Monday, July 27, 2009

Doing ok

One week since last post, and the update: we are still standing, Dolly is still at Sherrill House for time being. Therapies, as far as we all know, at this moment, are scheduled to end this week - Wed. ( occu and physical) and Fri. ( speech). This is the latest since we met with mom's team last Wednesday. Since then, I think she's made a little progress, but as far as I/we know, she is still on track to end therapies on Wed. and Fri., unless they notify us and tell us otherwise.

Coming to realizations, dust settling in my neck of the woods. I'm realizing that Dolly's issues which are holding back her recovery and are thought to be psychologically based may very well be just that, or they may be a combo psychological/physiological -- but honestly, regardless of what the actual break down percentage-wise is, I have discovered that it almost doesn't even matter which is the culprit. The outcome is the same -- the issues are just as challenging for Dolly to overcome, no matter where they originate from.

Last week, mom's therapists gave her a CONTRACT that she needs to follow each and every day. This contract lists several important actionable items she needs to attend to every day herself. The obligations they spell out cover a wide range -- from simply making sure that she looks around the room and especially to her right side (moving her head, leading with the chin) before asking where something is, to asking her therapist to repeat a question instead of just guessing at the answer, if she forgets what problem she's working on. Mom's two largest issues inhibiting her progress are, in therapist speak, ATTENDING and IMPULSIVITY. These are pretty much what they sound like. Attending=paying attention, focus. Impulsivity= letting her impulses rule her, over common sense. For instance: Guessing at answers to questions instead of thinking about it. She also has a lot of RIGHT SIDE NEGLECT, and that is what it sounds like, as well. Paying attention to your "weak" side is "neglect", and progress in stroke victims has been consistently measured by how much or how little neglect they present. It's of utmost importance for us to constantly cue her to activate her interest and awareness of her right side.

One issue she has in droves that is not listed in the contract but that we are constantly working on improving, is the problem of her demanding or "telling" you to do something instead of asking, and also of (impulsively...) telling you to do something that you are in the middle of doing or are just about to do (or, for that matter, sometimes it is even something that she could do for herself). I'm in the habit of telling her now that "I do not respond to commands". I also say, "Could you PLEASE phrase that as a question?" (that's a good one!) and "What's the magic word?" She's getting better. Really, she is. But it's been weeks and weeks of consistent training to get her to where she is now, and she is maybe at 50% - maybe - now with improving on this habit.

I worked with mom a lot on speech last Saturday. We had incredible timing - we were just packing up a bunch of work to take with us outside when into the room walked her weekend speech therapist. It was great! I was able to watch/take part in her speech therapy that day, witness/measure her progress, and also catch her at a "good time" to possibly continue working on some speech therapy AFTER her official therapy was over. Her attitude about working and towards people/us who are trying to work with her, has certainly improved. But the roadblocks are still an enduring struggle. There is no doubt that she's working on it - but it is very hard, hard work for notably smaller gains. Sometimes it seems one step forward, one step back, too. Those days are very frustrating, but we are lucky to be able to talk about it together. So we move forward, but at a very slow, slow pace and not without our share of setbacks.

This week, we will know a lot more about mom's next steps and what her next steps for therapy will be. There are two buckets people fall into once they are through making gains in sub-acute rehab. She could be assigned "Restorative Therapy", which is a much lighter version of OT and PT. You are still making gains, but they not quick gains. I believe that these appointments are scheduled, but they are likely shorter appointments, and they are definitely much less frequent, than a sub-acute rehab program. The other type is "Maintenance Therapy", which is exactly what is sounds like: it is basically just some extra assistance at times, to help you maintain the physical level that you are at. It's not done in scheduled visits so it's inconsistent, it's done by an Aide and not a PT or OT, and it's done when the opportunity presents itself, such as help walking to the dining room for dinner. When the time comes, I am really hoping that she will be deemed suitable for Restorative Therapy. Of course, the best-case scenario is that she would be able to continue on with her current therapies as things are. One can hope, but I'm in this thing and I know what's happening inside out. I'm hoping for the best outcome given Dolly's current set of challenges. I love you, mom.

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