Before I do anything else, I want and need to thank the scores of people who sent healing hugs, thoughts, light, and prayers over these past few weeks since my brother was moved from nursing home, to hospital, to a surgery floor, then ICU, and then into hospice. I know the love you send to him and to me helped us, healed us. I am so happy that friends and new readers found my words to be worth comments, concern and sharing. I did not think my pain would become evergreen. But it might.
Thank you all for your caring and compassion. I did not ask for it lightly. I could not do that. That is why I am sheepish.
At the moment I am teetering between wonder, thankfulness,tears of joy, and befuddlement and sheepishness. My brother seems to be getting better. I cannot express how happy I am that even though he will always have memory problems, and confusion, and will be in a wheelchair, he is alive and getting better. I am actually crying tears of joy right now. His son, who is the same age as my daughter, has his dad for a while longer. My brother WAS in HOSPICE… and he did not die.
I know about hospice. I have lost my parents and two brothers. Of these loved ones, three went through the hospice program as they lay dying. These last couple weeks have been emotionally grueling. I know I will have to say goodbye to my brother sooner than I should have to. I mean I know this because I have already said it. I say it whenever I leave him after a visit because the 2,000 miles between us means I cannot see him often. Those visits do not always find him lucid and knowing who I am.
There is so much wrong with this scenario.
His son is working like mad to try to get him unclassified as terminal, which the majority of the staff no longer believe he is, so as to get him moved to a VA hospital where he received good care a couple of years ago when he was initially diagnosed with severe dementia. The care they provided stabilized him to the point where he could carry on normal conversations that would fool most people listening to them. Only those who knew him well could see that he was floating in time. I started to think of him, quite affectionately, as my Billy Pilgrim.
How can a man when removed from feeding tubes, antibiotics, and all treatments intended to help him recover from infections and surgery, because of medical judgments that he was dying and placement in hospice — then get better? Something happened.
Miracle? Maybe, almost certainly. But there are other elements here also.
Misdiagnosis? Could be. We would have to have access to his medical records to determine the extent. The hospital will not release them.
Malpractice? Very possibly. My brother has always been allergic to penicillin and similar antibiotics. Hubby, the brilliant neuro-chemist, says this sort of “allergy” usually is due to a “leaky blood brain barrier.” Make sense to me. Another brother had problems with unequal membrane regulation between parts of his CNS. That brother’s spine – brain fluid balance was “off.” He had to have a shunt implanted.
So what happened? We do not know.
The Nitty Gritty of Getting Better
It seems that when they stopped feeding Roger through the surgically implanted stomach tube, and stopped the massive antibiotic treatment he was previously on, he began to get better. This is a report to me by a friend of my brother who visited him earlier this week and then messaged me:
Friend: The nurses said he doesn’t eat , but I couldn’t get the food in his mouth fast enough. He drank 4 glasses of water and 2 apple juices.
(later)Met (His son is) … taking him out of hospice and having him moved to Marion – care there is better. The care in Marion is light years better than FW.Friend: I agree he was starving and dehydrated. I wanted to scream at them.