An Improvement

Yesterday, Alison was asleep. I didn't stay. 

This evening she was lying in the dark but was wide awake and beckoning me through the window to come in.  The first thing she asked was if she could come live with me. I tried to explain that I couldn't care for her. She said they don't care for her at the hospital. She was very talkative. I would say I could understand about 75% of what she was saying. She was equable and very matter of fact..and neither happy nor sad. 

She was plotting to get out of her bed. She wants to roll out. "You can help me". She is all about getting out of there. She does not have any strong opinions about the staff.

She was complaining of thirst just as the nurse arrived with dinner.  I fed her but she did not eat that much. No more than ten bites. The nurse told me Alison is not to use a straw for drinking as she could choke.  

The nurse also told me every visitor is to check in with a nurse before entering Alison's room.  There is a sign on the door that I never heeded and they never enforced..until tonight.  There is also a sign saying to put on gown and gloves before entering. They had told Reenie that it wasn't necessary but made Philip and Kathie wear it just the other night. I wear it because I'm a little paranoid.  So I'm not sure what is really the proper protocol.  I'll just do whatever the signs say from now on so I don't get scolded and/or infected:)

But back to Alison...

I found her stress ball that was wrapped up in her sheets when she was transported to the hospital from South River. She wanted it and was squeezing it. And then she said (totally deadpan) "Remember when the nurse found this in my bed and asked if it was mine? That was hilarious."  I thought that was so great that she remembered that and that she was able to say it so clearly. 

Andy, Alison's nails are calling you!!! :)

Best visit in a really long time. 

Thursday

Philip and Kathie visited. 

And they said Christina had been there earlier. 

Merry Christmas

Alison seemed no better today than she was prior to Reenie's visit, except that I was able to wake her up. Her response to my "Merry Christmas" was "What's the point?".  She said she's ready to go home and wanted to go out for breakfast (I think). I couldn't understand much of anything else she said. 

The staff would not tell me anything other than she was "good".  She seemed drugged and was not in good spirits but she was not yelling. 

Two Visits

Both times, she was asleep but I was able to rouse her. She was very low key but content. She is difficult to understand but is talkative. She requested a chocolate milkshake. She did start yelling for the nurse because she wanted something. I could not figure out what it was. 

Claudette had stopped by a few weeks ago and delivered a fruit basket. I never saw it and none of the staff mentioned it. Andy, do you know anything about it?  I know Alison couldn't eat any of it but it would have been nice if Alison had known Claudette had brought it. 

Alert both times! A marked improvement, I think. 

Update From Reenie

From Wednesday, Dec. 18

Alison was the most alert today that she's been this week since I've been here. I saw the doctor this morning and he said that he will start cutting back the Depakote as well as the Zyprexa that has already been reduced (and will continue to be reduced still further). He will also reduce the Wellbutrin (anti-depressant).

Christina, her mother, and baby Deklan (sp?) visited this morning.
Christina is here until Dec. 30 and hopes to visit every few days while she is here. It was a good visit but Alison often struggled to find the right words for what she wanted to say. She knew the words weren't right (although often they were close). Sometimes we could guess what she wanted to say, other times not.

By later in the day, Alison's communication was much clearer. She talked with the nurse about our family's role with the Littman stethoscope and her language was clear and coherent. We talked about a number of things and her words were coming much easier to her. She raised topics herself (like what time did I need to leave for the airport on Thursday).

By the way, she wasn't mumbling at all. Even when she couldn't find the right words, she was speaking clearly, even though not always understandable. I often felt like we were playing charades--I was trying to figure out what the word was, whether it sounded like what she was saying.

Sometimes the word is probably close in meaning, but still hard to figure out. Last night she kept asking for a "curtain". Finally, I saw what she was pointing at--the paper towel dispenser with a paper towel hanging down. It did resemble a curtain. She wanted the paper towel to wipe her mouth. (When I go in tomorrow, I will ask her to identify the paper towel and see if she now uses the right word.)

Oh, and I did get legal guardianship today. And I visited the bank to get the financial stuff rolling, and talked with accountants at Communicare (South River is part of that network of facilities). They are handling her application for long-term medical assistance.

There are signs in Alison's room now saying No Intubation, and No Chest Compressions. This is what we put into place last week. If you have questions, please let me know.

Finally, I am going to see if i can get a complete history of her medications while at Anne Arundel. They wouldn't even talk to me before I had the legal guardianship. Maybe now I can get somewhere.

please feel free to put relevant stuff on the Blog (not sensitive details)

Alison does have visitors from time to time. I think it would be good to have them email or text Andy at ariedy@cox.net (or in Mary Pat's case, call you) or whatever to let you know about the visit, so their visits can be included on the blog. Even if they only provide a sentence or two about their visit with Alison, this would be good information to have. It will help make a more complete running record.

And more frequent videos will be helpful. Just so we have a record, More soon, Love, Reenie

Reenie Visit and Request

I went to see Alison (and Reenie) today. Alison had eaten breakfast on her own but was asleep by the time I arrived. So Reenie and I got a chance to catch up. Reenie had long discussions yesterday with hospital staff and doctors. She and Jimmy are asking for selected Alison's meds to be titrated back to see how her cognition, swallowing, and physical movement improve.

Tomorrow is a big day. Reenie goes in front of the court to take over legal guardianship. With this, Reenie can restart the proceedings to get Alison covered under long term disability insurance. We will wait to see whether this improves Alison's placement in a rehab facility.

I need HELP. With the holidays, kids home from school, two family xmases etc, I will not be able to do my regular visits between now and the end of the year. Can others step in to visit Alison more often during this holiday season? Maybe text Amy when you are going in so she can coordinate visitors c 410-212-6707. Also send us notes from your visits that we can post to the blog on your behalf (ariedy@cox.net and amyprincipe@gmail.com.

I left Alison a Christmas carol CD so play it when you go! Happy holidays!

Alison Pic from 12/13

Alison wishes all her friends GOOD CHEER!

Any Improvement Is Good

We had a good start to the morning. As I got to the unit, I heard her calling out, using a loud voice. That means she is awake, stronger and more with it. She was still in bed and had eaten breakfast. She is also moving her right arm and feet again, though not with vigor.

We Talked about Reenie's arrival in two days. We to alked about Xmas and she said she had to do shopping. I told her not to worry this year. It made her smile. We took the following picture to send Xmas cheer to friends.

The Nurse gave her Meds while I gave her Choc mousse to wash it down. Alison ended up swallowing the wrong way (again). It to took her awhile to relax.

After an hour, the meds kicked in and Alison became tired. She started mumbling again in between clarity. I ended up massaging her while her cd plays. We ended with quiet and calm.

She remembers Phil and Mary Pat visited yesterday. The only specifics she could share was how nice it was to have MP sit beside Alison while Alison dozed.

No Change (Again)

Today was another visit of cConfused mumbling from Alison, but it is always with intent. She did at one poibnt make me smile with "You can spend the night if you want".

Alison's body apprears to be stiffening up - it is hard to massage and stretch her limbs without causing pain. She looks at me deeply injured, then nods her head for me to continue.

I fed Alison half her lunch and some home made beef stew I had put through a food processor. She still has some swallowing problems despite the thick, smooth consistency of foods. Later, Alison forgot she had eaten so I was able to feed her a few more bites.

Today she is picky about which channel she is watching on TV. Suited talking heads on news shows do not make the grade.

Reenie is here in 6 days!

Sunday

Today Alison was awake!!!!  And sitting in her chair. She kept blowing me kisses. She seemed like a young child. She reminded me of my cousin who has Downs and who is just the embodiment of love. 

I had a really hard time understanding her. Her eyes were half mast and her words were garbled. And she speaks in fragments so you're not quite sure where she is going with her thoughts. She insisted that I take her blanket home with me. I kept saying "no, it's yours".  I finally said fine, I'll take it home but she told me I was pissing her off anyway. 

I try to make small talk with her but sometimes it goes awry. For example, I was talking about the cold weather and then about the mice that were in her house last year. She started freaking out. "I can't see the mouse. Where is it ? Get it. I can't find it !!!!"  Subject change!!!

She asked me what the dogs were doing.  And if I could call him..never figured out who him is. Wished me Merry Christmas. 

She seems neither happy nor sad. She is just there. She did yell out once (owwww) while I was there. Her aide said she was speaking in a British accent this morning so she must have been way more alert and animated earlier in the day. 

So glad she was awake this time and that I finally was able to really visit with her.  It makes her sad when she hears that she slept through a visit from someone. 

Can't wait for a new batch of visitors to come...Reenie and Christina..and liven things up for Alison!!!

I was there today too....

Alison was asleep most of the time. She would sometimes wake up when I asked her questions and sometimes she would respond but I could not understand her. She seemed different today...almost like she was mad or had a chip on her shoulder but was too tired to act on it. 

I massaged her arms and legs..no response. She said she could move her legs but wouldn't do it for me. 

No Change

“I walked. I really did.” Such is Alison’s current reality. During yesterday’s visit, Alison was in and out of sleep. She mumbles words that cannot be understood and that make no sense. She did wake up when I asked her to, that I had only an hour left and really wanted to spend time with her. But I did not find the alert, funny Alison today.

Alison had eaten breakfast (with nurse assistance) but refused lunch. I gave her half a can of boost chocolate pudding. I will bring tasty soft food when I can. Plus I brought up butter pats from the cafeteria for the nurses to add to her dinner potatoes.

I heard that Alison’s arm veins are bad and cannot take an IV. There is another type of arm IV that they cannot do as she may pull it out. But Alison is getting enough fluids. Her weight today is 161. She has only lost 4 pounds in the last 10 days of limited eating.

The nurses decided to not give Alison Depakote last night or this morning, to keep her from getting too sedated and not eat. The Zyprexa dosage has been reduced a bit (10 to 7.5).

As closing, here are examples of her current confusion: “My bread hurts”. Closest we could figure out was it was her bottom, after playing show and tell. She also keeps wanting to go back to her old room. Not sure where that room is.

Please take the time to visit Alison. The objective is to take care of her, not to converse with her – massage and food. After massaging and stretching her left arm, she can do very slight movement of it.

Still sleeping

Claudette visited yesterday. Alison was sleeping. Apparently, she had been up the whole previous night. 

More Sleeping

Alison is sleeping beauty again this morning. It turns out that she tends to be more awake in the evenings. Then they give her her evening Meds. They don't do it in the mornings because she is too sleepy.

They are trying to feed Alison thick foods. But when she is too sleepy, they do not feed her. In the evening, she gets about 10 bites in and then gets upset with the hospital food. In her sleepy state, she just heard me dicating this to Siri and said "it sucks". I was told by a PA that they have decided not to move forward on any feeding assistant devices or treatments until Reenie gets guardianship. HELP!

I also heard that they were titrating back some of Alison's medications to try and control the situation. But this needs to be confirmed. During Amy's visits this weekend and mine today Alison still appears confused and sedated.

Allison is back to using the words Oww and Help. But she is again unable to vocalize what is in pain because she is too asleep. Her eyelids were closed the whole time. When I asked for her to open them, she did for a blink and then shut them again. It feels like we are back to the confused stay she was in when she was first a South River.

Today I massaged her left hand which is very swollen with edema from lack of movement. And I raised it up on a pillow to reduce the swelling. For the first time, they have her calfs in pressure cuffs to assist with any edema there.

While it is depressing, Alison repeats words that I am saying as I dictate this note to Siri. So she says things like Edema and mashed potatoes, just after I have said them. It feels like she has an immediate cognitive loop. So before I leave, I am repeating to her the words love, love, love. I hope that word sticks in her brain for a while.

Friday and Saturday

Alison could barely keep her eyes open and I couldn't understand what she was saying..both times. She was in her chair.

The nurse said she still calls out but they seem to think the longer she sits in her chair during the day, the better she sleeps at night. 

She is not eating well. The nurse has to coax her to eat and this makes Alison mad. 

Pre-Thanksving Visit

Wednesday (before Thanksgiving, sorry)

It was a busy am for Alison. She had a bath and was in the chair. While not as awake as last visit, she greeted me with joy. They have started to give her all her meds, including the ones that cannot be crushed.

While she was somewhat awake, she was anxious and a bit confused. While I was there, I talked both with a woman from palliative care and with the speech therapist who had done another evaluation that am. It turns out the barium test shows that Alison is not always aware when liquid goes into her lungs. They do not know if it is the medications or something else. Alison can manage thicker foods like pudding but not things like honey or water. So they have her on IV fluids with simple nutrition. They are in touch with Reenie about whether to go back to a stomach peg, use a temporary nostril feeding tube that has the risk of being pulled out, or stick with thickened foods. Or they can use some combination.

Alison does not want a stomach peg as I think she sees it as permanent and keeps her from eating anything. She really wants to start eating again as it is part of her joy with life. She talked to me about all the foods she wants – also hard as she knows that tomorrow is Thanksgiving! Reenie will address the followeing questions when she talks to the hospital: Is there a mix of nutritional solutions eg limited foods and feeding assistance? What is causing this as she was eating prior to the recent medication? Is the condition temporary? I have not yet heard the decision…..

Also, just for your enjoyment, I nearly threw Alison on the floor. She was in her chair and asked to sit up. In moving the chair, Alison nearly slipped off onto the floor. She yelled HELP while I held her in the chair until we got her chair reclined with the help of a nurse. Oh my.

"No More Monkeys Jumping on the Bed"

Sunday night:

Alison was awake and alert. What a difference. I tried to explain that we have been concerned about her meds and that Reenie was looking into it. I said I wasn't sure what the doctor said. Alison said "No more monkeys jumping on the bed".  Haha. 

Although she was talking, funny, had just watched the Patriots game, wanted/did talk to Philip, she had lots of moments of nonsensical talk...mean team of nurses, needs to get in the hallway, help me get out of bed, where are you staying?,etc.

With more clarity though, she was able to tell me that she can't swallow and that she didn't want to do the swallow test because she wouldn't be able to do it. And that she wants to do PT so she can walk again. 

A good visit overall.

Fast forward to Monday. Mary Pat was going to visit. I couldn't wait to hear her reaction to seeing the new (old) Alison.  I was surprised and saddened to hear that Mary Pat said Alison was worse than the last time she saw her. In the almost 3 hours she was there, Alison could not wake up except to mumble "Help me!" periodically. 

Sleeping Beauty is AWAKE!

When I came in this am, Alison was wide awake, cognitive and had some (limited) physical movement! She had not taken ANY meds since yesterday am. So she was not sedated today. They did say that Alison did not sleep last night and was “calling out as normal”. This am’s calling out (before I got there) was not in confusion but more wanting attention.

Yesterday, Alison had failed a swallow test during a speech therapy evaluation given problems Alison was having with swallowing. So they had stopped all food and liquid, including meds. So the last time she had had Depakote or Zyprex was yesterday am. Today, I watched a second swallow evaluation by speech therapy. Alison was successful in eating apple and thickened apple juice (but not straight water). But, while she can swallow, some fluids do stay in her throat, causing her to have to clear her throat. Given this, tomorrow they are going to have her do a barium swallow test to confirm she is able to swallow. So no food or liquid by mouth until she passes that test. In the meantime they are giving her IV fluids. When she does get cleared, the speech therapist said to NOT use a straw as the liquids go to the back of the throat, increasing the chances of swallowing wrong. Plus we are asked if she is talking with a wet or gurgling voice to encourage Alison to clear her throat.

I gave the speech therapist Alison’s recent eating and medication history. Previous to three weeks ago, Alison was eating solid foods and fluids with no problems (and feeding herself). About three weeks ago, when they had started the anti psychotic meds, she faced increasing difficulties. Five days ago, I saw her choke on water – at the point when they had just increased her Depakote and Zyprexa medication levels.

Reenie/Jimmy – can you also formally raise the following with the doctor when you talk to him/her? With the nurse and Speech therapist there, I asked them both to set up a plan where Alison is not caught in a Catch 22. When they allow her to start eating, they will restart her medications, causing her to become too sedated to swallow.

Later in the visit, given a slight increase in blood pressure, Alison was restarted on her medications – crushed and mixed with apple sauce. They did not give her Depakote since can't be crushed. I asked them to skip the am dose of Zyprexa until tonight. Hopefully with the Zyprexa, she will sleep tonight. But tomorrow?

It was a delight to spend TWO HOURS with her where we could converse and talk about her state of affairs. We called and talked with Reenie and Alison also face-timed with Amy. Alison made jokes with and faces at Amy's kids. She asked to see Stella and talked to Stella for a while. She told me Phil had come to visit yesterday and looks forward to seeing him again (today?). Alison could move her right arm and toes and has a little movement in her left arm although hurts due to edema due to lack of movement. I (slowly) massaged all her extremities and (gently) stretched her joints. When she is awake, she is good at giving feedback when it is too much. Afterward, Alison had greater range of motion in her right arm and can begin to grasp ever so slightly with her left arm. And she can raise her feet off the bed. Alison asked to have put up again her signs as well as the pictures in her room. “Grow Strong”, “You are Loved” and something like Be Quiet and Relax. So everyone who visits please also massage and strech her limbs. Don't worry, Alison does not break.

Alison and I made for a video of her for everyone but it cannot be uploaded to the blog. I am sending it out via email to Amy and Reenie and will ask them to forward it on (or email me if you'd like a copy ariedy@cox.net).

Reenie will be out for a visit Dec 15-18 when she will hopefully win legal control over Alison’s situation. Looking forward to it!!

Mary Pat Visited Yesterday

She says she is "stunned" by Alison's decline since she last saw her a few weeks ago. Wonders if she has had another stroke and/or more seizures or if it is the medicine she is on. 

Reenie is scheduled to speak to the doctor today regarding Alison's medicine. 

I decided to NOT post video of Alison out of respect for her privacy. 

Just Fell Asleep

..right as I got here. :(

Will try to get back later today. 

15 Minutes of Alison

"Hi bobo, Merry Christmas". That is how Alison greeted me at today's visit! She was cognizant, with a sense of humor! She had just been moved to a chair and had taken her meds. She knows she has been out of it, maybe because of what Amy told her last visit. I told her she was getting used to the meds and will be able to do more each day. She is only able to move her right arm slightly (no left arm or legs). We used her breathing exercise devices once but only achieved only modest levels. She shared she had arm and leg bodies pains, perhaps from lack of movement? So I massaged and stretched her limbs.

We were able to talk about 15 minutes but then she drifted back toward sleep. At that point, Alison began to mutter and started crying out again for help. But now she is too medicated or weak to yell loudly.. “Mommy help.” “Can't do anything right.” “…back to normal.” “Be the same.” “Help me.” Can't come to your house?”

From the nurse I learned that Alison had slept all night but that she was very agitated yesterday. The doctor has been monitoring the levels of medication in her blood. Alison has not attained the desired level of Depakote or Zeprexa as she may be metabolizing the meds faster. Today they decided to increase the dosage of these two meds. When I first arrived, they had just given her the higher dosage of Depakote but not the Zeprexa yet. And then she fell asleep. I talked with the PA about the trade-off between the levels of medication vs Alison’s inability to be cognitive or move. How long do the meds take to be effective and lose their sleepiness affect? Is there a way to differentiate between day and night time levels?

Also as FYI, Alison still has congestion in her chest. They are having her use the breathing exercise devices every 4 hours but it is hard when she is so sleepy. A couple of times, when she was drinking water, she ended up choking on the water (does she forget to finish swallowing?).

Finally Awake!!!

I had Aaron go by the hospital today at 4. Alison was asleep. We went back at 8pm and found her awake! Finally!  It's been a week since I've had this much interaction with her. 

- I can't move my legs. At all. I can barely move.

- Throw my trash away. Stop f***ing with me.

- You have the list in case I go somewhere? Reenie, my brother in law, peter. Off the face of this earth..

- They are moving me soon. 

- Do I look like I've lost weight? How much? A lot?

- call Reenie. 

- Do you promise you'll come tomorrow?

These are just a few of the things she said to me.  Her speech is difficult to understand. And she got very frustrated when I couldn't get it. Her thoughts seemed pretty clear though. She is sad about her situation...really upset about her lack of movement. 

Aaron told her a joke. She didn't laugh but she got it. Her sense of humor is somewhat lacking but her sarcasm (with Aaron at least) was intact. 

She has a pained (contorted) look on her face and was yelling out a little but was calm for the most part. She cried when I told her Andy had visited. She didn't know because she had been sleeping. She said, "She looks out for me".

Another Miss (and Info)

First Alison has moved to room 304. They did this so she would not be constantly stimulated by people walking by her room.

Allison was deep asleep today. I did have a chance to talk to the head nurse, Stephanie. Stephanie said that the Zeprexa is beginning to be effective as Alison's mood is stabilizing. She only has fewer periods of calling out and only for an hour. Per the nurse, when Alison is awake, she is able to respond to communications. And she took her Meds as requested. On tues, the nurse said she even knew the name of her pt person. But we are not seeing long periods of detailed discussion nor physical movement like 3-4 weeks ago. I hate the trade offs.

Today Allison was awake most of the morning and they say she is sleeping at night. But before I arrived, she had fallen asleep after being given pain meds for her bottom (but not the optional haldol or Ativan). The C-Dif still has not cleared. It can take multiple weeks.

Yesterday they did an xray of Alison's lungs and found Atalectasis. This is where she is not using her lungs sufficiently and they are shrinking. They tried to start therapy today to reverse this but Alison was too asleep. I also learned that Alison has refused PT enough times that she is no longer receiving it (again). Without the feeding peg, Alison needs to eat. But she is not always awake to eat. I worry about her nutrition. The hospital does have Boost Plus in her room to help supplement her nutrition.

I asked if there was some better time in the day to come and visit, where the probability of Alison being awake would be better. They said that generally the mornings are better than the afternoons, but one never knows whether it's early morning or mid morning (if at all). I will try to better plan my visits around her pain medication.

As I left I said "Alison you know how much I love you." She responded in a mumble "I love you too".

Out Cold

I am still trying to figure out to post a video from yesterday to show how whacked out Alison is now. I don't know if I could find the words to adequately describe it. 

Today, however, I could not wake her up. Her nurse said that when she is awake, she is screaming. She is able to eat with assistance. He said, "We aren't doing anything for her.. Just waiting for her sister to get guardianship."  

Some Perspective From Reenie

Hi Andy,

I told Jim about your concern about Alison's apparent setback(s) over the past several weeks.  He said that Alison's behavior and condition are not unexpected.  They can all arise from her many infections, long time hospitalization, and her brain injury.  He said that every positive development is a miracle.

I also remember being told at Hopkins to expect ups and downs -- over the course of days, weeks, months . (even over hours, which we certainly have experienced, and started experiencing even in the early days)

Love,
Reenie

Sleeping Beauty

When I arrived, Alison had fallen asleep sitting up. Truly asleep. There was no incoherent mumbling or non sequiturs of words nor calls out for help. It turns out that she had only gotten 5 hours of sleep last evening (still wonderful). But the previous night she had slept all night! I thought about waking her to spend time with her. I tried once. Alison smiled but did not wake up. When I asked her if she wanted to say something, she mumbled “I love you.” I decided to let sleeping dogs lie. She needs good sleep. It turns out they had given her Ativan this am but I am not sure what else to help her sleep. But I found out she has prescribed Zyprexia (replaced the Seraquil), and as needed: pain meds, Ativan and Haldol. I hope they are getting the pain meds better calibrated. I still worry that she is too sedated given how far backwards she has regressed. Her cognition and communications are is very short and scrambled and she is not moving physically. We need to keep her from getting physically weak due to lack of movement. Other updates: The hospital is still treated her for c-dif but Alison has normal movements now. Alison pulled out her (unused) feed tube last night. Remember that they said it would be ok to come out in 2 months and was a simple (self performed) procedure. Alison is back on solid food but is having to be fed by the staff as she is not able to feed herself.

Mellow

(This is from Friday..)

Alison was screaming this morning and then slept pretty much all day. I couldn't get any information from the nurses about why this was..up all the night before and/or sedated.  She was slightly more alert at dinner than she has been my last few visits.  Although she only had one eye open.  We had several semi-coherent conversations. And by that i mean she was speaking intelligbly but her sense of reality is warped.  She is still confused about a lot of things but clear on others. She thought she was in Texas and could not understand how she could possibly be in Maryland.  She cried twice because she misses Philip. We called him and that made her feel better.  She has completely lost her sense of humor.  She was concerned that I was talking to the nurse. She told me not to tell them anything.  Like what? I asked. Politics she said.  I told her my lips are sealed.

She said she has not had any physical therapy in the past few days.  She can move her arms and legs but movement/energy are definitely limited.   She hardly ate any dinner but was really thirsty. 

Sedated Mumbling

When I arrived Amy was also visiting. It was great to see her too!

Alison stayed in a constant semi-sleep state with her eyes closed, calling out mumbled words the whole time. Allison had no sleep last night. She had been given a sedative given how active her calling out had been all night. It's as if she's trying to sleep but keeps waking herself every 5-10 seconds by talking out loud about things going on inside her head, perhaps jumbled dreams? Everything she says are one or two words followed by non-sequiturs of mumbling.  

It is on the wall.
I want…
...my arm
Scary words
Old woman
I can't move them
Focus
She doesn't have it
...needs to be
My god!
No power
Did you find...
(and the one I like best) I am in Boston

In between, she frequently calls out "please help".  Bit she is not aware enough to tell you what she needs.... Music does not calm her.  They are thinking of giving an additional sedative to help her sleep.


Sent from my iPhone

Some Notes from Reenie

On October 9, Alison tested positive for MRSA.  Her most recent test was not positive.  But because she has a history of a positive result, she is in "isolation" -- all visitors are required to wear gown and gloves.  Natalie said that this requirement should have been in place since Oct. 9 (but it sounds like it has not been).

Today Alison tested positive for C-diff (a bacterial infection causing severe diarrhea when antibiotics have wiped out natural flora).  So she will be treated for that.

It seems wise for visitors to be careful about bringing food to Alison--and to check with the nurse(s) about what food is permissible -- in case that is making Alison sick (or sicker).

Appeasement

Sunday I came with tomato bisque, blueberry yogurt, and clementines. She loved it!!

She was watching Star Trek when I got there. She was quiet but very frightened and worried that spaceships were coming. She also said the nurse had punched her in the chest. 

She was very fretful the whole visit. Telling me to make sure I put stuff in the oven, make sure the fridge was on, tell so and so this, do that. Instead of trying to set her straight and bring her back to reality, I just kept saying ok. I promised her that I would take care of everything and that she didn't need to worry, that she has no responsibilities and can just relax.  She trusted that I would do all these things and an outburst/further anxiety were averted.  This is an approach I have not taken before. I am usually very straight with her.  It didn't feel completely right but it did placate her, and that was nice..for both of us!!!

Also, half way into my visit, the nurse said that Alison is still active with MRSA (an antibiotic resistant staph infection) and that all visitors need to wear a gown and gloves..every time. I noticed (as I was leaving) a sign on her door that says all visitors of this patient must check in with the nurse before entering.  

Claudette (Harford Terrace neighbor) visited Alison Sunday night. She was amazed by what she saw...Alison's progress!!!  She said that Alison said she was overwhelmed by the outpouring of love and cried. I am glad that she is aware of and can feel that love. 

Recent Visits 11/2 and 10/31

Kim, my twin sister, was in town and we visited Alison twice. Per below and from my previous blog, the meds they are trying to address Alison’s anxiety when she is alone are causing cognitive and physical set backs. On some days, she is back to the level when she fist got moved to South River and is unable to move or talk. They need to get the meds right ASAP for Alsion to get back on track with her recovery.

Below, are two blogs starting with the most recent visit.

Saturday Nov 2

They have started Alison on a new medicine to try to control her anxiety as she is still crying out whenever she is alone, day and night. From her sister Renee, I hear that the psychiatry staff is visiting her every day to assess the impacts.

BUT, in addition to the new anti-anxiety med, the head nurse, Stephanie, said they are sedating Allison. Today we find her VERY confused and not able to move her arms and legs except sometimes her right arm. She keeps saying she wants to go home. She keeps her eyes shut and is also having a hard time swallowing. We were able to feed to her butternut squash soup we brought from home. Can we find out what they said sedated her with please? And for how long? We had to feed her lunch and stuck to apple sauce, soups and ice cream – things that were easy to swallow.

Thur Oct 31

When we first arrived, Alison was confused but much less so than two days ago when she first was put on Seraquil. It appears she is acclimatizing to the Seraquil. She knew Kim immediately and quickly settled down with us. That is not to say that the meds are not confusing her. Alison still asks for us to sit her up so she can “walk”.

She (and the nursing staff) said she had just had a visit from a lawyer who was presenting Alison papers to allow Renee to become her legal custodian.

As previously reported, Alison has been using her left arm less and less until now there is very little (no) movement. Kim, a physical massage therapist, worked with Alison very slowly to find out if Alison’s left shoulder was frozen from the fall two months ago. We helped Alison move onto her right side and placed a pillow along her front, between her legs and along her back for comfort. The Knim slowly moved her arm to loosen the shoulder joint. Alison kept reassuring Kim that it did not hurt but felt stretched. After 10 minutes of Kim’s work, Alison could against begin to move her left arm. I will need to teach Kim’s technique to Amy so that we can keep Alison ambidextrous.

And thanks to Mary Pat for visiting again. Mary Pat has been sick for 3 weeks but felt well enough for a visit.

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).

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!!!