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.