The first official treatment conference wasn't as big or as formal as I'd expected, but it was useful nevertheless. Only a few departments were represented - behavioral assessment, medicine, social work and (on speakerphone) physical therapy. But those are the ones that matter most.
Consensus is that my father is beginning to transition. According to P, in charge of behavioral assessment, "he seems to be under less pressure" - meaning internal pressure, self-generated stress. They've altered his meds. He's now getting Seroquel only as needed, and the new staples are Depakote and Neurontin, both twice a day if I'm reading the orders list correctly. He's reported to be much calmer.
He's established a relationship with the private-duty aide, who remains in place. They're about to discontinue the night shift, but will keep her for the day shift, then begin to reduce the number of days until eventually they phase her out.
He's forming relationships with some of the other patients. He "holds forth," they said. I know what they mean.
He eats well when prompted, but otherwise forgets to eat.
Physical therapy reports that he's able to walk 20-30 feet at a time, with the help of a walker. He continues to be a fall risk.
He sat through a movie the other night - something black-and-white, with Cary Grant - and only talked through some of it.
He demands newspapers and seems to go through them. Any newspapers will do - they don't have to be current since he isn't really getting anything off the printed page.
They're less concerned now about his supposed racist tendencies. They said he responds a little better to light-skinned than dark-skinned staff, but that he also responds better to women than men, so we might just be seeing his personal attractions playing out. I mentioned again that in my experience, the best predictor of success has been the attendants' manner, not their race - the more authoritarian, the worse they do. The social worker agreed - said, "he likes to be in charge" - and they'll use that, not the race card, in setting up his staffing. Seems like progress.
He's officially described as profoundly demented. This isn't news. He told them that he's 60 years old, and has six children. I heard that and wondered for a moment where the other five are, and why they aren't helping.
He asks for me less often. This is a good thing. On the other hand, this morning he asked when the car was going to come to take him back to New York.
For that reason - and because he's only just beginning to stabilize - the staff discouraged me from visiting. That's fine with me. I came home from New York with flu-like symptoms - I'd thought I was reacting to apartment dust, but it's clearly something more - and I'm happy to sit here and rest. It'll probably be a week at least, and maybe two weeks, maybe the rest of the month, before I get to see him. Whenever the first visit happens, it'll be touch and go - no telling how he'll react. But better to have him more settled before we experiment.
They asked me when I wanted to meet with them again and I said, "You guys are the professionals - you tell me." I added that I'm happy to be informed but I don't want to abuse anyone's time. They seemed grateful - god knows what kind of demands they get from family members - and told me that there's an official conference every three months, and in addition to that I can request one at any time.
I dropped off fresh socks - all marked with his name (I'm learning) - and a small table radio I'd brought down from New York, with a classical station marked on the dial so the staff can find it. It might help calm him.
Afterward I had a few moments to meet with M/3, a care manager on D's staff and the one who'll be handling his case. She seems good at what she does - asked questions during the main meeting that hadn't occurred to me, for example about his eating patterns. I'm not sure yet how I'll use her. This isn't like the New York situation, where I needed M to run the show for me. Now that I'm on scene, I probably won't ask for as much care management time. But it'll still help to have a second pair of eyes, and to have someone other than me to make random visits. It'll also be good to have backup at meetings, and to have someone on call when I'm out of town. So there'll be a role for her, just a different one. I'm sure we'll figure it out.
The cats arrived in Virginia about 5 p.m. yesterday. Adam reports they promptly went into hiding. That's their usual pattern - they may not surface for a week or more. Seems like a good plan to me.
I wanted to take a moment out to thank everybody who's posted comments in the past week. Comments always mean a lot to me, but especially at this time, when it really helps to know that I'm not completely on my own. As you know, I usually try to respond to each comment, or at minimum to each post that's gotten a comment. For obvious reasons I'm behind the curve this time, and I'm not sure I'll have the chance to catch up, so please take this as an across-the-board expression of gratitude. I hope to get things back on track soon, maybe when I'm done with the apartment closeout, maybe sooner.
Am going to follow the cats' example and go to ground for a while now. More next week.
Don't worry about "us'ns out here". You are focused as you should be for this time -- getting better healthwise, breathing in and out with a bit less anxiety, and enjoying that odd, unknown feeling of on-site responsibility for your dad's day-to-day CARE and safety sliding from your neck, shoulders, and back like a 10-ton boulder easing gently to the ground next to you.
It is as it should be. You have done everything that is for your dad's best care and comfort and SAFETY. You are a most excellent son, and now rest up. There will still be interesting things to come, but it seems you truly have an informed team on your side helping you make the rest of the journey.
And we love you, and him, out here, and respect your path and your documenting of same. I don't know if you ever cry with any of what y'all've gone through, but, trust me, I have cried for you because I can offer that. I have also laughed with you, held my breath waiting for updates, sent you good thoughts, and rejoiced as each barrier was slowly but finally kicked over for you both to find haven with this.
Yes, there will be more, but you will be strong enough and you will not ever let down your standard for guarding him and the flickering flame of his "self" while it's possible.
Best to you all, best to you.
Admiringly,
Shu
Posted by: Shu | November 06, 2009 at 11:18 PM
Yes Alan, I agree with Shu. I'm grateful for you going ahead of me and letting me know how the road is. Next week I place my husband for a few days of respite care and a trial run of what it will be like to actually do the deed. I haven't slept well for weeks thinking it over.
Shu- thank you for your writings. I have started following your blog as well.
Posted by: julie | November 07, 2009 at 10:48 AM