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.

Monday, July 20, 2009

behind the curtain

Today we learned that mom's time at Sherrill House is coming to an end. She is not progressing enough in all therapies for insurance to justify keeping her there. It's a sad truth and now we are scrambling to handle the next steps as expediently as we can, and with as much grace and dignity for mom's sake as we can.

I'm spent, wasted, tired. I think we all are. You fight and fight and sometimes, it's just not enough. That is the sad truth sometimes. And maybe it will be different six months from now, a year from now,maybe she will be in better shape then.. I haven't given up hope. No way. But we have to deal with the here and now and we have to deal with it immediately and, in many ways , divorced from our emotions about it. Believe me you just do not get through something like this without compartmentalizing. We've been faced with cold reality after cold reality. It's just numbing at times.

I realize that I have been getting frustrated with mom, trying to train her to do things for herself, acknowledge the right side of her vision, think about the question before answering after thoroughly thinking it through, ask for help when she doesn't understand or when she needs help. I know she tries, but we have just been so "under the gun" for her to continually make progress that the urgency has been showing. Every day we are, once again, in the same position- to constantly and continually remind her of the same things over and over. Just not enough progress. The call has been made.

since the stroke, there's been but a scant few times I've cracked a little in the same room as mom. When it does happen, I do whatever I can to mask it, or I leave the room. She doesn't need to see it. She's got enough on her plate. I look at it this way: I've got no business cracking in front of her. But tonight, before I was about to leave, I asked her how she was feeling. "Okay", she said. "Not great, but okay." "I just want to go home. I miss my garden. I love my garden", she said. "I just wish this didn't have to happen". I got out just in time.

Friday, July 17, 2009


It's been almost 2 weeks since this blog was updated.

Dolly is not making the improvements that we had hoped she would have made by this point.

She is stuck.

I have such high hopes for her, and she has them for herself, but she doesn't work alone. She won't try anything by herself. She needs constant reminding to do the most mundane everyday things such as changing the channel, or pressing the button to lift her bed.

Her speech therapist gave her a contract over a week ago. This contract included 'Try it yourself before you ask for help' and 'Follow directions' to just name two. She has not adhered to either of those. I fear that her Speech therapy will come to an end come Monday. She feels that she has gotten Mom to the point she was before stroke, and that her main hurdle now is her personality and ego issues. These have always been issues, but I never realized that they would be such road bumps in her recovery. She can't get over 'her way' and move on.

I dislike adding any negative post to this blog, but this is where we are right now. I want anyone following along to know the naked truth here. So, instead of remaining silent, there it is for all to see.

If you feel depressed reading this post, call Dolly. She'll tell you that her Occupational Therapist said that she is going to walk again. She'll tell you she is doing great in all her therapies. She'll tell you she is going home in a week.

Saturday, July 4, 2009

Stand. Bend at the knees.

Scott and I arrived at Dolly's while she was in her therapy yesterday. Seeing her empty bed was a bit shocking and wonderful all at the same time. When we realized she wasn't there, we searched the facility in a few places that we thought she could be if she was with other visitors, such as the dining room, sitting room, and the outside patio. She was not at any of these places. So Scott and I took the elevator to the bottom floor to the Gym.

There she was in the middle of a therapy appointment. It was awesome to see.

Kathy was with her, as was her therapist. She was doing arm exercises when we arrived, and when she was done with them, she had the opportunity to be done with her therapy for the day or to move on. She chose to move on. I was inwardly ecstatic.

I witnessed her stand up, hold a bar and bend at the knees. 10 repetitions, twice. A wonderful exhibition. I was so proud of her. The fact that she wanted to do this as an extra was really encouraging to me. I think something clicked in her brain, and she finally has some motivation. Being waited on hand and foot can take a toll on your desire to do things for yourself. It was wonderful to see Mom make a pointed effort. I really hope it continues.

Today is the Fourth of July.

Freedom has new meaning to me now. Freedom is being able to go to the bathroom by yourself, being able to transfer to your wheelchair without help, and to get back into bed when you want to without having to ask for help. Freedom is also being able to make yourself comfortable in bed without asking for a boost. These are goals that need to be met by Dolly if she hopes to resume a life outside of a rehab or nursing home. This is freedom. These are my hopes.