Not one time did hospice care ever cross my mind when I thought about Bob. When he developed a blood disorder the hematologist told me people like Bob usually died from an infection that moved quickly or they bled out, but either way would be quick.
Bob and I were badly shaken when he went into acute delirium. In our wildest imagination delirium was never on the list of things that could happen. None of the specialists wanted to own that delirium, and believe me we didn't want to own it.
I needed to get Bob in to see a doctor and Friday is never a good day for that. As expected, none of his doctors were in their offices. I agreed to see a new doctor in one of the clinics where he was a patient.
This doctor actually did what doctors are supposed to do, he read Bob's medical records before seeing him. That was our undoing. The test results on Bob's recent bone marrow test were beginning to come in. This doctor entered the treatment room and immediately told us we needed to put Bob under hospice care. We were shocked, worse than shocked. Thinking back I can think of things I should have said or done but in that moment my brain was frozen.
That evening an intake nurse and social worker from one of the hospices came to visit. All went well until I had enough sense to know this needed to be run by our nurse daughter in Texas. I called Texas and had the intake nurse visit with Susan. After that things went bad in a hurry.
None of us slept that night. The next morning I called the hospice office and told them to hit the pause button, we were not ready to sign on.
Susan hopped a plane and flew to Oregon. One, among several, of her objections to the group we were working with was it being a for-profit group with offices nationwide. When I called their office a person in another state answered the call.
A local non-profit was what Susan wanted. That's what we did, and Bob's hematologist said he would be pleased to be the physician for Bob. We were all much relieved.
This was Thursday, Saturday morning Bob died.
Your account brings back memories of my father's death. My sister and I met with a hospice nurse at 2pm on a Tuesday afternoon. My father died four hours later. He had been sick for 3 and 1/2 years, but the end still came unexpectedly.
ReplyDeleteWow, that's a lot to absorb in such a short time, no wonder you were in shock. A lot of people don't know there are different Hospices groups with different rules...especially when it comes to administering pain med.
ReplyDeleteI did not know there are for-profit hospice groups. In fact I know very little about hospice except I thought this kind of care was well though of.
ReplyDeleteHospice care is wonderful. Like everything else you need to know the details. The two agencies we dealt with were quite different in their rules, the medications they used, and their general approach to care. I can’t say either was bad. We just preferred the feel of the local hospice as opposed to the feel of a nation-wide organization.
DeleteI have not had any good feelings about Hospice houses. They with held food and meds from my Dad, put him on enough Morphine to send him into a coma, even though he was in no pain. They said he would live 3 days and he did. I think they overdosed him on Morphine--personally. I haven't had any experience with in home Hospice, but I hear it is very good. I would prefer that for myself. Or go as Bob did. That;s the best way.
ReplyDeleteI did not know that there are for profit Hospice services. What a shocking experience that must have been for all of you. I'm so glad that Susan was able intervene and help navigate the situation.
ReplyDeleteThanks for sharing all of this with us Linda.
Wow, for profit is new to me also. What a nightmare you went through and how lucky you are to have Susan to guide you.
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