Sunday, November 22, 2009

Painting with Dolly

Mom works on her under-painting

Last week, we had painting time with mom. Hadn't seen her concentration this sharp since pre-stroke! We had a lot of fun.

Julie making pastel paintings

Here's what I made.

Wednesday, September 30, 2009

That's Amore

Dolly is settling in nicely now at Epoch. She moved in on Friday and complained about it all weekend. Being so close to her intense mood changes, I can easily say that her actions explain more than her tantrums scream. She has been participating in activities almost every chance she can, which is awesome. She is even claiming that the food is good now. She has some friends that she meets in the hallway, and she eats with them in the dining room for lunch and dinner. She is accepting Epoch as her community, this is great!

Today I stopped in after work to have a quick visit, and I found Dolly in the Alzheimer's wing dining room. There was a musical show. A man singing and a woman on the electric piano. I just caught 'That's Amore' and realized right away how much Mom was enjoying it. She was bobbing her head and mouthing the words, I couldn't interrupt that.

I dropped by a little later, and she was in the hallway with her friends. I sat with her there with her friends for an hour. We chatted, talked about food and the wonderful dessert they had at lunchtime. There was a bit of controversy over what the fruit was that everyone had with the whipped cream, Mom said it was cherries, Marion said strawberries, but in the end it didn't matter. The dinner trucks came, the first one went into the Alzheimer's unit, the second one went to the Sub-acute unit, and the third truck was gossiped about even before it arrived. I let her go to the dining room to eat.

They are having another show tomorrow, a folk singer. Mom said she wants to go to that, and even told the activities lady that I was 'maybe' going to come to that show, too. We'll see.

Sunday, September 27, 2009

Thursday, September 24, 2009

Some Big News

Tomorrow is going to be a big day for Dolly!

We are moving to Sharon. Epoch has an empty bed and is 1.9 miles from my house, not to mention it is basically on Julie's way to and from work. I think this will be a fantastic move considering we will be able to pop in more often to visit with her. Heck, if she doesn't like her dinner, we can bring her something else! I am very excited, and Mom is too.

Mom is also a bit nervous. I've noticed that she has finally been making friends at Sherrill House, and now she will be leaving tomorrow (it is sad). This I hope, will foster her friendship faeries to make friends more quickly than she has in the past. She made no friends at Spaulding (only staff friends), and just started making friends at Sherrill House a couple of weeks ago. She has been there since June. I am so glad that she is coming out of her shell, so to speak. I hope the friendship faeries continue to do their work when we get settled at Epoch.

I had some training on transferring Dolly today. She did very well, I did very well, I think we passed. We did a few wheelchair to bed transfers, then we went outside and did a couple of wheelchair to car transfers, John(PT) is a good teacher. I feel more confident in helping her transfer which is good, and she did a great job. She still needs constant reminding on her position, her feet, locking the chair, where to push off, and where to grab. Hopefully we can make all these motions second nature if we keep at it.

Dolly also did some hallway walking with her special side walker. She needs assistance, but really, she looked good walking. I think the carpet was her nemesis, she does so much better on smooth flooring with it. Her foot got stuck a few times in the short pile, she doesn't lift her leg, she just shuffles it. It was a good job anyway, I was thrilled to see her "GO"!

Hopefully we can make some more improvements at Epoch and get her back on Medicare for the time being. Wouldn't that be sweet?

Sunday, September 20, 2009

More Norwood Day pics!

Norwood Day!

Yesterday, Kathy and I took Mom to Norwood Day. A day that they shut down the center of Norwood and a street fair ensues. Bands, booths of information, booths of goods, food, games, and even rides for kids clog the street.

Dolly started asking to go only a couple of days ago. She has been attending Norwood day for the last 6 years or so. At least ever since the Frame Shop/Gallery opened. On Thuresday night we talked, and she started begging to go. She actually said "You're my only hope" Hahaa!...Obi-Wan Kenobi...
Mmmmm...Ice cream from Ice Jacks! Hi there, Kathy's arm!

My favorite picture of the day. Mom is center/right in the pic. She had so much fun...I think this says it all.

Mom and me yesterday. She looks pained, but she really was having a great time. She still has a hard time getting her mood across with facial expressions. We all had a great time.

Tuesday, September 15, 2009

Dolly Walks

Visited mom today, and i got to see her walk. I also had Lesson #1 in assisting mom with her walking. It was so exciting to see the progress she has made! She did well. She's walking several feet at a clip without sitting to rest- maybe 15 feet or so. I was so proud of her.

Today, I observed and was also given the opportunity to learn the ropes a bit with guidance from Susan, mom's substitute teacher. (Susan was great today, and I think mom will enjoy working with her this week.) Next week, I will train again with John, her regular teacher who is currently on vacation.

Good job, mom! Keep up the good work.

Saturday, September 12, 2009

Silver linings

I have not been posting much lately here because, for one thing, sometimes it's no fun to post when all you have to share is one gripe after another. For another thing, when there are no new developments, posting is like publicly staring at my belly button (..or sitting through a David Lynch movie. Take your pick.) Well, Dolly's progress is dragging a post out of me today. It's been a week where some small, happy things have snuck up on me and said "Boo"! These weeks don't come too often... and early on, a good week or couple days were often followed by the opposite. Nowadays I have to stop and acknowledge it here, no matter how little the victories have been.

This week, John (mom's PT) said that mom is doing well in PT, very well. I knew that she's been using a walker with John during her appointments, but he actually said that she is a good candidate for training to walk with others. This is HUGE. He invited any family to come to train to walk with mom during her appointment. I told him I'd be there Monday.

Another thing John said was that mom is being vetted to possibly (possibly... don't want to get my hopes up too high, but POSSIBLY...) get put back on Medicare B. Backstory: mom was kicked off Medicare about a month ago for lack of making progress, and we've been paying for her PT privately for weeks now. I don't know what the "B" stands for in this level of Medicare, but I bet that it's a lesser coverage of Medicare than she has been getting. Honestly, I'm just thrilled that it's even on the table at this point. Her Medicare re pick-up window is closing (early October, unless she was to have another "event" in which case full benefits would kick back in, obviously). So, if she is becoming a candidate to go back on Medicare, that is a big thing and there is not a large window for assessment. John's away for the next week, and mom will be in PT with a substitute teacher. The plan is that he will contact us when he gets back to let us know if the Medicare B is going to happen or not.

Mom has been taking part in some social activities at the Sherrill House, or says she is, and I'm inclined to believe her. Bingo and coffee/TV hours. In previous weeks, she spent most of her time in her room and reacted very grumpily when I would ask her about taking part in some of the daily social activities provided at Sherrill House. So this is a win. I am not sure how involved she has been in the activities, but she is definitely attending them and interacting with others.

Something else I've noticed that she has been paying attention to doing some smaller things for herself now. I've seen this happen a number of times, and in an unself-concious way. What I mean by that is that, at the time of the event, she clearly was making the attempt due to her own innate desire to accomplish a specific goal (non-ego-driven) and not to just put on a show for me (ego-driven). This has been one of the broader major road-blocks in mom's recovery so to see even this teeny tiny amount of self-driven desire to accomplish a task and grasp for independence is a big thing. These are just the infinitesimal daily tasks, to you and me - things that she used to (and sometimes still does) bark at me to help her with, like moving her bed up and down via the control buttons, or putting the brake on her wheelchair or even adjusting her arm. She is also eager to show off the progress she has made with her newfound abilities: standing and general wheeling. It is impressive to me. She is definitely making progress. It's slow, and it might not keep her on Medicare, but it's still progress and should still be praised and celebrated nonetheless. There are still plenty (PLENTY) of issues we are contending with --she is still very neglectful of her right side for one thing, and there are for sure other issues I'm not touching upon here. But it's been more positive than negative this week for me, and it makes me feel sort of hopeful. I praise her, and I am thrilled about all these small victories --but I have to be really careful with the way I show her this because, for instance, I praise her for pushing her bed button up and down on her own, and the next minute, she thinks she's well enough to go home and manage all by herself. (That's a good example of life with Dolly right now.)

We will be planning Dolly's birthday dinner soon. Her birthday is September 28. I think we are going to take her out to the Summer Shack, but I have to check on their wheelchair access.

Tuesday, September 8, 2009


Dolly is an artist. She is a painter. Her whole life she has been drenched in art in one form or another.

Over the past few months, I have been trying to get her interested in things that she used to love to do pre-stroke. Many times over the last few months we have tried to get her to draw. She always says 'not now' or 'I'm not ready'. Tonight, was no different with the oppositions, except...she did draw! Even while she was drawing, she was saying that she didn't want to. But she was doing it! I told her that if she really didn't want to draw, she would have put up more of a fight like we were used to. She smirked at that and kept drawing!

This first masterpiece is for my dog Rusty. She wanted me to take the picture and hang it where Rusty sleeps. I wanted to keep it in the book with ALL the other pictures she would draw. She seemed okay with that.

She drew pictures of a goose, a rabbit, and a kangaroo. Then I asked her to write on the bottom of the pictures what the animals were. She then felt that the rabbit looked more like a cat and the kangaroo looked more like a thats what she named them. She has a very difficult time with spelling. I had to help her with the correct spelling afterward, but she wrote everything on this paper in her own hand. It was also her choice to strike out the misspellings.

After the drawing, her dinner came. Scott and I sat with her as she ate a turkey sandwich with lettuce and tomato, vanilla pudding, cranberry juice, hot tea and vanilla ice cream. Then we went for another stroll, but this time, I took the paper and pens. We sat outside on the patio and she drew a picture for Ruby and Daisy, Kathy's pugs.

What a wonderful time! It was such a pleasure to watch her enjoy drawing! She spelled Daisy wrong, but I didn't have the heart to correct her this time. Besides, it is so much closer than her previous mistakes.

On an aside note, while I was gone getting some refreshments, Dolly was deep in debate with Scott over her refusal to go to a nursing home. She actually said to him "I'd go home before I ever go to a nursing home" like it's us that are keeping her from going home. Funny thing is, as soon as I stepped out of the door to the patio, the insisting she didn't want me to know what they were talking about. I was unaware until I got in the car.

Ahh, Mom...I want that, too. I wish you knew that.

Monday, September 7, 2009

Dear ____________,

Dear ______,

I appreciate that you ask me how my mom is doing. I appreciate that you have not forgotten. That you have an interest. That you care. But please be forewarned - if you ask, I will be honest. I will try to make it brief, unless you invite a longer conversation, but I'm not going to sugar coat my reply to make things less uncomfortable for you. For me, it's always uncomfortable, but that is a daily fact of life for me now. The invisible wall is down. I tell it like it is. So, if you ask, please be sure that you are prepared for my honest answer. If you are not prepared for that, then please, don't ask. I don't want you to be made uncomfortable unless you are inviting the intrusion.


Wednesday, September 2, 2009

I'm having a moment

Indulge me. Please.

I am having a moment.

Been having this moment for the last couple of days (really longer than that, but the last couple have been the roughest). The more we do positive things for Dolly, the more she fights us. She is completely against the private caregiver we hired for her, she screamed at me for about 10 minutes today about it. She is not afraid to voice her opinion. She will yell into the phone "I don't want it! I don't need it!" over and over again. I can do nothing but remain silent during these tantrums, and let them run their course. I reason with her, asking her if she would rather stare at the wall than have someone come and interact with her. She keeps saying that she doesn't know why she can't go home. She is blaming us for not being able to go home. All her roommates go home, why can't she?

I break it down for her...repeatedly. It's the little things Mom...transferring, making a phone call...acknowledging your right side...being aware of your surroundings. But she still doesn't get it. I'm not sure she ever will 'get it'.

Tonight we had an argument on the phone about all of the above, and a very key reason why she can't go 'home'. Her home is not wheelchair accessible. This is not the reason, but it is a valid reason, so I offered it. Her doorways are not wide enough, her bathroom is tiny and would need serious renovations, as well as the stairs to get up to her floor, we would need ramps. She told me in all seriousness that she could use the cellar door. I was taken aback for a minute since I thought we were having a lucid yell fest, but she was completely serious. She said that the stairs from the cellar are easy stairs, she can manage them with a walker.

I spoke to her at 10pm tonight. She still had her dentures in. I can hear the difference in her speech when she has them in and when they are out. She has lied to me before telling me that they are out when in fact they are still in (at 11pm, 12am). I question the fibs, but always let it slide. She insists that they are out when they are not out. Tonight she fessed up. She wanted to please me by calling for an aide to help her with her teeth while I was on the phone with her, it took her 10 minutes and phone coaching to find her call button.

After the lashing I got about the private caregiver, the reasoning about why she can't go home right now, and the total reality check I tried to give her about how she is really not doing as good as she thinks she is, I made her laugh. I told her "the next time I talk to you late at night and you still have your teeth in, I'm going to put a sign above your bed that says 'I WEAR DENTURES...PLEASE MAKE SURE THAT THEY ARE OUT AND CLEANED BEFORE I GO TO BED, THANK YOU'". She laughed and laughed. I was NOT kidding.

Monday, August 31, 2009

The Little Things

Tonight, I took Mom outside to sit and watch the traffic. It's one of the few things she enjoys doing. We rolled out to the sidewalk and parked in an indentation in the Sherrill Houses property brick wall. It's her "favorite spot" she says. We had the same conversation that we always have out there. The one where she says "we can go inside when the bus stops here" and I say "the bus does not stop here". Then she argues with me for a few minutes until the bus passes and doesn't stop there, but stops up the street. I show her the poll in front of her where there is no bus stop sign, and she insists that that must not have been the bus that stops here..."Let's go".

During our outing to the sidewalk, she told me that she lost her phone numbers.

Last night I called her, and right away she insisted that I call Julie to find out why she didn't visit at the precise time she said she would, and to tell Julie to call her. I told her to call Julie herself. She said she couldn't find her numbers, she said they must have fallen on the floor. I urged her to get an aide to help her find her numbers, she didn't want to bother anyone. I said "If you don't want to get help to find your numbers, perhaps you don't want to call Julie bad enough". Then she asked me what Julies number is. I reminded her that she has been calling Julie at the same number long enough that she should know it by heart. She said "1 6 1 7 is that right?" I said "That's right, what are the next 3?" She told me the next three, and the four after that. She remembered Julie's number! I made her repeat it to me, and we hung up because she had a hair across her ass to call Julie.

I called Julie about 20 minutes later. Mom called her without using her phone numbers! I guess she was so intent on ripping Julie a new one that for one furious moment she had some mental clarity.

Tonight, after we got back to the room from our stroll, I saw the phone number cheat sheet right there on her bedside table. She then told me that she found it in the drawer. I reminded her that not more than 1 hour ago she had told me that she lost it. She denied it, vehemently.

Also tonight, it took her 5 tries and 15 minutes to dial Kathy's number. Go figure.

Friday, August 21, 2009

Monday Car Ride.

Anyone who is keeping track will know, we are not on any financial assistance anymore. Medicare is finished paying for Mom's stay until they see some more improvement. At that point we can possibly get an appeal, and have them start paying again, but for now...we are on our own.

On Monday, Julie wanted to take Mom on a car ride. I was all for that. We got an aide to help get Mom in Julie's car, and we buckled her in! What a wonderful time she had.

We drove down Commonwealth Ave, to the Public Garden, and around the Boston Commons. As we drove, we decided to pick up Kathy at a close T station and drive her home. This proved to be a little too much for Mom. We circled the Boston Common about 4 times until Kathy emerged from the Park Street Station T stop. She was coming from work and just wanted to be a part of the first outing of Mom. On our way to drive Kathy home, Mom got car sick. I felt horrible, not just for the fact that she got sick, but for the fact that I just wanted to do something nice for her, and she got sick. She got sick again after we dropped Kathy off at home. Damn, but what a wonderful time she had regardless. She can't stop talking about it, and can't wait to do it again.

Even with the carsickness, she had a great time. I think we over did it, it was an almost two hour drive all tolled. Kathy got home fine, we got back to Sherrill House fine, although we did have a little snafu, when after we got her back into her wheelchair it looked like her right (weak) ankle was injured. An x-ray the next morning proved that everything was normal...thank gawd!
Julie is planning to take her on another road trip on Saturday. I hope I can be present!

Wednesday, August 12, 2009

Update, Wednesday August 12

If you have been reading this blog with any regularity, you are probably surmising that we are wrestling with some big situations right now with regards to mom's next steps and long term care, and you would be correct. I am not going to sugar-coat it; things are tough right now. Mom's therapies are ending this week completely. She is not progressing at this point. That is not to say that she won't make further progress. It's just that, at this moment, we are in the middle of figuring out our next steps for her and, since her physical therapies ended last week and her speech ends this Friday, she is in the interim where she is receiving no physical therapy right now while we figure out what private therapy we can get for her and get a schedule started up for that.

Today we will hear the assessment of mom's situation from our independently-hired Geriatric Care Management Team. I may not be able to attend the conference call (I have a training appointment tentatively scheduled for the exact same time, with mom's speech and physical therapy team at Sherrill House -- they invited us to have a training since mom's professional therapies with them are ending, so that we can help her to maintain and continue what she has learned.) The meeting with the team is at 3 on a conference call. They will report to us what they assess to be the best case scenario for mom's recovery, what the most realistic picture will be, what mom's wishes are versus what the realistic picture is, what we might be able to expect, and a detailed plan of action for mom's care and living situation. All of these things will take into consideration all the large picture aspects as well as all of the small details. This is a very big deal - these are people we have independently hired as advocated for mom's care, so they have no bias, no Medicare leaning on them, nothing. They are here for us so we anticipate an honest and real assessment of our situation and what steps we will take to bring the situation to the best possible state.

As for mom, I'm having a tough time lately with mom. She just does not understand why she cannot go home. It's heartbreaking and extremely frustrating. She says she can do things by herself, but she can't. She barely even looks to the right half the time. She still asks me to do things for her when I am there. We are in a very painful situation here and there is just no prettying it up. I worry that mom will make no more improvements. I know partly (...maybe more than partly) it is her own attitude/personality that is getting in her own way and this is killing me because it is dire situation - the time is NOW. There IS no waiting until tomorrow. It's maddening. The thing is, she knows -- at least she knows for a minute. But she simply cannot control her compulsions to continually engage in bad habits of communication. This makes it basically impossible for us to help guide her toward the improvements she needs to make in order to attain any independence. I wonder if she is simply incapable of making the changes that she needs to shore up these improvements. I am facing the facts that it is entirely possible that this is the case. Many of the signs do point to that possibility as an eventual reality. Sigh. Only time will tell. And, to be honest, the hourglass is running.

Hopefully we will have more information once the Assessment is complete. Stay tuned.

Saturday, August 1, 2009

Good food, great company. Next step.

Physical and Occupational Therapies are done. Medicare will not cover these anymore since they are not seeing the improvements they need to in order to keep paying.

Speech however, is giving Dolly another week. Yay! So very pleased!

So, Medicare will cover another week of Moms room and board and Speech therapy, and then it's kaput....for now. We are hoping that she will still make more progress. Progress enough for Medicare to pick her back up again in the very near future. But as of 8/7 or 8/10 we will start to pay ourselves.

Kathy and I had dinner with Mom tonight. Kathy went to Whole Foods and brought a smorgasbord of delicious food for us to share. Yummy! We had an excellent visit, we ate, talked, schmoozed and rolled around the facility. We even shared a blueberry pie... it was delish! Later, we went into the empty dining room where Kathy tackled the most massive matt in the back of moms hair while I did some simple math with her and the 'repeat after me' exercises. I believe she is getting better at these exercises. We also had talks about listening and comprehending and the fact that she has a problem with attention. I think she gets it, but then of course it fizzles away in the next minute. We are all taking baby steps here, even us as the teachers, she is mentally fragile and has a hard time remembering to focus on the context of the words and their meaning, instead of the actual words. We did some practice on that, too. I made her repeat something I said 30 seconds later, in her own words, and she passed! But, later, she couldn't remember what that was. It is still frustrating, to say the least, but I do see a light at the end of the tunnel. I still have hope.

We have hired a Geriatric Care Manager (GCM) to help us with Mom's needs and the execution of said needs. For now, she has no more therapy besides the Speech (ending in another week). The GCM will set up some outside therapies that Medicare will not pay for as of now. I feel wonderful making this decision to get the help that we are losing. They will also help with doctor's appointments, advocating for her, and anything that she needs or will need to get better. Ultimately, they will be her voice. One great thing about the GCM that we chose is the fact that she had worked in the very facility that Mom resides in for 7 years. She knows the staff, she knows the ins and outs of the facility, and she had some great chemistry with Mom.

We have the assessment scheduled for Tuesday, I will be there, and I hope it is lengthy and thorough. She needs this at this point, I can't think of a better way to spend money than for her care and wellbeing.

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.

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.

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.