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.

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.

Monday, June 22, 2009

Commercial break

Having a parent who has suffered a massive stroke has its, well, non-negatives. Hey, I'm a glass-half-full kind of girl. For your amusement here is my list of...

Benefits to having a parent who has had a massive stroke

• People who you run into on a regular basis that routinely complain incessantly about their own problems will suddenly have absolutely nothing to say to you anymore. (Isn't that great??)

• If you've ever thought "I'll just DIE if anything like this ever happens to my parents!" you will discover that, NO, you will not instantly keel over and die. You may really *feel* like it sometimes, but, as a general rule, it is NOT something that happens automatically. Joy!

• If you've ever secretly harbored the desire to win the lottery but you don't play because you are simply too practical, you now have two perfect reasons to start.
1) We have found scratch cards to be a very popular activity with our subject, so it stands to reason that others in her situation may feel similarly.
2) The projected possible cost of care to your parent is a very motivating factor to win. As for the odds, you will find yourself having a much more positive attitude about the possibility of winning the lottery now than you ever had before. Karmically, there's no question. And, you could definitely *use* the win, of course. As for the scientific or numeric odds, think about it this way: your parent has had a massive stroke. (And lived!!) What are the odds of that?

• Everyone will tell you how impressed they are with you. While privately, you may be thinking, "Well, what the hell would you *expect*??", it is still a very nice ego boost, nonetheless. :)

• You've officially earned daily escapism time. You now have an excellent excuse to allow yourself to watch all those TV shows that you either limit, or simply refuse to watch at all, because you don't like to "cloud your mind with crap". Now is the time. Go cloud your mind with crap. (That is, when you are done taking care of your parental business, or spending quality time with your parent, of course. Priorities.)

• Lots of people might stop coming by your desk at work. Don't take it personally. Some people are just awkward, or simply don't know what to say. That's okay! This is a free pass to focus on your work distraction-free. Your co-workers will come back eventually. (Put out a dish of M&M's if you start getting lonely.)

• You will quickly find out what you, yourself, are made of... And you TOTALLY kick ass.

Neuropathways and movement

My friend Marsha gave me a link to this website about Neurofeedback. I found this article which is very helpful in understanding how to get the brain to react to passive movement study in stroke.
It focuses on what is going on in the brain when passive movement of the weak muscles are manipulated by someone other than the muscle owner. It is completely written in doctor talk, but with my current buddies being nurses and nurses assistants, I thought I would read it until I understood what it says. I 'got it' after three reads.

My interpretation and thought: Gotta get those homonomous alpha motor neurons to discharge and produce reflexes and ultimately get her neurons to re-wire. It's tough to keep reminding Mom that there is nothing 'wrong' with her right side, she just needs her brain to realize it is there, and to move it.

My next visit with Mom will have a lot of passive manipulation of her arm and leg...as much as she can deal with that is.

Sunday, June 21, 2009


Late last week, I called several sub-acute short term skilled nursing facilities, spoke with admissions people and either made appointments or learned the tour policies for our visiting day on Saturday. We only had one day to do hit the facilities and we had to make the most of our time. I was hoping that we would have at least one major contender by the end of the day. Having never toured a skilled nursing facility before, and now being in a position of vetting them for mom, I've collected some really helpful tips over the past month from several kind and generous people that we've met.

Don't tell them when you are coming. If you already did, you can always call and "cancel", then show up anyway. Or, keep your own appointment, and then have another family member pop in unannounced at a later time. Also --  if, for instance, you call on a Friday, but they can't give you a tour until Monday, that is not acceptable. Off the list.

Open-door policy is a good indicator of a well-run facility.
After our visits, I noticed that the places which had the open-door policy regarding tours were the places I got the best feeling about over the phone before even visiting. Then, after the visit, they turned out to be the places that I felt were the most clean, organized and pleasant.

Other things to consider...
• Is there a pleasant place to spend time outdoors on the grounds? Are family pets allowed to visit?

• Find out how many nursing staff per patient ratio (days, nights, weekends). Similarly, find out the Doctors' and/or Nurse Practitioner's general schedules. Find out the titles of the people who are on the Care Team of each patient.

•What condition are the gym(s) in? How many OT's, PT's, and Speech Therapists are on staff? Do they have staff therapists, or do they contract out the therapists who work there? Make sure to see the gym and the equipment.

•Ask about the meals everyday, what the alternates are. Ask to see a sample menu.

•Look for the OT/PT/Speech appointment board plans for patients. Look to see how often they get each therapy. Ask how long each appointment is. Ask how many days a week therapy appointments are scheduled.

•Ask about pet programs, music therapy, and any other extracurriculars or extra services (such as beauty salon) that may be available.

•What are the facilities' affiliations and accreditations? Do they serve as a clinical site with hands-on learning, for any universities or schools? In what other types of learning partnerships or other programs are they involved?

• Do the people who work there seem happy and well-adjusted, or disgruntled and grumpy (or even gossipy)? Is your tour guide pleasant and helpful and with a smile, no trace of defensiveness? Your tour guide (the Nursing Supervisor, often) is under the microscope, sure, but this is part of their job. They should welcome the opportunity to show off their facility for you and answer any and all questions you may have with a smile.

Ask as many questions as you need to. If your tour guide cannot answer your questions, they should be able to speak to the proper person to find out the answers for you.

And last, but in no way least... here is one of the best pieces of advice I've gotten to date. So simple, but oh, so important...

• If it smells, turn around and leave!!!

The next step.

I arrived at Spaulding today in the middle of mom’s lunch. Dolly was sitting in her wheelchair, a towel draped across her chest, with her table positioned in front of her loaded with wonderful food. She had visitors, too. Kathy, Matt and Gail (Matt’s mom who had a stroke about 6 years ago) watched and talked to her as she ate. They were all deep in conversation with mom who was talking with her mouth full when I arrived. I don’t know why this is still an issue for me, but I seriously don’t want her to aspirate, so I guess it’s my job to keep telling her ‘don’t talk with your mouth full’. We all talked for a while, then Matt and his mom went shopping, and Kathy and I stayed for just a few more minutes before we started our tour of sub-acute rehabs in the area. We visited 5. Two of which were nixed pretty much as we walked through the doors.

I believe we have a wonderful contender for mom's next step in the form of the Sherrill House in Jamaica Plain. Out of all the sub-acute rehabs that Kathy and I visited today, the Sherrill House was by far the best. We have two other contenders that are second choices...perhaps they tie for second. The Coolidge House in Brookline and the Neville Center in Cambridge. These two tied for second and are both clean and actually focused on rehab, and we had nice visits in each. My vote is for Sherrill House though. It really stuck out from the others. The rehab room was really big and had a lot of equipment, the hallways were very wide, the rooms were big, and the staff seemed wonderful. They even had some nice outdoor sitting areas that other facilities did not. Sherrill house also has a wonderful art program. There is original artwork in all the common areas. I love that! Not just crappy art either, good art, art that makes you want to look at it, nice colorful art, in all mediums.

Visiting the Sherrill house, the Coolidge house, and the Neville Center, solidified our conclusion that we visited a couple of really awful rehabs in our efforts. I won’t mention the names…but I can say they were ‘depressing’ to say the least. The great difference between a sub-acute rehab and a nursing home is the gym, the amount of therapy that the patient can receive on a daily basis, and the amount of nurses and aides per patient per floor. The Sherrill house seems to go above and beyond in all these key features.

This new adventure will hopefully be inspiring for Mom. I cheer her on, try to get her motivated, but I feel like she is too comfortable at Spaulding. Hopefully when she moves to another facility, we can change her outlook on her recovery...get her to work harder. I want her to succeed in getting as independent as she can possibly be. I know she can get there…she just needs people to push her in the right direction.

Friday, June 19, 2009

Processing progress

Reading Nancy's post helped me put my own feelings about yesterday in perspective. I now find myself at a point that I might need to readjust my own expectations of Dolly for the moment.

Wednesday, I spent most of the day at Spaulding with mom. I arrived at 10:45 am (after an impromptu doc appointment of my own) and I was frustrated that I may have missed much of her therapies. (Two of them, speech and physical, usually happen in the morning). Happily, this was not the case. I was lucky to get to see about 20 minutes of her speech therapy. I finally met her speech therapist Molly, too. I then got to observe her PT appointment (and even help a few times). I was also in on her Jeff (OT) appointment. I was able to speak with all of her therapists one-on-one yesterday, at one point or other. I asked them to give us "homework" for Dolly, since, when one of us daughters asks her to "work" with us privately (off-the-therapy-clock), she says she is too tired, "not now",  or voices some other strong objection. Since she basically does everything the therapists ask of her to do (though sometimes, begrudgingly),  I know that she'll do her homework with us, if it is specifically doled out from them.

Next Wednesday June 24th is Dolly's release date from Spaulding, and it's coming up very quickly. We have not chosen a Skilled Nursing Facility for her next steps as of yet. It was important that we meet with mom's Case Manager to discuss things in more detail about mom's case, as well as how her Team feels she is actually progressing (or not, as the case may be), before doing so. Yesterday was the perfect opportunity to do that since both me and Nancy could be present. There were many questions I needed answers to, and I needed to understand the basis on which they make some of the decisions they are making about Dolly's care. The Case Manager was very helpful in this regard and I now have a much clearer understanding of all of the intricacies about how they rate certain things. We are now armed with more knowledge about what we need for mom's care, and a list of contenders. Nancy and I will go on a tour of them on Saturday.

Yesterday, I became very aware of my need to re-evaluate my own expectations for Dolly's progress, because some things about her recovery and current limitations (whether they turn out to be short-term ones or permanent ones ) are finally becoming much more clear to me. Some ways that Dolly communicates, reacts, general abilities or refusals to perform certain tasks that I have noticed over the past couple weeks, I'm now seeing these as possible things that may not be restored as quickly as other abilities, or not fully, or maybe never will be at all. Though I honestly bristle at the thought of ever setting any limitations on mom's recovery in my own mind, there is a fine line between being honest and objective about what's on the table in front of us, what we are working with -- and with being beamingly hopeful for mom. But pragmatism comes very naturally when you see her, her accomplishments and her limitations, the baby steps and the slip-ups in front of you regularly. Of course, mom is still in the very early stages of recovery. I'm processing her progress thus far, and how quickly or she gains ground in some areas, and not in others.  But, in terms of time passed thus far, we are now far enough removed from the actual event that we can now form a new perspective on the journey of her recovery based on our own actual experiences with her over the past month. So much still remains to be seen, but we now have some ground under our feet on which to look back over. I keep telling myself that this is a marathon, not a sprint. We just have to remember that and to work through each day and each moment as it comes, without going bananas.

Thursday, June 18, 2009

One month after the stroke.

Yesterday was not a good day. I should say that yesterday was not a good night, since I got there too late to see any good stuff.

After yesterday, I have realized that I need to relax and not get overly excited or terribly down about any phase of Mom’s improvement or lack thereof. The highs have been great, but the lows that ultimately follow are just so painful. I have to train myself to be inwardly indifferent or else I will surely lose my mind. Outwardly, I am proud of her accomplishments, and I root her on just like she won the lottery, but I am learning that I must not blow that bubble up too full because it will burst.

My visit today started with the second half of Dolly’s OT with Jeff. I watched her struggle with getting a shirt off from over her head. She never quite made it. Seeing her like that for several minutes was a little bizarre. I secretly wanted to jump over and help her, even though I am always telling her that she can do things on her own. She did well getting back into her wheelchair with Jeff’s help. She even positioned herself farther back into the seat with some words of encouragement.

When we returned to her room, she stayed up in the wheelchair for a little while, then got put in her bed for the removal of her G-tube. Oh happy day! No more tummy tube! The nurses and the doctor all said that she barely even winced at the removal, only yelled “Owww” and it was over. Her puncture site did not leak after she ate dinner, and there was no bleeding. Yay. Some good news.

After the G-tube removal and dinner, Dolly got back into a wheelchair. Kathy and I took her downstairs to get a cup of tea and outside for some sunshine and fresh air. She didn’t last too long out there. We walked Kathy to the skateboarders section of the walkway, and sat there for a little while before Kathy walked herself to the subway station. It was a beautiful sunny day today. First one in quite some time, but the sun was low in the sky over the Charles at this point, and we forgot to bring her hat and sunglasses, Mom and I only stayed outside for about another 15 minutes.

Dolly got confused tonight as Souhila tried to ‘dance’ her back into bed. She couldn’t remember how to stand. I quickly realized that Souhila was having trouble getting Dolls to use her left leg to support herself as she was trying to help her into bed . I have seen this ‘dance’ many times, but this time, Mom forgot how. Souhila and I both vocally coached mom, while Souhila hung onto her for dear life, but she didn’t understand. I asked her to use her left foot and press it on the floor as hard as she could, which is the usual way I root for her, but she would lift her foot off the floor instead. These types of ‘moments’, I have been noticing more and more since she has been making other improvements.

I worry about her desire to become independant, but I also keep in my mind that she had a massive brain injury, and her wires aren't firing right just yet.

Monday, June 15, 2009

Monday, June 15th

There was some noticeable improvement today. Although small, I was so happy! The moment Dolly saw Scott and I in the hallway approaching her room, both her eyes opened up and they stayed open the entire time we were there. She never did her 'Popeye' look while we were there today. She is so much prettier when she's not keeping one eye closed all the time. We took two small chair trips tonight, too. One to the sitting room at the end of her hallway, and the other to the lobby where we sat for a few minutes in a sitting area.

Also, I may have seen her right leg move. I say 'may have' because I'm not really sure if the movement was caused by the rest of her body shifting or if she really did move it on her own. She claimed that she moved her hand and leg a little today in therapy. I asked her to show me, and she couldn't show the arm, but the leg I know I saw move a little. Reflex? Inertia? I hope not. My spirits are growing with these new improvements. I hope there is much more improvement tomorrow.

Saturday, June 13, 2009

Laughter is the best medicine

Nick and I went to visit Mom yesterday after work. I've been a couple times this week but it never feels like I'm there enough. I make a point to talk to her like I used to; telling her about what's going on with the shop, talking about the dogs (hers and ours), asking her questions in a "non-test" sort of way: "did you already plant your basil?". She's doing pretty well. But there are 'things' that seem confusing.
She laughed out loud two times last night! I can only imagine it's like watching your child develop. It's delightfully interesting, although I wish it weren't under these circumstances.

Today Mom had her first visitors (other than family, although I would consider them family). It was really nice. I found myself investigating their faces to see if they felt uncomfortable, if I sensed a thought from them on how different they felt she was. They were as attentive to me as they were to Mom. Just an interesting observation. 

Mom laughed out loud again today. It's so sweet to see. We watched cooking shows and I hunted down a cup of custard for her, twice. 

Her right arm was very cold all day. I massaged it and the nurse checked her pulse twice on that side reporting that everything seemed okay. He gave her more blankets.

Thursday, June 11, 2009

Chicken salad and banana

Visited the Doll after work tonight. It was so good to see her. Hadn't seen her since Monday due to my run-in with some bad cherries I ate on Monday night. (You know, I'll be 40 this month and I've never had food poisoning in my life until now. That's one I can now cross off the list -- ha!)

Dolly's sounding better and better, more like her old self it seems, in voice and in how she puts words and thoughts together, every couple of days. It's fun to encounter the changes. Sometimes they take me by surprise. I see her a lot (except when I am keeping over and puking my guts out from bad cherries) so it might be that I pick up on all the little nuances that might not be noticeable to some one else. But it's thrilling when you see a new baseline in her speech, or, for that matter, in anything else.

Speaking of which, Dolly is officially on some -- drumroll -- solid foods now!! This is a very exciting new development. Today she had a banana and some of a chicken salad sandwich. Tomorrow I think they will be serving her complete meals of solid foods. Not solid like a steak, but solid like egg salad sandwich on soft bread. But that's perfectly great in my book! Baby steps!

Today, as all of my weekday work days are, now that I am back to work, are now "short days" for my visits at rehab. Weekends, I will be spending much more time there. And then additionally, on Wednesdays for the next month, I will be able to spend the entire day at Spaulding and attend all of her therapy appointments. I am really, really looking forward to this Saturday's appointments and next Wednesday's appointment to see how she is progressing with Physical and Occupational Therapies. (Spaulding doesn't have therapy appointments on Sundays, but we are planning a fun outdoor visit time with daughters and granddogs, so she will be sure to get plenty of stimulation on her "day off".) She tells me what's going on during her daily appointments, but there is really no substitute for being able to see for myself how she is progressing and talking with her team.

Tuesday, June 9, 2009

Tuesday, June 9th

There is not much new to report on the Dolly front. She continues to eat, which is wonderful to watch. She has not been fed by the tube since Sunday late, or early Monday, I don't remember which. Her feeding tube still gets a workout though, the nurses have to measure her stomach contents throughout the day. Not a pleasant procedure to watch. Hopefully they will remove the feeding tube as soon as they are satisfied that she is digesting properly.

She is using her neck to turn her head more, this in itself is a small victory. She turns to the left quite naturally now, although I still have to ask her to turn her head to see her right side. Scott was sitting on the bed to her right today and when she motioned for Scott, she motioned behind her, towards her back.

I had a meeting with the Care Coordinator this afternoon. Dolly's ETD from Spaulding is June 24th. Huh?? I know!! A short 2 weeks from now. Scott and I had another pep talk with her, explaining that if she makes more progress she will be able to stay longer and get stronger. I don't really believe that she fully understands. I have noticed since she has started PT and OT on a daily basis, that she likes to rest the entire balance of the day. She has not even been shifting herself with her strong side. At first, she amazed the doctors with how strong her left leg and arm were, now, she doesn't even use them to get comfortable. This worries me to no end.

Sunday, June 7, 2009

Sam and Dolly

Mom was so excited to visit with Sam and Dave today. So incredibly excited, that she got Kathy to take her outside before Julie and I arrived. We were in separate cars, but both experienced the same horrendous traffic as soon as we hit the edge of Dorchester. We inched along the expressway until the traffic eased up as soon as we hit downtown Boston, go figure.

Kathy and Mom had been waiting for us outside for close to an hour. I felt horrible that we were not there sooner. Her window of attention is not what it used to be, and the dogs were so interested in the new surroundings when they finally got out of the car. Dolly kept saying that they don't remember her. Especially Sam, she was feeling down that he didn't remember her. I know he did, but she does look different, and her speech is not what he is used to just yet. We will try again with the dogs next Sunday.


The last two days with Dolly have shown a lot of progress. It's amazing to see her accomplishments, to see where she was -- even just a week ago, never mind two and a half -- and to see her now. She has a long, long way to go of course, but it is now clear that she is already working very hard and has a lot of determination and desire to make progress. She is speaking a little clearer, and she's even sleeping a lot less. Her rest time now needs to be more scheduled due to her three daily therapy appointments. Now that she can sit in a wheelchair, we are starting to try to plan things we may want to do with her - such as go outside for a short walk - around the times when she is already in the wheelchair, such as after occupational or physical therapy appointments (provided that she is not too tired). While Dolly still is very tired as a regular thing, lately much of the time, her desire wins out and she allows us to keep her up for awhile longer to wheel around outside. As time goes on, she will probably develop a higher threshold for staying up than she has now. But as a regular thing she will likely always get tired a lot quicker than non-stroke survivors do. It's just a side-effect of stroke.

One thing I have noticed is that, when tired, Dolly cannot make thought-to-word connections very easily. Yesterday she had speech therapy when she was very tired. I think she would have done a lot better had she been well-rested before the therapy. This cognitive disconnect is something she will be able to work on long-term. She is aware of the issue and is motivated to improve. I think it's a victory that we have even gotten to the point where she understands the challenge and has the desire to work on it.

Food has been a big motivator for Dolly. She has started on complete pureed meals, 3x a day. When there is a possible time conflict, she chooes to eat her delivered meal right away, rather than take a nap now and eat the meal later. Food comes first! It's such a pleasure to have her eating. It's a long way from where we've been and I know we've said it before, but food is a HUGE thing. A grateful as I am for it, I can now allow myself to get excited for the day when we kiss that tummy tube good-bye.

Things are feeling more positive since earlier this week at the hospital (before we moved here to Spaulding). I can tell through Dolly's attitude that she feels like she is finally on the mend, and seeing and interacting with her now is a much more sunshiney experience now - she is more engaging, conversational, talkative and her personality shines through a lot more. In my world, that means our regular "mother/daughter dynamic" is back in full swing, which is GREAT because although she can be bossy and stubborn, I'm so glad that she is feeling well enough to be bossy and stubborn... and in the end, she always listens to reason, anyway. ;)

Today, Julie is bringing Dave (her doggie) and Sam (mom's doggie) to visit. Mom is really excited about it, and so am I! She has not seen Sam since her stroke so this is a big thing.

I go back to work tomorrow, almost full-time: I will be working four days a week and then will be able to spend one full day a week at Spaulding when I can attend mom's therapies and talk to her team about her progress and next steps for mom. I'm looking forward to getting back to work, and I also feel like this is good timing. Mom is in a better place now. She will be very busy throughout the day. She can speak clearer to better communicate with the Spaulding staff. She is, in many ways, more communicative now -- so she will be able to be a better minute-by-minute advocate for herself when myself or another family member is not there. I am happy with Spaulding and I feel she is getting great care here and making progress, so I'm mentally ready to shift my own focus as well to accommodate other things.

Speaking of which, when Dolly had the stroke, I was on a planned week of vacation time, so that week was spoken for. But then, I was able to take the following two weeks as vacation time with only a couple days' notice. My manager and the rest of the team have been very supportive. I am very fortunate to have a working environment with people that are so accommodating and flexible when a life event like this happens and turns your world upside down.

Friday, June 5, 2009

Wonderful Day

I was able to arrive early enough to witness Dolly's Speech and Swallow Therapy and her Occupational Therapy today. She blew me away during both hours which took place back to back. At the end of her OT hour, we got to take her outside, on the cafe deck. She really enjoyed being with Kathy and I outside of her room and out of her bed. It was a short jaunt outside because it was cold and windy and drizzling a bit. We looked at the edge of Cambridge from the edge of Boston.

After we were back in the room and Dolly was settled, she got a meal delivered. Her eyes lit up when she saw it. A glorious meal of broccoli, mashed potatoes and chicken with gravy. It was all pureed, and she kept referring to it as the best baby food she ever ate. She was expecting applesauce, vanilla pudding and cranberry juice. Her meal also arrived with pureed chicken and rice soup, and pureed fruit cocktail for dessert. She was in heaven. She enjoyed it so much, she kept saying how good her baby food was. She kept repeating how good the food was, we had to remind her that her swallow is not the best, so 'NO TALKING WITH YOUR MOUTH FULL" She barely listened to us as she ate her meal all by herself.

What joy!


Often when I am combing out mom's hair, I'll float out the idea of a hair cut. Would she be open to it? Usually, she says no. I don't push the issue. Last Wednesday, when I was combing her out and her hair had become particularly knotty, she brought it up. She said sometime. Maybe not today, but sometime. Then she said that she wanted it to be her decision. Now, I'd never cut Dolly's hair without her permission. But the fact that she voiced that she might be open to it, but that it would have to be her decision, said volumes to me. It told me that her hair is one fragile but tangible connector to the person she was before the stroke. It told me that she suddenly has very few choices she can make for herself, and this is one that she would be holding onto with a sense of purpose until the time comes that she is comfortable to change her own mind about it for her own reasons. Why she didn't want to cut her hair right now, and why it needs to be her own decision if or when it happens, suddenly made all the sense in the world to me.

I went over mom's newly purchased clothing items with her today. When we got to the sneakers, I told her I got two pairs and she could choose which she liked. She said she didn't need a choice,but her eyes told a different story. I could tell that she had gratitude for being given the decision to make.


Today (Friday) will be mom's second complete day at Spaulding. Today she will start her therapy programs. Yesterday (Thursday) was her assessment day. I was not aware of what her schedule for the day would be, so I did not plan to be present for any apecific therapies. I just wanted to get there at a decent time in the morning so I could be ptlresent, meet her team as they milled in and out and just spend more quality time with mom.

I got there at about 10:20 am, and mom had already had her Speech and Swallow. She had accomplished a lot - she ate a container of applesauce, a 'big thing' (her words) of (thickened) orange juice, and an Arrowroot cookie. She is now scheduled to eat once a day at lunch time, with the S&S therapist. She will remain on her tummy tube feedings as well, until further notice.

I arrived during her Physical Therapy. The folks at Spaulding are very happy to have family around and they look to family to be an important part of the recovery process so I didn't feel like I was interrupting anything today (even though I feel that in the future it will be important for her to have therapy without a family member there, to help her gain sense of independence and to keep from being inevitably distracting to her). Mom's PT was a really nice woman named Jolyn. Today she concentrated on helping mom with right-side awareness and balance. Because mom can't utilize her right side, she needs to learn to control her entire body balance and movement with her left side. She did this exercise sitting up. Then, Jolyn, her assistant, and mom got her into a wheelchair. That was exciting because it was mom's first time with the wheelchair. I was desperate to comb out mom's hair so I was thrilled that Jolyn wanted mom to sit in the chair for at least a half an hour. Mom was a sport and allowed me to finish her hair even though, by the end, she couldn't wait to get back to bed.

Jeff the Occupational Therapist was our next visitor. His assessment was more focused on things mom could do while in bed. There were few physical tasks for her to perform, and then lots of questions - many of the same questions mom has been peppered with for the past 2 weeks by all of her doctors. Sometimes, when mom is really tired, she gets some of the easier ones wrong. (This try, it was 1940-something instead of 2009, even though she may have answered 2009 just a couple hours before. When she is tired, all bets are off.) Mom did okay with Jeff but clearly she was exhausted. Jeff made a note that Dolly should not be scheduled for back-to-back therapies and should have some recovery time in between her therapy blocks.

Jeff said that Dolly would need some comfortable clothing and sneakers (preferably with Velcro-closures) for her therapies, so I decided I'd go to the nearby mall and pick up those things for her when I left for the day.

All in all it was a good day. Dolly is much more at ease here than she was at Brigham's, which of course, makes sense. She's still sleeping a lot a lot, which is not really surprising I guess, but I'm looking forward to even a tiny turning point with regards to her constant sleepiness and tiredness. I'm keeping my eye out for progress and I will ask her team about it when we might expect to see a small shift.

The Spaulding grounds

Spaulding has wonderful grounds with the Charles River and all the critters that go with it. I can't wait for Dolly to get outside.

Doll face will be throwing breadcrumbs at all these geese when she is ready.

Thursday, June 4, 2009


Called Spaulding twice tonight. First time to check in and see how she's doing, second time because I remembered that she needs to wear those leg compressor balloon thingies for patients at risk of leg clots, and she didn't have them on when we left today. They have to order them, so she won't have them til tomorrow. Another thing to worry about. I'm driving myself crazy with worry. I'm worried about her pacemaker healing properly. I'm terrified some nurse or assistant will raise her right arm unknowingly. I want to put a big sign on the wall above her bed: "PACEMAKER HEALING -DO NOT LIFT RIGHT ARM" but I imagine that might come off as insulting to the staff (understandably so). I worry that Dolly doesn't get help as soon as she needs it when she has to 'go to the bathroom'. Then I worry that they might miss a spot when they are cleaning her up. I worry about the little things she's being treated for - things that for a normal healthy person aren't more than a nuisance, but for mom can become chronic nagging problems and, at worst can become serious, life-threatening complications. I know, I know. Seemingly irrational worries. But that is just the tip of the iceberg. And, now that she is at Spaulding, I worry that Dolly won't be able to perform the required three hours of rehab a day. I hope and I pray she will. I believe she has the will to, the strength of mind to. I just worry about the possibility of her body not being able to do what her mind asks it to.

Wednesday, June 3, 2009

Back in rehab

Doll face was moved back to Spaulding today. We are all breathing a sigh of relief for that. Her bed was taken during her absence, but she got into a different room. She starts her schedule tomorrow. The people who work there are wonderful. Her first nurse on duty tonight was a treat. A funny lady with a wonderful outlook, she made us feel like we were queens of the castle.

Dolly was not too talkative today. She seems to be mentally absorbing the gravity of her situation...finally. I believe it has got her down a bit, and there is no blaming her for that, not one bit. She told me all the food that she wants when she starts eating again. She wants red jello, vanilla pudding and applesauce. This gives me even more impression that she is totally there mentally. She told me that Scott was bringing her a pizza the other day. She knows what she will be able to eat when she starts. She is a smart lady.

Random observations # 2

Elevators make me car sick.

Nurses and nurses assistants do work that is different but that is in no way, shape or form any less important than the work that doctors do.

I now know what telometry is, as well as numerous other terms and medical concepts that I never knew I'd be in the position to understand.

There are some conversations that you never want to have to have with your mother. But sometimes those are the most important conversations you'll ever have to have.

Random observation #1

Sometimes - often, really - the bus driver does not punch my 10-pass card. Every non-punch saves me another bus ride. This makes me wonder if they know why I am taking the ride.

Tuesday, June 2, 2009


As incredible as Kathy's last post is. I have some news that she forgot to add.

Dolly laughed today! She really laughed! Twice!

The first time it was when Kathy was giving me the overview on how well she passed her swallow test. It was the applesauce again that caused the smile, I turned to her and said "you're smiling!!" She kept smiling and I was smiling, and Kathy was smiling. My smile morphed into laughter by such wonderful glee I was feeling. I stared at her and laughed, and I kept saying "you're smiling, I can see you smiling" and she started laughing, too!

The second time she was being re-positioned by the nurse on one side with Kathy on the other. I stood at the foot of the bed and just took in the sights. The nurse was telling Kathy which part of the many under sheets to pull (what...are we new here?) and my mother raised her left hand to help, I think she was trying to grab the right side handrail like when she wants to turn to her side. She almost got a grip on the nurses nose. I saw her realize what it was that she was reaching for, and when it clicked, she opened her eyes wide and I think I saw a giggle in her eyes. I started laughing, then she was laughing again. I think I laughed so hard and made such a ruckus that the whole wing must have thought we won the lottery.

I am noticing little things that Dolly is starting to wonder about. Tonight she asked me if I was tired. I was taken aback for a second, because it is always us asking her things, I decided to tell her the truth, and she finally sent me on my way (about 8pm tonight). I believe that she is slowly starting to leave her 'inner reality' and join the rest of us. She was concerned about other things too, before sending me home. She said "poor dog (she still has trouble remembering Rusty's name, but she knows he is a Boxer) he has been home alone all day" I said "do you mean Rusty?" and she said "yes". I'm sure she was remembering the conversations from Sunday when Rusty spent the afternoon with his friends while I was away. How happy he was to play and be with people (and Raven of course), she remembered all that, and she felt bad for him. This is not to say that she isn't still in fantasy land. She was trying to change the channel on the tv today by closing one eye and bringing her left hand in her field of vision, positioning it at the controls on the tv and changing the channel. I kept telling her that she couldn't change it that way, she needs to use the control by her side, and she kept saying that she changed it like that before. I can't wait for her to get back to Spaulding, she can't either!

Far away

Interesting being so far away. I call several times a day, trying to pester you (my sisters) equally. I love hearing how you are doing. I love talking with Mom, hearing her voice. I love reading the text messages, the emails, the blog posts. Your voices, your words and photos are my window to everything happening in Boston. Now, I'm trying to find a video to upload that won't offend anyone :) Love, from Utah!!!

Great, great day for mom

I got to the hospital a little later than usual today. Last night, mom gave me "permission" to sleep til 9 am this morning. (Dont tell mom, but I used that extra time this morning to catch up on work-related tasks). When I arrived in her her room at about 10:20 this morning, she was in the middle of her meeting with the speech and swallow therapist. The last time her swallow was tested was last Thursday morning - same day as her tummy tube operation (and the day before our first trip to Spaulding). At that time, she was able to swallow just the tiniest bit of applesauce without coughing, but no more than just that tiny bit. Her swallow was there, but it was very, very weak. Of course, having a tube through her nose, down her throat all the way to her stomach I'm sure wasn't helping facilitate her swallowing progress. I did anticipate a better result once the tummy feeding tube was installed but boy, was I in for a treat today!! She did better than I expected - I think she did better than even they expected, too. She did amazing! She swallowed several full spoonfuls of applesauce successfully!A whole single-serving cup full! Way To Go, Dolly!! It was an incredible moment, especially after all this time and all this uncertainty over how her swallowing would progress. So much is tied to her ability to swallow. Dolly loves to eat, so swallowing was a very big deal. To see her successfully swallowing those big spoonfuls of applesauce was just exhilarating!! It was a huge benchmark moment.

In other news, Mom smiled several times today! A real smile. Only half her mouth can smile, but I saw it! Usually, when we ask mom to smile for us, sometimes she purses her lips, or sticks out her tongue, or makes kissy-face mouth motions. (Even though she speaks, understands, is lucid and sharp, she has trouble with some basic concepts - smiling is one of them.) But today, I saw a real, natural smile, and it was SO great to see.

The pacemaker doc came by and tested mom's pacemaker. It is functioning correctly, and looks good. She gave us information on aftercare and follow up care. So glad to get this heart thing under control finally. I know it's still no picnic, but as long as the a-fib can be successfully controlled by the pacemaker/ meds combo, which appears to be the case so far, we are making very good progress and we are moving forward! I can't wait to get to rehab, once and for all.

Monday, June 1, 2009

Heart rate is stablized...long term.

The pacemaker procedure was successful the doctors say.
After a short stay in recovery, Dolly was back in her room, and feeling better. She is surprising me at every turn. She has been through so much, and I still see improvement every day.

I am also very impressed with her tolerance for discomfort. She has never complained about anything in the 14 days and nights she has been in the hospital except for when she says "I'm starving!" but who can blame her for that? She loves the lollipop sponges, and has recently been getting little tastes of ginger ale instead of water. She is also spry for her condition. When I got up and moved to the right side of her bed, she thought I had left. I caught her reaching for the table, pull it closer to her, and grabbing at her cup of ginger ale with the three mouth sponges in there. She almost got it!! I think I scared her a little when I caught her and told her 'no, no...you can't have that" she thought no one was there. Maybe if I catch her again, she'll start to use her neck to move her head to see if anyone is at her right side (I always have to ask her to move her head, she rarely moves it without suggestion...not yet anyway).

She is a favorite of her nurses, they all tell us how nice she is, and she is always on her best behavior. Whenever she meets a new nurse, she waves her little princess wave, says hello and repeats their name. She remembers them and thanks them for everything. She hasn't lost her manners.

She will be watched now for the next day at least before they will move her back to Spaulding.
One thing I've learned in the past couple weeks is the experience of living moment by moment. We've all heard about "living in the moment". It's been a total catch-phrase this decade, thanks to Oprah. But honestly I have never experienced it at this level and at this intensity and for this length of time. It is a scary thing to do. You are accepting what happens and appreciating things as they come, accepting that you cannot control everything, having blind faith and allowing yourself to be still and concentrate on one thing -- or one person, as the case may be. This is not exactly how I typically live my day- to- day life, but strangely it has kicked in like a biological reflex. As harrowing as this experience has been in so many ways, I am appreciating each moment I encounter in a whole new way.

Ever since the stroke, every new challenge Dolly has been meeting brings about another new, next-in-the-roster big challenge to meet, a challenge which is just as important to meet as the one right before it. We have not yet hit the point of Dolly having the "option" of meeting and succeeding at a challenge she is faced with. It's been life or death situations all the way.

I'm glad that I've discovered that I have the capacity to show up for this-- the most challenging experience I have ever had- and to absorb, reflect and learn from each individual moment. It is a way to therapeutically take something valuable from the experience as a whole, a way to move forward with Dolly and our family, and last but not least, it's a way to appreciate and honor Dolly for who she was yesterday, for who she is today, and for who she may become, or will become, tomorrow.