This past Monday morning I was on the phone with Dad's neurology NP explaining Dad's shouting jag. Today is Friday, and in a few minutes I'm going to head back to R Center, a nursing home and rehab facility in town where Dad has been since yesterday. In some ways, our journey from Monday to today has been at a leisurely pace. On the other hand, the sequence of events seems to have transpired in a very compressed amount of time. So what happened?
Monday morning the NP asked me a few preliminary questions, then told me since Dad's behavior had changed suddenly, we needed to take him to the ED (emergency, I had to ask) to be evaluated. Her office couldn't treat him until all medical causes had been ruled out. So off we went to the hospital. Several hours and countless tests later, the preliminary finding was that Dad had a UTI. As soon as I heard that I was kicking myself for not thinking of it earlier. Mom said that over the weekend he kept yelling about pain. But when she asked him where it was hurting he never replied. We assumed it must be his stiff leg, or his arthritic hand. Monday morning he never mentioned pain, but howled more than ever every time the home health aides moved him around. I had also noticed that his catheter bag was fuller each morning through the weekend, even though he would pee a large event once a day. The attending MD told us that UTIs are a common cause of agitated behavior in folks with dementia, but I had already heard this from multiple sources. I don't know why the possibility of an infection didn't occur to me, since he was obviously retaining a lot of pee.
In parallel with this infection, the attending MD told us that since his bladder was constantly full, he must be in chronic discomfort, if not outright pain, which may have caused the uptick in his yelling over the course of last week, even before the infection set in. This would explain why, by the weekend, we couldn't get him to stand up straight on the few occasions we were even able to get him on his feet. Of course this sent a fresh wave of guilt for not using the intermittent catheter. I had mistakenly assumed that as long as he did pee during the day and all night that it would be enough, and was squeamish about inserting the intermittent catheter several times a day. In any case, the staff set Dad up with a Foley, an internal catheter, to continually empty his catheter.
During our wait, we were visited by the hospital social worker, who started by asking us if we had any questions, then proceeded to ask us many questions. She asked how things had been at home, told us that there was a possibility Dad would be admitted (which he eventually was), and from there he might be transferred to a rehab facility, IF WE WANTED IT. The minimum the hospital could offer us was to send him home with liquid antibiotics. But the attending told us her recommendation would be to keep him at least for one night so that they could monitor his condition, since his bloodwork indicated a few other numbers that were low. She also wanted Dad's urologist to see him the next day and advise them on whether it would be better to leave the catheter in. After many questions and answers, we decided that yes, we would keep Dad in the hospital, yes, we wanted him to go to the rehab, and yes, he could go straight from the hospital after he was discharged.
When I went to see Dad the next morning, I was amazed at the change in him. I called his name, he opened his eyes wide and saw me, and started to chuckle. He actually looked content. I couldn't believe it. Dad hadn't looked this chipper and engaged since before he went to respite care. It made me wonder how long he had been feeling uncomfortable from not being able to eliminate. From then on he settled into his baseline, still occasionally shouting, but at a much lower volume, never mentioning any pain, and much less frequently.
The nurses and LNAs at the hospital were incredible. When Mom and I saw how quickly and deftly they handled Dad every time they had to clean him up and change him, we laughed at how inept we were at home, with Dad howling the whole time, and us trying to keep him on his side by brute force while using 20 wipes to clean him up. Dad never made a peep any time they moved him up and down the bed. In addition, the case manager who handled our search for a rehab facility (Did you know there's a shortage of male beds simply because there's a much greater demand for female beds in nursing homes? I didn't.) took care of every last arrangement. She called and scheduled his followup with the urologist (who will decide whether Dad should keep the catheter in long term), confirmed his admission, arranged for transport, and brought all the paperwork for us to sign. In the last 10 minutes before discharge, Mom mentioned we should ask Dad's nurse to check him to see if he needed to be changed. The SECOND AFTER the words left her mouth, the nursed walked in and said, "I'm just here to check him one last time to make sure he's clean before he goes." Bing bang boom.
By yesterday evening Dad had finished settling into his new room at rehab. This morning, a PT came to assess his physical abilities. Next Monday Mom and I will attend a post admission meeting to discuss our goals for Dad. The decision to be made is: are our goals rehab to go home? Or long term care? It's not clear to me how much overlap there is between these two goals, if any. The PT told us that in a week or two they will know what mobility goals are achievable. The biggest obstacle to any progress is Dad's resistance. If he doesn't want to do anything the PT asks, she can push but she won't force. Unfortunately his Alzheimer's is behind his resistance, so when the PT asked me, "Did you want him walking again?" My response was, "Is that even a realistic expectation?"
R Center has indicated that if we decide at the end of the rehab period that Dad needs longterm care they can keep him. This kind of in was indicated by the director of the county facility but at the time I thought it was a "thing" at a state facility. However, I really didn't think things would happen this quickly! We were initially bummed because none of the 3 facilities we looked at had an available bed. We didn't consider R Center because no one recommended it in particular. But being in town it is about 5 minutes away, and very easy for Mom to pop and out. So far the staff seems to be very much on the ball, very willing to work with family members, and Mom really likes the atmosphere. What Dad thinks about this is anyone's guess. He was definitely not happy yesterday evening, and at first refused to eat dinner. This morning he also refused to take his early meds. It's definitely going to take a few days for him to settle in and get used to the new people who are taking care of him. Meanwhile we have some decisions to make. Again :)
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