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.