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!

Dogs

Thanks Andy for that post. Sounds encouraging!

I am not sure about taking dogs to BridgePark. I doubt it would be a problem but hopefully it's allowed. I think it would be good for Alison. She did not want me to bring my dogs to see her. I think there is still a lot of sadness about Stella. I am sure, however, that seeing a dog would definitely brighten her day. 

She told me she dreamt she got an English Bulldog. She was already trained and she named her Guppy. :)

Forward, ho!

Ok, you all now know that I am an optimist. But today as I leave BridgePark, I am again hopeful that progress can be made.

Today, I met with the Certified Nursing Assistant, Rolina “Ro” Fleurina, who will be helping Alison M/W/F/Sa from 1-5pm.
• Ro is mid 20’s, is very pleasant, and speaks very good English
• Ro does what Alsion asks plus has her hands on Alison, frequently massaging limbs or holding hands.
• Ro is very attentive to Alison's needs but also sets limits.
• I told Alsion HOW lucky she was to have Ro and how much I liked Ro.
I gave Ro Alison’s family info and then the July forward (and previous) medical, cognitive, and physical history. We shared the ups and downs of the last year so she could get a sense for the “water marks”. I also shared Alison’s personality, use of drugs, and tendency to avoid hard work. All is understood.

Ro started last week and, after two visits, Alison is beginning to move all her limbs. Only a bit but it is a start! I do not think I have since any controlled movement of three of the limbs since December. We tested Alison's physical control. She is now able to slowly raise her right hand, slowly blow her nose, slowly wipe her mouth, and hold a spoon on her own. She can now raise her left arm a foot off the bed as well as her right and left legs. She is strong enough to push her legs downward against hands held against the bottoms of her feet (the first step in learning how to pivot off a bed into a chair). I have also asked Laxshmi from PT come up on Wednesday or Friday to train Rolina on range of motion massage and movement so we can loosen her joints and muscles. With more progress, we can ask PT to re-evaluate when to restart physical, occupational and speech therapy.

We also went over how to feed Alison (sitting up, 1/2 spoonfuls, double reminders to swallow, honey consistency, NO unthickened water, NO straw). I showed her how to get ginger ale/condiments/butter from the facility’s basement kitchen, the bisque/cheese spreads/yogurts from the nurses’ frig, thickener/ice from the nurses desk, and S&P/cups/spoons from the drawer. We talked about Alison’s pleasure foods. The nursing staff reminded us to when possible have Alison serve herself using a spoon. Alison then fed herself both mashed potatoes and spreadable cheese – slowly and with difficulty and some tears, but she did it!! Ro did a great job assisting Alison with parts of the process, without doing it for her. But Ro is going to feed her soup and thickened drinks for the time being...

In front of Alison, I asked Ro to get Alison in the Geri chair each day for 3-4 hours during each visit. This of course made Alison cry. She petulantly then told me she did not love me and to go away. When asked why, Alison said she was scared she would be in pain or be left in the chair. We then talked to Alison:
• The chair is NOT punishment but pleasure, as a way to get out of her room!!
• Alison needs to spend time in the chair to get stronger
• While we are there to help Alison, Alison needs to take more responsibility to get herself strong
• Ro reminded Alison that, during the last time in the chair, Alison had never gotten into pain because Ro had listen to Alison’s needs and kept adjusting her position in the chair.
Ro and I discussed putting a pillow under Alsion's butt on the chair seat as well as asking for a Tylenol before starting a session in the chair.

Alison just got a piece of mail from Joann and Ted! It's another card about dogs.

REENIE - It may be time to directly call Yolanda who runs nursing. I am still concerned with the BridgePark's consistency of care and communications.
• The staff has been putting Alison in a normal wheelchair (as seen by Ro on Fri and Sat) counter to instructions from PT that she be put in a Geri chair. I told Nursing and then asked PT to have Laxshmi follow up with nursing to get this corrected. This is the second time as I had to do this last visit as well.
• Does the facility have enough Geri chairs? When we asked today for a Geri chair for Alison, they said that all the shared Geri chairs were “being cleaned on the first floor”. BUT PT told me each floor had their own chairs and knew for example that the two Geri chairs on the second floor were broken. And that the chairs were seldom/never cleaned….
• I think that there is still a problem with 4th floor staff not feeding Alison regularly. As I do not yet trust the regularity of any of the stomach peg or pleasure feeding, can we get nursing to tell us the program.
- When I arrived, Alison’s lunch had not been delivered although everyone else was already eating and they were picking up trays. I had to ask to get Alison’s tray delivered off the rolling container on the floor.
- While I was talking to the 4th floor staff, they and I learned that Speech Therapy has stopped. The staff on the 4th floor was surprised that Speech as part of their mid-day treatment was not longer feeding Alison her pleasure lunch.
- Separately, staff had planned to give Alison a peg feeding at 2pm but postponed it since Ro and I were there.
• I have not yet gotten a clear idea if Alison is still crying out at night. I do find out that they give her an evening dose of anti-anxiety meds. Alison’s roommate said it had been quiet at night (but she was sleeping) but Alison said she was still crying out. I asked Alison why she cries out and she said it was either because of pain or that the room was too hot. I have asked the nursing staff to share instructions with night staff to always offer Alison the option of pain meds at 9 o'clock when they give her evening meds. As well they'll see if they can get her roommate to not turn the heat on high. Can we share this with Yolanda too?

Sunday

Alison was asleep in the dark when I arrived at 6:30. Her "food" was sitting on a tray next to her untouched.  I woke her up and she said she was hungry. She could not eat the food they served her and she spit out the meat. I got her food from the fridge. She ate the rest of her lobster bisque and a yogurt. She has requested Whispread cheese, Alouette cheese, more bisque and ginger ale. I've been racking my brain for more food ideas. Suggestions are welcomed!

Alison said she got a full bath and hair wash. She was happy about that. She asked why her physical and speech therapies have been stopped. She was not happy about that. She told me about the nurse Reenie hired. I asked her if she liked her and I got the expected "no". Why? She said she is young. She had nothing else to say about it. I think she is grateful for the extra care.

I told her that a pipe burst in her house but it was discovered in time and nothing was ruined except the wall. She started to think about where else she could live when she gets out. So she has hope despite being sad/mad about where she is. 

She says her roommate is evil/two-faced. 

We laughed a few times. I asked her if she would be interested in some crystal/spiritual healing. She said yes and started to cry. She asked what she did that was so bad to deserve this existence. :(

I told her I would research some crystals and bring her dream catcher to hang over her bed. 

Next week we start our Downton Abbey therapy. I think it will be a nice escape from BridgePark for both of us. 

Steady As She Goes

Reenie - there are several action items included below.

Alison was asleep when I arrived. But she opened her eyes with a smile on her face when I asked her to wake up. She is a little bit sedated (flat affect) as at my last visit. But right now I am not overly concerned. We had good discussions, and she laughed until she cried as I shared stories about a trip to Europe with my dad where I nearly accidentally killed him four times. She does have a wry sense of humor.

I checked in with Lakshmi from PT who shared she talked to Yolanda who runs nursing about Alison’s eating. Yolanda says she has straightened out Alison’s food. Three meals a day are now being delivered to Alison. And Monica, the nurse on the floor, says staff is feeding Alison. Alison is not too sure that this is happening. When fed, she says they force her to eat (not pleasurable). Alison does not think she is getting peg fed daily but is not sure. We need to monitor this closely.

Lakshmi told me that they had completed a course of PT and OT for Alison on March 7. They have not prescribed any more for the time being as Alison does not appear able to make progress on working on assisted transfer from her bed. They will reassess restarting PT and OT in the future, as Alison regains her strength and weight from when she was in the hospital with the high fever. Speech therapy still sees Alison and assists her with one of her feedings. I am having PT remove the wheel chair from Alison’s room as Alison should only be put in a Geri chair (and the old wheel chair is still there). I cannot confirm whether Alison is put in the Geri chair each day. We need to monitor this too.

Reenie is arranging to have on geriatric caregiver come to see Alison 3-4 times a week to assist her with things like moving her arms and her legs to regain range of movement and feeding her. When I shared this with Alison, she cried. I asked why, was it sad or happy? Alison said it was happy! We will share more news is we know the schedule and who will be hired.

Some odds and ends:

Mary Pat went to see Alison last Thursday. It looks like somebody brought in more lobster bisque on Sunday! Alison said Philip saw her yesterday and gave Alison a card from Joanie and Todd. Mary Pat may go visit Thursday.

I brought in more cheese spread (and some other foods that Alison did not like as much - so they are going home). Today we cut fingernails and toenails thanks to Amy telling Alison to have me do it and then Alison remembering to tell me that Amy had asked me to do it! I also brushed her teeth as the staff have only been using a swab stick. Let’s ask Yolanda to make she Alison’s teeth are brushed daily. Be careful, gums are bleeding a bit due to lack of care.

Alison for a second time asked if she was being moved to the rehab place closer to where Alison used to live near Mary Pat.

Sunday

Philip and William arrived to find thick tension in the air. Alison was in the hall in a wheelchair. Apparently, she and her roommate had been fighting and Alison used the N word. Philip was able to mediate and the two reconciled. 

I arrived shortly after that. Alison's dinner was delivered. She ate some of it. I brought lobster bisque and butterscotch pudding. She ate some of that too. Philip and William got Alison in bed. She was complaining of an itch at the base of her spine and demanded that someone scratch it. I don't know if it's a burgeoning sore or a healing one.  Something to keep an eye on. 

She asked me to wash her hair so I did. She says she want to die (overdose). Kill me. 

We talked about her being nice (not using racial slurs) to get what she needs. She said the staff wants her dead. "That may be so but they won't kill you", I said. She seemed disappointed.  Is she trying to incense them as a means to an end??? "So you may as well be sweet so you can get what you need."  I can't believe the conversations we have. I left there feeling so icky this time.

She was happy/surprised to see Philip but her mood was really low. She half smiled/laughed only once. She was exhausted but stayed awake for her hair wash. She was totally coherent. 

She asked if I could come more. I can't. Hopefully Philip made it over again today.  It seems like between Mary Pat, Andy, and me, Alison is getting at least three visits a week that I know of.  

Movements of Mental Acuity

Reenie – look for call Thur from Lakshmi re PT and make sure to ask her about feedings (see below for both).

Alison was asleep when I got there at 11am. She did rouse herself but appeared with flat effect the whole visit. Alison’s roommate told me that yesterday the Dr Pat increased Alison’s meds given her outbursts (here we go again). I at some point asked and heard that they had stopped Ativan and moved to Chloripizan (?sp). Alison is neither mumbling nor sedated with her eyes shut, just not really as there as I am used to.

As Amy posted, they have upgraded Alison’s bed so it is now electronically controlled vs crank. It makes it easier for the repeated cycle of sitting her up to allow her to eat followed by laying her back down because of pain. Her bottom still hurts (? due to skin erosions – I asked them to change her at 11:30 so I could see but this had not been done by 2pm when I left).

I tried to find out what was going on with Alison’s feedings. I now have 6 conflicting data points. Alison and her roommate say that Alison was not given trays OR peg tubes for two days (may not be accurate). Alison later said she really liked the mashed hot dogs they gave her at lunch (when?). Per Lakshmi in PT, they do have periods during the day when patients do not received peg tube feedings, during which they schedule their other appointments like PT/OT/Speech. That means that interruptions in peg feeding are normal. When I got to the floor, Nursing told me Alison was not set up to eat regular tray feedings and that only Speech Therapy gave her food. Just afterwards, Dietary delivered Alison’s lunch… When Speech Therapy came in, Rachael said that she thought the previous Speech Therapist had put Alison on pleasure eating for 3 meals a day – that is what pleasure feeding is (vs some other term that restricts feeding to only Speech Therapy). Rachael said she would check. Lakshmi said she would review Alison case Thur during the weekly review with Nursing, to discuss if Alison is not being given either regular peg or pleasure feeding. My view, there is not sufficient staffing on the 4th floor to have time to feed Alison, given how long it takes (a 7th data point)... Alison says she is now 135 lbs (an 8th).

Regarding PT, Lakshmi is going to contact Reenie Thur about temporarily holding off on PT, until Alison’s ability to benefit from it improves.

I spent most of my time with Alison feeding her butternut squash soup and Aluette cheese (more supplies are still in refrig) and massaging her arms and legs. Next visitor, please bring more lobster bisque (Giant carries it prepackaged near their veggies for $6). Alison appears unwilling to try to do things for herself though I keep encouraging her to squeeze a tennis ball, move her fingers etc. She continues to say she wants to die. The room is noisy (TV on 24 hours a day) and hot. Oh my.

NOW the great info, which I saved for last. Alison is very together about certain things. I asked if she remembered when I was last there. Thursday she said – Correct! I then said that today was Wednesday. She said, "March 5. It is Peter’s bday. I would like to call him." I called his home phone and when the answering machine picked up, Alison waited for the beep and on cue left a complete and lovely message for Peter. When done, she asked to call his cell and remembered the last 7 digits perfectly. So we left another message. Ain’t the brain amazing!!!

Saturday 3/1

When I arrived, Alison was starving and her diaper was rock solid/full like it hadn't been changed in a good 12 hours. Alison said they hadn't fed or changed her all day. It was 4 pm when I got there. What???  I am always a little skeptical and try to give the staff the benefit of the doubt but it looked like what Alison was saying was true and her roommate said it was. I immediately asked for a diaper change and to get Alison's food from the fridge. I fed Alison for an hour!!!!  She finished off the soup, a can of ginger ale, a bunch of cheese, and some yogurt. Still no diaper change. I asked the staff to get me a diaper so I could change it myself. "Oh oh we forgot.  I'll be right in."  They changed her but left her in her gown that was urine soaked but had since dried. I took this off her and draped her with a shirt. Before I left I had taken a new gown off a cart in the hallway and dressed Alison. 

They did bring me towels right away so I could wash Alison's hair. That was a great experience.  It felt really good to Alison and it was relatively easy to do with the inflatable basin I got. 

A disconcerting visit. Alison says she notices a differences in staff attentiveness week days vs weekends. When I asked them when they were going to feed Alison, they said she had declined food just a little while ago. Both Alison and roommate said they hadn't even given her feeding tube all day.  From what I saw, she had clearly been neglected that day. 

The staff knew I was suspicious and angry and made feeble attempts to show interest in Alison. "Oh miss Alison you're hungry now?"  Once I got Alison cleaned and fed, I was going to ask the staff what was going on with her care but they were MIA. I decided to spend my time with Alison instead of hunting down the staff.

Alison's left foot is really swollen.  She is 100% coherent/normal. She said she has bed sores but I inspected her whole body and didn't see anything. I tried repositioning her but could not get her into a comfortable position. She does have some rawness at inner thighs most likely from wet/chafing diaper. Her legs are skinnier than my arms. 

She loves the Giant brand lobster bisque and asked to always have that. 

And she got an electric bed which is a huge improvement !!!