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.