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.