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.
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Friday, November 29, 2013
Tuesday, November 26, 2013
"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.
Saturday, November 23, 2013
Sleeping Beauty is AWAKE!
When I came in this am, Alison was wide awake, cognitive and had some (limited) physical movement! She had not taken ANY meds since yesterday am. So she was not sedated today. They did say that Alison did not sleep last night and was “calling out as normal”. This am’s calling out (before I got there) was not in confusion but more wanting attention.
Yesterday, Alison had failed a swallow test during a speech therapy evaluation given problems Alison was having with swallowing. So they had stopped all food and liquid, including meds. So the last time she had had Depakote or Zyprex was yesterday am. Today, I watched a second swallow evaluation by speech therapy. Alison was successful in eating apple and thickened apple juice (but not straight water). But, while she can swallow, some fluids do stay in her throat, causing her to have to clear her throat. Given this, tomorrow they are going to have her do a barium swallow test to confirm she is able to swallow. So no food or liquid by mouth until she passes that test. In the meantime they are giving her IV fluids. When she does get cleared, the speech therapist said to NOT use a straw as the liquids go to the back of the throat, increasing the chances of swallowing wrong. Plus we are asked if she is talking with a wet or gurgling voice to encourage Alison to clear her throat.
I gave the speech therapist Alison’s recent eating and medication history. Previous to three weeks ago, Alison was eating solid foods and fluids with no problems (and feeding herself). About three weeks ago, when they had started the anti psychotic meds, she faced increasing difficulties. Five days ago, I saw her choke on water – at the point when they had just increased her Depakote and Zyprexa medication levels.
Reenie/Jimmy – can you also formally raise the following with the doctor when you talk to him/her? With the nurse and Speech therapist there, I asked them both to set up a plan where Alison is not caught in a Catch 22. When they allow her to start eating, they will restart her medications, causing her to become too sedated to swallow.
Later in the visit, given a slight increase in blood pressure, Alison was restarted on her medications – crushed and mixed with apple sauce. They did not give her Depakote since can't be crushed. I asked them to skip the am dose of Zyprexa until tonight. Hopefully with the Zyprexa, she will sleep tonight. But tomorrow?
It was a delight to spend TWO HOURS with her where we could converse and talk about her state of affairs. We called and talked with Reenie and Alison also face-timed with Amy. Alison made jokes with and faces at Amy's kids. She asked to see Stella and talked to Stella for a while. She told me Phil had come to visit yesterday and looks forward to seeing him again (today?). Alison could move her right arm and toes and has a little movement in her left arm although hurts due to edema due to lack of movement. I (slowly) massaged all her extremities and (gently) stretched her joints. When she is awake, she is good at giving feedback when it is too much. Afterward, Alison had greater range of motion in her right arm and can begin to grasp ever so slightly with her left arm. And she can raise her feet off the bed. Alison asked to have put up again her signs as well as the pictures in her room. “Grow Strong”, “You are Loved” and something like Be Quiet and Relax. So everyone who visits please also massage and strech her limbs. Don't worry, Alison does not break.
Alison and I made for a video of her for everyone but it cannot be uploaded to the blog. I am sending it out via email to Amy and Reenie and will ask them to forward it on (or email me if you'd like a copy ariedy@cox.net).
Reenie will be out for a visit Dec 15-18 when she will hopefully win legal control over Alison’s situation. Looking forward to it!!
Yesterday, Alison had failed a swallow test during a speech therapy evaluation given problems Alison was having with swallowing. So they had stopped all food and liquid, including meds. So the last time she had had Depakote or Zyprex was yesterday am. Today, I watched a second swallow evaluation by speech therapy. Alison was successful in eating apple and thickened apple juice (but not straight water). But, while she can swallow, some fluids do stay in her throat, causing her to have to clear her throat. Given this, tomorrow they are going to have her do a barium swallow test to confirm she is able to swallow. So no food or liquid by mouth until she passes that test. In the meantime they are giving her IV fluids. When she does get cleared, the speech therapist said to NOT use a straw as the liquids go to the back of the throat, increasing the chances of swallowing wrong. Plus we are asked if she is talking with a wet or gurgling voice to encourage Alison to clear her throat.
I gave the speech therapist Alison’s recent eating and medication history. Previous to three weeks ago, Alison was eating solid foods and fluids with no problems (and feeding herself). About three weeks ago, when they had started the anti psychotic meds, she faced increasing difficulties. Five days ago, I saw her choke on water – at the point when they had just increased her Depakote and Zyprexa medication levels.
Reenie/Jimmy – can you also formally raise the following with the doctor when you talk to him/her? With the nurse and Speech therapist there, I asked them both to set up a plan where Alison is not caught in a Catch 22. When they allow her to start eating, they will restart her medications, causing her to become too sedated to swallow.
Later in the visit, given a slight increase in blood pressure, Alison was restarted on her medications – crushed and mixed with apple sauce. They did not give her Depakote since can't be crushed. I asked them to skip the am dose of Zyprexa until tonight. Hopefully with the Zyprexa, she will sleep tonight. But tomorrow?
It was a delight to spend TWO HOURS with her where we could converse and talk about her state of affairs. We called and talked with Reenie and Alison also face-timed with Amy. Alison made jokes with and faces at Amy's kids. She asked to see Stella and talked to Stella for a while. She told me Phil had come to visit yesterday and looks forward to seeing him again (today?). Alison could move her right arm and toes and has a little movement in her left arm although hurts due to edema due to lack of movement. I (slowly) massaged all her extremities and (gently) stretched her joints. When she is awake, she is good at giving feedback when it is too much. Afterward, Alison had greater range of motion in her right arm and can begin to grasp ever so slightly with her left arm. And she can raise her feet off the bed. Alison asked to have put up again her signs as well as the pictures in her room. “Grow Strong”, “You are Loved” and something like Be Quiet and Relax. So everyone who visits please also massage and strech her limbs. Don't worry, Alison does not break.
Alison and I made for a video of her for everyone but it cannot be uploaded to the blog. I am sending it out via email to Amy and Reenie and will ask them to forward it on (or email me if you'd like a copy ariedy@cox.net).
Reenie will be out for a visit Dec 15-18 when she will hopefully win legal control over Alison’s situation. Looking forward to it!!
Wednesday, November 20, 2013
Mary Pat Visited Yesterday
She says she is "stunned" by Alison's decline since she last saw her a few weeks ago. Wonders if she has had another stroke and/or more seizures or if it is the medicine she is on.
Reenie is scheduled to speak to the doctor today regarding Alison's medicine.
I decided to NOT post video of Alison out of respect for her privacy.
Monday, November 18, 2013
15 Minutes of Alison
"Hi bobo, Merry Christmas". That is how Alison greeted me at today's visit! She was cognizant, with a sense of humor! She had just been moved to a chair and had taken her meds. She knows she has been out of it, maybe because of what Amy told her last visit. I told her she was getting used to the meds and will be able to do more each day. She is only able to move her right arm slightly (no left arm or legs). We used her breathing exercise devices once but only achieved only modest levels. She shared she had arm and leg bodies pains, perhaps from lack of movement? So I massaged and stretched her limbs.
We were able to talk about 15 minutes but then she drifted back toward sleep. At that point, Alison began to mutter and started crying out again for help. But now she is too medicated or weak to yell loudly.. “Mommy help.” “Can't do anything right.” “…back to normal.” “Be the same.” “Help me.” Can't come to your house?”
From the nurse I learned that Alison had slept all night but that she was very agitated yesterday. The doctor has been monitoring the levels of medication in her blood. Alison has not attained the desired level of Depakote or Zeprexa as she may be metabolizing the meds faster. Today they decided to increase the dosage of these two meds. When I first arrived, they had just given her the higher dosage of Depakote but not the Zeprexa yet. And then she fell asleep. I talked with the PA about the trade-off between the levels of medication vs Alison’s inability to be cognitive or move. How long do the meds take to be effective and lose their sleepiness affect? Is there a way to differentiate between day and night time levels?
Also as FYI, Alison still has congestion in her chest. They are having her use the breathing exercise devices every 4 hours but it is hard when she is so sleepy. A couple of times, when she was drinking water, she ended up choking on the water (does she forget to finish swallowing?).
We were able to talk about 15 minutes but then she drifted back toward sleep. At that point, Alison began to mutter and started crying out again for help. But now she is too medicated or weak to yell loudly.. “Mommy help.” “Can't do anything right.” “…back to normal.” “Be the same.” “Help me.” Can't come to your house?”
From the nurse I learned that Alison had slept all night but that she was very agitated yesterday. The doctor has been monitoring the levels of medication in her blood. Alison has not attained the desired level of Depakote or Zeprexa as she may be metabolizing the meds faster. Today they decided to increase the dosage of these two meds. When I first arrived, they had just given her the higher dosage of Depakote but not the Zeprexa yet. And then she fell asleep. I talked with the PA about the trade-off between the levels of medication vs Alison’s inability to be cognitive or move. How long do the meds take to be effective and lose their sleepiness affect? Is there a way to differentiate between day and night time levels?
Also as FYI, Alison still has congestion in her chest. They are having her use the breathing exercise devices every 4 hours but it is hard when she is so sleepy. A couple of times, when she was drinking water, she ended up choking on the water (does she forget to finish swallowing?).
Saturday, November 16, 2013
Finally Awake!!!
I had Aaron go by the hospital today at 4. Alison was asleep. We went back at 8pm and found her awake! Finally! It's been a week since I've had this much interaction with her.
- I can't move my legs. At all. I can barely move.
- Throw my trash away. Stop f***ing with me.
- You have the list in case I go somewhere? Reenie, my brother in law, peter. Off the face of this earth..
- They are moving me soon.
- Do I look like I've lost weight? How much? A lot?
- call Reenie.
- Do you promise you'll come tomorrow?
These are just a few of the things she said to me. Her speech is difficult to understand. And she got very frustrated when I couldn't get it. Her thoughts seemed pretty clear though. She is sad about her situation...really upset about her lack of movement.
Aaron told her a joke. She didn't laugh but she got it. Her sense of humor is somewhat lacking but her sarcasm (with Aaron at least) was intact.
She has a pained (contorted) look on her face and was yelling out a little but was calm for the most part. She cried when I told her Andy had visited. She didn't know because she had been sleeping. She said, "She looks out for me".
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