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.