Has anyone or a family member experienced delirium?

Posted by Marield65. Marie @marield65, Jul 12, 2017

Has anyone gotten delirium after surgery? Or has a caretaker cared for someone who had this?

Interested in more discussions like this? Go to the Intensive Care (ICU) group.

Hi, @marield65, and welcome to Connect. Fellow members @jc2buds , @incrediblemulk98, @rosemarya, and @lupedelarosa12 have talked about post-surgical delirium. You may be interested in reading more about their experiences in this discussion:
– Post-Intensive Care Syndrome (PICS) – Let’s talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

Marie, can you tell us a bit more about your situation. Did you or a loved one experience delirium after surgery? What was the surgery? Was the patient in ICU? We look forward to getting to know more.

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@marield65, I would like to extend my welcome to you. I am happy that Colleen has brought me into this discussion. I can assure you that you are not alone asking this question or dealing with this concern. I will be happy to share whatever I have gained from my experience. I did experience some memory lapses after surgery. And it was frightening and confusing for me. Fortunately I had my husband at my side, so I was not really fearful in the physical sense.
I am looking forward to hearing from you.
Rosemary

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I am happy that I can connect with other people who have had this because I don’t know anyone who has had this. No one in my family has had it but I have 9 in my family, not, including my mom and dad and we all have suffered from depression, anxiety and a disjointed family.
I am the only one who had this but I am the most sensitive one in my family, but also the most outgoing one and I still have a lot of confidence. I have to be confident to have gone through many bad situations.
But I am here to talk about the delirium.
I had a back surgery done in December of 2016 (one of 5 back surgeries,), so I wasn’t anxious about it. But I felt different when I woke up. I felt more belligerent, didn’t want to go home the 2nd day so when the physical therapist came in to see how I was with a walker I walked into the door with it on purpose and she said I had to stay another night. I don’t know why I did this, I have a wonderful husband, children and home. I think I was just mad because I had so many surgeries, I really don’t know.

So when April of 2018 came and my knee would buckle on me and I had already had arthroscopic surgery on the knee, and that was not successful, the Doctor said I needed a knee replacement. I was in denial,didn’t think I needed it because I didn’t have much pain, but went ahead with it to get it over with.

Wei travel a lot and just wanted to get it out of the way. So when I woke up from the knee surgery, I thought I was smart and whenever the nurse asked me what level of pain I was in i would always say a 10. So they gave me DiLaudid, and they eventually figured out after a while that I was going into hyper delirium and took all my meds away until I started coming out of it a few days later. But they had a Geriatric Doctor Come in and explained to my family that I might be in it several days, weeks or months because they were not sure how it happened.

While I was in that state, I was very happy when I had company, upbeat talking to my husband but didn’t make sense when I was talking to them. I don’t remember any of this. I was in another place in my head. I was at a friends house. I was at a train station with a nurse and wouldn’t go home until I saw my grandchildren. The nurse kept telling me that they were home, I didn’t believe her. This went on and on and all the while back in the hospital ( which I never left) i kept trying to get out of bed. I finally made it out of bed and the nurse caught me and said my name, startled me, and I Fell on my knees. The doctor came and they had to take X-rays to make sure I was ok.

The nurse was going to tie me to the bed, which is what you are not supposed to do to a person with delirium. My husband told them that he doesn’t want them to do that so They had to have a nurse with me all the time. I told the nurse she didn’t have to be with me and I would behave. But she wouldn’t leave.

I also tricked the nurse to call my husband 3 in the morning because I wanted him to come and get me so when she called him I started to scream out help. To come and get me, until I fInally got to talk to him and he said to be good, go to sleep and he will come as soon as he could. I thought he was conspiring with me and I went along with him and thought we put one over on the nurse.

I was always sitting at the nurses station because I didn’t behave and one time they gave me color books and crayons, and another time the doctor gave me some towels to fold. I thought I was so important.

Never thought about what I was doing to my family.

By the 5th day I was coming out of it and. Went to a rehab hospital as we planned. It took another 2 days for me to feel like myself
Now I might have to go in for another back surgery and I am so scared but I have read everything I could to help prevent it from getting out of hand. No one can know if I can get it again but I am learning everything I can and hopefully on this site I will be able to learn more.

Thank you for listening and although it was upsetting to write about it, it also felt good that I am not alone and maybe we can enlighten the medical team about the fact that it happens more often than they know because a lot of them do not know what to look for in a person who has delirium because it is also a quiet disease and a lot of them are not taught about it. Therefore they don’t know what to look for. They think it is dementia or Alzheimer’s.

There is hypo delirium and hyper delirium. I will leave that for next time. I am watching and waiting for feedback on this from you. Thank you for reading this.

Marie

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@rosemarya

@marield65, I would like to extend my welcome to you. I am happy that Colleen has brought me into this discussion. I can assure you that you are not alone asking this question or dealing with this concern. I will be happy to share whatever I have gained from my experience. I did experience some memory lapses after surgery. And it was frightening and confusing for me. Fortunately I had my husband at my side, so I was not really fearful in the physical sense.
I am looking forward to hearing from you.
Rosemary

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Rosemary, read my article, posted by marield65, and reply . I would love it if you would share your story also.

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@marield65, I have read your reply. I am sorry for the difficulties you have dealt with. I know this has been a struggle to experience and even now to remember. I think that your experience and my experience are quite different. I suffered gaps in memory, and had a difficult time putting it all together in my mind. Even today, 8 years after my events, it is unsettling to revisit. I think that you understand what I am talking about because I read where you mentioned that writing your episode was unsettling for you. I am happy to have had the opportunity to read your thoughts. Thank you for sharing and allowing mw to be a small part of your healing.
I am going to respectfully decline your invitation to recall my memories here. Much of it is already in the Post Intensive Care discussion that Colleen gave you. I hope you understand.
I believe you are not alone.
Hugs, Rosemary

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@rosemarya

@marield65, I would like to extend my welcome to you. I am happy that Colleen has brought me into this discussion. I can assure you that you are not alone asking this question or dealing with this concern. I will be happy to share whatever I have gained from my experience. I did experience some memory lapses after surgery. And it was frightening and confusing for me. Fortunately I had my husband at my side, so I was not really fearful in the physical sense.
I am looking forward to hearing from you.
Rosemary

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Rosemary, thank you for emailing me and taking an interest. I wish you all the best.
Marie

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I would like to connect with caregivers or family and people who know anything about delirium in the hospital.
Hopefully Marield65

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@marield65

I would like to connect with caregivers or family and people who know anything about delirium in the hospital.
Hopefully Marield65

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Hi Marie,
To connect with others talking about delirium, please join this discussion on Connect

– Post-Intensive Care Syndrome (PICS) – Let’s talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

Simply click the link to go to the discussion. Read through the posts and write a message. I think you’ll find what you’re looking for there.

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@marield65

I would like to connect with caregivers or family and people who know anything about delirium in the hospital.
Hopefully Marield65

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Colleen, I read through the posts and didn’t find anything on delirium. Could you be talking about the dreams they had and could that be a connection to delirium? It does sound like it.
Marie (marield65) thank you

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@marield65

I would like to connect with caregivers or family and people who know anything about delirium in the hospital.
Hopefully Marield65

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Hi Marie,
Quite right! I was confusing that conversation with this one where @lupedelarosa12 was asking about her son’s behavior post surgery for a heart transplant. She talks about delirium and gets some thoughts and experiences of others here: https://connect.mayoclinic.org/discussion/heart-transplant-231a15/?pg=1#comment-54653

Marie, I would encourage you to post your question about delirium to the PICS discussion. I’m confident others talking there have experienced it too.

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I am 81 year old woman. 5'2" 110#'s I mention this because of what happened to me. March 1, 2021 I picked up a friend to go for annual BD luncheon at a Mexican restaurant we had been to before. From now on anything I say is not in my memory, but relayed to me by my friend. I have had complete memory loss and it has been a fiasco, which has ruined my life. We ordered a Margarita and food. Friend says I drank some of my drink and then got up and went into the rest room and never came back to the table. I do not remember being in the rest room, or remember my friend checking on me. I found out later my friend checked on me, but also said they think you are drunk, which I wasn't. I think it made me mad, because I knew I wasn't. I was at the door and said I was leaving, my friend left credit card on table, grabbed my purse and followed me out. I swear no memory of any of it. Apparently the manager was behind my car talking on his phone obviously calling the police since 6 minutes later my friend says I was being pulled over by police and arrested for DUI. This is almost unbelieveable even to me, but my friend heard me say does it take 5 of you to arrest and 80 year old woman. I guess I resisted and they beat me up pretty badly. Little me and later a 6 foot policeman came to my cell door and said I kicked him and another officer. It was news to me and I swear I have no remembrance of it at all. They did not get me any medical evaluation, but kept me in jail for 27 hours with no phone call that I can remember. They fractured my left wrist, dislocated my right shoulder injured my knee and left horrible bruises on my right arm. I was not drunk, but later when I got to ER found my BP was 206/84 and I had a UTI besides and when I told my Dr. he said I had had a Delirium episode. I never heard of that before, but it took me 3 days to get my car untowed and home 45 miles away from Ill. to Wisc. and the ER. I have been charged with a felony for kicking the police, which I do not remember, $25,000 lawyer fees, bond, fines, towing charges. No family near by and 81 year old husband with dementia and losing sight so I was on my own. They are intent on crucifying me. My Dr. did not want to get involved and would only write a very generic letter to the court, which the court would not accept. More than 9 months and THEY want to make a deal with me. I was sick and they don't want to let it go. Lastly, how much weirder can it get? My first lawyer called me and said he could not continue to represent me, because he found he had been representing the waiter on other charges he was going to get reduced or set aside by testifying I had more to drink than I said. Now 9 months later, I find the waiter and manager are going to testify against me, Pretty sure the police and restaurant had a scam going to set up people for DUI. 7 Mundelein police and waiter and manager on my witness list. I feel like I am in Nazi Germany or Russia. Have had 3 lawyers who have not been very effective. That is why I came on this site to print out information on Delirium for the court. Sorry this is so long, but believe me there is so much more. By the way 28 years of driving a lot with not 1 citation and they managed to give 6 bogus tickets in 5 minutes. Selina

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@selina2505

I am 81 year old woman. 5'2" 110#'s I mention this because of what happened to me. March 1, 2021 I picked up a friend to go for annual BD luncheon at a Mexican restaurant we had been to before. From now on anything I say is not in my memory, but relayed to me by my friend. I have had complete memory loss and it has been a fiasco, which has ruined my life. We ordered a Margarita and food. Friend says I drank some of my drink and then got up and went into the rest room and never came back to the table. I do not remember being in the rest room, or remember my friend checking on me. I found out later my friend checked on me, but also said they think you are drunk, which I wasn't. I think it made me mad, because I knew I wasn't. I was at the door and said I was leaving, my friend left credit card on table, grabbed my purse and followed me out. I swear no memory of any of it. Apparently the manager was behind my car talking on his phone obviously calling the police since 6 minutes later my friend says I was being pulled over by police and arrested for DUI. This is almost unbelieveable even to me, but my friend heard me say does it take 5 of you to arrest and 80 year old woman. I guess I resisted and they beat me up pretty badly. Little me and later a 6 foot policeman came to my cell door and said I kicked him and another officer. It was news to me and I swear I have no remembrance of it at all. They did not get me any medical evaluation, but kept me in jail for 27 hours with no phone call that I can remember. They fractured my left wrist, dislocated my right shoulder injured my knee and left horrible bruises on my right arm. I was not drunk, but later when I got to ER found my BP was 206/84 and I had a UTI besides and when I told my Dr. he said I had had a Delirium episode. I never heard of that before, but it took me 3 days to get my car untowed and home 45 miles away from Ill. to Wisc. and the ER. I have been charged with a felony for kicking the police, which I do not remember, $25,000 lawyer fees, bond, fines, towing charges. No family near by and 81 year old husband with dementia and losing sight so I was on my own. They are intent on crucifying me. My Dr. did not want to get involved and would only write a very generic letter to the court, which the court would not accept. More than 9 months and THEY want to make a deal with me. I was sick and they don't want to let it go. Lastly, how much weirder can it get? My first lawyer called me and said he could not continue to represent me, because he found he had been representing the waiter on other charges he was going to get reduced or set aside by testifying I had more to drink than I said. Now 9 months later, I find the waiter and manager are going to testify against me, Pretty sure the police and restaurant had a scam going to set up people for DUI. 7 Mundelein police and waiter and manager on my witness list. I feel like I am in Nazi Germany or Russia. Have had 3 lawyers who have not been very effective. That is why I came on this site to print out information on Delirium for the court. Sorry this is so long, but believe me there is so much more. By the way 28 years of driving a lot with not 1 citation and they managed to give 6 bogus tickets in 5 minutes. Selina

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Selina, what a horrifying story. Do you know what the cause of the delirium episode? Do they suspect it was the undetected UTI? or something else?

Here is information about delirium from Mayo Clinic
– Delirium Symptoms and Causes https://www.mayoclinic.org/diseases-conditions/delirium/symptoms-causes/syc-20371386

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