Post-Intensive Care Syndrome (PICS) - Let's talk

@sacker I’m sorry 😐 you’re experiencing so much but as everyone has already validated for you, YOU are absolutely right in taking the best therapeutic steps for you to move forward. I am living proof that anyone is diagnosable EVEN if the proverbial “they” don’t know who, what, when, why, where life and traumatic events have taken you! I too deal with maintaining a good mental and physical pain that requires a. A listening hear b. A vote of confidence c. Caring that goes Above and BEYOND the call of duty in these extremely stressful times and d. Discovering these forums and helping people like ourselves persevere.
I had several “change who you are” religious excursions and it was scary when I looked back at my medical records to see someone actually wrote something in MY CHARTs that I knew in my heart was someone else’s opinion (caretaker, home-health-aide, et al). Stay TRUE to yourself and be careful!! Lots of great things heading your way.....
Candi

When I first woke up from the coma, I had no idea where I was or what had happened to me. I couldn't move bc I was paralyzed. I could not speak bc I had a trache. People were around me but no one was talking to me. I could hear religious music which I would never have listened to. I thought I'm in a funeral home. These people think I'm dead! I knew I needed to make them realize I'm alive. I tried to move, but I couldn't. I could hear them say was going to die. I cried. I thought maybe if they see my tears they would know I'm still alive. I would see men in suits wheel bodies down the hall. I later learned that the death rate in ICU was high from the flu which was why I was there. As I began to recover, the staff would tell me. Everyone your age had died. That didn't help at all. Were they trying to make me feel guilty? At one point I had an MRI thoughtless staff put the panic button in my paralyzed hand. I had regain some use of one hand, but her thoughtlessness was horrid. I panicked. A cage was placed over my face. When I was taken out, but the cage wasn't removed. I pounded on the cage with the one limb I could now move. I could hear the the MRI staff laughing and say you're going to hurt your hand. I was sweating profusely. I was in a panic and mouthing the word HELP!! Finally when a staff person removed the cage removed the cage, he said in a concerned voice - get her nurse ! Get her nurse!! I don't know what I looked like but it must have been bad. My kind nurse took over but bc of the trache I still couldn't tell her what had had happened. My doctor tried to tell me things that happened were hallucinations, but the worst things that happened were not hallucinations. It was the cruelty of the staff. I can not be around religious music. The staff tried to convert me, pretty bad since I was in a public hospital. That should not have happened. My family asked them to stop playing that music and when they would return it be playing again. They were determined to convert me, even through rehab and my follow-up care. I'm now terrified of hospitals and doctors offices. I have had panic attacks at both. I never had happen before. I retired from working at hospitals. I knew things were supposed to be better than the way I was treated. Especially since I was hospitalized in the one I had work at. I even remember seeing many familiar faces.

@rosemarya thanks for your response, I greatly appreciated it! I just got out of the hospital again, round 3? I don’t know I’ve lost track. Spiked a high fever and sepsis so another ICU stay then another 10 days. I am fortunate to have a strong support system including a wonderful Unitarian minister who visits with me. I’m Jewish and Unitarian my husband is Unitarian. Actually the minister is the person who married my husband and I, so she has special meaning to us! As usual, tired of the hospital although the hospital itself is terrific. They have had meetings for staff on how to treat my rare illness and everyone seems to know what to do. Unheard of in this day and time of diminishing resources! Sometimes I feel like my body has betrayed me as I used to be so healthy and strong but it is what it is, I just need to learn to cope with it and have the best life possible, for myself and my husband. I struggle too with what my husband has to go through. He keeps telling me that that’s part of his life as my husband but I can see that we are both stressed. Still working with the medical teams on ways to get more stable and minimize the need for hospitalization. Anyway, that’s the update. I keep wondering if they begin to sound all alike, although it’s different each time, somewhat. I’m so glad you have your wonderful husband too and congratulations on your upcoming anniversary. I hope all is well with you and hope I don’t always have to start a conversation with a hospital update! Thank you for your kindness and I treasure the long distance hand squeeze! Sending my caring and all my best wishes. Rhoda.

@janegigi, I want to extend my Welcome to you. I am happy that you have found this topic on Mayo Clinic Connect. I do wish that there was something that could be done to turn back the clock so that you would not have had this experience. I don't understand how you were placed in such a situation. I have had several hospital experiences, and even in the best of circumstances, it can be a frightening and eerie place. I have also been in situations where there have been 'less than pleasant/qualified" caregivers and staff. I commend your daughter for calling this to the attention of a responsible staff member where it was addressed. I hope that you can find at least a small sense of gratitude that someone, in the future, will benefit from this. (Not much help, I know).
I have no experience with what you have gone thru, except one time when my son was not feeling confident about the night nurse, and so he decided to stay with me thru the night. I was also fortunate that my family was available afterwards to tell me what what they had observed during my times of confusion and this has helped me to sort out the blanks in my memory. I don't know what to say or to think about your situation, but I don't think that we can ever just forget things like that. I am glad to hear that you are making some improvement, and are pleased with your therapist and are seeing some results. It sounds like your husband is willing to stand up for you and be at your side. I hope that you will continue making progress, and begin to mingle with a new group of friends - who accept you for who you are.

You said that you had recently retired, so will you be able to revisit any of your original retirement plans? Do you think you can continue to look ahead to building some better memories and experiences for yourself and for your family?

My husband had triple bypass three month before I became ill. We had planned a big trip just before our illnesses, but that was shelved. We have gone on some short trips with our children. We are lucky to have all three of children living in the same town with their spouses and six grandchildren. I did return to my Girl Scout volunteering and with another volunteer we made a 1918 replica Scout uniform for the Edith Bolling Wilson museum in Wytheville VA. You can google it and see it. Not too bad for someone whose hands were paralyzed at one time. It was good therapy for me. I have been to see it. It's two hours from my home. She was the wife of President Wilson. I also have dressed several dolls for Girl Scouts, and some other charities to donate for auctions. I still do some wildlife photographer as a hobby. I live on a wildlife preserve. So I'm not stagnating, it's just getting doctors to listening. I've doctors tell me I wasn't really ill even though they can just look in the computer, I had a nurse tell me my illness was caused by the devil, I had a therapist try to convert me to her religion, I had a resident tell me I was just hallucinating. A nurse told me I was overreacting. Another told me to 'not sweat the small stuff' like my illness was small stuff. Insert big eye when I really want to scream.

@rckj,
Rhonda, Consider this a "Thinking of You" greeting. I thought that I might drop in to say 'Hi' before I get my day going. I hope that you are seeing some better days since I last heard from you.
I have been doing some yard work - pulling weeds and cleaning up my garden. I have dafodils that were in my grandpa's yard, then my dad's, so they are always a happy memory for me. I remember picking them for my mom and grandma. And my own boys used to pick the ones that I have. Right now, the irises are coming up in a tangled mess of weeds because I have not tended them for several years. It is amazing that they have survived. I can't wait to see if any of the special ones will bloom.

Are you at home or near a window where you can see the season changing? When I was in hospital, that was one thing that I enjoyed doing. I have a need to see or be outside because it makes me feel alive and hopful.
Hugs,
Rosemary

One day when I was in rehab, the nurses let my husband wheel me outdoors. It was March and a bit windy in Virginia. But it was so wonderful to be outdoors other than to be in transport for testing. That was the only time during my 55 day stay that I was able to be outdoors. However, I had a good window view of a city park while rehab for 2 1/2 weeks. I often ate my meals at the window. Several times a day, I would see a hook and ladder firetruck racing through the street on a call as it made its way to the interstate. I was fascinated with the way the driver handled the back, the front going one way and the back going the other way. I was on the seventh floor of the hospital and had a birds eye view. So now when I go to parades, those firetrucks hold a special meaning to me. When I came home, my husband wheeled me into the backyard to see the wild violets in bloom. He had instructed our yard guy to not mow yet, so I could see the violets in bloom. He knew how much I love them. Sometimes it's the small things.

@janegigi, Thanks for sharing your beautiful memory. I was doing yard work yesterday, and our yard has patches of wild violets. Our yard was likewise overgrown in central Kentucky because my husband's mower had been out of commision. I like how we can derive strength from 'small things' like spring blooms or by being outside on a nice day. Like you, I had a period of time when the window was my outside contact. I remember seeing the tops of the construction cranes from ICU in KY. and window washers on the 10th floor at Mayo. It was winter, and I enjoyed the stars in the night sky. Later as spring approached, I enjoyed looking down and watching the trees and flowers come 'alive' because it made me feel alive and have hope. This was over several hospitalizations.
Fire trucks are amazing! My son is a firefighter and drives one of those big things called a Quint.
How are you getting along these days?

I'm seeing a new therapist, not that I didn't like my former one, but this one does a different type of therapy. She thinks she may be able to arrange my speaking with residents. I've been wanting to tell my story for a while. I mentioned that to my ICU doctor and he told me my survival story was "of no teaching value". That really upset me. This therapist totally disagree. She says it's of great value. That ICU doctor also had never heard of PICS and gave me the advice that I just needed to forget my illness. I guess I need a magic wand and I'll be all better. But I have stage 3 kidney failure and have frequent kidney infections. I was on dialysis while in the hospital, bc my kidneys shut down. He didn't seem to think that was a big deal, nor did he appreciate the fact I was paralyzed and have had to relearn to walk. I've moved on with life in many ways but I don't want to forget the war I fought. I want share my experience and tell my story.

@rosemarya Rosemary, so nice to hear from you! I’ve been discouraged lately due to hospital admissions and ER visits. Sometimes it’s hard to remember a life outside the hospital but I’m trying to! I also love the flowers and our vegetable garden. Watching the world through our solarium windows. I especially love the tulips and our all too brief lilac season. Physical therapy is working with me to get me outside more. I agree with them and you that it would be healing. So glad you are enjoying your garden and your good memories. I need to do more of that. I feel claustrophobic indoors but need to build strength to get outside more. Well worth doing! Coming up soon are the tulips, lilacs, azaleas, rhododendrons, and a small rose arbor. I’m hoping and working to get outside for all of those flowers. We have a lot of space, some planted some just growing. We are surrounded by a wildlife preserve so they can’t build anything nearby. It’s so beautiful, especially at sunrise and sunset. Thanks for reminding me of all these good things that bring back memories and create new ones. Enjoy your flowers! Hope to stay in touch. All my best wishes, Rhoda.