Today marks Day 6 that Dad has received a higher dose of Zyprexa, and Day 6 of stability. From a psychiatric standpoint, he is stable enough to be discharged from the GPU, and stable enough to go back to R Center, the nursing home he was in. All told Dad has been in the GPU for almost 4 weeks, the longest he has been anywhere since leaving home over a month ago. We are so thankful to his entire care team at the GPU, but most especially to Palliative care Doc, who has guided us through the decisions we've made about how we want Dad to spend the remainder of his time.
Theoretically, Dad was cleared on Monday, 6/23, but a medical issue cropped up that needed to be clarified between all parties before he could be released. It seems that in the last 2 weeks Dad's red blood cell count has dropped quite a bit. For whatever reason (I still don't understand how or why a test was done, since it was a surprise to Palliative care Doc), a blood draw was done on Monday and his count had dropped from 34 to 21. So he is definitely anemic. Palliative care doc called and left a voicemail saying he was going to repeat the test in 24 hours to make sure it wasn't a math error. On Tuesday he called and left another voicemail saying the low number was correct, and we now had to decide what, if anything, we wanted to do to pursue it. For two days I was in the middle of dress rehearsals for the girls' dance concert this weekend, and was barely able to listen to the voicemails and call back to leave HIM a voicemail. So it wasn't until today that we were able to meet. I learned that Dad could not be cleared for discharge until we had decided what we wanted to do about the anemia.
There are a couple of schools of thought concerning what to do when a patient is discovered to have anemia. Normally, if the patient were already at the hospital, they would be wheeled to the proper departments and have a battery of tests done: endoscopy, colonoscopy, imaging. However, in Dad's case, a person with late stage dementia, such testing can seem invasive and instigatory. The logistics of testing would probably involved Dad being either physically or chemically restrained. Knowing how Dad reacted to simply having an IV drip in his arm only a few weeks ago, we understood that this would be a problem. Initially Mom thought, why not keep him here a few more nights and do an endoscopic procedure. Dad had one done a few years ago. It was a very simple thing where they went in, looked around, saw an ulcer and lasered it. Done. The problem is, what seemed very simple a few years ago, is not simple now. Dad would have to be anesthetized, with an IV, AFTER a prep process. To even a rational person, this process is uncomfortable. To a person who rarely understands why anything unusual is happening, this could seem inexplicable, and downright terrifying. So she elected to not pursue it.
What does this mean? It means that we will likely not find out why Dad is anemic, and his anemia will continue. We can give him iron supplements (orally), hoping he will take them. But since we are not going to keep doing blood draws, we will only know by observation whether the supplements are helping. If they don't work, his anemia could get worse, and other than treating any symptoms of discomfort (although Palliative care Doc didn't think there should be any), we will do nothing. While this can initially feel so counter intuitive, as if we are abandoning Dad to his fate, Palliative care Doc reminded us of our goal: We want Dad to be comfortable, happy, and peaceful. The anemia may be another, "closing event," which may end in a cardiac event. But if he has shorter time that is as good as the last few days have been, we will have achieved our goal, and Dad will have gone in the best way possible. This instead of us poking and prodding and MAYBE finding a cause, then treating it, to give him a little more time, but in the meantime making him quite unhappy.
So what have the past few days been like for him? When Mom went to visit him, he was up in his chair, in the common room. A few times she arrived to find that he had already eaten his meal, whereas before he would refuse all food until she arrived. One day over the weekend when she arrived, he told the nurse, "This is my wife, Phek-Hun. She's my best friend." He would let the nurses feed him and thank them afterwards. He has started to experience the return of toileting urges, and would tell Mom that he needed to go. Once he said, "Well, let's just go home then so I can go to the bathroom." My sister arrived two days ago for a visit, and when she walked in Mom said, "Hey, it's Eileen!" Dad took her hand, looked right at her and kept repeating her name (Dad hasn't seen her since February). When I went to see him today, I took his hand and called his name. He opened his eyes, saw him and started nodding and smiling, saying, "Oh very good, very good!"
What surprises me most is the change in his attention and ability to engage. I assumed that because he was taking an anti-psychotic, he would be sedated most of the time, and he did seem very sleepy in the beginning. But in his lucid moments, which happen more frequently, he is very relaxed, alert, and happy to see people, instead of shutting down and wanting everyone to go away and leave him alone.
Tomorrow his entire care team will meet at their usual time. The social worker wants to make sure that all docs are on the same page, and ready to discharge. Barring any bizarre quirks, Dad should be ready to go by the afternoon. Palliative care Doc told us that the most critical time is the time of transfer. It is upon us to make it absolutely clear to R Center that Dad is on Palliative care, actually Hospice care (as soon as we can make it happen). Therefore, there will be no midnight ER runs, no calls telling us they are ordering some test. Even though the care team will have a complete write-up to give them, we are the front line in making sure our goals are met. We would appreciate prayers, especially for Mom during this transition. She's a little anxious because she has gotten so comfortable with the care Dad has gotten at GPU. She knows that it will not be the same at a nursing home, which is just the way things are. We are so thankful to R Center for keeping a bed for Dad as long as they did. Now he will be only 5 minutes away, we can see him any time, and so can the kids. We are blessed.
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