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

Melissa, This was postd 7 hrs ago.
Breaking it Down: Post Intensive Care Syndrome Wrap Up
https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-wrap-up/

Melissa I hated to leave the conversation the other day, but Oi needed to be somewhere away from my computer.
How are you and your mother doing?
I also want to ask how is your dad doing? He is the one that I can most relate to. I spent 5 days in ICU in Kentucky, and another 12 in critials conditiion at Mayo. For most of the first 10 days I have very little memory of what happened. Mostly random memories if events (sudden noises, being moved or lifted, needles and strange equipment, hushed voices/parts of conversations, faces that i still cannot identify, etc) After my hospital release while I was recovering, I asked my husband what had occurred during those 3 weeks. I remember how difficult it was for him to tell me about it. It was even more difficult because he and I had gone thru the same situation, but from different perspectives,. And it caused him much pain as I kept asking over and over again.
Have you considerd keeping a list of the events, the procedures, the people, the places tat your dad has had contact with during this time. If he ever asks, you will be able to provide him with it. A little peace of mind could be a huge gift for him.

My husband has recently had numerous admissions to ICU following a cystoprostatectmy and missed paralytic ileus requiring subsequent emergency surgery for a pelvic abscess and peritonitis. He is now 16 weeks post initial surgery and now suffers from a pseudo obstruction resulting in frequent loose stools and excessive flatus with significant weight loss, weakness, anorexia and his quality of life is majorly effected. We cannot be sure if there is any chance this may ever resolve completely. He has become very depressed and anxious. It is difficult for him to remain optimistic and I believe he suffers from the PIC symptoms described. If you have any suggestions on how this may be dealt with it would be greatly appreciated. It has been a nightmare to date.

@melissa3243

Hi martha7979, Welcome to Connect. I have not experienced any of what you are describing for your husband. But, I think that I can understand his feelings of depression and anxiety because of the length of time that he has continued to struggle post surgery. I can understand the fear of the unknowing if this will ever be resolved, because it reminds me of our (husband and me) pre-transplant state of mind.
Where is your husband now? Is he home? In hospital of care facility? What are the doctors telling him about his ability to regain any of his quality of life?

I want to invite you to take a look at the Discussion Groups on Connect - https://connect.mayoclinic.org/groups/ - because that is a good place to meet others who experienced similar health conditions as your husband. It can be comforting to talk to someone else who has gone thru a similar surgery. If you don't see one that is similar, you can begin a new discussion. That way others will be able to see it. If you want help to post a new discussion, let me know and I will help you.

How are you doing with all of this stress and uncertainty? On Connect there is a Caregiver Group where you, too, can meet others who are caring for their loved ones in a variety of difficult circumstances. I know that you will be welcome there.

I just need to hear some experiences of life after Post Intensive Care Syndrome...please tell me I will be able to move forward from this someday! I have no history of depression at all and I just feel this terrible anguish that is consuming my inner life. It is so hard because on the outside, it looks like I am back to normal...but I am totally on autopilot, living out only one hour at a time. It is so painful to have people say, "looks like you are back to 100%" and "looks like you are doing so well" when I feel like a total mental and emotional mess. I have a hard time looking ahead and making plans, even a couple of days out. I just can't seem to find anything to look forward to. How did others in this group who lived through PICS find joy in their lives again? I have so much to be joyful about and grateful for, but I just don't feel joy. I have four young children that are counting on me for emotional support as they navigate life, but I am just barely surviving myself. Any advice?

Amanda,

You can only live life one minute at a time. Some times what you feel is from escaping a near death experience as many who have put a post here have done. Just walk as much as you can and do somethings you love doing to relieve the depression. It takes time to heal, for me it was well over a year after my Quad bypass before I began to feel better.

I'll never forget when I was awakened during the first night and being asked to do things like write my name and indicate where I hurt. While I was awake for those few m minutes a second nurse stood at the foot of my bed and asked the first nurse what made my case so important and the first nurse told that other one he did not know why I was such a priority. I was laying there thinking this "Cuz, I was about to die you ID10T" but being intubated I could not shout at him to go about his own business. I was put back to sleep and my right hand was re-restrained so that tI did not attempt to remove the tubing from my mouth.

I went back to work after 3 months and wished I'd had far more time to recuperate. I just didn't have enough sick or vacation leave to stay home.

All of life is lived one minute at a time. One day you will suddenly notice the depression is gone. BUT...let your doctors know of your depression problems.

Thankyou @rosemarya ,
My husband is at home. His Dr's are unable to guarantee his problems will resolve. They tell him it will be 6 - 7 months before/IF he is likely to get anywhere near where he was prior to his complications. I have made an appointment today for him to see an Holistic GP with an interest in GI issues as fear given his ongoing loose stools and distended colon I suspect he may have malabsorption problems as he is having problems gaining weight. He remains rather anorexic althòugh that is improving slowly.
I shall check out the other groups.
Many thanks for your response and suggestions. X

@eileena

@eileena
So sorry to hear you had insufficient time to recover. You are right about living one day at a time. A NDE certainly makes one reflect on the priorities of one's life. Funny the comments about you being a priority! Unfortunately there are few who truly understand NDE and many who feel it is mumbo jumbo. Guess one has to experience it to know it. My husband was sceptical until it happened not once, but twice to him. He has a very strong faith might I add.
Trust your recovery is moving in the right direction. My husband has what he calls 'dusty' days, when things are not going so well. He always tells me he is 'good!'. I can see in his body language that he is NOT, so bless him.
Hugs to you. X