An Improvement

Yesterday, Alison was asleep. I didn't stay. 

This evening she was lying in the dark but was wide awake and beckoning me through the window to come in.  The first thing she asked was if she could come live with me. I tried to explain that I couldn't care for her. She said they don't care for her at the hospital. She was very talkative. I would say I could understand about 75% of what she was saying. She was equable and very matter of fact..and neither happy nor sad. 

She was plotting to get out of her bed. She wants to roll out. "You can help me". She is all about getting out of there. She does not have any strong opinions about the staff.

She was complaining of thirst just as the nurse arrived with dinner.  I fed her but she did not eat that much. No more than ten bites. The nurse told me Alison is not to use a straw for drinking as she could choke.  

The nurse also told me every visitor is to check in with a nurse before entering Alison's room.  There is a sign on the door that I never heeded and they never enforced..until tonight.  There is also a sign saying to put on gown and gloves before entering. They had told Reenie that it wasn't necessary but made Philip and Kathie wear it just the other night. I wear it because I'm a little paranoid.  So I'm not sure what is really the proper protocol.  I'll just do whatever the signs say from now on so I don't get scolded and/or infected:)

But back to Alison...

I found her stress ball that was wrapped up in her sheets when she was transported to the hospital from South River. She wanted it and was squeezing it. And then she said (totally deadpan) "Remember when the nurse found this in my bed and asked if it was mine? That was hilarious."  I thought that was so great that she remembered that and that she was able to say it so clearly. 

Andy, Alison's nails are calling you!!! :)

Best visit in a really long time. 

Thursday

Philip and Kathie visited. 

And they said Christina had been there earlier. 

Merry Christmas

Alison seemed no better today than she was prior to Reenie's visit, except that I was able to wake her up. Her response to my "Merry Christmas" was "What's the point?".  She said she's ready to go home and wanted to go out for breakfast (I think). I couldn't understand much of anything else she said. 

The staff would not tell me anything other than she was "good".  She seemed drugged and was not in good spirits but she was not yelling. 

Two Visits

Both times, she was asleep but I was able to rouse her. She was very low key but content. She is difficult to understand but is talkative. She requested a chocolate milkshake. She did start yelling for the nurse because she wanted something. I could not figure out what it was. 

Claudette had stopped by a few weeks ago and delivered a fruit basket. I never saw it and none of the staff mentioned it. Andy, do you know anything about it?  I know Alison couldn't eat any of it but it would have been nice if Alison had known Claudette had brought it. 

Alert both times! A marked improvement, I think. 

Update From Reenie

From Wednesday, Dec. 18

Alison was the most alert today that she's been this week since I've been here. I saw the doctor this morning and he said that he will start cutting back the Depakote as well as the Zyprexa that has already been reduced (and will continue to be reduced still further). He will also reduce the Wellbutrin (anti-depressant).

Christina, her mother, and baby Deklan (sp?) visited this morning.
Christina is here until Dec. 30 and hopes to visit every few days while she is here. It was a good visit but Alison often struggled to find the right words for what she wanted to say. She knew the words weren't right (although often they were close). Sometimes we could guess what she wanted to say, other times not.

By later in the day, Alison's communication was much clearer. She talked with the nurse about our family's role with the Littman stethoscope and her language was clear and coherent. We talked about a number of things and her words were coming much easier to her. She raised topics herself (like what time did I need to leave for the airport on Thursday).

By the way, she wasn't mumbling at all. Even when she couldn't find the right words, she was speaking clearly, even though not always understandable. I often felt like we were playing charades--I was trying to figure out what the word was, whether it sounded like what she was saying.

Sometimes the word is probably close in meaning, but still hard to figure out. Last night she kept asking for a "curtain". Finally, I saw what she was pointing at--the paper towel dispenser with a paper towel hanging down. It did resemble a curtain. She wanted the paper towel to wipe her mouth. (When I go in tomorrow, I will ask her to identify the paper towel and see if she now uses the right word.)

Oh, and I did get legal guardianship today. And I visited the bank to get the financial stuff rolling, and talked with accountants at Communicare (South River is part of that network of facilities). They are handling her application for long-term medical assistance.

There are signs in Alison's room now saying No Intubation, and No Chest Compressions. This is what we put into place last week. If you have questions, please let me know.

Finally, I am going to see if i can get a complete history of her medications while at Anne Arundel. They wouldn't even talk to me before I had the legal guardianship. Maybe now I can get somewhere.

please feel free to put relevant stuff on the Blog (not sensitive details)

Alison does have visitors from time to time. I think it would be good to have them email or text Andy at ariedy@cox.net (or in Mary Pat's case, call you) or whatever to let you know about the visit, so their visits can be included on the blog. Even if they only provide a sentence or two about their visit with Alison, this would be good information to have. It will help make a more complete running record.

And more frequent videos will be helpful. Just so we have a record, More soon, Love, Reenie

Reenie Visit and Request

I went to see Alison (and Reenie) today. Alison had eaten breakfast on her own but was asleep by the time I arrived. So Reenie and I got a chance to catch up. Reenie had long discussions yesterday with hospital staff and doctors. She and Jimmy are asking for selected Alison's meds to be titrated back to see how her cognition, swallowing, and physical movement improve.

Tomorrow is a big day. Reenie goes in front of the court to take over legal guardianship. With this, Reenie can restart the proceedings to get Alison covered under long term disability insurance. We will wait to see whether this improves Alison's placement in a rehab facility.

I need HELP. With the holidays, kids home from school, two family xmases etc, I will not be able to do my regular visits between now and the end of the year. Can others step in to visit Alison more often during this holiday season? Maybe text Amy when you are going in so she can coordinate visitors c 410-212-6707. Also send us notes from your visits that we can post to the blog on your behalf (ariedy@cox.net and amyprincipe@gmail.com.

I left Alison a Christmas carol CD so play it when you go! Happy holidays!

Alison Pic from 12/13

Alison wishes all her friends GOOD CHEER!

Any Improvement Is Good

We had a good start to the morning. As I got to the unit, I heard her calling out, using a loud voice. That means she is awake, stronger and more with it. She was still in bed and had eaten breakfast. She is also moving her right arm and feet again, though not with vigor.

We Talked about Reenie's arrival in two days. We to alked about Xmas and she said she had to do shopping. I told her not to worry this year. It made her smile. We took the following picture to send Xmas cheer to friends.

The Nurse gave her Meds while I gave her Choc mousse to wash it down. Alison ended up swallowing the wrong way (again). It to took her awhile to relax.

After an hour, the meds kicked in and Alison became tired. She started mumbling again in between clarity. I ended up massaging her while her cd plays. We ended with quiet and calm.

She remembers Phil and Mary Pat visited yesterday. The only specifics she could share was how nice it was to have MP sit beside Alison while Alison dozed.

No Change (Again)

Today was another visit of cConfused mumbling from Alison, but it is always with intent. She did at one poibnt make me smile with "You can spend the night if you want".

Alison's body apprears to be stiffening up - it is hard to massage and stretch her limbs without causing pain. She looks at me deeply injured, then nods her head for me to continue.

I fed Alison half her lunch and some home made beef stew I had put through a food processor. She still has some swallowing problems despite the thick, smooth consistency of foods. Later, Alison forgot she had eaten so I was able to feed her a few more bites.

Today she is picky about which channel she is watching on TV. Suited talking heads on news shows do not make the grade.

Reenie is here in 6 days!

Sunday

Today Alison was awake!!!!  And sitting in her chair. She kept blowing me kisses. She seemed like a young child. She reminded me of my cousin who has Downs and who is just the embodiment of love. 

I had a really hard time understanding her. Her eyes were half mast and her words were garbled. And she speaks in fragments so you're not quite sure where she is going with her thoughts. She insisted that I take her blanket home with me. I kept saying "no, it's yours".  I finally said fine, I'll take it home but she told me I was pissing her off anyway. 

I try to make small talk with her but sometimes it goes awry. For example, I was talking about the cold weather and then about the mice that were in her house last year. She started freaking out. "I can't see the mouse. Where is it ? Get it. I can't find it !!!!"  Subject change!!!

She asked me what the dogs were doing.  And if I could call him..never figured out who him is. Wished me Merry Christmas. 

She seems neither happy nor sad. She is just there. She did yell out once (owwww) while I was there. Her aide said she was speaking in a British accent this morning so she must have been way more alert and animated earlier in the day. 

So glad she was awake this time and that I finally was able to really visit with her.  It makes her sad when she hears that she slept through a visit from someone. 

Can't wait for a new batch of visitors to come...Reenie and Christina..and liven things up for Alison!!!

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.