Late post from last tuesday

 I went in the evening this time. Alison was very drowsy. Her diaper was tight and twisted and digging into her skin. I fixed that but she continued to be irritable. She cried a little...the usual routine. She says the staff wants to hit her. She lifted her right leg really high in the air. That was the most movement I have seen from her since her days at South River. She was pretty subdued and tired. I find that any visits over 45 minutes completely exhaust or bore her. She did say she enjoys when Andy feeds her. I think that is the highlight of her life. I did not notice much difference since they changed her med dosage. Her mind continues to be sharp as ever!

Notes from Amy

I saw Alison on Saturday. She was very stiff. I tried to massage her arms and hands but I was hurting her. She said boxes were filling her hands. We visualized me taking out all the tiny boxes and putting them on her bed. I was eventually able to get her fingers uncurled but her arm movement remained unlimited. She is still with it. She was very concerned that her roommate hadn't been fed lunch and kept alerting the nurse to that fact. Alison is such a sweetheart! 

I will be headed back this weekend. 

A Nice Visit

Today I visited Alison for my weekly visit. It was a good time for both of us. We did full body massage. Alison had a very successful feeding session of lobster bisque and carrot juice. We laughed and watch videos and called rRenie in California. She said she had seen Mary Pat and Mina.

I will be out of town next week so will miss posting an update.

Cleared for Pleasure Feedings

When I visited Alison today, she had still not been cleared for feeding even though Reenie signed forms July 4th. We got Rachel to finish the paperwork today. Only three people are cleared to feed Alison: Rolina, Mary Pat, and me. No one from the facility will be allowed to provide Alison pleasure food. Rosalina will be trained on Monday so she can start feeding Alison then. Rolena will compare the feeding instructions I sent out on my last blog with instructions that Rachel has since left in the room in the bottom drawer of Alison's nightstand. Rachel will then also check the consistency of the strained lobster bisque I left, to make sure it is honey consistency.

As an update on visitors, Amy visited on the weekend. Merry Pat visited Tuesday. Christina's mom came to read to Alison today, Friday. And this week I went today, Friday. Next, week I will again go on Thursday. I will then be away a week.

Saturday

Anton and I visited Saturday afternoon. Rolina had already left. Alison was awake and listening to her TV. She can't see her TV but there doesn't seem like there is a better place to put it. She started the visit with a good cry.  She said she can't move and that she will never walk again. She said she isn't getting any physical therapy. I asked her if she was motivated to move on her own. She said no. She was able to move both arms and legs. One leg just a little. 

Alison said she had a great visit with Christina and the kids. She said she absolutely loves that Mina reads to her. Philip and William had visited some time recently. She is so loved!!

We gossiped and chit chatted a bit but she was very tired and ready to sleep. 

I asked her what she needs for her room. She said a clock. I will bring one next time I go, the weekend of July 18. 

Christina's Visit

I went with my mom and both kids who Alison was clearly glad to see, and I was so pleasantly surprised by how good she seemed!! Maybe it helped that I knew what to expect this time going to the facility as well, but she is in the different room (as I'm sure you know) and it seemed a bit better. She was sitting in her chair when we arrived and was SO happy and surprised. Even though she couldn't talk much, it was much clearer than when I was there in January. She was coherent and told me that she understands everything we are saying but just can't talk much. She even made a little Alison joke at one point that made me laugh. Rolina (?) was just leaving as we were coming and seemed sweet. 

About ten minutes in Alison said that she needed a new diaper and about twenty in she was getting tired and wanted to be put into her bed. I told nurses but they were delivering lunch so I'm not sure when all of that happened. I massaged her legs for a while and chatted about different things. Really, it was such a relief to see her like this and to hear her talking clearly. A relief and sad all at once since I'm sure that just makes it all the more frustrating to her to just be locked in her head. She said that it's very frustrating that she can't walk and that she hopes when she visits in my dreams that she can (which she always can.) Overall it was a great visit. I plan on going back at least either Monday or Tuesday, but will do both if possible. 

My mom also has been visiting once a week and reading Marley and Me to her which she seems to love (she mentioned it today). She lets my mom know that although she's going to close her eyes she is listening and paying attention, and will smile and laugh sometimes at things she reads. It seems to be a great weekly thing for her to get to enjoy. Has anyone ever tried reading other things with her, or maybe even get her books on CD? 

Rules for Feeding Alison

Rachael Gordon, the speach therapist, is moving forward with the paperwork to approve Alison again for pleasure feedings. =>> Reenie will tell us when this gets approved. Before that, we cannot feed her.

There is some risk as Alison is inconsistent with how well she swallows every day. Therefore, Rachael has asked that we follow the following rules:
• Only persons trained by Rachael are allowed to feed her (so far me, Mary Pat and Rolina next Monday).
• Only 4 ounces maximum per feeding session.
• Have the head of Alison’s bed raised up as far as it goes.
• Feed half spoonfuls only, and make sure Alison swallows twice after each spoonful.
• Clear any amount of extra liquid that gathers inside her lower lip with a napkin.
• Alison needs to remain sitting up in the bed or chair for 20 minutes after feeding.

Here is info on when it is OK to continue feeding her and when we have to STOP the feeding.
• If she coughs and it is productive, continue with feeding.
• If she says she has trouble breathing, stop feeding.
• Maybe restart if she clears her breathing but do not continue if she still has trouble breathing.
• Nonproductive coughing, nonproductive throat clearing, and a wet voice are all bad. Stop feeding.
• If there is any tearing from her eyes, stop.

Alison can only consume thick pureed items, of honey consistency.
• We need to strain the lobster bisque so there are no bits in it.
• Coffee yogurt is great.
• Carrot juice will need to be thickened with the powder (nursing desk is getting a can for our use).

I have left yogurt and carrot juice at the nursing station if Alison gets ok’s before next Thursday. I will bring strained lobster bisque in a week.

Swallow Evaluation Efforts

I had another fun Thursday visit with Allison. We talked, laughed, did massage, and Alison moved her limbs. I talked to Mary Pat who had visited again on Tuesday.

Alison this week reported that she had AGAIN been fed, FOURtimes since my last visit a week ago. It looks like it has been Marshall? of the evening shift. IT ALSO INCLUDED WATER AND TEA (not thickened). Alison said she was ok with the food but not the drink. Neither the floor nurse nor the day time staff had done anything since I told them aweek ago to investigate why Alison had been fed the previous week despite being listed as NPO.

I immediately got Yolande, the unit manager, to come down and talk with us. She is going to investigate who is feeding Alison AND stop the food delivery. As well, I contacted Rachel (OT) and repeated my request from the previous week for her to do another swallow evaluation. After I had left, Rachel called me to share that she had done a preliminary swallow test and said that Alison appears to again be able to handle nectar-thick foods. Rachel will repeat the evaluation next week though before she allows Alison to start eating again. I will pass on whatever are the results of the speech evaluation once/if I get notified.

In parallel, Reenie had also called to the administrator of BridgePark (Mike Moranz) Wednesday and heard back from him today. Reenie is pushing for therapy (physical*, occupational, speech). He said Speech Therapy will evaluate Alison this weekend, and Occupational Therapy and Physical Therapy will evaluate her next week. Mike will let Reenie know the findings of their evaluations and their recommended game plan(s), in order to figure out how to move forward. If Reenie gets called, please also pass it on to the rest of us.

I'll keep you posted on what I learn. Hopefully, it will be to have food taken into Alison eg lobster bisque, carrot juice (which needs to be thickened), chiobani yogurt (she really likes “Chobani Bite” Coffee with Dark Chocolate Chips), and puddings. No more spreadable cheese please as Alsion found it harder to swallow. Someone will also need to update Rolina.... AND who ever is doing the feedings will need to watch for the return of Alison's "fainting/seizures" to keep her from choking.

I am out of town next week so will be unable to visit until July 3 (so no blog post?). Amy said she would try to go this and next Sunday.

* Note: I seem to remember that PT needs to be "goal-based, with progress" for it to be covered by Medicaid. Just getting stronger does not count. Last time they stopped PT, Lakshmi of the rehab center at BridgePort told me that it was because they had determined that Alision was not strong enough to progress on moving herself from a bed to a chair. But they would look at this again ion the future.

Pleasure Feeding vs NPO?

Alison reported to Mary Pat on Tuesday and me today that Alison was fed soft foods three times about five days ago (by Marcia?) and that Rolina is also feeding her. Alison remembers eating beans, mashed potatoes and gravy, pudding, and juice. Alison said she did not choke. I checked with the floor nurse, Pam the floor staff, and Rachel of speech therapy. They confirm that Alison is still NPO. No one could comfirm whether Alison had been fed but Pam will check with "Marcia". Alison would really like to eat (lobster bisque and carrot juice, not the spreadable cheese as it is harder to swallow). I have asked Reenie to contact the facility to check if it's time to do another swallow evaluation. Reenie, can you also contact Rolina to make sure Rolina is not feeding Alison until this is done (if she is….).

Alison and I stretched out her limbs and she worked on her moving her limbs. We tried to control individual musles (like lower arm and leg vs upper arm and leg). Real progress but not much strength. Per Alison, Rosalina is not having her do any exercises. Reenie, did you send a list of movements for Rolena to do with Alison? Is Rolina willing to remind Alsion to do them? Alison says she forgets on her own.

Alison says she is not sleeping at night and it is driving her crazy. Can we check whether the facility would give Alison something to help her sleep each night?

Rolina has taught Alison “mind over body control”. While I was there, Alison said, “Itch itch go away. Jesus commands it.” And then Alison relaxed and was not driven crazy by the urge or the discomfort.

Mary Pat brought a fan as there is fighting between roommates over control of the AC/heating unit. I did not tell Alison anything about facility efforts.

Another Thursday Update

Both this week's and last week's visits have been "same old same old". We talk, we cry, we exercise, we massage, we laugh. Mary Pat visited on Tuesday and told me that Alison is just as funny and engaged but after about an hour gets tired and cries and wants to sleep.

Alison knows that she not longer gets many visitors coming to see her other than Mary Pat, Amy, and me. She said that her roommate never gets visitors and that the roommate's "family has written her off".

I just wish things would improve for her.

Reenie Visit May 20-22

I had a lovely visit with Alison over Memorial Day weekend. Describing my recent trip to Europe in April, we reminisced about places we had both been to. When I mentioned that I visited Edinburgh, she broke into a perfect (and hilarious) Scottish brogue. And she was her usual frank self—commenting that Danny’s turning-white hair and moustache made him look old in photos. When he asked whether he should color his hair, Alison smirked and said yes, “Grecian Formula”.

She spent time outside in the front of the building—the weather was gorgeous. We worked on having her stay in her chair as long as possible.

We also worked on her “exercises”. She and I set a plan where she lifts her right leg 10 times, then her left leg 10 times, then her right arm, her left arm, flexes her right foot, her left foot, her right hand, her left hand, and lifts her head up off the pillow and turns to the right and left. 10 repetitions each.

The challenge will be to get her to do them on her own without prompting. I suggested that whenever she feels sad or hopeless or frustrated, doing the exercises will help her feel better, that she is actually doing something and getting stronger.

It would be helpful if someone could make some kind of sign that Alison could look at to remind her of the list of exercises.

Alison is moving noticeably better than the last time I visited. She was moving both legs and arms. She can even use her legs to lift her behind off the bed and shift around a little—something she couldn’t do previously. So she is definitely stronger.

At the moment Alison is not allowed to eat or drink anything by mouth (NPO). The speech therapist who evaluated her a few weeks ago thought Alison was not swallowing well enough. Hopefully Alison will get stronger so she can start eating again. She wants to. I asked that she be evaluated again ASAP to see if she is ready.

Administrative stuff…Alison’s application for long-term assistance (Medicaid, basically) was FINALLY approved. So she is no longer in financial limbo. The state will now pay for her care.

It doesn’t pay for physical therapy for rehabilitation, however, so I’m investigating whether I can hire someone to come in to help with that.

While I was in Baltimore, I visited a lovely facility called Encore at Turf Valley in Ellicott City, Maryland (not far from Baltimore) that has a bed available. BridgePark sent over Alison’s records and Encore is reviewing them. I will talk to the Admissions Director on Monday (she has been out of town since Alison’s records were sent). The initial report I got from the person filling in for the Director was that Alison might be rejected due to her history of yelling/screaming. But I’m hoping that won’t be the case, or at least that I can gather additional information that might help persuade them to admit her. Alison was pretty calm most of the time I was with her.

Rolina still helps out with Alison four days per week (Mon, Wed, Fri, Sat) but note that her hours have changed to 10-2.

More soon…
Reenie

Notes from Neurologist Visit 5/27/14

Mary Pat just gave me the following information from the doctor’s visit she attended for Alison with the neurologist, Dr. Chandana Chauban 410-225-8250:

• The medical records provided at the appointment work incomplete.
• Mary Pat filled in as much as she could.
• Alison's medicine levels were okay.
• The brain scan looked okay [From when? Is this a current view? Or just one after the July events?]
• Alison can do more physically for herself.
• She needs to be pushed to rebuild her muscles and she has the ability to control them.
• Alison should sit (more) in a Jerry chair
• There is no apparent cause for the seizures.
• The doctor needs more of the medical history and x-rays from the aneurysm.
• No tests were prescribed. The doctor did not order physical therapy.
• The doctor suggested that next time Alison go to the university of Maryland Hospital.

Reenie - I do not think the seizures were focused on enough as this was the MAIN POINT of the visit. Can you contact the Doctor? See if more testing and brain scans should be done?

Thursday May 22

Alison and I had another philosophical conversation this week. Alison shared how she wanted to get out of there or that she wanted to die. But then she said she does not want to die. We then talked about what it would take for her to get out of there. I said it meant her being able to sit and use a wheelchair. I then asked her what that would take and she said the word “work”. She then said that she didn't want to work and she didn't like to sit in a wheelchair. I reminded her that work was the way that she would get better. And so the cycle continues.

She is accumulating fluid in her throat and is unable to cough it up. Alison had one little seizure when I was there. The staff doesn't respond when I asked them to come to: see the seizure, get her changed, or help her get fluid out of her throat.

Mary Pat visited on Tuesday, and will go on Alison's neurology appointment on May 27. Alison says no one else has been by. I reminded Alison that Reenie arrives late tomorrow night for Memorial Day weekend and to ask Reenie to call me so I can arrange a time to come up and visit with Reenie and Alison.

Weekly Thursday Notes

Alison is very sad and says she wants to die. She asks for everything to be done for her even when she can do it herself. I have her do what she can and remind her she cannot act hopeless. I massaged all of Alison limbs and stretched them. And then we worked on her moving them herself, though with limited range of motion. I reminded her that she cannot act helpless. She needs to take control of the movement that she can do. She needs to take responsibility for her own recovery and love herself as much as we do her. Please can we talk with Caring Companions and ask them to have Rolina to massage and stretch Alison’s limbs? Alison wants to leave the facility. She is claiming that one staff, Pam, hits her in the head. I said I though it is might just a jovial app. Allison says no it is not. By the way, when I said that she was “smart as a tack”, Alison corrected me and said, “Sharp as a tack, smart as a whip”. She is with it!

Anita has come back for another visit. She brought socks. Merry pat came Tuesday. Merry pat will try and go to the neurology appointment on May 27 (9am @ MD General Hospital Dr Chambers). The facility will also send staff with Alison's medical history. As FYI, Mary Pat is leaving Baltimore to move to Massachusetts in August. Alison asked if Phil would come for a visit; please pass it on.

The facility is in the middle of an internal audit. Per regulations, they are going to reconfigure all beds so that they come outwards from the wall, allowing access to the patients from both sides. There also redoing all of the medicine dispensary cabinets and throwing out dated materials. I don't think it will change level of staffing care.

Saturday with Amy

I visited yesterday shortly after Joan and Ted. Alison was still in the day room. She wanted me to help her get back in bed. She was complaining that her neck hurt. She was very tense and would not relax back into her pillow. She was holding her head up. She was mad that I would not help her. She told me she hated me a little and that she wanted to die. She kept yelling for Rolina to help her. I told her she wasn't getting out of the chair so if she wanted something from Rolina, she needed to be more specific and not ask about going back to bed. She did her best. I kept my visit short. Alison seemed like she was in no mood for visitors..tired and irritable. Any attempt on my part to start a conversation never went anywhere. She was too distracted by her hatred of the chair.  

Rolina is sweet and it seems like Alison is in good hands with her. 

I think dog visits will be a nice change for Alison. 

A"little" Better But a Seizure

Sorry to have been offline for 2 weeks but was sick last Thursday. This visit Allison was a little more with me during the visit. She even said one joke. She tried moving all of her limbs. It turns out that if you put a hand under her foot she can kick both legs individually. Can we please make sure that Rolina works with Alison each time – massaging her limbs, having Alison try to move them, and having Alison push against Rolina’s hand when placed on the bottom of Alison’s feet?

Rachel, the speech therapist, came today. We tried lobster bisque and cheese. Alison had difficulty with both. So Alison is back to NPO. Rachel checked with nursing on whether Alison has had changes in medicine and was told that there was no change. I do not know how far back they checked. It may have been five weeks ago when we started to see the decline. (See blog of April 10).

Anita Carstens was here for a visit. She just found out where Alison was from Joyce. Anita works two blocks away and is heads up a school that teaches about services for people with disabilities (?). She had some insights on Alison seizures. She talked about petit mal and psycho motor seizures. To Anita, it sounds like psycho motor events. With psychomotor seizures you don't have all the shaking and the tongue biting and the erratic behaviors. You just get a blank stare and it's almost like a loss of consciousness. When the person comes out of the seizure they are not aware that the ever have to seizure. There is neurological testing for it.

Of course, after Anita left, Alison had a seizure. When she woke, Alison said she had a bad headache.
There is a water leak in the ceiling above Alison's bed and the tile has become discolored. Allison is scared it's going to fall on her. She found it difficult to explain but we finally figured it out. I am going to talk to nursing to have them move the discolored tile to different location in the ceiling. Hope this gives Alison peace of mind.

Questions

I visited Alison today after missing last week. She was less sleepy, but still very flat expressively. Everything was as normal as is normal for Alison. She asked to get in the Geriatric chair and then immediately asked get back in bed. She called out for help. She asked to be scratched and massaged. She still only minimal controlled movement in her arms and legs. Per a text exchange with Rolina, Alison is still losing consciousness for short durations. Per the facility staff, Alison’s erosions on her bottom are getting better. I trimmed Alison’s nails.

There was an ombudsman there today from BHCD Office of Aging and Care Services to follow up on complaints that “Alison had made”. Her name is Barbara Mannery but she was following up on a previous visit from Elissa James, LTC Ombudsman who has Alison’s open case (410-396-3144). Barbara said she was going to contact Jimmy next.

I brought Alison new bisque, carrot juice and cheddar cheese spread. But then I found out that they had stopped giving Alison pleasure food. They said it was because two weeks ago I shared with them that I was concerned about Alison not swallowing her food given how sleepy she was. I have asked Rachael from speech therapy to do another evaluation. ST knows about not swallowing as well as Alison’s lapses in consciousness.

Can we have family follow up on the following questions?
• Have they changed Alison’s medicines making her too drowsy (per blog two weeks ago)?
• How did the ombudsman get contacted? What was the complaint and by whom?
• Alison also said that Rolina had not been coming every day. Can we check if that is the case?
• I asked about whether Alison's neurology appointment for May 27 had been moved up. I did not get a response other than it was sometime this month.
• Can we make sure that the Speech Therapy evaluation happens?
• Does family get reports from Caring Companion? Can we ask for notes from each visit?
• When does Reenie get back?

Sunday

I went in themorning this time. Alison was moaning/yelling. She said she was nauseous but couldn't throw up. I guess it eventually passed because she asked for some carrot juice and smoothie that I brought. I did not thicken this..should I?? She seemed to have a hard time swallowing (lots of dribbling).  She was very phlegmatic and I tried to clean out her mouth with a toothbrush. She was scaring me with the coughing so I got the nurse. Nurse said Alison was fine. 

Alison did have an episode while I was there. Her eyes were half mast and staring beyond. She was groaning..low and rhythmically. It lasted about 15 seconds. When she snapped out of it she asked, "where did I just go?"  I asked her to describe it but she couldn't. She said she had a seizure and then that her head hurt. 

She did not want any more drink or any food. Her mood was flat the entire time. Her TV was on but I'm not sure she can see it. She did ask if I brought my iPad because she wanted to watch a show. 

Her sore on her bottom/lower spine was bothering her (itchy).  A sign of healing..right??? She was not comforted by that. 

She was dry and clean this time.

She said she doesn't like because "she is viscious, she makes me feed myself ". Oh Alison:/

Meds or Sleepy?

Have they increased Alison’s meds again? Or is it just sleepy. I worry the former given her weak swallowing and garbled communications:

Dawn and Mark went to see Alison on Sunday at noon but I do not know what happened during the visit.

When Amy went to see Alison late afternoon, she was drowsy and did not eat.

On Monday I got a text from Rolina of Caring Companions in response to a text asking for an update – “same, not as many of those episodes – just three.”

Mary Pat went on Friday and reported to me by phone that Alison ate only a bit and choked on it. She fell asleep a lot.

I got a text re Alison’s condition on Wednesday from Rolina, again in response to a text to her: “she was really drowsy and kept falling asleep when I tried exceeding (?a Siri word) with her. She said she wanted a sleeping pill because she can’t sleep at night.”

I went today and here is what I saw:
• Return of mumbling and garbled speech
• Kept eyes shut and dropped into sleep quickly
• Unable to swallow when asked to swallow.
• Ate only 4-5 spoonfuls of carrot juice and lobster bisque before I had to stop because of fear of choking
• Unable to cough to clear throat as if has forgotten how to do it.

The good news: except for Monday, no one has reported more seizure like behavior.

Update on "Seizures"

As a quick summary, Alison had some sort of loss of consciousness on Monday 10 or so days ago, then one on Thur, several Fri and Sat and then none reported since then. We do not think these are true grand mal seizures as Alison does not shake, go rigid, froth, or sleep afterwards. She just stops being present and does not respond to touch, voice or shaking for a short period of time. A couple of times she had been talking and continued during the loss with a nonsense mumbling. After a little bit of internet research (you can belive everything you read on the internet...), I wonder if these are more like syncopy but we need a doctor to diagnose them. For me, all the events I have observed have been when she is sitting up and being fed.

Today while I was visiting, Alison complained three times of a frontal headache followed each time by 15 to 20 seconds of not being present. I think she stopped breathing at first… Then she breathed deep and looked to be asleep for 5 secs. During this she was unresponsive. When she starting coming aware again, she said she could not see. And then 5 seconds later she was fine and could see and talk. Again no violent movements. Allison does not recognize that she has had them. I tried to get the nurse each time but the nurse never was there in time to observe them. The nurse did contact the Dr who asked her to move up the neurology appointment now scheduled for May 27. Moving up the appointment was supposedly being worked on a week ago when I was last there (FRSUTRATION!!). If you are visiting and Alison complains of a headache, IMMEDIATELY get the nurse. If the nurse can observe the “seizure”, the nurse can then send Alison immediately to ER.

Other odds and ends, the facility staff are working to heal some bottom sores that, per the staff who created them, are getting better. I will text Rolina to ask her to check on them plus give Alison another shower since Alison does not remember having one.

Mary Pat went to see Alison on last Tuesday and said it was a quiet visit. Amy is going Sunday.

Challenges

Rolina, the CNA Reenie hired to visit Alison 4 times a week, has been feeding Alison the special foods we leave as well as showering her and massaging her. It makes us feel better for Alison plus gives us important info on Alison’s situation, per below:

First, Alison has had two grand mal seizures. One was for three minutes 4 days ago when Rolina was there, and one was for one minute today when I was visiting. After the first occurrence, the facility had their in house doctor see Alison. I talk to the doctor today when I first arrived and he said that Alison’s seizure meds were at the proper level in her blood stream. They have made an appointment to send her to a neurologist. Her neurological appointment is now set for May 27 but they are going to try and move it up.

Just as I was about to leave at the end of my visit today, Alison suddenly complained of a headache. She then recollected that she had a headache when she had her seizure 4 days ago. As I left the facility, I reported this to nursing staff, as input to the neurologic doctor visit. After talking with the nurse, Alison was calling out so I popped back in. She asked me to remove the pillow from under her legs (there was none), said her foot hurt, and then started mumbling… it was a second grand mal seizure. It started about 4 minutes after she first said she had a headache? I got the nurse who observed it. We talked to Alison as she regained consciousness one minute later and kept her calm. The facility is going to try and move up the neurological appointment. When I updated Marissa of Caring Companion about the grand mal seizure, she was going contact Jimmy to see if Jimmy wants Alison to be taken to an ER for observation now or just wait until the neurological appointment. Jimmy was going to call the facility.

Second, we need to figure out how to work together to get issues raised and resolved that affect Alison’s care. Who takes the lead in coalescing issues? Who takes the lead in working them out with the facility? Rolina, Amy and I can just report what we see….

Over the last week or two, we have been identifying concerns about Alison’s care at the facility. I have raised some in my blogs. Rolina has also been texting me concerns from her visits which I have shared with Reenie. Amy too has texted and blogged some concerns. The issues are 1) Alison not being regularly changed or taken care of in the am, 2) staff unwilling or unable to assist CNA in moving Alison to the shower 3) roommate issues re overheating the room and threatening Alison, and 4) questions of whether Alison gets regular feeding by anyone other than the CNA or visitors.

Given continued lack of feedback that the facility had done anything on the issues, I went into my visit today ready to “shoot bear” (in a collaborative sort of way...). I talked to Yolanda (heads the unit) and Karen (Alison’s social worker) to raise the four issues. Yolanda and Karen did NOT know any of these issues and met with the floor nurse who said she also did NOT know. Yolanda then asked that Rolina contact Yolanda if Rolina had any issues during her visits. I then contacted Marissa of Caring Companions to update Marissa on the issues and instruct Rolina to contact Yolanda. Marissa did NOT know about any of the issues either! Rolina prepares daily reports but they are turned in every two weeks. Rolina had not raised them directly with Marissa.

Actions:
• Marissa is going to talk with Rolina so issues are identified real time. Marissa will raise them with family.
• Amy and I will continue to blog on issues from our visits.
• As I just was leaving, Monica the floor nurse told me they were talking about changing Alison's roommate situation. I ask what that meant. What they normally do when someone is acting aggressively toward a roommate is to move the aggressive person out of the room. Let’s see.

Note: Reenie left today and returns April 30. She asks to not text or call her unless an emergency given the high intl telecom costs. She will see blogs and email. Jimmy Webb is family point of contact in the meantime, jamespwebb@earthlink.net, cell (818) 414-1646.

Sunday

By Amy

I got there at 4:30. Alison was asleep in the dark. The stench of urine in her room was unbearable and stung my nose. I woke her up and said "have they changed you today?"  Immediately, a woman named Pam ran into the room, asking me who I was and talking really fast. She was fretfully telling me how Alison had been up all night and since she had been sleeping all day , they didn't want to disturb her by changing her because she gets agitated.  Pam was really nice but something did not seem right. She went on and on about the wonderful care Alison is getting, without even knowing who I am.  This outpouring of information was odd and seemed more like whitewashing what appears to be inadequate care.   Anyway, she assured me that Alison would be cleaned up from head to toe as soon as they could get to her.  Pam hugged me.  I was there for two hours as Alison lay in a urine soaked diaper and sheets and begged to be changed. I asked for her to be changed 2 more times. Finally when I asked again at 6:30, one of the ladies said she would do it herself.  They are clearly understaffed and uninspired to give basic care to Alison.  

Pam said that Alison is calling her roommate and staff offensive names and that Pam is constantly mediating.  Alison said her roommate tried to stab her in the leg with scissors. When I asked what happened, she said she missed and stopped. Given Alison's presence of (clear) mind and her relationship with her roommate, I don't doubt this actually happened. 

Alison has been yelling out. Alison was crying when I was encouraging her to feed herself. Her roommate yelled at her to shut up. 

We had a busy visit. Alison ate some soup and chocolate mousse. I mixed some greens + (thanks Joanie) with a blueberry smoothie. She loved that and the carrot juice I brought. She would have eaten more but was reluctant to feed herself. She was getting very upset, crying and saying "forget it". I tried to explain that feeding herself is the first baby step to getting better. She was not encouraged but did end up feeding herself. 

We Facetimed Christina and the baby. We called Philip. We watched about 15 minutes of Downton Abbey. I washed her hair. What could have been a great visit was eclipsed by Alison's discomfort/uncleanliness. Next time I go I will call ahead and see if they can change her diaper before I get there.  (That is pathetic.)

I will be unable to go this coming weekend. And Mary Pat has injured her leg and can't drive. Philip mentioned he might go Monday. 

New Coordination?

Today was my second time visiting Alison while Rolina, the CNA was there. When I came in, Ro was with Alison who was already in the Geri chair. Ro was massaging Alison’s neck . After together giving Alison a shower, we went into the day room. Alison was very tired and had a “flat affect”. Ro said she had been the same on Friday. I checked with nursing who reviewed meds – A is still getting Clonopin (?sp) 6am, 2pm and 10pm. Nursing feels it is because A has not slept much the last two nights. More about that below. So while Alison slept, Ro and I talked.

I asked Ro about how we would better coordinate care management for Alison going forward. So far we have been catch as catch can between me, Amy and Reenie. Ro says she writes daily care notes about Alison to her Supervisor. Ro said that as a normal course, Ro will raise issues. Her supervisor then will then get in touch with BridgePark to see if staff can correct an issue. WOW, how great!! We decided to try this process with two issues:

• Ro worries that the facility is taking advantage of her being hired for 4 days a week. Staff may skip taking care of A in the am because Ro will be there later. I asked Ro to track the following in her daily care notes: 1) Ask Alison if anyone had fed her breakfast 2) track whether Alison has already been changed and gotten up in the morning. We will see what Ro finds.

• Alison and her roommate have been fighting for the last two days because her roommate has been leaving the heat up. This is why Alison has not slept at night. Alison has started using bad words and nursing separated them this am. When I shared the issue for the second time with the facility staff, they said they had asked her roommate to turn the heat off it still continues. Alison says this is the only problem she has with the roommate (so it may not be time to ask for a roommate change). Instead Ro will work with her supervisor on ideas to request from the facility -- ask staff to go in there at night and turn off the heat after they're both asleep. Also leave the door open.

I had taken and washed Alison's dirty clothes as no one had touched her laundry since Alison’s return to the facility. Alison is missing some clothes but Ro thinks the staff has put them into the laundry system. Maybe we can have Ro work with the facility to coordinate getting laundry done and track clothing?

Yesterday, Ro had texted me toiletries and food supplies Alison needed so I took them to my visit today. I just restocked yogurt and lobster bisque. Alison asked for over the Odwalla carrot juice which Amy said she’d bring tomorrow.

I also was told today that Alison’s peg feeding is done every night from 6 PM to 8 AM. This is different info from my visit 5 days ago when they told me that were doing a peg feeding at 2pm. Is weekday different than weekend? Another open issue still to track down?

Going forward, I have to cut back to going once every 7 days. I have decided to go on Thursdays as much as I can. That way Ro does M/W/F/Sa and Amy does Sundays. Maybe we can get Mary Pat to do Tuesdays?

Reenie – some questions for you:
• Did you expect the group that Ro works for to take the lead in coordinating Alison’s care with the facility? This would be huge if we have someone local to coordinate with and oversee this!
• If yes, can I raise issues with them, for them to manage (eg the laundry, peg feeding schedule)?
• Can we ask them to share with us Ro daily care notes? When they raise an issue with the facility? It would be great to know what they are seeing and working on!

Dogs

Thanks Andy for that post. Sounds encouraging!

I am not sure about taking dogs to BridgePark. I doubt it would be a problem but hopefully it's allowed. I think it would be good for Alison. She did not want me to bring my dogs to see her. I think there is still a lot of sadness about Stella. I am sure, however, that seeing a dog would definitely brighten her day. 

She told me she dreamt she got an English Bulldog. She was already trained and she named her Guppy. :)

Forward, ho!

Ok, you all now know that I am an optimist. But today as I leave BridgePark, I am again hopeful that progress can be made.

Today, I met with the Certified Nursing Assistant, Rolina “Ro” Fleurina, who will be helping Alison M/W/F/Sa from 1-5pm.
• Ro is mid 20’s, is very pleasant, and speaks very good English
• Ro does what Alsion asks plus has her hands on Alison, frequently massaging limbs or holding hands.
• Ro is very attentive to Alison's needs but also sets limits.
• I told Alsion HOW lucky she was to have Ro and how much I liked Ro.
I gave Ro Alison’s family info and then the July forward (and previous) medical, cognitive, and physical history. We shared the ups and downs of the last year so she could get a sense for the “water marks”. I also shared Alison’s personality, use of drugs, and tendency to avoid hard work. All is understood.

Ro started last week and, after two visits, Alison is beginning to move all her limbs. Only a bit but it is a start! I do not think I have since any controlled movement of three of the limbs since December. We tested Alison's physical control. She is now able to slowly raise her right hand, slowly blow her nose, slowly wipe her mouth, and hold a spoon on her own. She can now raise her left arm a foot off the bed as well as her right and left legs. She is strong enough to push her legs downward against hands held against the bottoms of her feet (the first step in learning how to pivot off a bed into a chair). I have also asked Laxshmi from PT come up on Wednesday or Friday to train Rolina on range of motion massage and movement so we can loosen her joints and muscles. With more progress, we can ask PT to re-evaluate when to restart physical, occupational and speech therapy.

We also went over how to feed Alison (sitting up, 1/2 spoonfuls, double reminders to swallow, honey consistency, NO unthickened water, NO straw). I showed her how to get ginger ale/condiments/butter from the facility’s basement kitchen, the bisque/cheese spreads/yogurts from the nurses’ frig, thickener/ice from the nurses desk, and S&P/cups/spoons from the drawer. We talked about Alison’s pleasure foods. The nursing staff reminded us to when possible have Alison serve herself using a spoon. Alison then fed herself both mashed potatoes and spreadable cheese – slowly and with difficulty and some tears, but she did it!! Ro did a great job assisting Alison with parts of the process, without doing it for her. But Ro is going to feed her soup and thickened drinks for the time being...

In front of Alison, I asked Ro to get Alison in the Geri chair each day for 3-4 hours during each visit. This of course made Alison cry. She petulantly then told me she did not love me and to go away. When asked why, Alison said she was scared she would be in pain or be left in the chair. We then talked to Alison:
• The chair is NOT punishment but pleasure, as a way to get out of her room!!
• Alison needs to spend time in the chair to get stronger
• While we are there to help Alison, Alison needs to take more responsibility to get herself strong
• Ro reminded Alison that, during the last time in the chair, Alison had never gotten into pain because Ro had listen to Alison’s needs and kept adjusting her position in the chair.
Ro and I discussed putting a pillow under Alsion's butt on the chair seat as well as asking for a Tylenol before starting a session in the chair.

Alison just got a piece of mail from Joann and Ted! It's another card about dogs.

REENIE - It may be time to directly call Yolanda who runs nursing. I am still concerned with the BridgePark's consistency of care and communications.
• The staff has been putting Alison in a normal wheelchair (as seen by Ro on Fri and Sat) counter to instructions from PT that she be put in a Geri chair. I told Nursing and then asked PT to have Laxshmi follow up with nursing to get this corrected. This is the second time as I had to do this last visit as well.
• Does the facility have enough Geri chairs? When we asked today for a Geri chair for Alison, they said that all the shared Geri chairs were “being cleaned on the first floor”. BUT PT told me each floor had their own chairs and knew for example that the two Geri chairs on the second floor were broken. And that the chairs were seldom/never cleaned….
• I think that there is still a problem with 4th floor staff not feeding Alison regularly. As I do not yet trust the regularity of any of the stomach peg or pleasure feeding, can we get nursing to tell us the program.
- When I arrived, Alison’s lunch had not been delivered although everyone else was already eating and they were picking up trays. I had to ask to get Alison’s tray delivered off the rolling container on the floor.
- While I was talking to the 4th floor staff, they and I learned that Speech Therapy has stopped. The staff on the 4th floor was surprised that Speech as part of their mid-day treatment was not longer feeding Alison her pleasure lunch.
- Separately, staff had planned to give Alison a peg feeding at 2pm but postponed it since Ro and I were there.
• I have not yet gotten a clear idea if Alison is still crying out at night. I do find out that they give her an evening dose of anti-anxiety meds. Alison’s roommate said it had been quiet at night (but she was sleeping) but Alison said she was still crying out. I asked Alison why she cries out and she said it was either because of pain or that the room was too hot. I have asked the nursing staff to share instructions with night staff to always offer Alison the option of pain meds at 9 o'clock when they give her evening meds. As well they'll see if they can get her roommate to not turn the heat on high. Can we share this with Yolanda too?

Sunday

Alison was asleep in the dark when I arrived at 6:30. Her "food" was sitting on a tray next to her untouched.  I woke her up and she said she was hungry. She could not eat the food they served her and she spit out the meat. I got her food from the fridge. She ate the rest of her lobster bisque and a yogurt. She has requested Whispread cheese, Alouette cheese, more bisque and ginger ale. I've been racking my brain for more food ideas. Suggestions are welcomed!

Alison said she got a full bath and hair wash. She was happy about that. She asked why her physical and speech therapies have been stopped. She was not happy about that. She told me about the nurse Reenie hired. I asked her if she liked her and I got the expected "no". Why? She said she is young. She had nothing else to say about it. I think she is grateful for the extra care.

I told her that a pipe burst in her house but it was discovered in time and nothing was ruined except the wall. She started to think about where else she could live when she gets out. So she has hope despite being sad/mad about where she is. 

She says her roommate is evil/two-faced. 

We laughed a few times. I asked her if she would be interested in some crystal/spiritual healing. She said yes and started to cry. She asked what she did that was so bad to deserve this existence. :(

I told her I would research some crystals and bring her dream catcher to hang over her bed. 

Next week we start our Downton Abbey therapy. I think it will be a nice escape from BridgePark for both of us. 

Steady As She Goes

Reenie - there are several action items included below.

Alison was asleep when I arrived. But she opened her eyes with a smile on her face when I asked her to wake up. She is a little bit sedated (flat affect) as at my last visit. But right now I am not overly concerned. We had good discussions, and she laughed until she cried as I shared stories about a trip to Europe with my dad where I nearly accidentally killed him four times. She does have a wry sense of humor.

I checked in with Lakshmi from PT who shared she talked to Yolanda who runs nursing about Alison’s eating. Yolanda says she has straightened out Alison’s food. Three meals a day are now being delivered to Alison. And Monica, the nurse on the floor, says staff is feeding Alison. Alison is not too sure that this is happening. When fed, she says they force her to eat (not pleasurable). Alison does not think she is getting peg fed daily but is not sure. We need to monitor this closely.

Lakshmi told me that they had completed a course of PT and OT for Alison on March 7. They have not prescribed any more for the time being as Alison does not appear able to make progress on working on assisted transfer from her bed. They will reassess restarting PT and OT in the future, as Alison regains her strength and weight from when she was in the hospital with the high fever. Speech therapy still sees Alison and assists her with one of her feedings. I am having PT remove the wheel chair from Alison’s room as Alison should only be put in a Geri chair (and the old wheel chair is still there). I cannot confirm whether Alison is put in the Geri chair each day. We need to monitor this too.

Reenie is arranging to have on geriatric caregiver come to see Alison 3-4 times a week to assist her with things like moving her arms and her legs to regain range of movement and feeding her. When I shared this with Alison, she cried. I asked why, was it sad or happy? Alison said it was happy! We will share more news is we know the schedule and who will be hired.

Some odds and ends:

Mary Pat went to see Alison last Thursday. It looks like somebody brought in more lobster bisque on Sunday! Alison said Philip saw her yesterday and gave Alison a card from Joanie and Todd. Mary Pat may go visit Thursday.

I brought in more cheese spread (and some other foods that Alison did not like as much - so they are going home). Today we cut fingernails and toenails thanks to Amy telling Alison to have me do it and then Alison remembering to tell me that Amy had asked me to do it! I also brushed her teeth as the staff have only been using a swab stick. Let’s ask Yolanda to make she Alison’s teeth are brushed daily. Be careful, gums are bleeding a bit due to lack of care.

Alison for a second time asked if she was being moved to the rehab place closer to where Alison used to live near Mary Pat.

Sunday

Philip and William arrived to find thick tension in the air. Alison was in the hall in a wheelchair. Apparently, she and her roommate had been fighting and Alison used the N word. Philip was able to mediate and the two reconciled. 

I arrived shortly after that. Alison's dinner was delivered. She ate some of it. I brought lobster bisque and butterscotch pudding. She ate some of that too. Philip and William got Alison in bed. She was complaining of an itch at the base of her spine and demanded that someone scratch it. I don't know if it's a burgeoning sore or a healing one.  Something to keep an eye on. 

She asked me to wash her hair so I did. She says she want to die (overdose). Kill me. 

We talked about her being nice (not using racial slurs) to get what she needs. She said the staff wants her dead. "That may be so but they won't kill you", I said. She seemed disappointed.  Is she trying to incense them as a means to an end??? "So you may as well be sweet so you can get what you need."  I can't believe the conversations we have. I left there feeling so icky this time.

She was happy/surprised to see Philip but her mood was really low. She half smiled/laughed only once. She was exhausted but stayed awake for her hair wash. She was totally coherent. 

She asked if I could come more. I can't. Hopefully Philip made it over again today.  It seems like between Mary Pat, Andy, and me, Alison is getting at least three visits a week that I know of.  

Movements of Mental Acuity

Reenie – look for call Thur from Lakshmi re PT and make sure to ask her about feedings (see below for both).

Alison was asleep when I got there at 11am. She did rouse herself but appeared with flat effect the whole visit. Alison’s roommate told me that yesterday the Dr Pat increased Alison’s meds given her outbursts (here we go again). I at some point asked and heard that they had stopped Ativan and moved to Chloripizan (?sp). Alison is neither mumbling nor sedated with her eyes shut, just not really as there as I am used to.

As Amy posted, they have upgraded Alison’s bed so it is now electronically controlled vs crank. It makes it easier for the repeated cycle of sitting her up to allow her to eat followed by laying her back down because of pain. Her bottom still hurts (? due to skin erosions – I asked them to change her at 11:30 so I could see but this had not been done by 2pm when I left).

I tried to find out what was going on with Alison’s feedings. I now have 6 conflicting data points. Alison and her roommate say that Alison was not given trays OR peg tubes for two days (may not be accurate). Alison later said she really liked the mashed hot dogs they gave her at lunch (when?). Per Lakshmi in PT, they do have periods during the day when patients do not received peg tube feedings, during which they schedule their other appointments like PT/OT/Speech. That means that interruptions in peg feeding are normal. When I got to the floor, Nursing told me Alison was not set up to eat regular tray feedings and that only Speech Therapy gave her food. Just afterwards, Dietary delivered Alison’s lunch… When Speech Therapy came in, Rachael said that she thought the previous Speech Therapist had put Alison on pleasure eating for 3 meals a day – that is what pleasure feeding is (vs some other term that restricts feeding to only Speech Therapy). Rachael said she would check. Lakshmi said she would review Alison case Thur during the weekly review with Nursing, to discuss if Alison is not being given either regular peg or pleasure feeding. My view, there is not sufficient staffing on the 4th floor to have time to feed Alison, given how long it takes (a 7th data point)... Alison says she is now 135 lbs (an 8th).

Regarding PT, Lakshmi is going to contact Reenie Thur about temporarily holding off on PT, until Alison’s ability to benefit from it improves.

I spent most of my time with Alison feeding her butternut squash soup and Aluette cheese (more supplies are still in refrig) and massaging her arms and legs. Next visitor, please bring more lobster bisque (Giant carries it prepackaged near their veggies for $6). Alison appears unwilling to try to do things for herself though I keep encouraging her to squeeze a tennis ball, move her fingers etc. She continues to say she wants to die. The room is noisy (TV on 24 hours a day) and hot. Oh my.

NOW the great info, which I saved for last. Alison is very together about certain things. I asked if she remembered when I was last there. Thursday she said – Correct! I then said that today was Wednesday. She said, "March 5. It is Peter’s bday. I would like to call him." I called his home phone and when the answering machine picked up, Alison waited for the beep and on cue left a complete and lovely message for Peter. When done, she asked to call his cell and remembered the last 7 digits perfectly. So we left another message. Ain’t the brain amazing!!!

Saturday 3/1

When I arrived, Alison was starving and her diaper was rock solid/full like it hadn't been changed in a good 12 hours. Alison said they hadn't fed or changed her all day. It was 4 pm when I got there. What???  I am always a little skeptical and try to give the staff the benefit of the doubt but it looked like what Alison was saying was true and her roommate said it was. I immediately asked for a diaper change and to get Alison's food from the fridge. I fed Alison for an hour!!!!  She finished off the soup, a can of ginger ale, a bunch of cheese, and some yogurt. Still no diaper change. I asked the staff to get me a diaper so I could change it myself. "Oh oh we forgot.  I'll be right in."  They changed her but left her in her gown that was urine soaked but had since dried. I took this off her and draped her with a shirt. Before I left I had taken a new gown off a cart in the hallway and dressed Alison. 

They did bring me towels right away so I could wash Alison's hair. That was a great experience.  It felt really good to Alison and it was relatively easy to do with the inflatable basin I got. 

A disconcerting visit. Alison says she notices a differences in staff attentiveness week days vs weekends. When I asked them when they were going to feed Alison, they said she had declined food just a little while ago. Both Alison and roommate said they hadn't even given her feeding tube all day.  From what I saw, she had clearly been neglected that day. 

The staff knew I was suspicious and angry and made feeble attempts to show interest in Alison. "Oh miss Alison you're hungry now?"  Once I got Alison cleaned and fed, I was going to ask the staff what was going on with her care but they were MIA. I decided to spend my time with Alison instead of hunting down the staff.

Alison's left foot is really swollen.  She is 100% coherent/normal. She said she has bed sores but I inspected her whole body and didn't see anything. I tried repositioning her but could not get her into a comfortable position. She does have some rawness at inner thighs most likely from wet/chafing diaper. Her legs are skinnier than my arms. 

She loves the Giant brand lobster bisque and asked to always have that. 

And she got an electric bed which is a huge improvement !!!

Alison's Hair

I bought an inflatable hair wash basin. I am going to attempt it tomorrow when I visit.  Should be an adventure!!  I hope it works.  

Tuesday and Thursday End of Feb

I got a call from Mary Pat that she had seen Alison on Tuesday. She said that Alison was alert and very together. Alison asked to eat the rest of the lobster bisque and the Aluete cheese spread I had left at my last visit. She and Mary Pat talked about Stella and cried appropriately. Mary Pat was very happy to find Alison in such stable and good shape.

Today I visited Alison. On the drive up, I talked to nursing and they said that Alison had slept through the night. As well they started using a Jerry chair with Alison yesterday. This is good news as it will get Alison sitting up again. But Alsion is not strong enough to sit upright in a normal chair plus faces the risk of throwing herself out of it, so they have started back with the Jerry chair. And they have to use a sling to move her to and from the bed - no more pivoting off the bed.

While I was with her, Alison got visits from both PT and speech. They have her moving her right leg and arm, although it is only modest movement. And they are asking her to move her left limbs as well. There are signs that Alison will be able to regain some left side movement. Speech therapy watched me give Alison more lobster bisque and herb cream cheese. They said to remind Alison with each bite to swallow strongly and to remind her twice with each bite to make sure nothing is left in her throat. Alison said the floor staff is not feeding her any food because "she did not earn it". I have asked speech therapy to follow-up to make sure that withholding Alison’s “pleasure food” is not being used as a punishment for Alison. Alison still gets peg tube feeding. As well, this is the third time I have requested a real shampoo for Alison!! It will require work on their part to get her into a real shower. Maybe now she is again using a wheel chair?

While Alison was very cognizant and able to participate in a dialogue with me, she has returned to saying "I want to die". She does this when she is asked to do something for herself like wipe her own mouth or exercise her own limbs. Perhaps it is due to the realization of how far she has to go? Not wanting to do the work? I just remind her that a) she needs to work on her own recovery, b) it will take work and c) she can get better.

As always, please come visit Alison. I am finding the best time is after 1130. I call ahead to make sure they have gotten her up. Alison also asked if somebody would contact Phillip and ask him to come for a visit. If you want to feed Alison, I have left more food in the 4th floor refrigerator with her name on it (the staff can get it for you). There are cups, spoons, salt and pepper in the top right-hand drawer of her dressers. Remember, she can NOT drink plain fluids; they need to be thickened with a powder which is at the nursing station - honey (glop glop) vs nectar (drip drip) consistency please.

Sunday

I did see Alison yesterday. I will try to get a more detailed post up soon. 

I signed her up for a hair cut (Alison's request) through the activity director. By signing up, I mean I wrote Alison's name on a scrap of paper the woman handed me.  Someone might need to follow up on this. I got the impression that it could be a few weeks before the hair guy would be back around. 

She was lucid/normal/alert but sad about Stella. 

All Stable

Alison has moved back to her old room, 407A. While it is more cramped space, she does have her old roommate who watches over Alison and creates activity. It is still a pain to try to crank Alison's bed given the limited space. Let's see how the roommate situation goes....

After talking with Amy, I shared with Alison that Stella was in distress and was going to see a vet today. I explained that Stella could not move and it would be best to let her go. Per input from Amy, I shared how happy Stella had been these last few months with fellow dogs. Alison said that Stella would be happy to see K....(? a dog that had already passed). But she did cry. So we got up the courage and facetimed Stella to wish her well on her jounrey. Both Alsion and Amy are taking it bad.

They say Alison is eating her honey thick food PLUS getting a stomach peg feeding. When I saw Alison, she first asked if I had brought her butternut squash soup (a fav) or chocolate. I told her I brought lobster bisque and we still had aluette herbed chesse. Alsion would eat a bit of each, then her back would hurts so we would crank her bed flat, then she'd ask to eat again so we'd crank her back up. After about 5 of these up and downs, I told her more food would have to wait. I did raid the kitchen in the basement and have stocked the top drawer of Alison's chest of drawers with salt and pepper - please season her meal food whenever you have a chance. I got them to give me a container of the thickening powder to turn drinks into honey thick fluids -- the container has to be kept at the nurse's station and the cups are in her top drawer. Get OJ from the medicine cart or I squirrelled away 3 ginger ales into "an Alsion special foods paper bag" that is kept in the nursing area's refrigerator, ask for it. That is also where the aluete chesse and chocolate syrup are kept. As I left today, Alsion asked if she could "have some more?" Very Oliver Twist.

Other things: I have escalted my request to get Alison a real hair shampoo. Her scalp really needs a cleaning as it is now very crusty. Please also push teh facility to do this. Alison said that PT has been working with her. She showed how PT had asked her to lift her left arm with support from her right arm, and move her right leg. I suggested to Alsion that she wiggle her left toe even if she could(not yet) lift her left leg. Good news that PT is having Alsion work. BUT, Alison does NOT have a wheel chair yet. I am not sure if PT thinks that Alsion cannot sit in one because Alsion does not have the coordination to release a needed lap belt used to keep her from falling from the chair). Can someone talk on Monday with Lakshmi who runs PT to see how to move this forward? Alison, as I left, became frantic that they would not let her out of bed....

Amy plans to go Sunday afternoon. Mary Pat either Sunday or Monday. Sorry to be late with my blog from this morning!

The room needs a wall clock, she could do with socks. You know that LVOE is most important!

Alison's Move Back to BridgePark

Alison got moved back to BridgePark last night so I went to see her today to get her resettled. She is now in room 311 and has the more spacious and sunny window bed. She was awake and cognizant when I arrived. And immediate asked for my “Help”. When I asked her to tell me what she needed, she imediately was able to tell me what and responded with “Heel”. Turns out she had lain on her back in bed so long without foam heel pads that her heel hurt from pressure on the airbed. So I put a pillow under her legs and massaged her heels. Tada, no more “Help”!

I did spend time today massaging and moving Alison’s limbs as they have stiffened from lack of movement during her 2-3 week stay at U of MD without rehab. As I was doing it, she would say “Ouch”. I would ask if it was #1 (right hand) or #2 (left hand) that caused the pain and she would tell me which. I would aask if it was big or little pain and she’d say little. I did share with her that she was becoming like the Princess and the Pea, feeling everything! When I also shared that Kim (my twin sitter, a physical massage therapist) would do it sooo much better than me, Alison said that I should not be “Self Deprecating”. I then commended her on her great choice of words, and she in turn said “It runs in the family”. So overall, we had a good time working with each other and playing.

Alison did beg for me to take her home with me. I explained that she still needs 7x24 hour care that I cannot do. I explained that she can and will grow stronger. She should set a goal to be able to move around with a walker or wheel chair. When asked, she said she understood. At one point later, she then said she wished she would be able to go home with Aaron and Amy.

Of course, when I asked the rehab unit for Alison’s belongings, they were nowhere to be found. After much searching, we found some of them under piles of clothes in the closets of her old room. In her new room's closet there are many T shirts, 3 long sleeved warm shirts, 3 pretty shirts, 2 leggings, one short, and 2 pairs of shoes. Some are dirty so I have asked nursing to get her dirty laundry washed so she can wear those clothes. We also found her photos, Raven hat and xmas decorations. No bras or socks. What else are we missing? Bring old sports bras if you have them IF they hook in the front or back. And socks. And thumb tacks….

Alison is yearning to eat! I asked for Speech Therapy to see her today to re-evaluate whether Alison is ok to eat honey thick food and drink. They have to do it each time she comes back to the unit. Until they do that, she can only use the stomach peg. I put a bag of Alison treats in the fridge for her – coffee Greek yogurt with chocolate, aluette creamed cheese and chocolate syrup to make drinks tasty. She asked for creamed butternut squash soup and liver too (she knows me too well)!

Alison's Address

BridgePark Health Care Center 
4017 Liberty Heights Ave
Baltimore, MD 21207 
410-542-5306

Back to BridgePark

Alison was set to return to BridgePark this evening. I haven't heard anything but assume she has made it. No room number as of yet. Her peg tube is in and the doctors say she is alert. 

I got a call from Claudette (Harford Terrace neighbor). She intends to visit soon. 

I know Andy hope to get there this week and so hopefully we will get a thorough first hand account from her. 

Mary Pat Info

- Mary Pat saw Alison late this afternoon
- While the stomach peg is in, there is still some (normal) bleeding BUT no real pain
- Alison has not yet been fed with stomach peg so any cognitive or physical improvement is just "cause"
- Alison though she was going home this evening (home not rehab) and created a little scene when she was told it was not true....
Oh my.

And Two Steps Forward

I just called the hospital and Alison now has the stomach peg. The nurse would not provide me the info over the phone as I was not "on the list" (they only have room for 3 names). But the nurse asked if I would want to talk directly with Alison. What a novel concept... So they transferred my call into the room and put Alison on. She said clearly, "Hi Andy, how are you?" Yippee! When asked, Alison said the peg was in and that it still hurt but that yes, she was feeling stronger with food. The nurse said that she looked better too! And the bottom errosions are clearning up.

Soo - call the hospital 13East (410) 328-3095 and ask if Alsion is awake and can take your call. Share how much you love her, how proud you are of her for doing the peg, and cheer her on. If you go visit, she likes liver pate, thick soups and chocolate mouse (as long as they are smooth). Mary Pat may go today, if she can. I will provide an update if MP shares info with me.

Another Little Step Forward

EVERYONE: to facilitate communications, please text my cell phone if you go for a visit c 703.201.6676 so we can coordinate coverage (thanks Christina for the comment to Amy’s last blog about your visit). Also, the social worker was there during my visit talking about outplacement. So call before you go to make sure Alison has not yet been moved. Nursing on 13East is (410) 328-3095.

Alison was asleep when I arrived. So I started talking to her and asked her to wake up. And then I took out my iPhone and I started playing music for her while I asked her to wake up. The playlist I first selected was “Soul Music”. Alison opened her eyes and saw it was me. I asked her if she liked the music. And she said "too old". I knew we were going to have a good day.

Remember how last visit I rated Alison at a level 3 on a scale of 1 to 10 in terms of her cognitive awareness? Well today, we got up to a 7 or even an 8. [Remember the 10 at the top of the scale is Alison's cognitive ability post the stroke….] As Alison woke up, the morning started at a 4 or 5. Alison could give me single word responses to questions I framed for her. When she said ouch, I'd say ouch or itch. She’d say itch. I’d ask nose. She’d say no. I asked neck. She said yes. I itched her neck. I asked better. She said yes. It was a modified version of Simon Says.

Over the course of the time with her, she became more alert and could give me multiword responses. She also raised new topics on her own (like that she had watched a movie on TV and did not want to watch the Olympics)!! She did show humor a number of times. She kidded me about bossing around the nurses. She showed her irritation when I tried to take a video of her - "Stop smirking" and "you are annoying". She also said, “My eye hurts but I can handle it”.

Of course, the main issue I focused on was the status of the stomach peg. It turns out that there have been potential complications slowing the stomach peg – per nursing, Allison has had uneven blood pressure and potential seizures (turned out not).

I then talked at length with Alison about the stomach peg. When I first asked her, she said she did NOT want the stomach peg. After me asking additional questions, it turns out she is afraid of the pain. We then spent a lot of time talking about how the stomach peg would help her get strong, like when she was first at South River. I also talked about how this time she could still eat; the peg would make sure she got sufficient nutrients. I then repeatedly asked her to make a choice as to which was more important to her: to have no pain or to live and grow stronger. I told her it was her choice, not mine. At first she kept saying both. I told her she had to choose one or the other, and she replied not dying was more important.

The doctor on the floor then came in. I shared Alison’s and my discussion. The doc says they understand that Alison may say she doesn't want the stomach peg but that she really does. The thing that is holding up putting in the stomach peg is the G.I. team wants Alison to have us psychological evaluation to confirm that the stomach peg is appropriate. Because I am the cynic that I am, I think they want the consult so they can create a cognitive benchmark for use in evaluating any potential post surgery issues. So it looks like the stomach peg may go in tomorrow. I then called Mary Pat to share the update and MP will try to go Wed post surgery to check on Alison. Psych came in to do the evaluation as I was leaving.

I went on a search in the hospital for chocolate mousse, hot mashed potatoes with butter and salt, and anything else that might entice her to eat. It turns out she really likes the cafeteria’s shrimp bisque soup into which I had to put some mashed potatoes to thicken it from now nectar to honey consistency. She ate five or six spoonfuls of the soup before I had to leave. And she kept asking the person doing the psych evaluation for more (instead of answering the questions). Poor resident…. This was the most I have seen Alison eat in the last two weeks, other than a spoonful of applesauce with medicine in it. The nurse said she would have somebody feed Alison the rest of the soup mixed with the mashed potatoes.

We did another cap "hair shampoo" and cut her fingernails. Only did modest neck, arm and leg messages. Physically, there is a little more movement in the right arm and the right foot moves sometimes (not on command). The hospital is going to have a wound nurse come to treat Alison's modestly increasing bottom sores.

I am not sure when I can next go as I have in-laws in town next weekend. It might be Monday in 7 days.

Sunday at UM

Alison is in 13East Room 20. 

She was awake but drowsy and dozed off a few times. I asked her if she had her surgery to have the peg tube reinserted. She said she had refused it. I asked why. She said she didn't want it (at the time) but now she doesn't care.  She did say that she does not want to eat. I didn't get a clear answer as to why not but my guess would be because of what they are serving her. 

I guess she could be described as alert. Our conversations never really went anywhere.  Most of the time she wouldn't respond. She was very distracted by the nature show (no sound) that was on the TV. She was able to tell me that she hadn't had any visitors today. When I asked if she knew where she was she said Greenmount. Maybe she meant Greene Street? Not sure about that. I asked her if she remembered my ceramic jar that we used to put our wishes in. She said no. I told her I was emptying it out recently and I found one of her wishes: "to have enough money to finish the garage". She was amazed by that. "Really????"  I told her to think of a new wish for me to put in there for her. She couldn't think of anything or maybe she just couldn't express it. 

She could wiggle her legs a little and was pawing at her nose with her right hand like she always does. She asked me to prop her up and her left shoulder was not hurting. 

I asked her if she wanted her hair cut short like she used to have it. She said no, she wants to grow it out. 

She is looking forward to a visit from Andy. 

Only Limited Forward Progress

I went to see Alison today (Tuesday) at U of MD Hospital, 6 days after my last post about the MICU (last Wednesday). After a week in Medical ICU, Alison was moved on Sunday(?) to the North Hospital floor 13 East Room 20. She is in a single as she is still calling out, though I heard she slept last night until 6am. That did not help with her level of awareness today. Her speech is very muddled ie she is not enunciating and is repeating the same thing over and over. They have placed a nurse's aide in Alison's room "full-time" last night and today to see if they could quiet Alison down.

Alison's temperature is down. Per an email from Reenie, Alison's vitals are stable. Her BP had been fluctuating but is under control now. Her temperature has been
under 37.5 (99.4). EKG, CT scan of her head all normal. Nursing said Alison did not appear to be in pain. I got them to again brush her teeth and we did a "hair wash in a cap" - She really liked the warmth from the fluid in the cap and the head massage but she really could use a real shampoo. Everyone, ask for one to do with Alison when you are there.

We had a visit from Speech Therapy who had performed a third barium test barium test and cleared Alison for honey foods. So she had started to eat. But this morning, Alison was so sleepy that nursing restricted her to no food again and had speech therapy return. Nursing is concerned about whether Alison will swallow the wrong way. Given that Alison isn't eating today, she is not being given meds. So the vicious cycle continues.

The G.I. department also came in and are starting their assessment for the peg tube now - they had to wait until Alison's temperature and blood pressure were stable. It may be put in 2-3 days once they talk to Reenie. They want to do a calorie intake study. I explained to GI that in her cognitive state Alison cannot eat enough to sustain herself. She needs real nourishment, not just IV fluids and electrolytes etc. I think the last time I saw her eat was during my visit of Jan 14. Alison's scale on her bed says she is 146lb.

Then a new intern came in and asked how Alison's cognitive state was compared to normal. I replied that before her brain injury Alison was cognitively normal (shhh, no one call out my little lie). Since the brain injury, she had recovered to the point where I had spend 2 hours with her joking and talking about life and recovery. Over the last 2-3 months, she had declined and had been treated with anti-psychotic meds and had swallowing difficulties. On a scale of 1 to 10 (with 10 being at Alison's best post the brain injury), today was only a 3. I shared that I did not know what was causing the degradation of cognitive skills (unless it was ongoing decline from the initial July events).

Alison is beginning to get bottom sores.

HAS ANYONE ELSE BEEN THERE TO VISIT? CAN YOU FILL IN ANY IMPORTANT INFO?

U of MD Hospital Update

Alison is currently in UofMD Hospital, the Weinberg building, in the Medical ICU seventh floor, room 710. Before you go, you can call the floor 410-328-6196 to find out if she is still in room 710 and if she is awake. Or call the main hospital 410-328-8667.

Alison is once again all hooked up to monitoring devices, oxygen and leg compression (to avoid clots). They had also shaved her shunt area in order to do an EKG. They have not found anything wrong and the antibiotics and IV are supposedly working as her temperature has dropped. But she was sleeping again when I arrived as she had been calling out all night.

As I was dictating this, Alison opened one eye and looked at me but did not try to speak or show that she recognized me. After a bit, I ask “Hellooooo, how are you?” and then when I saw a faint smile from her, “Is that a smile I am seeing? Am I being funny?” She responded, “I am funny”. I thought it might be aphasia or her perseverating (repeating what I had said). Then, when I told Alison who had been to see her over the last couple of days (Mary Pat and Phil), she turned to me and said "and you know who came to visit me today? Andy Riedy!" She STILL has a sense of humor when she can get her brain connected! Most of the rest of the visit though, she kept asking for help but could not recall a noun to tell me what she needed help with.

I got the nursing staff to swab out Alison’s mouth which was gooped up with phlegm etc. The Doctor and residents came by doing rounds but never stepped into the room or talked with me. The Physician Assistant came and gave me a briefing – thanks Reenie for adding me to Alison’s list. Alison's temperature is returning to normal.

Per the PA, they need to have speech therapy formally confirm Alison’s swallowing difficulties in order for the surgical team to get approved to give Alison a stomach peg. While I was there, Alison later had a visit from the Gastro team. I explained that Alison had 2 bariums that showed silent aspiration, that she had been eating solid foods several months ago but now was limited to honey-thick foods, and that it may not be necessary to do a calorie count as Alison was not able to eat (or drink) enough to keep herself healthy. In addition to speech therapy’s signoff, Allison has to be clear of a fever for at least 48 hours before they can do the stomach peg procedure.

Given the 2 day delay, I asked Gastro (and nursing and the PA) to speed up the speech therapy evaluation to see if Alison can be restarted on food to help with her nutrition NOW. Alison heard this discussion and on queue asked for “Food”.

Alison may be moved today or tomorrow to a normal room. As well, they are restarting all her meds (including blood pressure etc.) Once in a normal room, PT and others would need to sign off that Alison is no longer at risk and that it is appropriate for her to be returned to the rehab facility (post the stomach peg?).

Finally, once back in rehab, can we get Alison’s hair washed?? The EKG goop, on top of the poor shampooing at the rehab unit, mean that Alison has really bad bed head…

Fever and Transport

Alison was transported to UMMC on Sunday with a high fever. She is in ICU. Her fever has subsided. 

Yesterday Mary Pat was there. She said Alison was pale and staring up at the ceiling. Her breaths were shallow. Two male nurses were in the room and ran out and ran back in with a box. Mary Pat asked what was going on. They said they were going to intubate her. Mary Pat informed them of her DNI order and so they stopped. She said everyone gathered around because they thought Alison was going to go into arrest. Miraculously, she pulled through it (like she does) and was alert and knew who Mary Pat was. 

They are not allowed to post DNR/DNI orders because of HIPPA. WOW!!!!!

Mary Pat told Alison that she would be in touch with Reenie. Alison requested that she notify "the Boss".  Philip. :)

They will test to see if she had aspirated causing her temperature to spike. 

More as I hear. 

Sleeping

They say Allison was awake last night with one of her yelling bouts. After I called to day I was driving up from WDC, they gave her a Clonopin and pain meds this morning because she kept saying ow. She is now fast asleep at 11:15 and I cannot wake her. Next time I call, the nurse said she would hold off on the Meds so I have a chance to spend time with Alison, awake....

I asked them to rewash Alison's hair today. Her scalp is very crusty with white residue.

I brought individual served chocolate puddings as well as a fancy chocolate sauce. Whoever comes, please ask for it and let Allison enjoy it with her desserts. I also left a butternut squash soup with sour cream for the nurses to give her later today.

Sent from my iPhone

From Reenie

Jan. 17-20, 2014 From Reenie:

 

Alison was better than she was in December when I saw her last.  She was more alert, more responsive, and moved more (she moved her left leg and arm voluntarily, which was different from December).  She also was trying to shift her body in bed, although not successfully.  She can hold, and drink out of, her own cup.  She can feed herself with a spoon, although she gets tired easily. She is encouraged to sit in her wheelchair—working on holding her back and head up strengthens her muscles.

 

She didn’t yell out, and was not incoherent.  She still has trouble finding her words, but often with repeated questioning I could figure out what she wanted. Her new way of asking for something is to say “help me” and then we work to help her say what it is she wants (have something more to drink, move the pillow, get in her chair, move the curtain so she can see her roommate’s TV, watch more So You Think You Can Dance on my iPad, or help her figure out her words for what she is trying to say or remember…).

 

The staff at the new facility are very attentive, friendly, courteous, and responsive, and Alison seems to be getting good care, judging by what I saw.  The nurses and other staff come and go a lot, and are very sweet with Alison. It is an intimate surrounding and there is a LOT of hustle and bustle, patients and staff constantly moving about, a lot of activity, a lot for Alison to pay attention to –and be stimulated by (even trying to figure out conversations she hears in the hall).

 

She is getting speech and physical therapy (and they will start cognitive therapy soon).  The speech therapist said it is very important for people to be encouraging and upbeat when interacting with Alison, expressing confidence that she CAN do things (even if they are difficult).  I saw it myself.  When I would give her a pep talk, she would muster the energy and the will to do things.  She says she wants to get better but says she is afraid that she won’t.  So the encouragement is enormously helpful, as is focusing on concrete, small steps she can take so she doesn’t get overwhelmed (not surprisingly, she gets overwhelmed easily, thinking of the magnitude of her situation).

 

When Alison wants something she gets impatient (nothing new there!).  With repeated assurances that it will happen/get done, she understands and is willing to wait. It takes patience on our part to interact with Alison—waiting while she searches for the words she is trying to find, doing a version of “20 questions” to figure out what she wants when her words are too few or aren’t quite right, waiting for her to swallow her mouthful of food,…).

 

She was not in pain the whole time I was there.  Only a couple of times she briefly said her back hurt, and by moving her legs to simulate exercises for back pain, it helped.  She never asked for pain medication while I was there.  Once the nurse asked if she wanted her medications and Alison responded yes.  When the nurse brought it in, I asked what it was for, and she said pain.  I was surprised because I didn’t think Alison was in pain—when we asked Alison if she was in pain, she said no, so the nurse took away the medicine.  (Why Alison said yes, and what she thought she was saying yes to, or whether she was just saying yes automatically is not clear – still need to work on clearer communication and figuring out exactly what Alison wants and needs.)

 

Mary Pat and Dawn were there on the last day I was there.  It was a lot of fun mixing thickener with ginger ale (which made a volcano), moving Alison about in her chair, trying to figure out whether Alison wanted the cheese or pate that Andy had brought earlier, having Alison look at the ceiling to lift her head…. As Mary Pat said, together the three of us almost made one nurse. Alison and I were both very sad when I left, Alison cried and cried. I will be skyping and/or face timing with her soon.  (She likes that—so please try it, it’s a good way to keep in touch if you are too far away to visit.)

 

If you want to know about something I haven’t addressed, or haven’t thought to talk about, the best thing is to email me directly: webb@ucla.edu. Thanks for thinking of Alison and, especially, for visiting her!!

Challenges

I again visited Alison today. While she was cognitive and able to speak clearly, she is still very physically limited. She can move her right arm and right leg a bit but only can ocassionally move her left arm and leg in a limited way. I sat with her during PT where they moved her from the wheelchair to sitting on a workout bed. She cannot yet hold herself upright and finds it confusing and scarey. I hope PT will help her re-learn soon how to control her muscles.

Re food, Alison's intake is still limited. She finds the facility food bland and repeatative. Today I took her assorted smooth, honey consistency foods. She liked the liver pate and the aluete herb cheese. The butternut squash soup with sour cream was still a hit. She likes gingerale mixed with the tickening powder. But overall, the volume of intake is still very low.

We are waiting for Reenie's arrival Friday after 5pm. Amy will go out Sat and I will visit Sunday am. Reenie leaves Mon at 5pm so come by for a visit!

I Need More Visitors

Today was my first visit to Alison's new place. It is old and dingy and cramped. Her roommate was outside the door cussing out the nurse for something. Alison's bed is pushed into the corner of a room. She has no tv, no view. Just the curtain that divides the room from her roommates side. When I walked in, Alison was staring at a blank wall. She was happy to see me. She says she is in a lot of pain. The nurse said she was complaining of that all day and that she wasn't due for the next dose of pain meds for another hour. She said that Dawn was there earlier and helped turn Alison and that they had been repositioning her all day. They were contemplating putting Alison in her wheelchair but said she hates it. I lifted her legs up one at a time..in bicycle pose and then straight up at an angle.  We did this several times and held the poses for probably a minute each time. She said that helped her back a lot.  

She has a half dollar size sore on her left leg by the knee. 

We talked about her weight loss and lack of eating. She is bored and disgusted by what they give her. She wants to leave but does not want to go back to "the meanies" at South River.  I told her Philip wants her near him and she could not suppress her joy and smile..although she was really trying to for some reason.  She said Dawn had been there and that she needs more visitors. She asked me what took me so long to visit. 

She was completely (seriously 100%) coherent today. There was no crazy talk, no delusion, no searching for the right words, no yelling. We had several normal conversations. She was very subdued and I think that can be attributed to the pain and she seemed sad. 

My only concern with the facility (from what I saw today) is it's lack of modern equipment. Alison was thirsty and so I got the nurse (or aide) to bring her a drink. She could not get the bed to crank up for Alison to be in an upright position. So she tried lifting her neck with one hand while holding the thickened cranberry in the other. I pulled her up gently by the arms.  Alison took one sip and could not endure the pain of being held up. It was pretty ridiculous and I know Alison was still thirsty. 

Overall good visit. I was really impressed by Alison's demeanor and with-it-ness:)

Yipee

Today was a red letter day. It was the first time I saw a positive path forward in two monthes! When I arrived, Alison was awake and talkative. She was no longer speaking in mumbles or with confused speech. Mary Pat showed up. Allison was given a sponge bath and dressed in Julie’s hand me down clothes. She ate food. Pat and I talked with the doctor, speech therapist (Rachael Gordon ), occupational therapist and PT staff (Laxshmi). We gave them Alison’s medical history: from bad back and neck, to aneurysm, to her heart attack and progress and setbacks since then.

When we first arrived, Alison was depressed and negative. She said she wanted to die. We talked to her about all the progress she could now make and during our visit we showed her in all the ways she was moving forward. She continues to tell us that she is scared and ask for help. We remind her that she needs to work now on getting better. While it will take work, she should not be scared. I hope it sinks in.

We gave the speech therapist the history of Alison swallowing problems, starting when Alison was on the antipsychotic meds. Rachael is going to have a repeat barium test done since the one at Anne Arundel was about a month ago. She wants to see if Alison can progress from just honey thick foods. Allison will first need to strengthen her swallowing muscles.

I took Alison some butternut squash soup with sour cream which she adored. She then ate some of her lunch and drank for drinks. She really missed plain water! We ask the dietitian to provide Alison was salt and pepper and butter with each meal. They are also going to add special protein-enriched drinks / ice cream. They will weigh her weekly to see if she is able to eat enough to maintain her weight. She is currently 151 pounds. When you go to visit, take tasty food that is pureed and thickened so we can encourage her to eat more. I think she would really like a smooth liver pate!

They have Allison in a normal wheelchair. They say she can sit up in it and they want her to regain her core muscles so they want to avoid moving her into a geriatric wheelchair. Today they moved her from the bed to the wheelchair using a sliding board. Alison was not really able to help yet, but it was the first time I have seen her do the move to a chair without being in a sling. Excellent!

I went with Alison when she was taken out of her room to the OT/PT room and given electric stimulation in her left arm. They also had her sit up on the edge of a sitting table for five minutes, with some support. I kept reminding Allison that it was important that she sit up straight and keep her head up (she said good posture) so that she could get stronger.

Earlier this week, Allison was calling out a lot and very loudly. Yesterday, she was seen by the psychologist who changed her meds again. I could not find out what they were changed to. Staff said today Alison was not calling out as loudly and frequently.

From today’s visit, I would say that the staff really is trying to work with Allison to help her improve! I told Alison about Reenie’s upcoming visit and encouraged Alison to do as much as she could in the next week, to show Reenie her progress. I will next go out Tuesday 1/14.

Keep news coming, both good and bad!