Post Intensive Care Syndrome (PICS)

Muscle weakness, memory problems, depression, insomnia, physical pain, nightmares. These are just a few examples of the problems that patients may experience following critical illness. Symptoms such as these which affect emotional, physical, and cognitive health are now being recognized as Post Intensive Care Syndrome, or PICS. Efforts to educate health care providers, patients, and families about Post Intensive Care Syndrome are underway. Explore our site to learn more about PICS.

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Tue, May 8, 2018 12:07pm

Breaking it Down: Post Intensive Care Syndrome and Prevention - Part II

By Annie, Mayo ICU Nurse Practitioner, @andreab

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This month we are going to discuss Post Intensive Care Syndrome and Prevention Part II - what loved ones can do to help prevent PICS.

It is not uncommon for loved ones to feel overwhelmed when in the intensive care unit. The ICU is a very unfamiliar and scary environment for most people, and caring for your critically ill loved one can seem like too much at times. However, the physical presence through voice and touch that a loved one can provide can be as therapeutically beneficial as many of the interventions provided by the medical team. Below are a few tips to keep in mind while with your loved one in the ICU to help make this time easier for everyone:

  • When appropriate, help ensure that your loved one has any needed assistive devices such as glasses, hearing aids, dentures, etc. This will help your loved one adjust to and understand the ICU environment more easily.
  • Normalize the ICU room for your loved one. Bring in familiar pictures, pillows, blankets, music, etc. to help your loved one feel more connected to their life outside of the hospital.
  • Be present with your loved one. Talk to them as you normally do. Even patients who are unable to respond benefit from the conversational presence of familiar voices.
  • Don't be afraid to touch your loved one. Physical connection is very important, but can be scary in the ICU. Work with your loved one's healthcare team to safely provide a simple touch such as a hug or gentle massage.
  • Engage with the medical team. Do not be afraid to be present at patient rounds to hear the most recent updates on your loved one and take the opportunity to ask any questions you may have. You are the key member of your loved one's medical team.
  • Keep a diary of your loved one's ICU stay. ICU diaries can be very powerful tools in post ICU period - for both the patient and their loved ones. More can be found on this topic at the following link: ICU diaries - how do they help?
  • Take care of yourself. Your participation in your loved one's recovery from critical illness is vital. Your ability to help will be greatest if you remember to take good care of yourself. Get regular sleep in a non-stimulating environment away from the hospital as much as you are able. Remember to fulfill your nutritional needs with high quality foods and drinks. And care for your emotional needs. Reach out to others to help process your emotions during this very stressful time. Online support forums such as the following may be helpful: Caregivers and Post-Intensive Care Syndrome (PICS) - Let's Talk

 

Stay tuned to next month's blog to learn about recovery and Post-Intensive Care Syndrome.

In the meantime, join our conversation online. Have you or a loved one experienced critical illness/injury? You're not alone. Share your story and connect with others who have been on the same journey:

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

So glad you wrote on this topic. My husband was in the ICU for a month and kept in an artificial coma. When I visited him the health care team would reduce his anesthesia and he would wake up a bit. Every time I saw him I said the same three sentences: "You are alive. You are doing well. I love you." I kissed him and held his hand. Sometimes my husband squeezed my hand before he went back to sleep. Toward the end of my husband's stay, I asked the nurses to raise the shades so my husband could distinguish day from night. Anesthesia was reduced gradually and it took a week for my husband to regain full consciousness. During this time he confused the past with the present, but I ignored these comments because I didn't want to disturb him. I attended morning rounds when I could and asked questions. My daughter came with me one morning. "Is my father going to die?" she asked. The Mayo Clinic physician stood up tall, looked her in the eyes, and replied, "Not on my watch!" Everyone in the family is grateful for the loving care my husband received.

@harriethodgson1

So glad you wrote on this topic. My husband was in the ICU for a month and kept in an artificial coma. When I visited him the health care team would reduce his anesthesia and he would wake up a bit. Every time I saw him I said the same three sentences: "You are alive. You are doing well. I love you." I kissed him and held his hand. Sometimes my husband squeezed my hand before he went back to sleep. Toward the end of my husband's stay, I asked the nurses to raise the shades so my husband could distinguish day from night. Anesthesia was reduced gradually and it took a week for my husband to regain full consciousness. During this time he confused the past with the present, but I ignored these comments because I didn't want to disturb him. I attended morning rounds when I could and asked questions. My daughter came with me one morning. "Is my father going to die?" she asked. The Mayo Clinic physician stood up tall, looked her in the eyes, and replied, "Not on my watch!" Everyone in the family is grateful for the loving care my husband received.

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@harriethodgson1 it sounds like you did just the right things for you husband during his critical illness. I love that you would repeat the same phrases to him. I can imagine that was very comforting to him. Is there anything else from your experience that you would like to add to the above "tips" that you think others might find helpful?

Yes. I think family members need to become patient advocates. Being my husband's advocate helped him and helped me. Instead of standing around helplessly and wringing my hands, I felt involved in his care. Being an advocate is a cooperative role and I read up on it beforehand. For example, the nurses wanted to keep my husband's room quiet and dark. Weeks later, however, I decided it would help my husband to see the sunshine, and shared this thought with the nurse. She raised the shades. Having a loved one in the ICU is stressful for family members. An experienced family caregiver, I knew this, and asked for help. Family members were extremely helpful and became my support group. A couple from church invited me and another caregiver to dinner and I learned a lot from her. I've been a health/wellness writer for 38 years and this is my 21st year as a family caregiver. I wrote a series of four books for family caregivers and Amazon just released my 36th book, which is about raising grandchildren. Seeing thoughts in print can be a life-changing experience, and I encourage family members to write about their experiences in a journal. People ask me if I keep a journal, but my books serve as journals.

@harriethodgson1

Yes. I think family members need to become patient advocates. Being my husband's advocate helped him and helped me. Instead of standing around helplessly and wringing my hands, I felt involved in his care. Being an advocate is a cooperative role and I read up on it beforehand. For example, the nurses wanted to keep my husband's room quiet and dark. Weeks later, however, I decided it would help my husband to see the sunshine, and shared this thought with the nurse. She raised the shades. Having a loved one in the ICU is stressful for family members. An experienced family caregiver, I knew this, and asked for help. Family members were extremely helpful and became my support group. A couple from church invited me and another caregiver to dinner and I learned a lot from her. I've been a health/wellness writer for 38 years and this is my 21st year as a family caregiver. I wrote a series of four books for family caregivers and Amazon just released my 36th book, which is about raising grandchildren. Seeing thoughts in print can be a life-changing experience, and I encourage family members to write about their experiences in a journal. People ask me if I keep a journal, but my books serve as journals.

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Harriet, thank you so much for sharing you, your family's, and your loved one's experience with critical illness. When the time is right, perhaps you might consider writing or collaborating on a specifically focused PICS-Family caregiver support book! Or, perhaps you're already working on such?

It's a good idea, but I'm currently writing a book about grandparenting.

Years ago when I had surgery and had to go into ICU, it was awful. I had come from recovery and it was late. My husband and son had come in with the doctor and then I fell asleep again. When I awoke the next time and asked for my husband or son, I was told the nurse had sent them home because there was nothing they could do. Home was a good distance away. I felt so alone. Also had a male nurse and this was new for me. My BP was very high and they were having trouble getting it down. I thought the night would never end. Why in the world would a nurse do this? I believe if they had stayed, my BP would have been easier to control. The ICU is a different world and a scary one. I felt so vulnerable. 🙁

@liz223

Years ago when I had surgery and had to go into ICU, it was awful. I had come from recovery and it was late. My husband and son had come in with the doctor and then I fell asleep again. When I awoke the next time and asked for my husband or son, I was told the nurse had sent them home because there was nothing they could do. Home was a good distance away. I felt so alone. Also had a male nurse and this was new for me. My BP was very high and they were having trouble getting it down. I thought the night would never end. Why in the world would a nurse do this? I believe if they had stayed, my BP would have been easier to control. The ICU is a different world and a scary one. I felt so vulnerable. 🙁

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That must have been a frightening experience, Liz. With the benefit of hindsight, your experience can teach nursing staff about avoiding unnecessary suffering. The situation was probably also difficult for your husband and son, since they probably would've liked to have been there when you woke up.

I invite you join the discussion here:
* Post-Intensive Care Syndrome (PICS) – Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

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