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 27, 2009
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.
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
Stuck
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.
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.
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.
Tuesday, June 30, 2009
Crosswords & Mac and Cheese
Went to visit mom last night at her new place. It was the first time visiting her on a weekday after work, so I had to work out the best commute beforehand. Luckily, there are several alternate routes of travel for me, because the Sherrill House is well-serviced by public transportation, so I may find that, depending on the day, and where my commute starts from, I may change up my route frequently.
Yesterday, my coworkers and I had planned to try a southern food restaurant for lunch, so I called mom at noon to tell her I'd be bringing her mac and cheese for dinner. Turned out that the restaurant was closed when we arrived, but I couldn't bring myself to make the let-down phone call. Mom talks about mac and cheese -- a lot. I know it sounds silly but I think she is really still in her food 'honeymoon' phase... which... well, makes sense, since she is always in a food honeymoon phase, as a general rule. Anyway, I knew I had to find her some mac and cheese before I visited. It was of the utmost importance - I couldn't let her down! And it had to be GOOD mac and cheese. So, after giving my coworkers the third degree on where I should go to get some decent mac and cheese en route to my mom's place, I settled on either Whole Foods, Boston Market or Au Bon Pain, which all are located in a certain geographical area within fifty feet of each other. I ended up going with Whole Foods, because I could also pick up some other stuff there, and besides, I knew they'd do a good job with the mac and cheese.
I was pleasantly surprised to arrive and find mom sitting in her wheelchair, nicely dressed. It's getting to be a normal thing to see mom this way and seeing her was a ray of sunshine. I hadn't seen her in a day, and I just had to sit down with her, look at her for a minute and smile and hold her hand and tell her how good it is to see her. It's just so good to see her after a day off. And she looked great.
When I arrived, mom was very focused on the fact that, during our visit, she would need to complete her homework, which consisted of two crossword puzzles that her Speech Therapist had left for her to do. Besides the mac and cheese, that was her main obsession of the night. I was thrilled to see her so urgently motivated to get this homework done. It was the most motivated I'd ever seen her to "work", on her own accord. I did not have to prod her to start. I do have to play the Tough Love role once we work together -- especially when she tells ME to read the clues, or ME to write for her -- my answer is always uh-uh, no way -- this is YOUR homework, not mine! That is expected, and she accepts/knows that this is HER work to do, not mine, I am there to assist her in HER doing the work. To be totally honest, when I first saw those crossword puzzles, I was a little concerned that she would not be able to complete them in their entirety. In fact, I was pretty sure that they would not get done in their entirety. But she turned out to be a bulldozer. She really wanted to finish them, and she did an amazing job. I was really, really proud of her. And I was SO happy to see some of that fire to succeed. Maybe it's something about crossword puzzles that flipped the switch for her. Dolly is a total crossword queen, so the fact that the homework consisted of crosswords may have been a big factor. But, I am pretty sure that the drive came from a combination of factors. I think she is really working hard now partially because she is seeing such progress in herself, and that is exciting to her and is really propelling her.
The mac and cheese was a hit, by the way.
Yesterday, my coworkers and I had planned to try a southern food restaurant for lunch, so I called mom at noon to tell her I'd be bringing her mac and cheese for dinner. Turned out that the restaurant was closed when we arrived, but I couldn't bring myself to make the let-down phone call. Mom talks about mac and cheese -- a lot. I know it sounds silly but I think she is really still in her food 'honeymoon' phase... which... well, makes sense, since she is always in a food honeymoon phase, as a general rule. Anyway, I knew I had to find her some mac and cheese before I visited. It was of the utmost importance - I couldn't let her down! And it had to be GOOD mac and cheese. So, after giving my coworkers the third degree on where I should go to get some decent mac and cheese en route to my mom's place, I settled on either Whole Foods, Boston Market or Au Bon Pain, which all are located in a certain geographical area within fifty feet of each other. I ended up going with Whole Foods, because I could also pick up some other stuff there, and besides, I knew they'd do a good job with the mac and cheese.
I was pleasantly surprised to arrive and find mom sitting in her wheelchair, nicely dressed. It's getting to be a normal thing to see mom this way and seeing her was a ray of sunshine. I hadn't seen her in a day, and I just had to sit down with her, look at her for a minute and smile and hold her hand and tell her how good it is to see her. It's just so good to see her after a day off. And she looked great.
When I arrived, mom was very focused on the fact that, during our visit, she would need to complete her homework, which consisted of two crossword puzzles that her Speech Therapist had left for her to do. Besides the mac and cheese, that was her main obsession of the night. I was thrilled to see her so urgently motivated to get this homework done. It was the most motivated I'd ever seen her to "work", on her own accord. I did not have to prod her to start. I do have to play the Tough Love role once we work together -- especially when she tells ME to read the clues, or ME to write for her -- my answer is always uh-uh, no way -- this is YOUR homework, not mine! That is expected, and she accepts/knows that this is HER work to do, not mine, I am there to assist her in HER doing the work. To be totally honest, when I first saw those crossword puzzles, I was a little concerned that she would not be able to complete them in their entirety. In fact, I was pretty sure that they would not get done in their entirety. But she turned out to be a bulldozer. She really wanted to finish them, and she did an amazing job. I was really, really proud of her. And I was SO happy to see some of that fire to succeed. Maybe it's something about crossword puzzles that flipped the switch for her. Dolly is a total crossword queen, so the fact that the homework consisted of crosswords may have been a big factor. But, I am pretty sure that the drive came from a combination of factors. I think she is really working hard now partially because she is seeing such progress in herself, and that is exciting to her and is really propelling her.
The mac and cheese was a hit, by the way.
Monday, June 29, 2009
The woman has her ways
I am a badass dork in my "Hello Kitty" swarovski crystal belt
My 40th birthday was this weekend. On Saturday I spent time with mom. Julie, Nancy, Nick, Scott, Matt and me planned to meet at mom's around dinnertime, so we could all visit together, and then go out to dinner and drinks. I was surprised beyond belief to find that my mom planned to surprise me with a birthday gift. And I'm not talking about just ANY gift. This is the epitome of what a gift should be -- something that you would NEVER buy for yourself but that you would secretly covet if you ever saw it! (Turns out Julie was mom's partner in crime! Thanks Julie!) I will have a hard time taking a "day off" from this present. I suspect I'll wear it for six months straight before taking a break.
Friday, June 26, 2009
We have moved.
Today, Dolly was transferred to Sherrill House. She will be in their 'Return to Home' program. We are all so happy that she 'got in' so to speak. I saw renewed motivation in her, an actual glimmer in her eyes. It was nice to see.
I spent the whole day with Dolly, with some brief times away to get some other things done. At one point she was fixated on me getting her a new shirt for tomorrow, so she sent me to Boomerangs. I found 2 shirts there that I thought she would like, and she did. She also wanted everyone to know what I spent on them....ready?...$3. I think one shirt was $1 and the other was $2. She loves that place, and I think she feels comfortable to be so close to it now. She can consider it her closet if it motivates her, that's fine with me!
I stopped by her house on my way home tonight, got her mail, and watered her plants...all 50 or so of them. While I was there, I noticed this 'art' installation in her bedroom.
The first few times I noticed this work of art, I had been focused on other tasks I had to do in her home. I remembered seeing it, but never had quite a reaction to it as I did tonight. I saw my mother in this placement of gloves, mask, scarves and pin on a workout machine. She is truly an imaginative artist.
I spent the whole day with Dolly, with some brief times away to get some other things done. At one point she was fixated on me getting her a new shirt for tomorrow, so she sent me to Boomerangs. I found 2 shirts there that I thought she would like, and she did. She also wanted everyone to know what I spent on them....ready?...$3. I think one shirt was $1 and the other was $2. She loves that place, and I think she feels comfortable to be so close to it now. She can consider it her closet if it motivates her, that's fine with me!
I stopped by her house on my way home tonight, got her mail, and watered her plants...all 50 or so of them. While I was there, I noticed this 'art' installation in her bedroom.
The first few times I noticed this work of art, I had been focused on other tasks I had to do in her home. I remembered seeing it, but never had quite a reaction to it as I did tonight. I saw my mother in this placement of gloves, mask, scarves and pin on a workout machine. She is truly an imaginative artist.
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