had any visitors, we did not know much about him. This is always a little difficult because we want to understand the patient as a person, to put a "story" together of a life. One of the only details we knew about Robert was that he was a veteran of World War II.
Soon after I started working full time in hospice care as a chaplain, I made an initial visit to a patient and her daughter. Little did I know that after 144 visits, four Christmas celebrations, four birthday parties and countless other “just because” fiestas, I would pray the final words of commendation at her graveside with tears in my eyes. As a chaplain I don’t have favorite patients, but there are those that attach to the heart in special ways... especially after five years of visits, laughs, cups of tea and tears.
When I began home hospice with JourneyCare a year ago, I did not expect I had much time left due to my end-stage COPD. One of my top concerns was my pitbull, Coal. I rescued her from a shelter as a six-month-old puppy, and she has been my constant companion for the last eight years. I hated the idea of having to give her up due to my illness, so I hired a dog walker. (Luckily the dog walker fell in love with Coal and agreed to adopt her when I am no longer here.)
My family was thrown into a crisis when my mother suddenly collapsed at home. She experienced multiple, catastrophic health events that lasted for more than a year. She ended up in a viscous cycle of recurring pain, hospitalizations, surgeries, complications, re-hospitalizations, infections and – just when we thought it couldn’t get worse – amputations to her lower extremities.
We ended up in just about every setting of care in Chicago, none of which could address all her needs. At one point, we brought her home with 24-hour care and were outraged to learn we had to pay $15,000 per month out of pocket because Medicare didn’t cover it.
We wished we would have been more educated and better prepared.