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.

Challenges

Rolina, the CNA Reenie hired to visit Alison 4 times a week, has been feeding Alison the special foods we leave as well as showering her and massaging her. It makes us feel better for Alison plus gives us important info on Alison’s situation, per below:

First, Alison has had two grand mal seizures. One was for three minutes 4 days ago when Rolina was there, and one was for one minute today when I was visiting. After the first occurrence, the facility had their in house doctor see Alison. I talk to the doctor today when I first arrived and he said that Alison’s seizure meds were at the proper level in her blood stream. They have made an appointment to send her to a neurologist. Her neurological appointment is now set for May 27 but they are going to try and move it up.

Just as I was about to leave at the end of my visit today, Alison suddenly complained of a headache. She then recollected that she had a headache when she had her seizure 4 days ago. As I left the facility, I reported this to nursing staff, as input to the neurologic doctor visit. After talking with the nurse, Alison was calling out so I popped back in. She asked me to remove the pillow from under her legs (there was none), said her foot hurt, and then started mumbling… it was a second grand mal seizure. It started about 4 minutes after she first said she had a headache? I got the nurse who observed it. We talked to Alison as she regained consciousness one minute later and kept her calm. The facility is going to try and move up the neurological appointment. When I updated Marissa of Caring Companion about the grand mal seizure, she was going contact Jimmy to see if Jimmy wants Alison to be taken to an ER for observation now or just wait until the neurological appointment. Jimmy was going to call the facility.

Second, we need to figure out how to work together to get issues raised and resolved that affect Alison’s care. Who takes the lead in coalescing issues? Who takes the lead in working them out with the facility? Rolina, Amy and I can just report what we see….

Over the last week or two, we have been identifying concerns about Alison’s care at the facility. I have raised some in my blogs. Rolina has also been texting me concerns from her visits which I have shared with Reenie. Amy too has texted and blogged some concerns. The issues are 1) Alison not being regularly changed or taken care of in the am, 2) staff unwilling or unable to assist CNA in moving Alison to the shower 3) roommate issues re overheating the room and threatening Alison, and 4) questions of whether Alison gets regular feeding by anyone other than the CNA or visitors.

Given continued lack of feedback that the facility had done anything on the issues, I went into my visit today ready to “shoot bear” (in a collaborative sort of way...). I talked to Yolanda (heads the unit) and Karen (Alison’s social worker) to raise the four issues. Yolanda and Karen did NOT know any of these issues and met with the floor nurse who said she also did NOT know. Yolanda then asked that Rolina contact Yolanda if Rolina had any issues during her visits. I then contacted Marissa of Caring Companions to update Marissa on the issues and instruct Rolina to contact Yolanda. Marissa did NOT know about any of the issues either! Rolina prepares daily reports but they are turned in every two weeks. Rolina had not raised them directly with Marissa.

Actions:
• Marissa is going to talk with Rolina so issues are identified real time. Marissa will raise them with family.
• Amy and I will continue to blog on issues from our visits.
• As I just was leaving, Monica the floor nurse told me they were talking about changing Alison's roommate situation. I ask what that meant. What they normally do when someone is acting aggressively toward a roommate is to move the aggressive person out of the room. Let’s see.

Note: Reenie left today and returns April 30. She asks to not text or call her unless an emergency given the high intl telecom costs. She will see blogs and email. Jimmy Webb is family point of contact in the meantime, jamespwebb@earthlink.net, cell (818) 414-1646.

Sunday

By Amy

I got there at 4:30. Alison was asleep in the dark. The stench of urine in her room was unbearable and stung my nose. I woke her up and said "have they changed you today?"  Immediately, a woman named Pam ran into the room, asking me who I was and talking really fast. She was fretfully telling me how Alison had been up all night and since she had been sleeping all day , they didn't want to disturb her by changing her because she gets agitated.  Pam was really nice but something did not seem right. She went on and on about the wonderful care Alison is getting, without even knowing who I am.  This outpouring of information was odd and seemed more like whitewashing what appears to be inadequate care.   Anyway, she assured me that Alison would be cleaned up from head to toe as soon as they could get to her.  Pam hugged me.  I was there for two hours as Alison lay in a urine soaked diaper and sheets and begged to be changed. I asked for her to be changed 2 more times. Finally when I asked again at 6:30, one of the ladies said she would do it herself.  They are clearly understaffed and uninspired to give basic care to Alison.  

Pam said that Alison is calling her roommate and staff offensive names and that Pam is constantly mediating.  Alison said her roommate tried to stab her in the leg with scissors. When I asked what happened, she said she missed and stopped. Given Alison's presence of (clear) mind and her relationship with her roommate, I don't doubt this actually happened. 

Alison has been yelling out. Alison was crying when I was encouraging her to feed herself. Her roommate yelled at her to shut up. 

We had a busy visit. Alison ate some soup and chocolate mousse. I mixed some greens + (thanks Joanie) with a blueberry smoothie. She loved that and the carrot juice I brought. She would have eaten more but was reluctant to feed herself. She was getting very upset, crying and saying "forget it". I tried to explain that feeding herself is the first baby step to getting better. She was not encouraged but did end up feeding herself. 

We Facetimed Christina and the baby. We called Philip. We watched about 15 minutes of Downton Abbey. I washed her hair. What could have been a great visit was eclipsed by Alison's discomfort/uncleanliness. Next time I go I will call ahead and see if they can change her diaper before I get there.  (That is pathetic.)

I will be unable to go this coming weekend. And Mary Pat has injured her leg and can't drive. Philip mentioned he might go Monday. 

New Coordination?

Today was my second time visiting Alison while Rolina, the CNA was there. When I came in, Ro was with Alison who was already in the Geri chair. Ro was massaging Alison’s neck . After together giving Alison a shower, we went into the day room. Alison was very tired and had a “flat affect”. Ro said she had been the same on Friday. I checked with nursing who reviewed meds – A is still getting Clonopin (?sp) 6am, 2pm and 10pm. Nursing feels it is because A has not slept much the last two nights. More about that below. So while Alison slept, Ro and I talked.

I asked Ro about how we would better coordinate care management for Alison going forward. So far we have been catch as catch can between me, Amy and Reenie. Ro says she writes daily care notes about Alison to her Supervisor. Ro said that as a normal course, Ro will raise issues. Her supervisor then will then get in touch with BridgePark to see if staff can correct an issue. WOW, how great!! We decided to try this process with two issues:

• Ro worries that the facility is taking advantage of her being hired for 4 days a week. Staff may skip taking care of A in the am because Ro will be there later. I asked Ro to track the following in her daily care notes: 1) Ask Alison if anyone had fed her breakfast 2) track whether Alison has already been changed and gotten up in the morning. We will see what Ro finds.

• Alison and her roommate have been fighting for the last two days because her roommate has been leaving the heat up. This is why Alison has not slept at night. Alison has started using bad words and nursing separated them this am. When I shared the issue for the second time with the facility staff, they said they had asked her roommate to turn the heat off it still continues. Alison says this is the only problem she has with the roommate (so it may not be time to ask for a roommate change). Instead Ro will work with her supervisor on ideas to request from the facility -- ask staff to go in there at night and turn off the heat after they're both asleep. Also leave the door open.

I had taken and washed Alison's dirty clothes as no one had touched her laundry since Alison’s return to the facility. Alison is missing some clothes but Ro thinks the staff has put them into the laundry system. Maybe we can have Ro work with the facility to coordinate getting laundry done and track clothing?

Yesterday, Ro had texted me toiletries and food supplies Alison needed so I took them to my visit today. I just restocked yogurt and lobster bisque. Alison asked for over the Odwalla carrot juice which Amy said she’d bring tomorrow.

I also was told today that Alison’s peg feeding is done every night from 6 PM to 8 AM. This is different info from my visit 5 days ago when they told me that were doing a peg feeding at 2pm. Is weekday different than weekend? Another open issue still to track down?

Going forward, I have to cut back to going once every 7 days. I have decided to go on Thursdays as much as I can. That way Ro does M/W/F/Sa and Amy does Sundays. Maybe we can get Mary Pat to do Tuesdays?

Reenie – some questions for you:
• Did you expect the group that Ro works for to take the lead in coordinating Alison’s care with the facility? This would be huge if we have someone local to coordinate with and oversee this!
• If yes, can I raise issues with them, for them to manage (eg the laundry, peg feeding schedule)?
• Can we ask them to share with us Ro daily care notes? When they raise an issue with the facility? It would be great to know what they are seeing and working on!