One Red Bead

Family Cookout at Epoch

2010-07-22T21:31:00.000-04:00

Marion, Angeline, and Mom.

Nancy and Kathy

Kathy and Julie

Mom and Kathy

More pictures from Memorial Day weekend

2010-06-05T16:44:00.000-04:00

Dolly and Marion (her best bud at Epoch)

Micheal, Mom, and Anna

Nancy, Kathy, Mom and Anna

Nancy, Mom and Kathy

Mom and Dave

Anna and Michael

Julie and Nick's fine cuisine (my plate)

Dolly and Josephine

Nancy and Kathy

Anna and Julie

Dolly update.

2010-06-03T00:55:00.004-04:00

It's already June.

It's been 1 year and 16 days since Dolly's stroke.

It's been a crazy ride with Dolly over the past year. A lot of worrying, accepting, anger and settling. I still do her laundry, even though I am secretly planting the seed for her to let the facility do them. I still visit with her often, and my visits are easier the more time passes. She has many friends in the nursing home, she hates to be away from them for too long. She loves to gossip. She soaks up every detail of her friends' family and visitors. It's very entertaining.

Julie and I take her out when we can. Julie takes her shopping. I can't imagine Julies patience for this, as I know that Dolly gets childish. I have taken her shopping, and it can be a real test. Dinner is a test as well when we take her out. Dolly wants to hear the whole menu (she has trouble reading) and protests loudly when she hears options that are 'not to her liking'. It's like a kid having a fit "NO, NO, NO...!!". She sometimes refuses to eat with utensils, which can also be very frustrating. Do you think she will grow up?

We are still in the process of cleaning her house out. She has so much stuff, it defies logic. There have been multiple carloads of stuff donated to Boomerang and the Salvation Army. I estimate about 20 car loads so far, but I can't be sure because my car is not the only one that has been loaded. Recently, we have enlisted a friend to sell some of the collectible stuff on Ebay and to include some of Dolly's stuff in a yardsale that she is having. We have to sell her house, and soon! She is running out of money so fast. We have been paying out of pocket for her room and board, medication, and incidentals for over 10 months. I can't even speculate how much money that is, but it's been at least $11,000 a month, not to mention the amount of money paid to the IRS on her behalf. I did not want this to turn into another rant, sorry.

This past weekend, Anna and her husband Michael came for a long weekend visit. It was wonderful. We went out every day that they were here. We planned to take Mom out for dinner on Saturday night, but she didn't feel well. We took her out for Memorial day at Julie and Nicks. Anna picked her up and took her home. I was off the hook. It was a gorgeous day except for the smokey air from the Quebec fires. She had a wonderful time. There was some bad behavior(we are getting used to that), but she stayed alert and awake for the whole time (about 5 hours) so I am very proud of her stamina. She didn't even get car sick, and that was a long ride.

Dolly and Anna.

I've been Buffalo'd

2010-04-29T00:59:00.002-04:00

Dolly has been getting car sick consistantly the last couple of months. I guess being confined to a wheel chair can do a number on your equalibrium which would make jerky car movements quite nauseating. I keep a 'puke bucket' in my car complete with a roll of paper towel and some plastic grocery bags for disposal. The thing is, she wants to go out so bad and so often that she ignores the sickness until its too late. I end up having to ask her continuously if she feels ok. She lies, as she does, so my intuition plays a key roll in getting the bucket under her in time.

A couple of days ago she told me that she could take Dramamine for the motion sickness. I thought that was a brilliant idea. I told her to ask her nurse if it was okay to take. She said they said it was. I planned to take her out to dinner tomorrow night, and told her I would get her some. I told her that she would have to take it 1/2 to 1 hour before I picked her up and that I was on my way to get it for her because I didn't know when I could drop it off tomorrow. She called me two minutes after we got off the phone to say that she needed to take it 1 hour before I pick her up. Ok. Good.

When I arrived tonight, I went to the nurse and asked if he needed to keep the Dramamine, or if I could leave it in her room. He didn't know anything about it, and insisted he call her doctor to see if it was okay. Any medication needed to be logged in her medication log. Well, sadly, I arrived just after 5pm and the doctor on call was not her doctor. We are awaiting an approval.

Moral of the story:
Don't always believe the words of someone who wants to puke in your car.

So, now we are forced to eat at a mediocre restaurant because there isn't a great selection to choose from within a one mile radius.

Another moral of the story:
Dolly says things in the hopes that they will come true. Not necessarily because they are already true. Keep that in mind when you talk to her.

Saturday afternoon visit with Dolly

2010-03-28T01:02:00.004-04:00

I spent an hour with Dolly today after work. She was in the front hall with Marion. She has been sitting in the front hall as of late, ready to greet the visitors which she does with gusto. She knows everyone, residents as well as visitors. She has a nasty habit of blurting out personal information about whoever is passing by her just as they are passing by. For instance, a woman came in and passed by us, and just as she was passing, my mother says "her mother is 105. The oldest person in here. She looks good for having a 105 year old mother." Stuff like that. Oh, and a man getting wheeled past us, mom says "He is on oxygen now, he never was before." Her personal filter has been long lost, I'm not really sure if she had one to begin with.

The second she saw me, she started talking about how I need to take her out more. How I have to 'step up' since Julie is on vacation and I should take her out to dinner tonight. She told me that she hadn't been out in weeks...even a month! I called her on that and she laughed while she lied. It was really funny. She then demanded that she go with me wherever I go for Easter. I suppose we have to make some reservations somewhere for Easter now. We are celebrating more holidays than we ever did before her stroke.

'Step up'...she is so funny sometimes.

Total Rant. Sorry.

2010-03-20T05:54:00.002-04:00

I am cross posting this from my own blog because it is relevant.

So...
I have not been so chatty lately. I am ashamed, since I really want my blog to stay current which it totally has not been. It's been a really tough year for me. In fact, before a week ago, I was only making stuff when it was requested of me. I have been totally non-creative...only fulfilling special requests, which never ceased (thanks to my loyal customers!). A little over a week ago, I got into my studio once again and have produced two very new, very rivety pendants which I had an incredibly joyous time producing. I believe I am back in the saddle so to speak. Yay!

My mother, as most of you know, had a very massive stroke last May, and is my child now. I am responsible for her, and that has put a huge ugly damper in my creative life. I feel like my imagination and drive was just pulled out from under me when I was appointed her Health Care Proxy and her Durable Power of Attorney, and my job as both has been very 'hands-on' and frequent. I would not wish this on anyone...I'm just being truthful here.

Mom is not getting better, and it's become harder and harder to deal with it on my end...the sane end. In fact, she is getting progressively worse. She doesn't try. She is stagnant. She is happy in her stagnancy. But she remains bright in other ways. She loves to eat and she loves to gossip. She is only interested in everyone else's business, not her own, which is very difficult to understand if you are an outsider. I do not even have a good click with the social worker at the nursing home because I can't explain my mothers behavior in social worker terms. She is an enigma. She has always had social issues. She has always been more interested in knowing everybody else's business than dealing with her own. This practice is more apparent to me now than ever before. She is paralyzed on her entire right side, but the paralyzation is not what keeps her back. It is the fact that she does not pay attention at all to that side of her body, but she knows everything about everyone in the nursing home. It is frustrating. What makes a person remember something frivolous and not something important? Why does one woman know every little detail about her surroundings, but does not remember the right side of her OWN body?

Scott and I took her and her friend Marion out to the deck today to soak in some sun. It was pleasant. I have learned how to have a nice visit. I do not expect anything from her anymore. I consider her my child now. She is a brilliant toddler.

I am so happy to be back at the bench and making stuff. I just got another order today. I apologize once again for my absence, and I hope to never leave you for this long again. It's so hard to write when there is nothing positive to write about.

Sorry for the rant.

Painting with Dolly

2009-11-22T13:10:00.000-05:00

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.

That's Amore

2009-09-30T22:48:00.001-04:00

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.

Happy 72nd Birthday!

2009-09-27T17:49:00.010-04:00

Some Big News

2009-09-24T21:50:00.003-04:00

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?

More Norwood Day pics!

2009-09-20T16:10:00.004-04:00

Norwood Day!

2009-09-20T08:52:00.002-04:00

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.

Dolly Walks

2009-09-15T00:22:00.001-04:00

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.

Silver linings

2009-09-12T17:59:00.003-04:00

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.

Drawing

2009-09-08T21:42:00.005-04:00

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 horse...so 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 stopped...like 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.

Dear ____________,

2009-09-07T15:19:00.003-04:00

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.

Yours,
Kathy

I'm having a moment

2009-09-02T22:39:00.004-04:00

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.

The Little Things

2009-08-31T21:31:00.002-04:00

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.

Monday Car Ride.

2009-08-21T01:20:00.006-04:00

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!

Update, Wednesday August 12

2009-08-12T10:15:00.004-04:00

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.

Good food, great company. Next step.

2009-08-01T01:56:00.005-04:00

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.

Doing ok

2009-07-27T21:37:00.008-04:00

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.

behind the curtain

2009-07-20T20:49:00.001-04:00

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.

Stuck

2009-07-17T21:31:00.004-04:00

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.

Stand. Bend at the knees.

2009-07-04T08:44:00.000-04:00

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.

Crosswords & Mac and Cheese

2009-06-30T10:18:00.004-04:00

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.

The woman has her ways

2009-06-29T14:27:00.001-04:00

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.

We have moved.

2009-06-26T21:52:00.004-04:00

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.

Commercial break

2009-06-22T23:23:00.017-04:00

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

2009-06-22T07:45:00.001-04:00

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.

Touring

2009-06-21T17:32:00.001-04:00

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.

2009-06-21T01:45:00.002-04:00

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.

Processing progress

2009-06-19T00:03:00.000-04:00

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.

One month after the stroke.

2009-06-18T00:42:00.003-04:00

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 15th

2009-06-15T23:18:00.003-04:00

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.

Laughter is the best medicine

2009-06-13T22:28:00.003-04:00

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.

Chicken salad and banana

2009-06-11T21:33:00.004-04:00

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 9th

2009-06-09T21:18:00.005-04:00

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.

Sam and Dolly

2009-06-07T19:50:00.004-04:00

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.

Progress

2009-06-07T09:51:00.005-04:00

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.

Wonderful Day

2009-06-05T21:45:00.004-04:00

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!

Choices

2009-06-05T09:54:00.001-04:00

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.

Thursday

2009-06-05T08:50:00.001-04:00

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

2009-06-05T02:32:00.003-04:00

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.

Worried

2009-06-04T01:07:00.002-04:00

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.

Back in rehab

2009-06-03T23:33:00.002-04:00

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

2009-06-03T13:41:00.001-04:00

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

2009-06-03T08:56:00.001-04:00

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.

Laughing

2009-06-02T20:56:00.003-04:00

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

2009-06-02T18:13:00.003-04:00

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

2009-06-02T15:05:00.002-04:00

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.

Heart rate is stablized...long term.

2009-06-01T22:41:00.005-04:00

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.

2009-06-01T00:19:00.001-04:00

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.

Rainbow.

2009-05-31T23:50:00.003-04:00

After this next operation for the pacemaker, I hope we only see progress towards recovery. It's so difficult to keep taking steps forward only to fall backward. I'm not sure how much more of this any of us can take. Dolly is mentally making such wonderful progress with her speech and understanding, although she is having trouble distinguishing between basic functions such as smiling versus sticking your tounge out or making kissy faces and breathing. It's been mostly the physical that has the set backs recently. She has been totally there, mindful of each step she is taking (not literally) and able to tell us stuff even we have trouble remembering. It seems that she has trouble with the very basic. Baby stuff. The adult stuff has been cake. She knows when she 'has to go' and she communicates very well what she needs. She read some words today from a list Kathy was writing of questions. She wanted to see it, and we asked her to read the list. She got a lot of the words right, even in poor quality penmanship of quick notes.

On my way home, I followed a rainbow. I don't normally make it a point to try to get a picture as I am driving, but I was safe...no worries.

It was much more beautiful in person, and it gave me a feeling of peacefulness. Tomorrow will be a great day.

Another day, another new Mom development

2009-05-31T19:14:00.000-04:00

Mom's new team of docs here in Internal Medicine dept. at Brigham's have gotten cardiologists involved with how to asess the danger of that 8-second lapse she had last night. After the stroke, all her doctors have tried medications in many different combinations to control her a-fib but mom's heart rhythm has not found the stability needed in order to move forward with her rehab plan. After assessing her case today, the team of cardiologists have deemed mom a good candidate for a pacemaker.

The operation will take place tomorrow. I am so excited about this. We've been in "officially" limbo since Saturday morning, but it's really felt more like we've been in limbo since Friday late afternoon when we originally left Brigham's for Spaulding. Nancy, Matt and I were filled with excitement and anticipation for her rehab, but it was tempered by worries and real concerns about her previously unstable heartbeat, which had been sort of dubiously "stable" all day Friday.

The whole ordeal of mom's a-fib putting an immediate yield to the rehab plans -- the forced mental shift of coming back to Brigham's -- a wide U-turn -- moving two spaces backwards on the big board game of the whole experience of the stroke aftermath -- it's been deflating to be honest. With no less belief that my mom will improve with aggressive therapy, no doubts about her complete commitment to her recovery and with the total belief that she will use every ounce of juice she has to recover her mind and body as much as she possibly can, it's still a bummer to have to "Plan B" her when we want to get "Plan A" in action ASAP! So, with today's developments, though the future is never certain for anything and this is no diferent, I'm just so happy that we are making progress and now have a viable, calculable, more realistic tool to get mom back into progress mode, moving forward.

Speaking of those little setbacks and how, no matter what they are, they can sometimes make you feel deflated when you were wishing for a different outcome, I have to give a big shout-out to "Sister Power"! Nancy helped me laugh a lot during our ER day on Saturday. While we were held captive for four hours in mom's curtain-walled square, we did a goofy craft project that Nancy bought for us in the Gift Shop, we choked back laughter over the patient next-door's outrageous requests and complaints (seriously, a writer for "ER" could not have crafted a more perfect dialogue), and we chuckled over a couple of other things which I dare not mention here! If you ever find yourself in the position of hanging out in an emergency room for four hours on a Saturday taking care of your poor mom, make sure you have a funny sister with you! :)

Mom on Sunday morning

2009-05-31T10:33:00.001-04:00

I just wrote a ginormous blog post on my iPhone here at the hospital, using a new blogging app I downloaded. (I have been at the hospital so much that I have not even posted to this blog yet and, well, that's a little ridiculous!) Anyway, I got a phonecall while i was composing the last paragraph. Wouldn't you know it, the app is not smart enough to save my draft while I answer the phone. Fatal flaw!

Last night, I got a call from Brighams at midnight. The phone buzz woke me from a sound sleep. I immediately called back. I hate to say it but I was scared and fearing the worst. It turned out to be a non- emergency... and kind of a funny story.

Nurse Kim had been performing a routine EKG on my mom. At the same time, mom was transitioning from an a-fib state to "sinus" (this is the name for a normal heart rhythm state, in "a-fib" speak). Turns out that mom's heart beat stopped for 8 seconds during this transition. The heart beat lagging is said to be normal during the transition, but 8 seconds was a longer time lapse than usual. Kim mentioned it to the Doctor. Mom overheard the conversation and suddenly asked Kim to call us. When Kim wanted to know who to call and what number, mom reached behind her pillow and produced a slip of paper with three names & phone numbers on it...

Earlier in the day, mom had asked Julie to write down our phone numbers for her on a piece of paper. We did not know when, or how, the numbers would come in handy for Dolly. I think we just assumed the numbers would act as a security blanket for mom. Little did we know! Mom wanted us to know about the 8 second lapse and she wanted us to know NOW!

Nurse Kim told me the story. Then she said mom wanted to talk to me. I spoke with mom in the phone. I told her id see her tomorrow. She said, " Come early."

Nurse Kim was impressed by mom. Everyone is impressed with mom. I think she has more packed into her brain per square inch than anyone I know, and it's serving her very well now.

2009-05-31T08:15:00.002-04:00

Some interesting stuff that I bet my Mom already knew:

left brain vs. right brain

2009-05-31T01:44:00.000-04:00

I find myself crying at home alone sometimes these days.
I keep it together in front of Dolly, but seriously, the silliest things can cause a downpour at home. Sometimes, just something to get me started is all it takes. I wish I had something better than paper towel or toilet paper to blow my nose in right now.

A fib sucks.

2009-05-30T20:53:00.000-04:00

Apparently, Dolly has been having episodes of atrial fibrillation for a couple of years or so. Last night at Spaulding, they were monitoring her heart rate, and ultimately decided to let her stay the night after her heart got into somewhat of a steady rhythm. This morning, however, they decided to ambulance her back to Brigham and Women's. Her heart rate was all over the place, even confusing the machine that she was hooked up to. Spaulding is not equipped to deal with this problem.

Kathy and I spent the better part of today in the emergency room with mom. They took some tests and by 4pm they decided to move her into a room on the internal medicine floor where they deal with these issues more than any other floor. Her new doctors were amazed at what this lady has already had to deal with, and they are going to try to get her back to Spaulding as soon as possible. Dr. Robert thinks they will be able to get her heart rate manageable and move her back to Spaulding within 48 hours. They are using small doses of a drug I cannot remember the name of. It has some side effects, but they usually don't surface before 20 - 30 years of use. So, taking her age into consideration, they feel this is the best treatment. Let's hope it works.

The best news we have had all day, is that Spaulding is expecting her to return, she is still a patient of theirs. I just hope that during this 48 hour time frame, they don't give her bed away to someone else.

Moving day

2009-05-30T00:17:00.000-04:00

Dolly was moved to Spaulding rehab today.

She was so excited to move out of the hospital, it was a tender moment to say the least. We fought rush hour traffic to get there, Kathy and Matt in the ambulance with mom, and me following in my car. The first great thing I learned about Spaulding was that they are compassionate people right down to the woman who takes the parking money. The ambulance carrying my precious cargo pulled into the parking area past the booth and waited for me. I had to pay the lady. I rifled through my carry on bag which has become my purse, looking for money. I know I had some! I found three dollars in there, but I needed five. I unbuckled my seatbelt to scootch up and check my pockets...no money. I told the lady "I know I have money, just a second"... She said, "it's okay, they are waiting for you" as she gestured to the ambulance 10 feet in front of me. I was floored, this is Boston after all. I offered her up the three dollars in my hand, and she refused it, told me to go through.

When the admitting nurse cut the wristband from my mother that bared her Brigham and Women's info, I asked her for it. I wanted to save it for mom. Odd maybe, but so is the Weller way, we are odd people who collect odd things. I thought she would appreciate it later on in her recovery. As I unzipped my fleece pocket to add the cut wristband, I found my money in there.

"Thoughts from today"

2009-05-30T00:10:00.000-04:00

(from an email sent May 21, 2009 12:12AM)
This whole week has been pretty whirl-wind. Now I m in bed, but I can't sleep. Harvard students are talking loudly hanging on the stoop of their dorms across the narrow street just below my open window. Other voices and traffic from Harvard street, and echoing between the buildings from Mass Ave also keep me awake. The voices sound familiar. Some sound just like my sisters. I'm in a strange, delirious, in-between state. I feel that, when I close my eyes and try to sleep, my consciousness merges with my mother's and all the guardian spirits around her.

She gave indication, actually SAID today, that she does not want the plug pulled, she wants to live! She told me that she will not be staying there (at the hospital) but will soon be going to rehab. Yesterday, talking with the doctors, we all remembered her having told us her wish of DNR, do not ressussitate. Now, I can surplant that with this new memory- and that makes me happy. Yet, the reality is still that she is in the stage when her brain is swelling, after such a massive stroke. The doctors are trying to paint a 'realistic' picture for my sisters and I. They refer to half her brain, the left half, as "dead". Obviously, it must not have been the half of her brain that she likes to use because, although severely physically handicapped at this time, she is incredibly coherent, lucid, and opinionated. Even funny. For example, my sister Kathy was in the hospital room's closet on the phone because it's quiet and secluded. Mom kept asking if Kathy was still in the closet. Finally she asked, "Is she locked in there?" We said "No." so mom asked, "Why not?"
Meanwhile, we still have a couple days during which we should expect for it to get worse before better. She's completely paralysed on the right side, has trouble speaking (though she wants to!), is exhausted, can't swallow well.... but is hanging in there. We always knew she was sharp as a tack, but now the doctors confirm, with CAT scans and MRI-s the positive and negative of that. Her brain is much younger than the norm, it has suffered little, if any, of the normal atrophy that happens with aging. Unfortunately, that doesn't leave much room in the skull for the brain to swell, as expected in the process of recovering from a stroke. Funny, huh?
Anyway, I feel better telling you all this.

Also, since I can't sleep, an issue that I have been wrestling with for the past couple days, now, seems to be clarifying. I share it, here, with you. It needs to be edited...

"We have to choose to be willing to go through new and strange and difficult experiences, facing to become new and strange, and maybe difficult, at least different, people.
We have to choose to become these new and different people, different by going through these transitions, these transitory experiences.
and those transitions not always are leading us through death... often they are leading us through life... a life that comes through a process- through death.
then we emerge as new people, who then make different, new choices.
In this situation of deciding –interpreting that a person has made a choice to continue as that same person rather than choosing not to transition and change, i.e. to stay the same person– is deciding that the person has decided to not make a choice... has decided that that other person is already dead, and unchanging. Life is change. Life is the process of life and death, of moving forward. To say a person only wants to continue as the person it has already been, is already death, is already condemning that other person to death. When we take away the opportunity to allow a person a choice to change, that is a condemnation to death. ..."

It feels funny to have this emerge from inside myself, because it is totally different from my prior opinion, which now to me looks like "Life doesn't matter, because life and death are all one."
Now I see them as all one, but in a totally different way: the value and beauty of death, comes after the value of the beauty (and struggle) of life.

I can't tell if those voices are my sisters, and maybe it doesn't matter, does it? What is sister / non-sister anyway?

One Red Bead

2009-05-29T22:07:00.000-04:00

Since we have all been spending so much time in the hospital, I brought in some beads and silver wire everyday to crochet necklaces. Mom always wants to see what I am doing. She approves every necklace before I put the clasps on them. A few days ago, Julie said "I want to make a stroke bracelet" and went through all the beads I had with me. She had an idea to use one red bead as the clot that caused my mothers stroke and a different color bead for the body of the bracelet. I thought it was a great idea. I had no red beads with me at the time, so the next day I brought some and we made the bracelets. We showed them to Mom, and she wanted one too. Kathy's, Julie's and mine are all iolite with one red coral bead, we told mom she could have any color bracelet she wanted. It was a bit of a struggle to get her to tell us what color she wanted because the first 3 times we asked her, she would only respond with "one red bead". Finally, she told me that she wanted black. So, I made her an onyx bracelet with one red coral bead. I put it on her wrist when she returned from her G-tube surgery at Brigham and Women's hospital, and she has been lifting her arm to her vision to admire it ever since. When I asked her what kind of bracelet she was wearing, she said it was a "Dolly bracelet" and then she said "one red bead" again.

New perspectives

2009-05-29T01:02:00.000-04:00

A few photos from one of our hospital dinner breaks.

Mother's Day: 6 days before the stroke

2009-05-29T00:22:00.000-04:00

"What was your mother like before the stroke?"

This question makes me think more every time I am asked by another Care Coordinator.

She gardened (and when I say gardened, I mean moved trees), she rearranged her furniture...all the time, she knew more useless information than an encyclopedia, she drove me crazy and

she was definitely under appreciated.

11 days and counting

2009-05-28T23:16:00.000-04:00

My mother Dolly, had a massive stroke on May 17th, 2009. She is 71, very active, and smart as a whip.

She was in the neurology ICU for 7 days (starting Monday, May 18th), and has been in a shared room now for almost 4 days. Her nurses and doctors at Brigham and Women's have been wonderful. We truly could not have asked for better care. We are grateful for that.

Hopefully tomorrow or Saturday she will be moved into Spaulding rehab. I figured that since I was neglecting my blog during this time, I will start a blog about mom. It makes sense to me. Some pictures may include disturbing decor...so I'll leave you with a picture of my Mom at her 71st birthday...only about 8 months before her stroke.

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