Communications!

Amy has shared blog posting privileges with me! So if you want to post a new blog item, email it to me at ariedy@cox.net.  If you want to facetime with Alison using an IPhone 4S or 5, email me your cell number and I will text you each time I plan to visit Alison, to see who wants to facetime.  My cell is 703-201-6676. We will also publish notes written by visitors on the blog - there is a spiral notebook by Alison's bed.  Get involved as you can!



Also (from Amy)...some tips for using this blog.

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The Mac Daddy

This chair was miraculously donated to South River today. Jennifer (PT) was blown away that they had received such an amazing chair. She immediately claimed it for Alison and had it sent to her room.  Thanks for the picture Andy...and for giving Alison a manicure!

It was nice to see Alison more calm and relaxed today although she didn't say much.

Does anyone know her favorite movie?  Something light and funny maybe?

Little Moves Forward by Andy Riedy

Alison was not in much pain today.  While for the most part she did not verbally respond to conversations, her face showed that she understood.  I did get smiles and gafaws from her when I joked with her. When I showed her a BIG bar of Toblerone chocolate, I got a loud and clear “NICE” from Alison (but I had to take it away until Alison is cleared to take food, per below). She appropriately used the word “ow” (when we massaged her arms too much).   And she once said to the nurse, “it’s ok” awhile being moved.   

 

Steps forward:

 

Alison’s Mercedes of a wheel chair was delivered today.  It will be a great step forward to getting her out of bed and allowing her to get used to sitting up again.  Amy and I did not see her take her first spin, but hopefully PT will have her in the chair daily.  They say that Alison is more cognitive when she is vertical. And the chair will avoid pressure sores.  They will take it slowly to avoid any chance of a repeat seizure so we will have to wait to take Alison out onto the grounds. 

 

We asked that Alison start to be evaluated by a Speech Therapist so we can figure out if, over time,  she can swallow and take food. 

 

We cut her fingernails.  Someone had already  cut her toenails and we again put cream on her feet.  For visitors, there are socks in her drawers – put on cream with the socks but remove the socks when you leave to keep her from getting too warm.  Her hair is being cut next Tuesday. 

 

We also massaged her feet, calves, thighs, and face, neck, shoulder, arms.  She closes her eyes and you can see her relax.

 

We played CDs (plus sang and danced to them), looked at Postlethwaite-Riedy family photos on IPhone, and “face timed” (video call) with Jimmy Webb.  Jimmy got a BIG smile from Alison.  If Renee or others of you have the 4S or 5 version of IPhone, we can try to facetime with you too.  Just tell us if you us want to call.

 

Alison has a cough and sneezes.  She will her right hand to her mouth when she coughs and sometimes braces her body with her left arm to cough.  It is not a big movement and her left fingers have not moved yet and she cannot do it when asked.  But it is movement!  When you hold her right hand, she will voluntarily squeeze your fingers with her right hand.  Everyone who visits, please encourage her to move.

 

Alison has been taking Tylenol PRN but given that she cannot also vocalize her pain, we talked with nursing and they will talk to the doctor to see if it can be given every 6 hours to avoid any pain break through.

 

Andrea Postlethwaite Riedy

4076 Rosamora Court

McLean, VA 22101

h. 703.533.7237

f. 703.533.7338

c. 703.201.6676

 

Use Your Words

Today was a different kind of visit for me today.  We could hear Alison yelling as we passed the nurses station.  She was out of control today.  I was very stern with her.  I told her she if she had something to say, then say it don't scream it because I have a massive headache and I can't take the screaming.  She said SHE had a massive headache.  She continued to scream a lot but every time I would correct her.  Part of me was wondering if I was being cruel..telling her to control herself.  What if she can't?  But the way she responds to me tells me she can to a certain extent.  She yells "shut up" constantly.  I told her she is not allowed to say that..if she has something to say then she needs to dig deep and find the right word(s).  And she would stop and it looked like she was thinking..hard.  I would ask her who she was saying shut up to?  No answer.  I really encouraged her to respond appropriately to the questions being asked.  When I say who, you answer with a person's name...not yell "owww".  She seemed to get it.  I didn't let up the whole time I was there.  Sometimes I would put my hands on her cheeks and get in her face and tell her to relax.  This seemed pretty effective in getting her calm and refocused.

We played a word/name association game.  I'd say a name and she tells me first word that comes to her head.  She couldn't think of any words so then I would tell her mine and she responded to that.  Here are the two that got a reaction.

Lauri: "sad" (my word) and I told Alison Lauri's step mom just died from lung cancer.  This got a huge reaction.  Alison pulled her hand and sheet up to her face.  Her eyes welled up a little and her face contorted.  I thought she might cry (she has not cried at all btw..).  She started to yell and then suddenly regained her composure and calmly and clearly said "She died from lung cancer."

Wayne: "dickhead" (my word).  She arched her back and started grunting.  She said "my word for dickhead" and I could see in her expression that she knew she said it wrong but couldn't get the right words out.  I'm assuming she was trying to say "That's my word for Wayne".

She says "Shiite Muslim" over and over.  I think it might be her new sh word since I banned shut up.  But at least she doesn't yell it.

I told her that she was on Prozac and hopefully that would help her.  She screamed about that.

I listed a bunch of words she could use to describe how she is feeling.  She said "Pain.  I'm in pain."  I told her that was a start and now she needs to say what hurts..your head, your shoulder, your psyche, your soul?  She couldn't answer.


The skin on her feet is cracking.  I rubbed lotion on them.  I massaged her legs.  She seemed to like that.  She said it hurt when I lifted her right leg by cupping behind her knee.  I laid her completely flat and tried to get my arms under her back.  I could only get as far as her shoulders but she seemed to really like that..who wouldn't??

I also let her pick out some new clothes.  I told her we were going shopping and made it clear that she needed to respond with yes or no.  She repeated "shopping" several times.  She said yes to maybe 2 items and no to about 4 (out of 8 things).

She is scheduled to get a hair cut on Tuesday.  She needs her nails cut.  I'm not the girl for that but I will if I have to..

They are taking great care of Alison there.  It is a small staff but they are always working hard and are very kind.  They did get her an air mattress in the very first days she was there.  I have been meaning to mention that.

We also listened to three Mumford and Sons songs.

Lauri is going to visit tonight.

Mary Pat's Wednesday Visit

Mary Pat sat with Alison for about four hours yesterday.  She did not report any new behavior or developments but said Alison seemed comforted by having Mary Pat there.  We need to figure out how to get Alison a special wheelchair..a Geri Chair so she can get out of that room.

Alison is signed up to get her hair cut on Tuesday.

Spoke with Psychiatrist Dr. Nayyar

prescribing 20mg Prozac to start and will have the Psychologist follow her as well.

Amy's Tuesday Visit

Alison was extremely tormented and vocal today..yelling mostly.  She was trying really hard to say things to me but would trail off right at the juicy part.  So here are the random things I can remember her saying.  They are in no particular order but neither are her thoughts as far as I can tell.  She did smile/half-laugh when Soren asked if she was there because she is having a baby.  And she chuckled when I asked her if she owed Mike Greenway money.  Those last two sentences were the high points of this visit.  It was a rough day today.

"What did I do? What did I do?"

"She's a shit."

"Why? Why? Why?" (she says this a lot)

"Shut up"

"You have to understand..."

She said these kinds of things the entire time.

Amy: "Do you know who you think you would want to be your guardian?" 

Alison:"MOTHER!!!"

(Reenie, I was never able to get a clear answer from her on this question..)

She is continuously scratching the side of her stomach.  When I ask her why she is doing that or make her stop, she gets a strange look on her face..like she didn't know she was doing it.  It seems like a nervous tick.

I met with the social worker (last name Raj I think) today and gave her some of Alison's background.  She is concerned about Alison's state of mind and said as soon as she left me she would talk to the psychiatrist.  I gave her this blog info in case she wanted a more complete picture of Alison's day to day.  I also got the medical assistance forms..the abbreviated version since Alison is already in the system.

She was extremely hot and sweaty today.  I turned her AC all the way up, uncovered her, and put a cool cloth on her forehead.  I need to arrange to get her hair cut this week!  I'm not sure how they do it on someone who can't sit up.

Mary Pat's Experience Yesterday..after I left with the kids

I want to preface this post by saying that the strides Alison is making are great and yet so small at the same time.  She is so bad off.  She is depressed, angry, uncommunicative and immobile most of the time, sometimes catatonic almost.  What little she does gives us though, indicates to me and others who witness it, that the Alison we know and love is indeed in there and that she is aware of her situation.  Although she does holler out, Mary Pat says she ramped it up once I left with the kids.  She seems to know who we are and interacts with each individual the same way she used to.  I can almost see gratitude and tenderness in her eyes when she sees me.  She rants a lot to/lovingly verbally abuses Mary Pat.  She tones it down around the kids.  She barely interacts with the staff.  (But she has had some communication with her nurse Eric.)  Her cognizance/ability to have different kinds of relationships with people (just as before) seems significant and promising to me.  And while all that is great, I wonder how much this awareness is contributing to her (lack of) willingness/want/ability to recover.  Lauri has said that Alison relished being cared for after her aneurysm.  She loved being bathed and being in diapers.  Lauri keeps stressing that she REALLY REALLY LOVED it...in a seemingly Freudian way.  Is this/will this have any bearing on her motivation?  Maybe it is just too soon to speculate/expect much right now but her emotional pain is palpable.  And it is heartbreaking to see both Stella and Alison wanting nothing to do with each other.  What is that about????


On to Mary Pat's account...WARNING!  RATED A for Alison:)

Mary Pat stayed a little longer after we left yesterday.  Before getting in the car, the kids, Stella and I walked around to Alison's window and waved to them from outside.  Mary Pat said Alison liked that.
And then...

A:  "GOD DAMN SHIT MOTHERFUCKER!!!!"
MP: "You're really frustrated?"
A:  (moving her head side to side and saying repeatedly) "Frustrated, frustrated..."
Alsion contintued hollering.
MP: "Knock it off!"
A:  "You knock it off! Why is this this way?"

Later..
MP:  "Are you in pain?"
A: "Yes"
MP: "Your neck?"
A: "Not exactly."
MP: "Is it your head?"
A: "Yes."
Mary Pat got her some Tylenol.

Stella's Visit

The kids and I took Stella to Alison's physical therapy session today.  When we arrived, Alison was sitting on the edge of her bed with the help (a lot of help) of Jennifer (Physical Therapist).  Alison showed no emotion or said anything upon seeing Stella.  Stella sat by her side and the therapist helped Alison reach for Stella's head.  Alison did move her fingers to pet her a little bit.  After about a half an hour of sitting up, Alison was exhausted.  We put her back in bed and put her hair back in a head band.  She continues to yell out a lot.  Jennifer says this is a natural response and not necessarily a cry of pain.  And that she may not even know she is doing it but that it is important to respond/acknowledge her when she does it..to let her know she's doing it.  Mary Pat had mentioned that she asked Alison before why she yells like that and that Alison said she didn't know.  I told Alison that if she is going to yell "oww" all the time, then she needs to come up with a different word to let us know she is in pain.  I asked her what oww means?  "Are you mad?"  That got a HUGE response:  "Mad! Mad! Mad!  Shit!!"..gritting her teeth and moving her right arm (almost like pounding her fist).  Mary Pat and I said we didn't blame her for being mad and acknowledged that it really does suck but we assured her that we are here for her.  I keep trying to stress that the more she can communicate, the more we can do for her and in the meantime we will just keep guessing.

We set up her CD player and put on Peter Gabriel.  It's hard to say of she liked it but she didn't seem to dislike it.  EVERYONE..PLEASE MAKE SOME CDS FOR HER.  All kinds but soothing.  You can mail them to me if needed.  Amy Principe 1131 Bay Ridge Road Annapolis MD 21403

She didn't talk very much today.  She smiled once at something Soren said.  Mary Pat being totally goofy got no response.  As we were all leaving, she really started yelling so Mary Pat decided to stay a little longer.

I spoke to her nurse today..not Tonya her main nurse but Eric.  He fills in whenever Tonya is not there. He has been giving her Tylenol.  It seems like her neck and shoulder are bothering her most.  I asked him what kind of therapy they were providing her.  He said PT and most likely speech therapy.  She has not been evaluated by the psych nurse yet but I think that has been ordered.  The nurse did say that there will be a Care Plan Meeting at some point soon.

Visit from Andy

Notes from Mary Pat's Visit

via Reenie:

last Friday

When Mary Pat went in to see Alison (the first day that Alison was at South River), Mary Pat started prattling on with Alison, talking about this or that.  All of a sudden, Alison said (clear as a bell): "Shut up Mary Pat".  When Mary Pat got all excited, saying that Alison knew her name, and so forth, Alison said (again, clear as a bell) "Stop patronizing me".  Mary Pat was very encouraged by this, of course!

Also, while Mary Pat was there, Alison sometimes hollered out (not saying anything in particular).  Mary Pat asked why she was doing that, and Alison responded "I don't know".  When Mary Pat asked if something hurt, and asked Alison to point to whatever hurt, Alison said "I"m not in pain".  (We know that Alison often is in pain, but at least at that moment, Alison was able to articulate that she wasn't.)

Alison had a lot of visitors today.  Her cousin Andy visited.  I stopped by briefly with some new clothes and while I was there Mark and Dawn showed up.  Alison was not very responsive today.  She did not talk at all but was crying out "oww".  She would sometimes look at me but mostly she seemed to look through me or above my head.  She was all bundled up and seemed very hot.  I aired her out a little bit.  The attendants came to turn her on her side.  (That was the first I've seen that!!!)  Alison's roommate had her TV on soooo loud.  I wish she could have her own room but at least she seems well-cared for...

Alison's TV is broken but the maintenance guy said he would hook one up if we got her one.  Maybe she would like to watch some football??  Honestly though, as of right now, I am at a total loss for what she needs/wants/what is good for her.  Hope to learn more this week:)

Back tomorrow with Stella!  Mary Pat will meet us there.



P.S.  Please post your observations from your visits in the comments section.

Favorite Music

I have Alison's CD player in my car and a handful of her CDs. I will leave all that with her next time I go. She does have a roommate at the moment so we have to be mindful of that...

I know she likes REM, the Eurythmics, and Mumford and Sons.

From Kathie Narciza: 

Mumford and Sons "I Will Wait for You"

REM  anything from Green

Heart and the Hand "Rivers and Roads"

Fleet Foxes  anything

From Don Peyton:

"Stella Blue"

"Ripple"

Our First Visit

Soren, Anton, and I (Amy) visited Alison today at South River.  She lit up when we walked in.  I told her I had a black eye.  She said, "I noticed!" and laughed.  She was happy to see the boys.  Anton sat at the end of her bed and ate his lunch.  I asked her how she was..mentally..she clammed up and looked out the window.  She kept saying "owww".  At one point she said it really loud and scared Anton.  She noticed and told him she was sorry.  I massaged her neck and she thanked me.  She is in there and aware and able to communicate on some level, however, the nurses and staff are seeing something completely different.

I introduced myself to the nurse, Tonya, who at that moment was sorting through all of Alison's paperwork and medications.  She told me Alison was just transferred to that wing and they are still trying to familiarize themselves with her and her case.  I let them know that she had motioned that her neck was in pain.  They did not say what they would do for that but that she had been "crying out".  Tonya told me to bring in some clothes for her because they want to start getting her up and moving.  As we were leaving, the physical therapist entered.  Her name is Jennifer.  She is there Monday through Friday.  She showed me some ways to help Alison with movement while I am visiting...basically things that would feel good if one was lying in bed all/most of the time.  Jennifer has been doing "coma stim" on her.  I'm not sure of the exact details on that but she did say it was more intense (meaning painful).  She said the therapy was somewhat limited because Alison is not responsive.  I asked to speak with Jennifer outside.  I told her the details of our visit and she was shocked.  She right away said that she would order a psych evaluation.  I said that Alison is most likely aware of what has happened to her and that she is probably mad and sad.  Jennifer responded "Ooohhh..she's gonna get it now!!" (meaning intense therapy now that she knows she's playing possum).  She encouraged me to bring Stella as much as possible to incorporate into the PT.

Also,  Alison looks clean.  Her mouth is cleaned out...not caked in yellow gunk and her lips look moisturized.  Her hair is a little greasy though.  I told her I brought her clippers to chop her hair and she laughed.  We might do that soon..

I am so far really impressed with South River.  They are open and kind and proactive it seems.  I will try to get there this weekend with clothes and a notebook but will definitely be there Monday for lunch with Stella.

I left copies of Catcher in the Rye and Black Beauty if anyone wants to read to her.  Just mark the spot where you leave off.  I will leave a notebook for any observations anyone wants to leave and transcribe them to this blog for everyone to see or everyone is encouraged to post here.  This will be my main platform for information so check back daily for updates.  I don't mind texts and phone calls at all but I can't commit to calling people every day.

Mary Pat was there yesterday.  I think she may have been in a different room.  Alison is now in Room 125B.  Window view.  She might need a bird feeder outside her window if anyone has one:)

I will talk to Jackie in Financial when she in in on Tuesday about the Medical Assistance application.