PS Fairy Dust Please for my Mom.

[Gypsy]

The nurse said, "She''s stable."

They haven''t intubated again. She''s still got a face mask on with 40% oxygen. I''m crying in relief. Silly. But true. I''m so happy and so... scared to hope for the same or better news when I call in the morning. She''s restless, and kicking some. And resting some. And NOT INTUBATED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I''m so happy. And so scared. And happy. "Cautious Optomism" is the phrase the nurse used.

Poptart, I am taking care of myself. As much as possible, and I''m feeling better. John is wonderful.

Thank you Wolftress!

Monnie... ''vim and vinegar''... you know, that is such a good way of looking at it. She ISN''T giving up. She''s fighting, and you are absolutely right, it''s a GREAT THING! As for my aunt. My other aunt will be able to communicate with her better, I hope. Otherwise someone else will. Like me. It''ll get done. So far, I''ve asked John not to take her tomorrow, I think she needs a day to get some perspective, and a grip on herself.

Thank you Kim.

I don''t have a fever tonight, so I''m thinking I might go to the hospital tomorrow night. I''ll just wear a mask, and be extra cautious about my hands being sanitized.


Okay... going to turn off the computer now and watch House on DVR. Good night everyone. AND THANK YOU!

 

[Richard Sherwood]

Whew! What a drama.

I feel for all that your going through, and hope that all goes well.

 

[Skippy123]

Good news!!! Hugs sweetie; you are doing so well! Glad your mom is improving; you are right baby steps.

 

[Harleigh]

So glad to hear things are going better...hang in there, hon...we''re all keeping you and your mom in our prayers!

 

[AGBF]

Date: 9/26/2007 12:34:37 AM
Author: Gypsy
The nurse said, ''She''s stable.''

They haven''t intubated again. She''s still got a face mask on with 40% oxygen. I''m crying in relief. Silly. But true. I''m so happy and so... scared to hope for the same or better news when I call in the morning.

Layla, Yesterday''s news was great. I am hoping that when you call this morning you get the news you are hoping for! I am waiting to hear how she is. Hang in there; it sounds as if your mother passed a critical point in her recovery!

Hugs,
Deb

 

[Ellen]

Gypsy, things are definitely sounding positive. I will keep you all in my thoughts, and cross my fingers and toes!



I would cross my eyes for good measure, but then I couldn''t read and post on here, and, well, we can''t have THAT.

 

[hlmr]

So glad to read that things are looking up for your Mom!

 

[Gypsy]

Hello All,

Sorry for the shortness of this note, and thank you all for being so wonderful. I''m in meetings much of the day, so... I am just jotting this off, sorry!

Mom is doing much better physically. Her coughing and gagging and breathing are stable. Great news.

Mentally. I''m hoping those of you with experiences with can advise me, help me. She''s on STRONG anti-psychotics now. Doctors are afraid that she can''t distinguish reality from nightmares right now. She''s terrorized, and out of her mind much of the time. Had a really bad night. The nurse said that they are just watching her, doing their best to keep her calm, and waiting for her mind to right itself. Because it is hard for her, as she was sedated for so much of the time, will be experiencing amnesia from that time, and also reliving nightmares afraid that they are reality.

So that''s worrisome. I''m telling myself: This too shall pass. But I''m frightened. Have any of you been through this part of the ''ride''?

THANK YOU!
Layla

 

[strmrdr]

Date: 9/26/2007 12:46:29 PM
Author: Gypsy

Mentally. I''m hoping those of you with experiences with can advise me, help me. She''s on STRONG anti-psychotics now. Doctors are afraid that she can''t distinguish reality from nightmares right now. She''s terrorized, and out of her mind much of the time. Had a really bad night. The nurse said that they are just watching her, doing their best to keep her calm, and waiting for her mind to right itself. Because it is hard for her, as she was sedated for so much of the time, will be experiencing amnesia from that time, and also reliving nightmares afraid that they are reality.

So that''s worrisome. I''m telling myself: This too shall pass. But I''m frightened. Have any of you been through this part of the ''ride''?

THANK YOU!
Layla

My mom went thru something similar and they found out it was a bad reaction to morphine they were giving her for pain.
They switched meds and it went away in a day or so.
Ask them about switching pain meds too see if it helps.

 

[AmberGretchen]

Oh honey - I just checked up on this thread and I''m glad to hear that health-wise she is improving. I would STRONGLY urge you, if you have serious concerns, to insist that someone talk to you about the psychotic symptoms she is experiencing. Remind them, if necessary, that you are willing to submit a complaint about patient satisfaction, and insist on an answer. Then at least you''ll know that if the only answer they can give you is that its just something that has to run its course, it will be true. And that may be the case - hard to hear, and definitely not ideal, but it may just be all they can tell you at this point.

I''m continuing to send good thoughts from here for you and I''m here if there''s anything else at all I can do to help. Just let me know.

I''m thinking of you and John and your whole family.

 

[wolftress]

Gypsy, the same thing happened to my grandmother when she had to undergo major surgery. She kept saying my aunt (who passed away years ago) was in the same room as well as several other dead relatives and they were all coming to take her away. It was distressing and frightening, but the doctors said she was hallucinating because of the strong painkillers. She gradually became more lucid... and I believe your mother will as well.

All the best sweetie.. I know how scary and heartbreaking it can be.

 

[monarch64]

Gypsy, the psychosis is something that will pass. Dad went through the same thing as you''re describing, he would hallucinate the strangest things...he would ask me why there were black flies all over the room, or that his cat Spooky was in the room with us or hiding behind the wall-mounted t.v., or that someone was trying to kill him (we figured out that it was the male nurse who had to come in and wrestle with him when he was trying to pull tubes/wires out in the middle of the night), etc. There was a therapist (cognitive, I think?) who would come in to work with him and bring puzzles or games to try to gauge where he was at mentally, and he couldn''t do any of them and would become very volatile and throw things. He threw a cup full of urine at my mother once...and that was SO out-of-character for him we knew it was all the drugs and the trauma his system had been through. But gradually things got better, so try not to be too freaked out by your mom''s behavior right now. It''s sort of like being around a person who''s really high on drugs, they hallucinate and say and do crazy things, and you can''t talk them down whatsoever. Technically, they are out of their mind, but remember it is temporary. Big hugs to you!!!

 

[poptart]

My grandma went through this, too, with her surgery. She thought that there were people out to get her, became really afraid when anyone -even her family- walked in the room, kept screaming at the nurses (and my grandma is the sweetest person you would ever care to meet). It was really scary, but it did pass. However, it is difficult to watch. Best wishes! Take care of yourself!

*M*

 

[Skippy123]

Gypsy,
I hope your mom is getting better. How are you? Your mom? Thinking of you

 

[Gypsy]

Thank you everyone for sharing your stories.

I went to see my mom, blessedly with only John in attendance, last night. We got there at 7 so had to wait an hour, Dr. J came to talk to us, and told us that he''d been sitting with her since 3 pm and she was writing to him and communicating with him. He said she stuck to basic things like desires for food, water, and family. We went in to see her at 8:10.

When we got there she was asleep. But she opened her eyes and immediately recognized us, which was really nice, and was eager to communicate.

SO we got some paperr and put it on a stack of other papers that she had written on with the doctor. First thing she did was insist we be very quiet, kept holding her finger up and going Sh with her mouth, in the oxygen mask. We didn''t get what she was trying to say, then the doctor came in and she immediately wrote, "parents" so I talked to her about my grandparents, the doctor left, and she cut me off, and went back to whatever she was saying before. We didn''t notice until we looked back on it, but everytime a nurse or hopital employee she would ask us for water, or lotion, or about the family. The one time they asked us to leave the room she threw a fit and nearly hyperventilated until they let me stay. But when they weren''t in the room, she would go back to trying to tell us something we couldn''t understand-- her hand writing was difficult to understand as we weren''t allowed to remove her mask to help her see the paper, the way the doctor had been when he was talking to her, and she was gettting frustrated adn exhausting herself, and her vitals showed her agitation. Finally we begged her to rest for 10 minutes, promised not to leave, and she shut her eyes while grasping our hands tightly.

While she was resting, I started flipping through the pages she had written on... and saw the following sentance CLEARLY and nearly perfectly written: "You Are Going To Kill me You Bas$$$d." We were shocked. So when, after about 15 minutes she woke we asked her, quietly and with the door as closed as it could get, and privately if she thought the hospital staff and doctors were going to hurt her. She nodded and spoke; "Yes. Don''t leave me." John and I promised her we wouldn''t leave. She relaxed and started to rest, I left her with John, and went to talk to the nurse about her paranoia and the nurse said that it was fairly normal. She went in with me and gave her some medications (it was time for them) that stabalized her mentally, and also made her sleepy. While I was out, Mom had opened her eyes, seen John squeezed his hand when he promised he wouldn''t let anything happen to her... then she made the OK sign with her other hand. We stayed with her until she was in a deep sleep, everytime she woke she would give John the okay sign, squeeze my hand and close one eye in a wink. When I asked Dr.J about the note, he said it wasn''t written to him. But according to the nurse, he was the only one really communicating to her that day. So... not sure who she was writing that to. We didn''t ask her, as we didn''t want to frustrate her if she couldn''t tell us who.

I was afraid to leave her, fearing it wasn''t a delusion and someone was hurting her, but well....

We left when she was in a deep sleep, we left, after trying to negotiate with the ICU staff to let us spend the night in her room (no exceptions). This morning, early AM my step dad went to her. I haven''t spoken to him, but the nurses all said she was calm. I don''t know if that was an act for their benifit and her fears continued inside her.

We are going to see her tomorrow night. I''m hoping that she will be better, more able to talk, and less paranoid. I also am hoping that now that she''s extubated she''ll be leaving ICU for a regular room by Monday at the latest.

I''m feeling much better about our decision to leave her last night, after reading your posts about your family members. I know how hard it was for you, and I applaud your strength for dealing with this with your family members and for posting your experiences so generously to help me.

Storm, Amber, Wolftress, Monarch, Poptart, Skippy... thank you all so much for your commisteration, advice, offers of support and help, and most of all, for your wonderful hearts, that are so generous and giving.

And my thanks for the lurkers, who feel helpless to post, but check in, and send their good thoughts and prayers, and fairy dust.

It''s working guys!!!!! I think it''s working! I''m praying for no more set backs. OH... she sat in a chair for an hour today!!! That''s also progress. THANK YOU for that.

 

[monarch64]

Gyspy, (Layla, can I call you that now?) I''m so glad to read that your mom sat up in a chair today, that is DEFINITE progress! Seriously! Just think, a week ago you all were wondering if that would actually ever happen again, right? So, good news. As far as her notes seemingly regarding Dr. J.....take it a few hours at at time. It may be that she really, really fears him because in her mind she is equating him with all of her pain and discomfort (and that is to expected under the circumstances), or it may be that she is under the influence of all the foreign substances--read, drugs--coursing through her body and brain right now and is hallucinating about who''s a good guy/who''s a bad guy. She KNOWS you and John, and other relatives, and that is a very good thing. When my dad was still totally volatile and confused but had been extubated he still had no idea who the h*ll I was, he only recognized people he had seen every day for the past few years. (I moved away to go to college when I was 18 and when he was freaking out he hadn''t seen me on a reg. basis for about 5 years.)

Everything you''ve posted about your mom''s reactions seems "normal" to me, but keep in mind I''m no expert and have only been through this with my father. I so wish I''d had PS or something back then to relay info and get opinions on. During the time my father was going through a few of his surgeries I got to talk with several other family members who expressed the same concerns as you (and I), it was scary but we were able to get each other through some of the anxieties. It''s just a really tough time, and the hardest part is the unpredictability. No one can tell you what''s going to happen next, and no one can tell you WHEN your loved one is going to get better, or be "normal" again, etc. Not having a timeline is sometimes the toughest thing to a healthy bystander, imo. You certainly shouldn''t just have faith in your loved one''s health care providers that everything will be ok, though, and you have done a great job throughout this issue with your mom in being an advocate. You''re doing everything you can and she will know that at some point when she''s back to herself again. I''m very proud of you Gypsy, you have more inner strength than I think you are even aware of.

Keep getting plenty of rest and eat well, and let John take good care of you, that will help you immensely in the long run throughout this whole ordeal. Stay strong for your mom, she will need it when (yes, WHEN) she comes out of this and goes into therapy to get herself fully restored! You''re doing great, hang in there!!!

 

[strmrdr]

looking up!
Prayers continue

 

[Gypsy]

ARGH!!!!!!!!!!!!!!!!! Lost my post. And it''s bedtime. Monnie, your post was wonderful. You''ve been wonderful and OF COURSE you can call me Layla. Silly. I''m so sorry your Dad had difficulty recognizing you, that must have been very very hard, but I am so glad to hear that your familiy was there for you. I''m so blessed in my PS family and in JOhn. And you are right, about everything. Mom''s note was most likely to Dr.J. And the unpredictability is by far the hardest part. By far. And I don''t trust them 100%, that would be stupid and I would never forgive myself is something happened because I relaxed my vigilance. Thank you for the compliments. It''s so weird, I don''t feel like I''ve been strong. I feel like I''ve been a drama queen, whining and b*tching on here, posting only when it''s convenient for me emotionally, instead of regularly. Plus, I''ve been antagonistic toward JOhn, trying to pick fights (he won''t take the bait). And I''m SO ANGRY. I''m angry at my boss, my mom (she lied to me before the first surgery about the reasons she was going through with it), Frank, my aunts, and my grandmother. And here I am whining again. LOL. Oh, and I feel angry at myself fo making it all about me on here, when it SO isn''t. And you are right that her reaction are probably normal, and will subside. Thank you honey for your insight, for you patience, and for your really supportive and wonderful posts.

Storm, you are such a loyal friend. I can''t thank you enough for that. ((HUGS)).

 

[Po10472]

I''m one of the lurkers..........been reading your posts over the last fortnight and what a rollercoaster ride you''re going thro. You have been very brave and strong and I am so relieved for you that your mum is on the mend. I think everyone who has followed your story on here really feels for you and truly supports you and its a refreshing thought that sharing your problems with ''strangers'' who have possibly gone thro a similar time can provide advice, understanding and hopefully comfort that you may not find with your loved ones at this time.

When I say this I mean it, my thoughts are with you and yours.

po
x

 

[Gypsy]

Date: 9/28/2007 1:59:02 AM
Author: Po10472
I''m one of the lurkers..........been reading your posts over the last fortnight and what a rollercoaster ride you''re going thro. You have been very brave and strong and I am so relieved for you that your mum is on the mend. I think everyone who has followed your story on here really feels for you and truly supports you and its a refreshing thought that sharing your problems with ''strangers'' who have possibly gone thro a similar time can provide advice, understanding and hopefully comfort that you may not find with your loved ones at this time.

When I say this I mean it, my thoughts are with you and yours.

po
x

You post brought tears to my eyes Po10472. You aren''t strangers, you really aren''t. I think that PSers are a special breed, and that they have a special ability to give of themselves to others, whether it''s diamond advice, or a shoulder to cry on. It''s a wonderful family we have, and I''m always amazed by the strength and support of it.

Thank you so much for your thoughts, they warm me. They really do. And thank you for being there for me, when my family, well, can''t. ((HUGS)) and many many thanks.

 

[monarch64]

Date: 9/28/2007 1:58:29 AM
Author: Gypsy
ARGH!!!!!!!!!!!!!!!!! Lost my post. And it's bedtime. Monnie, your post was wonderful. You've been wonderful and OF COURSE you can call me Layla. Silly. I'm so sorry your Dad had difficulty recognizing you, that must have been very very hard, but I am so glad to hear that your familiy was there for you. I'm so blessed in my PS family and in JOhn. And you are right, about everything. Mom's note was most likely to Dr.J. And the unpredictability is by far the hardest part. By far. And I don't trust them 100%, that would be stupid and I would never forgive myself is something happened because I relaxed my vigilance. Thank you for the compliments. It's so weird, I don't feel like I've been strong. I feel like I've been a drama queen, whining and b*tching on here, posting only when it's convenient for me emotionally, instead of regularly. Plus, I've been antagonistic toward JOhn, trying to pick fights (he won't take the bait). And I'm SO ANGRY. I'm angry at my boss, my mom (she lied to me before the first surgery about the reasons she was going through with it), Frank, my aunts, and my grandmother. And here I am whining again. LOL. Oh, and I feel angry at myself fo making it all about me on here, when it SO isn't. And you are right that her reaction are probably normal, and will subside. Thank you honey for your insight, for you patience, and for your really supportive and wonderful posts.

Storm, you are such a loyal friend. I can't thank you enough for that. ((HUGS)).

You know LAYLA, it's occuring to me that you have become the parent in this relationship between you and your mom and THAT in itself is a very very tough thing to do. I don't know your past history with your mom, but I suspect that you haven't played the role of the adult within your relationship until now...much like I had to do with both my parents when they were going through my dad's issues. It's not a fun experience, and from that point when you realize you have a new place it doesn't get any easier until things ease up and get back to somewhat normal. I soooo wish I could reach through the computer and give you a hug and tell you it will all be alright. I wish someone had done that for me...I knit a superlong scarf instead and listened to everyone else's stories while stuck in waiting rooms, I guess. Plenty of Starbucks sojourns, etc., but every tme I saw my poor dad I was beside myself afterwards. I was strong while I was with him, for sure, but afterwards I broke down frequently and just cried about everything. I was VERY angry, angry that my mom hadn't MADE him get something done at the first symptoms, angry with the doctors who seemed so nonchalant about the whole thing, angry with my MOM who was ready to unplug my dad at the first mention of "vegatative" state, etc. Thankfully I had support from my bro and his wife, my wonderful but distant SIL, and my DH. Soooo, you have your John, and I think others who are with you or around, to keep you somewhat sane, and you are your mom's best advocate for sure. She is so blessed to have you, (and I'm not religious at all but I believe that positivity feeds spirit), you've been her "angel." Your mom is sooo going to get through this, she has you and John by her side, so vigilant and so caring, and your stepdad, and all of her relatives, whether they are positive thinkers or not, they care about her.

I'm glad that I have been able to take some of my own experiences and give you some inside knowledge and advice, I really am. There's nothing on Earth I wouldn't do for someone and you've gained my attention with your story and I really feel for you and your mom and family, so glad I could offer a small bit of comfort here and there based on my own past experiences. Anything you need that I could possibly offer, you got it. My best wishes go out to you and your mother at all times, Gypsy.

 

[monarch64]

Layla, I just re-read your post yet again and realized I had barely touched on all subjects. Again, I am not great with posting on sensitive topics and I wish I could sit with you in person and have one of those "normal" conversations with you, there is so much I left out in my last post. Bottom line is, I wish you and your family the absolute best. Take care, get some rest, and just love your family no matter what. I really respect you and am so glad and a better person for having met you here.

 

[Gypsy]

Date: 9/28/2007 2:36:44 AM
Author: monarch64
Layla, I just re-read your post yet again and realized I had barely touched on all subjects. Again, I am not great with posting on sensitive topics and I wish I could sit with you in person and have one of those ''normal'' conversations with you, there is so much I left out in my last post. Bottom line is, I wish you and your family the absolute best. Take care, get some rest, and just love your family no matter what. I really respect you and am so glad and a better person for having met you here.

Honey, the same could be said of my response to you, and more so. I didn''t respond to all you said, not even close... It''s hard. It''s not an easy subject, and it''s close to both of our hearts, too close. I understand that. But what you did post, was already above and beyond . Very much so. I wish it were in person too, but I know that I''m blessed to have met you here. (((HUGE HUGS)))

 

[Harleigh]

Hi there,

I was just following up on some of your posts and though it''s late, I just wanted to let you know that I don''t think any of us on here think that you have made what''s going on with your mom all about you AT ALL... You by far show such grace and strength, through the good times, the bad times, the highs and the lows. You are a wonderful daughter to your mother and a much needed advocate for her when she has no voice of her own.

I am proud of the way you have handled yourself, and I''m glad you know you can come here to vent and share with all of us. I will continue to pray for you and your mom and I hope she gets stronger every day and that your life will return to some sense of normalcy one day soon.

Sending hugs and well wishes your way...

 

[strmrdr]

**hugs**
Iv been there and my friends got an earful too.
Chin up, your handling it as well as anyone can.

 

[Skippy123]

Oh Gypsy, I am glad your mom is improving.

 

[Lorelei]

So glad things have taken a turn for the better Layla

 

[jas]

Oh Layla, it''s been, as someone put it, a rollercoaster for you. Vent away, give yourself permission not to be perfect, give yourself permission to be exhausted. It''s been a h*** of a year for you.

I can only join the countless others in sending love and best wishes and strength.

Jackie

 

[Ellen]

Date: 9/28/2007 1:58:29 AM
Author: Gypsy
ARGH!!!!!!!!!!!!!!!!! Lost my post. And it''s bedtime. Monnie, your post was wonderful. You''ve been wonderful and OF COURSE you can call me Layla. Silly. I''m so sorry your Dad had difficulty recognizing you, that must have been very very hard, but I am so glad to hear that your familiy was there for you. I''m so blessed in my PS family and in JOhn. And you are right, about everything. Mom''s note was most likely to Dr.J. And the unpredictability is by far the hardest part. By far. And I don''t trust them 100%, that would be stupid and I would never forgive myself is something happened because I relaxed my vigilance. Thank you for the compliments. It''s so weird, I don''t feel like I''ve been strong. I feel like I''ve been a drama queen, whining and b*tching on here, posting only when it''s convenient for me emotionally, instead of regularly. Plus, I''ve been antagonistic toward JOhn, trying to pick fights (he won''t take the bait). And I''m SO ANGRY. I''m angry at my boss, my mom (she lied to me before the first surgery about the reasons she was going through with it), Frank, my aunts, and my grandmother. And here I am whining again. LOL. Oh, and I feel angry at myself fo making it all about me on here, when it SO isn''t. And you are right that her reaction are probably normal, and will subside. Thank you honey for your insight, for you patience, and for your really supportive and wonderful posts.

Storm, you are such a loyal friend. I can''t thank you enough for that. ((HUGS)).

Gypsy, I personally think all these feelings are normal, and to be expected. Monarch''s right, you have basically become the parent, the one in charge. You''ve had to do this, because others have not been able to.

I would be more concerned if you weren''t feeling any of these things. By doing so, you are simply indicating that you care deeply about your mother and her health. As Monarch also indicated, this is an overwhelming, emotion filled position to be in. Unless someone has experienced this type of situation, they just can''t grasp the enormousness of it. All our lives, our parent have been there. The ones in charge, the ones we go to for important decisions we feel we can''t, or don''t want to, make on our own. They are our anchors.

When they become very ill, the tables totally turn. They are now the fragile, helpless ones, and we are the ones in charge, who have to make decisions about their health and care, which are sometimes incredibly hard and thought provoking. Our "world" gets turned upside down. It''s terribly stressful and draining. You love them, you want only the best, but yet you can be constantly challenged between them taking turns for the worse (or even worse, up and down), and dealing with doctors who really should have gone into some other position. (not ALL doctors) It''s enough to make anybody snap.

So my dear, don''t beat yourself up, you are human. And while yes, this is about your mom and her situation, it IS also about you, as YOU are the one dealing with everything.

And YOU are doing the absolute best you can, which btw, is an absolute awesome job if I do say so myself.

*thoughts continue*

 

[Kaleigh]

So glad your Mom was able to sit up in a chair Layla. Everyone is right, you have done a great job handeling what is a very tough situation and have done so with great courage. John has been awesome too. Keeping all of you in my prayers.