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.