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) Support 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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