I was there today too....

Alison was asleep most of the time. She would sometimes wake up when I asked her questions and sometimes she would respond but I could not understand her. She seemed different today...almost like she was mad or had a chip on her shoulder but was too tired to act on it. 

I massaged her arms and legs..no response. She said she could move her legs but wouldn't do it for me. 

No Change

“I walked. I really did.” Such is Alison’s current reality. During yesterday’s visit, Alison was in and out of sleep. She mumbles words that cannot be understood and that make no sense. She did wake up when I asked her to, that I had only an hour left and really wanted to spend time with her. But I did not find the alert, funny Alison today.

Alison had eaten breakfast (with nurse assistance) but refused lunch. I gave her half a can of boost chocolate pudding. I will bring tasty soft food when I can. Plus I brought up butter pats from the cafeteria for the nurses to add to her dinner potatoes.

I heard that Alison’s arm veins are bad and cannot take an IV. There is another type of arm IV that they cannot do as she may pull it out. But Alison is getting enough fluids. Her weight today is 161. She has only lost 4 pounds in the last 10 days of limited eating.

The nurses decided to not give Alison Depakote last night or this morning, to keep her from getting too sedated and not eat. The Zyprexa dosage has been reduced a bit (10 to 7.5).

As closing, here are examples of her current confusion: “My bread hurts”. Closest we could figure out was it was her bottom, after playing show and tell. She also keeps wanting to go back to her old room. Not sure where that room is.

Please take the time to visit Alison. The objective is to take care of her, not to converse with her – massage and food. After massaging and stretching her left arm, she can do very slight movement of it.

Still sleeping

Claudette visited yesterday. Alison was sleeping. Apparently, she had been up the whole previous night. 

More Sleeping

Alison is sleeping beauty again this morning. It turns out that she tends to be more awake in the evenings. Then they give her her evening Meds. They don't do it in the mornings because she is too sleepy.

They are trying to feed Alison thick foods. But when she is too sleepy, they do not feed her. In the evening, she gets about 10 bites in and then gets upset with the hospital food. In her sleepy state, she just heard me dicating this to Siri and said "it sucks". I was told by a PA that they have decided not to move forward on any feeding assistant devices or treatments until Reenie gets guardianship. HELP!

I also heard that they were titrating back some of Alison's medications to try and control the situation. But this needs to be confirmed. During Amy's visits this weekend and mine today Alison still appears confused and sedated.

Allison is back to using the words Oww and Help. But she is again unable to vocalize what is in pain because she is too asleep. Her eyelids were closed the whole time. When I asked for her to open them, she did for a blink and then shut them again. It feels like we are back to the confused stay she was in when she was first a South River.

Today I massaged her left hand which is very swollen with edema from lack of movement. And I raised it up on a pillow to reduce the swelling. For the first time, they have her calfs in pressure cuffs to assist with any edema there.

While it is depressing, Alison repeats words that I am saying as I dictate this note to Siri. So she says things like Edema and mashed potatoes, just after I have said them. It feels like she has an immediate cognitive loop. So before I leave, I am repeating to her the words love, love, love. I hope that word sticks in her brain for a while.

Friday and Saturday

Alison could barely keep her eyes open and I couldn't understand what she was saying..both times. She was in her chair.

The nurse said she still calls out but they seem to think the longer she sits in her chair during the day, the better she sleeps at night. 

She is not eating well. The nurse has to coax her to eat and this makes Alison mad. 

Pre-Thanksving Visit

Wednesday (before Thanksgiving, sorry)

It was a busy am for Alison. She had a bath and was in the chair. While not as awake as last visit, she greeted me with joy. They have started to give her all her meds, including the ones that cannot be crushed.

While she was somewhat awake, she was anxious and a bit confused. While I was there, I talked both with a woman from palliative care and with the speech therapist who had done another evaluation that am. It turns out the barium test shows that Alison is not always aware when liquid goes into her lungs. They do not know if it is the medications or something else. Alison can manage thicker foods like pudding but not things like honey or water. So they have her on IV fluids with simple nutrition. They are in touch with Reenie about whether to go back to a stomach peg, use a temporary nostril feeding tube that has the risk of being pulled out, or stick with thickened foods. Or they can use some combination.

Alison does not want a stomach peg as I think she sees it as permanent and keeps her from eating anything. She really wants to start eating again as it is part of her joy with life. She talked to me about all the foods she wants – also hard as she knows that tomorrow is Thanksgiving! Reenie will address the followeing questions when she talks to the hospital: Is there a mix of nutritional solutions eg limited foods and feeding assistance? What is causing this as she was eating prior to the recent medication? Is the condition temporary? I have not yet heard the decision…..

Also, just for your enjoyment, I nearly threw Alison on the floor. She was in her chair and asked to sit up. In moving the chair, Alison nearly slipped off onto the floor. She yelled HELP while I held her in the chair until we got her chair reclined with the help of a nurse. Oh my.

"No More Monkeys Jumping on the Bed"

Sunday night:

Alison was awake and alert. What a difference. I tried to explain that we have been concerned about her meds and that Reenie was looking into it. I said I wasn't sure what the doctor said. Alison said "No more monkeys jumping on the bed".  Haha. 

Although she was talking, funny, had just watched the Patriots game, wanted/did talk to Philip, she had lots of moments of nonsensical talk...mean team of nurses, needs to get in the hallway, help me get out of bed, where are you staying?,etc.

With more clarity though, she was able to tell me that she can't swallow and that she didn't want to do the swallow test because she wouldn't be able to do it. And that she wants to do PT so she can walk again. 

A good visit overall.

Fast forward to Monday. Mary Pat was going to visit. I couldn't wait to hear her reaction to seeing the new (old) Alison.  I was surprised and saddened to hear that Mary Pat said Alison was worse than the last time she saw her. In the almost 3 hours she was there, Alison could not wake up except to mumble "Help me!" periodically.