More of the Same

I visited Alison on Tuesday and Wednesday. She was frustrated, agitated, and uncomfortable. She was calling the nurse (bad) names and said the mean nurse was holding the nice nurse hostage so she wouldn't help Alison. 

She can find no peace in most moments it seems.  When I'm not there, she has the nurse call me and Alison tells me to come right away.  As soon as I arrive, she wants to call Andy or Reenie. If she's in bed she wants out, if she's sitting in her chair, she wants to get in bed.  She was demanding that I get the nurse my entire visit even though she had just been there.  And she has lost the politeness with me that, up until now, she was always able to surprisingly muster.  (I knew it was only a matter of time before this happened and I don't take it personally.) 

I was unsuccessful in calming her Tuesday. On Wednesday, I asked her if she wanted to listen to music. She said no, that it made her lungs hurt. I put it on anyway and she stopped screaming for a few minutes at least as I left. 

She is complaining about difficulty breathing and she is raspy. Her oxygen levels are normal though. 

She is having greater difficulty articulating and sometimes her words come out in a strained garble and she doesn't know it. She gets mad at me if I ask her to repeat it, saying she just said it. She seems to think she is speaking clearly.  Interesting. 

The physical therapy I have witnessed seems extremely short.  Alison appears to be somewhat willing to participate but then "digs in" and becomes impossible to manipulate, bringing the session to an immediate end.  

Some of this behavior could be a result of the medicine she is on.  I hope they can find the right formula for her to give her some relief from the mental anguish. 

Andy visited today and reported that it was a good day so hopefully she will post about that. 

Not a Good Day

Alison is really really confused today. She cannot find the right word and often just repeats what is said to her. Attention span is 30 seconds, not five minutes and she is in and out of sleep.

Unlike other days when I can calm her, she was anxious the whole time.  She is back to yelling during the day. She really does think that she can walk and that she is getting out today and going home.

I had a chance to talk with the "head nurse" who says she manages the floor.  She said that Alison has not stopped yelling for three weeks and that the meds have not yet made a difference.  As well, she reported that Alison cannot stand without two people and that trying to assist Alison is too painful for the staff .  I shared that I saw a marked difference this visit and questioned the side affects of seraquel.  Let's hope today's confused state is temporary.

Amy comes home and sees Alison tomorrow.  My fingers are crossed that Alison will be present for her.

More New Meds

When I showed up this morning, Alsion calmly told me she had been thrown in the brigg. In jail. Really. While I knew this was not the case, I knew something was up but it took some teasing to find out. Turns out that Alsion has gone back to screaming through the night. She said she wants out of there, she wants to walk, she wants it now. She is angry and frustrated. So she threw her plates too. So, they gave her Ativan IV to calm her. It put her in her "jail"... She and I talked that it is SAD that Alsion cannot have everything the way she wants it right away. That must be frustrating. But Alsion needs to look at it as a long road with improvement at each step. She needs to work on it AND she WILL get there. We also talked about not getting angry with people around her but being NICE to them because they can help her imrpove. The idea of using sugar instead of insults. Alison may have been scheduled to be moved but given the last two nights of lack of sleep, she is not a candidate to be moved. The hospital is working on anti-axiety meds to get it right. They want to stop Alison's perseveration on the negative. Next med they are now trying is a mood stabilizer called Seraquil. Mark and Dawn were there today along with another friend. Come visit. It is always fun, or at least entertaining!

More Progress

Confusion continues…  When I got there today Alison was crying.  It turns out she thinks she can walk and did not like that she was told she was not permitted to go outside.  I showed the staff how talking slowly and quietly calms Alison so she regains reality.  I then gave her a bite of the favorite bacon chocolate bar she had mentioned last visit.  I will dole out pieces each visit, not all at once.

I had arranged to have PT come when I was visiting Alison today.  They did have her “stand” again, this time 4 times.  The PT staff was heavily supporting her against the frame of the bed though.  After PT, Alison cried and said she was not “successful”.  I said no, she was SUCCESSFUL and that it takes baby steps.  She first has to rebuild her leg and core muscles so she can hold up her weight and then they will teach her to walk.

Other good news.  It looks like Alison slept through the night last night, without crying out all night. Maybe the new meds they are trying are helping her anxiety.  Hope it is more than a one day occurrence for her and the staff!

At one point, while Alison was sleeping a bit, I remembered that many of you do not know that the progress includes things we don't miss!  She is no longer screaming “OW” non-stop or using swear or derogatory words, the itching that drove her crazy is gone, and she has cut way back on calling “Help Me” over and over.

I have asked the nurse to write up that Alison has recurring pain in her left shoulder since she fell out of bed at South River (under her arm, close to where the bottom of the shoulder blade and ribs meet).  Today, perhaps because of the strain of the PT, Alison’s shoulder began to hurt a lot.  I also noticed that Alison has stopped using her left arm, perhaps because of the pain.  I hope the doctors investigate what is wrong as the CT (x-ray) taken when Alison first got to the hospital showed nothing.

I will head back again Saturday.  Does anyone want to do a phone or Facetime call with Alison?  Text my cell if you do (703) 201-6676.

Baby Steps!

I saw and helped Alison stand up today!  When I arrived at 2 PM, I found out that she had refused PT and was not sitting in her chair. The staff decided to have her stand up to pivot into the chair. While that isn't exactly what happened, we did get Allison to stand (with a nurse and me supporting her) at the edge of the bed for five seconds. After that her knees began to hurt and she felt scared and so she sat back on the bed. She then spent maybe four hours today in the chair. Good news.

Like every time I see her,  we go over where she started after her heart attack , how MUCH progress she is making, and then discuss a vision to work toward.  It used to be "grow strong" but starting today it is "walk",

I did not post from my last visit on Fri Oct 18.  That was not a really great day for her. She recounted a number of recent memories that were not true ( like saying she stood up while in fact she had only sat on the side of the bed.  We also talked about her feeling afraid.  I tried to share that with the drugs and with her brain injury, she might feel that things were scarier than they really were.  That is not to say she is not feeling it, just that part of it might feel worse due to her confused state,

Today's visit was much better. She really is feeding herself vs having others do it.  Sometimes it is a bit messy, sometimes she finds it easier to use hands vs utensils.  I tell her to use the utensils so she can rebuild dexterity to use her phone.  She did focus a lot on chocolate and mentioned her favorite was Vogue bacon chocolate or dark chocolate bar.

I also talked to her about trying to become comfortable sleeping at night.  Nurses say she still cries out at night (and day).  I shared the recently discovered science behind how during sleep the brain repairs and cleanses itself.  So sleep is a good thing to look forward to.  With that , she fell peacefully to sleep!  Won't it be great for her if she could do this every time??

Sorry for typos.  Doing this off my cell phone screen.

Better Today

I don't have much to report but wanted to post something positive, however small. I stopped by briefly to visit and to give Andy Alison's clothes in case she is moved while I'm on vacation next week. Alison was in much better spirits. Andy had a good talk to her about her fears. (I'm sure she will elaborate when she posts). Alison apologized for her behavior yesterday. I asked her how her night was. She said she screamed all night.  

I will go visit longer tomorrow. 

Helpless Helping the Hopeless

Alison was moved to the third floor today. Room 301. It was a difficult visit. I feel exasperated to be honest. There was some talk today that Alison might be transferred to a facility in Catonsville. And while this did not pan out, it left Alison in a state of paranoia, fear, and terror. She is scared to leave the hospital. She is afraid she will be harmed. At the same time, she is convinced that the nurses at AAMC are talking about her, hate her, are plotting against her, denying her care/meds. She was offended when the nurse closed her door because she was yelling. She watches the clock constantly.  If someone promises something in an hour and they don't deliver, Alison takes it personally and immediately brands that person untrustworthy.  If the staff doesn't chit chat with her, she thinks they are out to get her.  I could go on and on with examples. She is extremely hyper-aware/sensitive to everything..body language, sounds (especially jingling keys), what the nurses are doing/saying, a glance out the window, tone of voice, nuance, etc. 

She demanded that I help stand her up. I explained that I couldn't because neither one of us is strong enough. This went on and on until finally she was convinced she is paralyzed. 

She cried the whole two hours I was there. I used everything in my bag of tricks to console her. Nothing worked.  I bumbled through the whole visit. She latched onto my arm with all her strength and, sobbing, begged me to stay...the fear in her eyes broke my heart. I promised her that I was not abandoning her and that she was safe. And that Andy and I would be there tomorrow. She said she couldn't promise me that she would be here tomorrow. 

I warned the nurse that they were in for a rough night. They said they were used to it but the fact that I could not calm Alison the entire time I was there, made me think tonight would be different.  I urged the nurse to give her something for her anxiety. She was hesitant at first, saying that Alison can't have anything like that 24 hours prior to discharge.  I said she probably wasn't going anywhere tomorrow so hopefully they gave her something to take the edge off.

Her new room is bright and cheery and apparently Alison had remarked about that earlier in the day. She has a phone but she won't practice using it despite wanting to call people. I left instructions by her bed but she claims she can't read it. 

Let's hope tomorrow is an "up" day!!!

How to motivate???

Alison started bawling when she saw me, saying she missed me so much. It took me a while to calm her down. Her stomach hurt (nausea) but she couldn't remember what she had eaten this morning. She wants to get out of the hospital. She says one of the nurses is mean to her. I asked her how is she mean. She said she doesn't talk to her. She just does her job. Ohhhh Alison:(

I told Alison the only way she will get out of bed and get her life back is if she does the work. She says she wants to get better but she doesn't want to do the work. It's too hard. I told her if she keeps refusing therapy, they will cut her off and then she will never get better.  "Turtle" she says.  She understands but she just isn't motivated.  I told her next time I come, we are going to talk about what she wants her life to look like and she can work toward making that happen because she is the only one who can control that. She said she wants to die again. I told her to will herself to die then. Then she said "I don't really want to die ".    "Then will yourself to get better."

She was so worked up and overwhelmed with self-pity. Who can blame her?  I turned out the lights, put on music, and made her do her stretches. When we finished I said "You just did the work!"  

They are moving the whole 5th floor of the hospital to the 3rd floor tomorrow (Thursday) so I'm not sure what her new room number will be. They are still trying to find placement for Alison. It looks like DC/Northern Virginia or Baltimore will be where she is headed. 

P.S.

BE QUIET

BREATHE DEEP

Andy posted this sign in Alison's room. Andy, you crack me up!!!

Up and Down and Up Up Up We Go

Up - when I arrived today, Alison was in a wheel chair for the first time in 3 weeks (my guess)
Down - she was confused and crying and asking to be put back into bed.  We could not figure out if it was pain.
Up - We turned off all music, shut doors to reduce noise, and tilted her back a bit and she calmed down.  She finally said dizzy!! Ah ha, she needs to work back up to being the chair and vertical!
Down - It turns out she has refused PT for the previous two days.
Up - When I explained, Alison understood that she faces a "three strikes and you're out" situation with PT.  She cannot refuse to do it as she will loose insurance coverage.  And she needs PT to grow strong and get better
Down - will she remember this tomorrow?  We all need to remind her that she has to do PT/OT/Speech each time.
Up - she ate her own lunch
Up - I brought her a SMALL piece of dark chocolate mousse cake from a party.  YUM YUM!!
Up - Alison regained her sense of humor and perspective.  It turned out to be a great visit.

Eggs For Breakfast

Alison had eggs and graham crackers for breakfast!!!  She was very excited and proud.  She drank her pain medicine and swallowed about eight pills mixed with applesauce.

I brought a suitcase full of her stuff from South River.  She demanded that I throw her pink Crocs away.  She didn't want anything that was there or that they had touched.  I set up her cd player and left the beloved Hours.  I put a few pictures up and Andy's "You are loved" sign.  (Andy, I forgot the Grow Stronger sign at SR but Alison was asking for it.. She said she needed it.  Do you mind printing another one?)  I also left a tennis ball.  I wedge it behind her shoulder to alleviate pain/pressure.  She likes it.  And she has her reading glasses which work.  She read half a sentence, not very well but she could see.

She was in good spirits mostly.  She complained to the nurse about the applesauce.  I keep reminding her that she's not at the Ritz-Carlton...  She says if she has to go back to any nursing home, to just kill her.  I told her she will go back but we are trying to find her a better place.  She is mad at some of the staff at AAMC because they did not invite her to a going away party for one of the nurses.  She says she didn't want to go but she wanted to be invited.  She is convinced that they gave her triple the dosage of sedative so she would sleep while they partied.  Jingling keys are alarming to her.  She thinks it is glass breaking.  To witness the simultaneous presence of clarity and delusion is fascinating, disturbing, and entertaining all at the same time.

She wants her phone badly and keeps asking me for it.  I will bring it next time I go to see if she can use it.  I tried to get her to send Reenie an email from my ipad.  She had trouble trying to spell Reenie's name and quickly got frustrated.  I think this might be the case with her phone too.

I waited as long as I could for the doctor to come in but never saw him.  They are talking about taking the feeding tube out.

She cried/freaked out toward the end.  She can't bear the physical pain she is in.  (They had just given her pain medicine 20 minutes prior)  She says it's not fair and she hates that she is the only one who has to suffer.

She says she yells all night and that she has gotten in trouble with the nurses for keeping other patients awake at night.  Despite all the bad things she told me about the place, Alison is pretty content and, like I said earlier, is proud of her accomplishments.

Renewed Progress SO VISIT!

Andy Riedy 10/10/13

As Amy said, Alison is pampered by staying at the hospital. The Physician’s Assistant (“PA”) and staff are really paying attention to Alison and her situation. When I arrived, Alison “came alive” though she did call me B… and told the staff to call security to kick me out. THIS WAS OBVIOUSLY a joke to Alison and me BUT we had to explain it to staff… They said she had been in pain and out of it for the last two days and were delighted to see Alison so cognizant and involved. Alison and I explained her tendency to “turtle” when asked to do something and that staff should push her/engage her. The PA also mentioned that Alison’s previous aneurism and stint may cause her to not filter her communications as well.

First good news. Speech Therapy came yesterday and they said to try to have her eat. Alison ate saltines and applesauce. It turns out that Alison only had one speech evaluation while at South River (when she first got there) and had had a hard time with water. The current PA said water is hard to do and needs to be “thickened” to limit the chance of choking (how do they do that?). I gave the PA Alison’s recent history of cognitive and physical improvements and they think Alison is ready to try more food. They will do it in a supervised way, limit it at first to foods that are soft (eg pudding etc), and only do it when she is not medicated or drowsy. They will leave the feeding tube in place until Alison can prove she can competently eat. Alison did repeatedly mention she wanted the Toblerone chocolate bar left at South River (Amy did they give it to you)….

Second good news. The PA is astonished at how far Alison has recovered since the end of July. She had written everything down so each day's and night's staff will understand.  The PA said she would be restarting physical, speech and occupational therapy which were stopped at South River when Alison’s insurance ran out. Alison can roll onto her side, but now gets dizzy when they try to sit her up (because South River stopped putting her in the wheel chair?). PT will help her get this back. The PA feels it is important that rehab be restarted now to get Alison improving again. She said that after 90 days post accident, Alison would be eligible for Medicare (aid?) and that services incurred in the meantime would be covered retroactively. This is something for Reenie to confirm?

Other good news. They have Alison in bed but not in a diaper. This will keep her bum from getting rashes. Alison today brushed her own teeth for the first time and they have ordered medication for the thrush in her mouth. The PA is also focusing on titrating her meds so her dosages are at the correct levels. And they ordered an X-ray of left shoulder that had hurt on and off since Alison fell out of the bed at South River. Alison even tried use the controls on her bed to control the tiling and TV (though this will take more work).

The staff said what was most important is to GET PEOPLE TO VISIT!! Alison is a very different patient when she has loved ones around her. She is at the Ann Arundel Medical Center in the hospital, North Tower, room 536. The hospital does not have any restrictions on visiting hours. We will put out an update if/when Alison gets moved to a new rehab facility.

?????

I had a a short visit with Alison today. She is so happy in her new environment. She has been moved up to the 5th floor Room 536.  A volunteer came by and asked her if she would like a magazine to read. She is definitely being spoiled but apparently the staff have been explaining to her that she will go back to a nursing home soon.  And I think they were pretty honest with her about the realities of a nursing home.  She said she had a good talk with the Irish nurse and although Alison could not recall what she said, she did know that is was good advice and she offered a different perspective about her situation.  Whatever it was, it was comforting to her.

Alison also told me a crazy story about an incident that happened at the hospital the night before.  The man in the room next to her was freaking out, yelling "stop injecting me".  He was screaming so loud and breaking glass.  Alison started screaming for help but no one could hear her because she was behind a window.  But she could see all the staff run past her room with their mouths agape in shock.  The doctors were talking about this man, using his full name.  Alison couldn't believe they were violating HIPPA like that.  It turns out the man jumped out of the sixth floor window.  Alison thinks he must have died.  I was kind of confused because the ER is on the first floor and Alison is on the 5th but I believed her.  She said they checked to make sure there was no broken glass in her room.  So much detail!!!  I'm leaving a lot out I'm sure.

We were talking about how crazy and unbelievable that was and she kept telling me to Google it.  Well,  I did and this did actually happen...in August of 2012!!!!!!!!!!!!!!!  I don't know where she got this story.  Maybe someone was talking about it while she was asleep and she incorporated it into her dream, maybe she talks to dead people.  I don't know.  But I do think it is important to note that she thinks she really witnessed this.  Her mind is playing serious tricks on her, making it even harder for us to discern what is real and what is not.  And how do we respond and help her through these things that she thinks she is experiencing?

Alison also told me that they were going to have an occupational therapist come in to assess her swallow ability.  She is dying to eat and drink.  She talks about it a lot now.  I'm not sure if this is true or not.  I do know that they are trying to find a new home for her but her needs, past behavior, and insurance issues will make placement more challenging.

She was so cheery and content.  I love days like this!

Andy visits tomorrow (Thursday) and I'm sure I will stop in at some point.

Transition

Alison was taken to Anne Arundel Medical Center again yesterday for the same thing as last week..saying she doesn't want to live.  She felt better after a while but after several interviews with various staff members, it was determined that Alison needs to find a more suitable placement.  Until they can find a place that can handle her medical and mental needs, she will stay at AAMC. Right now she has a bed in the ER.  It is uncertain where/when she will go.

A Good Snuggle

Today was good. Tank jumped right into bed and snuggled with Alison for an hour and a half and Alison (and Tank) loved it!  

Alison was very mellow today.  She had a few quick moments of the freaking out/help me but was pretty calm the rest of the time.  We called Philip and they talked for about ten minutes.  I told her Andy was coming tomorrow and she was excited for that.  I made her do some "bed yoga".  I put on The Hours again.  She said it was her favorite song and asked how I knew to play that...Groundhog Day:)

When it was time to go, I moved Alison's arm off Tank.  She moved it back, smiled and said, "You know you COULD leave her here all night".  I wish I could. 

Notes From Mary Pat

Mary Pat's notes:
Alison was screaming so loud Mary Pat could hear her at the front desk. Every door in the place was closed in an attempt to keep the noise out.  She seems to be on a loop.  Screaming curse words and help, settling down, sometimes apologizing, and starting up again.  This went on for the entire visit.    When Mary Pat told her to say something else in place of "help me", Alison came up with the words "assist me".  The next time she started her rant she said instead "Assist me, assist me."  She and Mary Pat both laughed because those words just didn't work in that scenario.  She does not scream when she is distracted though.  There is a crossword puzzle in her drawer that Andy brought that is helpful.  She has great movement of her left leg and can move it on command.  Her physical therapy is on hold until the finances/insurance can be sorted out.  This could be months.  All visitors need to get her moving even if it's just a little stretching.


Amy's commentary: This gives me a tiny glimmer of hope though that Alison can control what she is saying/screaming to some extent.  I am concerned about the things that come out of her mouth.  Even if it is like Tourette's and she has no control over it, the staff and residents are hearing this 24/7 and I am worried about the effect it may have as far as their attitude toward Alison.  My heart breaks for Alison but it also breaks for her roommate, Ms. Johnson, who will most likely spend her last days there listening to the loud cursing and racial slurs.  I hope this will pass..and soon.

I'm going over there today and taking one of the little dogs who loves to jump on people's beds and snuggle.  I will take Stella later in the week.  I am also going to start seeing if she can play simple games on my ipad.  If anyone has ANY suggestions about any thing that might be helpful, please post it.  I have no experience with this and am just grabbing at straws.

I'm Home

Went to the hospital to see Alison only to find out she had been discharged...without the hospital notifying anyone!!!  I then headed over to South River to find Alison languishing in her bed like a Renaissance nude. She was so happy and carefree!  "I'm home!", she said and NOT sarcasticly.  I honestly felt like I was in some weird, trippy dream.  It was not what I was expecting but a pleasant surprise to see her free from distress...at least for the first five minutes. 

She said they switched her to Welbutrin and that it was her physical pain that makes her want to die.  She said it had been building up and she couldn't stop herself from crying these past few days. She did start to freak out several times throughout the visit.  I tried to calm and reassure her the best I can.  She was visibly trying to control herself.  She kept begging me to help her. I told her I'm doing all I can by being there and being her friend and advocate but there isn't much else I can do. I continued to remind her that this isn't forever, she's just taking a vacation from her life, take deep breaths through the pain and frustration, visualize white light, pray to god, etc.  So far my brain washing is only mildly and fleetingly effective:)

I asked her if she was ok with being at South River.  She said yes.  I told her she was not bound to this place and if she ever wanted to transfer she just had to let us know. She said that's exactly what they said at the hospital but that this was fine. She just wants to "get out of the pain".

She was yawning and cold. I bundled her up in her blankets and put on The Hours CD.  She recognized it immediately and exclaimed "This is The Hours!", like she had no idea she owns this CD or that I play it for her almost every time I'm there. "This is good" she said as she drifted into sleep. 

Philip was on his way to see her when I left. 

A Sad Turn

After an entire night of begging the staff to kill her, Alison was moved to Anne Arundel Medical Center for a psychological evaluation.  Andy and Mary Pat spent most of the day with her in the ER waiting for test results and answers/plan of action.  None of that ever came.  When I arrived late last night, they asked me to not disturb her as she had just fallen asleep.  The nurse said she had been inconsolable all day.  They will do the psych eval this morning and determine what course needs to be taken..ie meds and possible transfer to a mental hospital.

Reports from Andy and my niece who saw her yesterday lead me to believe that she is cognizant and able to communicate intelligbly.  She is in complete anguish.  I will update later today as soon as I hear anything.

Andy and Mary Pat..thank you!!!!!

:(

Alison was not in good spirits. She told me I was irritating the piss out of her when I was just sitting in silence. She didn't want to get in her chair. I told her she had to, that we had a date to go outside. She said "turtle" (acknowledging that she was clamming up/being defiant).  We went outside and I stretched out her limbs and neck. Her mood did not improve but she did thank me for coming.

She complains of left shoulder, wrist, and side of neck pain. She may have hurt herself falling out of bed.  She has a big knot on her shoulder that could use some attention(..Andy??? If you're planning a visit soon).