Peace

Alison was so content today in her bed and watching a movie.  She asked how long I was staying because it had been three days since she's been outside and she wanted to go out.  I left a note for the Monday staff requesting that they have her ready for an excursion when I get there.

She was so relaxed..no pain, no itching.  Some frustration at not remembering words but she was testing herself and practicing.

She was happy that everyone came to see her on her birthday.  She said she misses Reenie a lot.

It turns out that Alison's friend Lauri knows Jennifer the PT.  Small world!  And in some way makes me feel like Alison's support system just got a little stronger.

I noticed they took the bandage off her wound on the outside of her left knee.

HAPPY BIRTHDAY ALISON!!!

Some silliness from Stella...

We all thought this was hilarious but it was lost on Alison.  She said it freaked her out:(  Maybe another time.  She was exhausted by the time I had gotten there.  She had had lots of visitors today.  Reenie is headed back to California tonight. I know Alison is going to miss her so much.

A New Attitude

I bought Alison a few more clothing items.  Comfort was the most important consideration of course but I thought it was time to start jazzing it up a little.  (I even bought her a dress!!!!!) So I told Alison that she had to put the wallowing in pity behind, it's her birthday and the beginning of a new era..it's time for her to embrace the woman she WANTS to be.  I asked her what that would look like.  I reminded her of how full of life she was this time last year.  Philip took her to New York for her birthday.  She was on top of the world.  I asked her what she wants her style to be.  She said she didn't care about that kind of stuff but I pressed her.  She said "bohemian".  That's exactly what I was thinking!!!!

She really wanted to talk to Philip and we did end up talking with him briefly.  That made her day.  She was hopeful he would be able to visit today.

At some point she said, "I really need to get on board with what they are trying to do for me here.  I need to be able to use the phone and computer.  I need to get my hands stronger so I can type and text and email people.  It's 11 and then it's 2 in the morning and I feel so isolated."  (She really said all that!! with perfect ease!!)  I told her that the more she works at the physical stuff, the better it is for brain.  I'm not sure if I'm making that up or if I read that somewhere, but she believed me and she is motivated..at least for today.

Good day!  She said she'd wear the dress on her birthday!!! :)

P.S.  PT did tell me that Alison being upright IS better for her cognizance.

Enormous Progress

Visit Wednesday 9/25 by Andy Riedy

You guys are missing so much if you do not visit Alison! At every visit, I find Alison with new awareness and capabilities. And her full personality and humor are beginning to show. Take the time to be a cheerleader too and visit her!

At today's visit, both Reenie and Mary Pat were there. At this visit, Alison was for the first time cognizant of the brain limitations that she currently has. Alison commented on how frustrating it was that every time she had a thought, it disappeared. She understands that her brain is not functioning well, something she has not realized until now. THIS IS GREAT NEWS. She is tracking what she wants to say and KNOWS that she is different than she was.  

She also did not know the tremendous progress she has made over the last 6 weeks. We shared HOW MUCH she had improved over the last 3 weeks and that this “frightening” awareness is one step in her recovery. It helps her when we share how much ground she has gained since her coma state through to her current awareness and ability to communicate. It is so much fun to teach her and let her experience who she was and who she is becoming.  

Other examples of progress: Alison also showed several memories of recent events. Again this is great progress given concerns of a week ago that she lacked any short term memory. Also, Alison is moving her limbs, sometimes so much she falls out of bed. Not graceful but certainly a “step” in the right direction. We reassure her that she has gained so much mental and physical abilities over the last several weeks, and that she can gain so much more soon.

Some odds and ends: When Alison said “OW” today, we talked about whether it was a real OW or an itch.  This time it turns it meant “scared” that she was going to be hurt. So we now have 3 words to remind her to use. Alison at one point said, ”Don’t put thoughts into my head” meaning she already had enough to think about. I am mindful to keep from over-tiring her at each visit. Finally, Alison has no filter on what she says (did she ever?). She sometimes says things to people that are racy, bigoted or inappropriate (without meaning harm). Just remind her and then she is contrite.

Reenie leaves Saturday so come fill in time and visit Alison!

East Meets West:)

Reenie is here!!!!  She arrived last night and was with Alison when I arrived. Alison was extra vocal today..more cursing than the past few days.  We spent the whole time stretching, massaging, and rearranging her to no avail.  Nothing brings her relief for long. 

Reenie said she had taken Alison out for a stroll in the sunshine and that Alison enjoyed watching a talent show (I can't remember the name) on the Ipad.  

She kept saying she needed a nap.  I think Reenie wore her out!!! 

Glorious Sunshine

I took Alison outside to bask in the sunlight. She said it was fabulous and glorious. She was so sad today... lots of tears.  She feels humiliated that she has her diaper changed.  She has a bad rash on her bum and horrible neck pain. She wants to crawl out of her skin. I tried to stretch her out and massage her.  I just feel so helpless sometimes. I wish I could bring her more relief. 

One good thing is that she is able to express her feelings to the staff.  She told the woman changing her that she felt humiliated and that the cream she put on her stung. I thought that was really good that she is starting to communicate more clearly so they can understand what she needs.

I took her back to her room and she was disoriented. She kept saying "Is this my room?".  I felt horrible leaving her today. Usually by the time I leave, I have managed to make her more comfortable, calm, cheery, and settled. Today I was unsuccessful..except when we were out under the wisteria.  I promised her that Reenie would spend lots of time with her outside. :) She arrives tonight. 

Quiet Time

Alison slept almost the entire time I was there.  As I was about to leave, Sonia came in to say hi to Alison.  Alison is her favorite she said...the first and last patient she comes to see every shift.  She is so sweet with Alison and they make each other laugh.  Sonia said she was even laughing on her days off about things Alison had said and done.  She made Alison hug her which was hilarious to watch since Alison is not affectionate like that..to humans at least.  The look on her face was priceless!!!  But you can tell that Alison really likes her and they have a great rapport.

I told Sonia about The Hours CD that Alison likes.  Alison told her to be sure not bore a hole in it.

Sonia said that Alison keeps everyone awake with her yelling.  A woman fell out of her bed trying to go help Alison (Alison yells "help" a lot) and a man shuffled up to the nurses' station to make sure someone went to check on her.  That place is a circus and full of characters...but in an amusing/good way:)

Thursday

Mary Pat was there when I arrived.  Alison was in great spirits..AGAIN!!!  Two days in a row is so nice to see.  She was funny and pretty with it.  I noticed that she likes to imitate and mock what people are saying.  She always does it with a smirk on her face.  She still likes to do accents.

I put on Pandora for her..Cello Concerto Station.  She requested to hear the soundtrack from The Hours.  I couldn't find it at first but when I finally did, I played it without telling her.  I wanted to see how she would react.  She recognized it immediately and was so elated.  She said she would fall asleep immediately.  She probably would have had Mary Pat and I not disturbed her.  We could see the relaxation and happiness wash over her as the music played.  She truly looked blissful.  I will bring her the CD today and let the staff know about it.

I asked her specific questions about caring for Stella and she was able to answer.

Days like these give me so much hope.  And knowing that Alison's anger and sadness seem to be waning is such a relief.

More on Wednesday Visit with Amy and Andy

It was a great visit on Wednesday.  I got to play with both Alison and Amy.  Neither Amy or I wanted to leave.

While we were there, Brittany the new PT person came in.  PT's objective was for Alison to sit on the edge of the bed.  Whenever Alison sees PT, she turns into a "turtle".  She stops communicating and becomes tired and does not try.  Today, with Amy and me there, there was no way Alison could do that.  We asked Alison if she wanted to get better (yes) and had been improving (yes).  We then said she had to try each time PT came in so it could happen.  After the PT person got Alison sitting up, I lay behind her in the bed to give her lower back some support.  She sat for maybe 10 minutes!  No compliants and alot of joking - as you can see.  It was great to hug her the whole time too!

I printed for Alison the Webb family picture from Hopkins.  Alison cried when she saw "her babies".  There was some confusion on matching the right name to the face (?no reading glasses).  She also saw the calendar marking off the days until Reenie came and she said "so soon!"  I showed her a cross word puzzle as she said she used to do them all the time.  Again, not sure of what she can cognitively recognize vs see without glasses.  So I read her the first clue.  For "three men in a _____" she replied "tub".  It fit!  I left it in the bedside drawer if others want to have her do a few crosswords to amuse her.

Alison is making great improvements in communicating the sudden discomforts she feels.  Sometimes it is pain "ow" and sometimes itching "itch".  When asked "where"", she is beginning to communicate head, back, etc.  Both discomforts come on suddenly and strongly but then subside.  I wonder how much is physically vs neurologically caused discomfort....  The latter is harder to resolve.

A Great Time with Andy

Need I say more????

We Laughed, We Cried

Alison was in the chair today and they had put a CD on for her but it was too loud.  She told me she is very sensitive to sound and that the TV across the hall was driving her crazy.

She was sobbing today..probably the most emotional I have seen her yet.  She stiffened when the aide came in and said that particular aide was upset with her.  Alison apologized to me for getting upset.  I tried to reassure her that it was okay and encouraged her to express herself in any way she can.  The aide said that Alison had been quiet up until my arrival.  

She hates where she is but believes she can get better in time.  However, when PT came in, she completely shut down and tried to use the excuse that she was too medicated to do the work.  (Prior to Jennifer getting there, she was asking for "five Dilaudid". I told her they probably won't give her anything stronger than Percocet because it could interfere with her therapy).  Jennifer tried to get Alison to hold her bow.  No luck.  Tomorrow they will try standing her up again.

She wanted to be stretched.  I did my best.  They usually have her reclining in her chair and I always put her upright.  She likes that.  

She wanted to listen to music but couldn't think of what kind.

Still waiting to get a chest X-ray and swallow test and ultimately get her eating. 

Overall a good visit.  Despite the tears, we did laugh a lot:)

Pure Innocence

40 Things

By Amy 

Alison was very sedate while I was there today.  She had just finished her physical therapy.  Jennifer said Alison was tired so they didn't do much today besides edge of bed sitting.  I read her a page from Catcher In The Rye.  She seemed to sleep right through it.  We sat quietly for the most part. I told her that we had to put one of our dogs to sleep.  She perked up, opened her eyes, and asked why, in a perfectly normal, lucid way.  She said she was sorry and then closed her eyes again and said nothing else.  We left but had to go back in since I left my phone (again).  

Just then Mary Pat arrived.  We walked down to Alison's room and the peace that I had encountered just minutes before was nowhere to be found.  Alison was screaming in pain, cursing, demanding we turn her hair around (???).  She was soaking wet.  An old man with a walker came in to visit/see what the racket was.  The speech therapist arrived (and quickly left because of the mayhem) with Alison's bow.  It was amazing/unsettling to see how quickly things came undone.  We left poor Mary Pat to clean up the mess.  I am sure they got everything under control and hopefully Alison's peace was quickly restored.

That was Mary Pat's second visit of the day.  Alison could not remember that she had already been there earlier.  Mary Pat posted "40 Things I Needed the Most" from My Stroke of Insight.  The nurses were intrigued by the list and made extra copies for the staff and other residents.

A "Present" Alison

Andy Riedy 9/13

Today was a "red letter day" visit, meaning great! I saw Alison when she was just waking up.  We had great conversations both about where she is now and about the history of our family. She raised new topics to discuss!  She also showed that she is able to do controlled movement when asked of both her right and left side arms and legs. She even tried to sit up in bed.  Instead of just saying OW, she was able to tell me where the pain was. She seems positive about her progress and understands that she is moving towards recovery. I don't think that I am misinterpreting the situation. I think this is real, as of today. I know the days are up and down.

I did try and test some memory. When she sees me, she immediately knows who I am. She remembers our grandmother and trips to Europe (but not the number of dogs and cats she currently owns). Nor does she remember my previous visits. When I was out of the room, a nurse asked her who the lady was who was visiting. Alison could not tell her my name nor whether I was a friend or family. She was only on Tylenol at the time, not Percocet.

As an idea for visitors, it seems she likes the Patriots. How about coming for a visit and watching a Patriots game with her?

 

In A While Crocodile

 "Bless you! Bless you! Oh God bless you!", Alison said as I entered her room today. She was reclining in her chair with the TV on.  She was pretty alert. I think she was uncomfortable..sciatica she had said.  She wanted me to stretch her legs.  She repeatedly lifted her right leg and made circles in the air with it.  She kept saying "dead weight".  And she kept trying to get out of the chair!! She could only lift her torso about half way up though but I have not seen her move this much before.  A few times I pulled her forward so she was sitting upright.  We both could only sustain this move for a few seconds but I think it brought her some relief.

Pink Floyd was on the TV and she sang a few words.  She wants me to bring Stella and she lit up when I asked if she'd be interested in using her bow.  PT thinks this will be a great for her.  I'll bring it tomorrow.  They unsuccessfully tried to get her to stand today. She was able to hold herself up in a sitting position by holding onto a bar with one hand.  

The staff seems to think she can only remember the events of the last 30 minutes.  This is not completely accurate.  She remembers Philip coming to see her.  I asked her if she remembered who I brought with me the other day.  She said "George?".  Then she smiled and said "Ringo? Paul?"  Haha!!!!  But she couldn't remember Aaron coming. 

I asked if she liked her nurses today. No response. 

As we were leaving, Anton said "See you later alligator".  "In a while crocodile" Alison replied, totally dead pan but loud and clear.  :) Good day!!!

Wiped Out

I just read Andy's post..that might explain why Alison was a total bump on a log today.  She barely said anything and seemed to drift in and out of sleep.  They may have started her on Percocet also.  She was crying out in pain a lot too and had a frightening/disturbed look in her eyes.  She was able to say no when I asked her if she was mad and sad.  Other than that, she really didn't respond and barely looked at me.  I closed her door and turned off the TV and played the Urban Meditation station on Pandora.  She didn't react but I certainly enjoyed the peace!!!!  It gets so loud in there sometimes and I cannot imagine how all that noise affects Alison.  Yesterday, she could hear the sound of Aaron scratching his beard and told him to "Stop doing that!"

Her nurse Lola is so sweet to Alison and they have a good bond.  Alison is also fond of the two attendants, Sonya and Simone.  They are so cute with her.  They popped in so cheerily today and were competing for Alison's response.  When Simone couldn't get a reaction from her,  Lola squeezed herself between the wall and the bed.  "She ALWAYS talks to me..watch", she gloated.  Lola said "Alison knows the three of us."  And Lola did indeed get the best reaction:)

Yesterday was a great visit in terms of Alison's clarity, mood, and verbalization.  The best so far for me since she has been there.  She was so alert and animated and charming and funny.  I still love hanging out with her.  She usually still shines through.  She had a great time with Aaron.  They fell right back into their old sarcastic, jocular way..making references to things about which I am clueless.  I was so glad that he got to see her on such a good day.  She was astonishing herself with the big words she was using.  "Wow!!!  Where did that come from?" as she beamed in pride and/or amazement.  Redundant and overture were her two favorites.  She was speaking so intelligently and clearly.

I was surprised to hear Aaron's commentary when we left.  He said that it was horrible to see her that way and it was like she was trapped in a bad acid trip.  Interesting perspective from someone who doesn't see her that often.

So yesterday was the best I've seen her since July 28, today was the worst since she has been there.  I guess that's just how this goes.

Physical Therapy Efforts

Andy Riedy 9/10/13

Today when I visited, Alison was fully dressed including pink crocks on her feet and was in PT. It turns out that today was the first day they were attempting to have Alison "stand up" from the wheelchair, with much assistance. As is generally true, while Alison can move her legs and her right arm to scratch or straighten herself, she does not move when asked to do a specific movement. Thus the people were supporting her when they lifted her to stand upright. Alison said OW, either perhaps due to fright of standing without real control or perhaps because of pain. They returned her to sitting and did it a second time with same results.  I hope they continue to try to see if she can/will stand. But overall this is GREAT progress! I gave her much positive feedback for trying!

After PT, Alison was tired and not talkative (perhaps sad about inability to control standing?). Hope she rests and is awake for other visitors.

From Kathie in Rhode Island

Philip went to see Alison yesterday and I was able to talk with her for a good while on speaker phone. We had a great talk! I was amazed and so proud of her! I have been reading all of the postings but to experience her for myself was a huge gift!:)

We were quoting lines from the movies Arthur and Splash which is our private thing that we have been doing for years. She also used some other phrases that are particular to the way we speak to each other. There were times when the words were a struggle but we were able to manage. We all talked about sports,football season. Do you think that it is possible to get one of her Patriot shirts to her? I am so happy today and cannot wait to talk to her again.

Time For More Visitors

 

by Andrea Riedy 9/5 visit

When I arrived to visit Alison, she was in her fab chair by the nursing station. I heard (and recognized) her voice as I came down the hall as she repeatedly said OW loudly. But when she saw me, she gave a HUGE smile and said she was so glad to see me – in a complete sentence with great enunciation! That is the way the visit went. There were real moments of clarity and communication followed by sudden shouts of OW followed by inappropriate words. When reminded, she knows to not say the bad words.

During the visit I updated her on my family. She commented on everyone and was involved. When asked about my Mom and Dad, she said she wanted to see them BUT not that much (I think it is more about their personalities than Alison’s situation, haha). She also did not feel like facetiming with her sibs this time.

I reminded her of the tremendous progress she was making and that I and friends would be there to help her continue to move forward. But I wonder how well her “current” memory is functioning? She did not remember my previous visits. So I shared with her each previous visit and all the wonderful things she and I had said to amuse each other.  Amy, do you have input?

Alison’s hair has been cut, I put cream on her feet (please all do this), and watched as she interacted with some of the nurses, staff and patients whom she likes. She frequently moved her right hand and leg when she adjusted her body but does not yet move them when specifically asked to move them. Her right hand continues to open and close repeatedly.

It would be GREAT if those reading the blog could make time for visits to help stimulate and encourage Alison. Also pass this on to other friends. 

 

Thursday's Notes

Alison had a busy day with visitors (Andy and Philip) and therapies so I decided not to go.  

I did however speak to her physical therapist and her speech therapist Dara.

Dara said Alison ate an ice chip but stressed that we are not to do this.  And she did communicate with her.  After a while, Alison read her name tag and told her "Leave Dara".  So she did.  Dara is requesting a chest xray since it has been a month since the last one and Alison does have a phlegmy cough.  They are also looking into a stronger pain med for her and are trying to pin point her pain.  Reenie sent them Alison's medical records.  They obviously looked at them and are using it to help determine a new care plan.  

They are really interested in Alison's interests so that they have something to talk about during therapy.  Maybe down the road they can somehow incorporate archery???  Can you see her out there now shooting targets from her chair??  I totally can!!! Any suggestions are greatly appreciated.  Please comment.

Two Days Behind

These are notes from Wednesday..

We had another really good talk.  I told her how great she was doing and that she was making so much progress.  She asked "How can you tell?"  I explained that it was only five weeks ago that this all started.  She couldn't believe it.  She said it seemed a lot longer.

She cried a lot.  She wants her old life back and is dubious about her ability to recover.  

She was hanging out in her chair next to a dry erase board.  I wrote an A on it and asked her if she knew what it was.  She couldn't answer.  I drew a circle around it and asked again.  No response.  As I erased it I said "anarchy".  She got SOOO mad at me.  "Don't say that!!!"  She told me I was being mean.  "For asking you something you don't know or for saying anarchy?"  "Anarchy" she said.  I apologized and told her I would never intentionally try to hurt her and asked for forgiveness.  She forgave me.  It was intense.  She was really angry and hurt.  I'm not exactly sure why.

She wanted to know why she had been saved, why this was happening, everything happens for a reason.  Help me.  

In response to a story about Stella she said, "I love that dog".

She does not want a birthday party.

I asked if if she needed anything or wanted to tell me anything before I left.  She said I love you.

Speech Therapy

The speech therapist has evaluated Alison and determined that she is not ready for speech/swallow therapy but is keeping a close eye on her. She will continue to reassess her.

Just want to remind everyone that Alison is not able to swallow yet and should not be given ANY food or drink. She is still considered at risk for pneumonia. 

They are keeping a close eye on her cough as well.

Hanging Out at the Nurses' Staion

When I arrived, Alison was in her Mercedes hanging out at the nurses' station.  They said they had just put her there.  We probably spent 45 minutes out there.  Alison was yelling a lot again but we had some good conversations.  I asked her what was up with all the old men cruisin' for chicks in their wheelchairs.  She laughed so hard and said "I can't believe you just wrote that".  One guy went by and she said "I wonder what size brain that guy came with".  We laughed a lot but had some serious conversations too.  We talked about her screaming.  She said it is a reflex and she doesn't know she does it.  I asked her what it sounds like in her head.  She said sharp.  She said she can't stop herself but that she would like me to let her know when she is doing it.  I asked her if she felt like her brain was disconnected from her body.  (I got this from a book I found in Alison's house)  She said yes.  And does it feel like they will never connect again.  She said yes, please help me.  I reassured her that this was just the beginning and to not feel hopeless and to believe because you never know what will happen.  She said she feels out of control.  Some of these things she told me herself, some were yes/no answers to direct questions.  One of the residents told me she yells out all night.

My Stroke of Insight  A Brain Scientist's Personal Journey by Jill Bolte Taylor PhD
"I now existed in a world between worlds.  I could no longer relate to people outside of me, yet my life had not been extinguished.  I was not only an oddity to those around me, but on the inside.  I was an oddity to myself."
I found this at Alison's house.  It looks fascinating.  I will leave it at Alison's once I have finished it.

Once the nurses put Alison back in bed, they put her chair in the bathroom.

I asked about the Tylenol dosage.  The nurse said it is better to be PRN because then she is not limited to one dose on any given shift.  She reassured me that they know she is in a lot of pain and are giving her Tylenol frequently.

The nurses are always asking me about Alison.  How did she get this way? How old is she? Was she a teacher? What was she like before this happened?  I find it interesting that they are so curious about her.  She seems so out of it but she is still so present and I guess they see that.  Alison and one of the nurses (Lola) tell each other "I love you".