My Loved One is Waking Up & I Feel Unprepared

How to tell my loved one what happened?

Navigating the emotional and complex journey of helping a cardiac arrest survivor understand their situation can be a daunting experience for close family members. They were there every step of the way, even for the ones whose survivors have no recollection. They are co-survivors.

As a cardiac arrest co-survivor, you may face the challenge of explaining to your survivor what has happened to them when they awaken in the hospital. This conversation can be emotional, confusing, and difficult, but it is essential to help your loved one understand their situation. In this educational resource based on our experiences, we’ll provide guidance on approaching this conversation with empathy, sensitivity, and support.

• • Waking up after a cardiac arrest can be confusing and overwhelming. Approach the situation with empathy and compassion, and do not feel you need to have all the answers. Remember that you and your loved one may be experiencing a range of emotions as you have both suffered your own trauma. If possible, have support available to help you navigate the situation.
  • Expect the unexpected. It’s hard to predict how your loved one’s brain will function when they awaken and in the following days. During this uncertain period, they may have difficulty recognizing or understanding you, or they might repeatedly ask the same questions. This can be normal. Their care team, including doctors, nurses, and potentially rehabilitation specialists, will be your best source of information regarding their brain recovery.
  • Be patient, calm, and reassuring. When speaking to your loved one, maintain a gentle tone of voice and use short, simple sentences that are easy to understand. Avoid overwhelming them with too much information at once, and give them time to process and respond. Be patient with them and yourself.  
  • Introduce yourself and remind them of your relationship. If you see that this is required, start the conversation by introducing yourself and reminding them of your connection. You could say, “Hi, it’s me, [your name]. I’m so glad you’re waking up.” Then, check how they’re feeling, and offer words of support and encouragement.
  • Be honest and avoid medical jargon. While it’s important to be truthful about their condition and the treatment they’re receiving, try to avoid using medical jargon or technical terms that could be confusing. Explain their situation in plain language, and let them know that their care team is doing everything possible to help them recover. For example: “Hi, Mom. It’s Jeremy, your son. Dad is here, too. You’re in the hospital because your heart stopped, but it’s working again. The nurses and doctors are taking care of you, and we’re here with you as well.”
  • Address their physical sensations and concerns. Your loved one may be bothered by various physical sensations as they awaken, such as the presence of a breathing tube, intravenous line, or urinary catheter. Reassure them that these sensations are normal and that they are safe. For instance: “Mom, you’re okay. The feeling in your mouth is your breathing tube. You’re safe. Just breathe. You had a cardiac arrest, but you’re okay now. You’re in the intensive care unit, and you’re waking up.”
  • Listen to their questions and concerns. If your loved one can speak, they may have questions or express concerns. Listen to them and respond to the best of your ability, but remember that you do not have to know all the answers. It’s perfectly acceptable to say, “I don’t know, but we can ask your doctor when they return.” They might have questions or fears about what has happened to them, and you can offer reassurance and comfort as they process their emotions.
  • You can bring the familiar to your cardiac arrest survivor. Some survivors find it helpful to be surrounded by pictures of their homes, friends, family, and pets. Co-survivors can also use the patient whiteboard available in the hospitals to answer frequent (repetitive) questions and to establish the timeline of events leading up to the present moment. Try this, especially during long stays in the hospital.

Co-survivor insight: “When my brother woke up, it was after he had seizures and infections, and his brain was swollen, and we didn’t know how he would be, if his mind would work. At first, he asked a bunch of the same questions over and over. And he got confused too. But slowly and surely the person we know and love started to shine through. We just went slow and wrote lots of reminder messages for him. It was challenging and heartbreaking at first, but the repetitive questions didn’t last too long.”

In conclusion, informing your survivor about their cardiac arrest upon awakening can be challenging. Approach the situation with patience, empathy, and compassion for your loved one and yourself. Remember to lean on the support of their care team and others around you. By providing a caring, supportive, and understanding environment, you can help your loved one begin their journey toward recovery.

Sources

Rossetti, A. O., Rabinstein, A. A., & Oddo, M. (2016). Neurological prognostication of outcome in patients in coma after cardiac arrest. The Lancet Neurology, 15(6), 597–609. doi:10.1016/s1474-4422(16)00015-6 

Paul, M., Bougouin, W., Geri, G., Dumas, F., Champigneulle, B., Legriel, S., … Cariou, A. (2016). Delayed awakening after cardiac arrest: prevalence and risk factors in the Parisian registry. Intensive Care Medicine, 42(7), 1128–1136. doi:10.1007/s00134-016-4349-9

Thank you to our contributors

Matthew Douma & Karen Fray

How to tell my loved one what happened?

Navigating the emotional and complex journey of helping a cardiac arrest survivor understand their situation can be a daunting experience for close family members. They were there every step of the way, even for the ones whose survivors have no recollection. They are co-survivors.

As a cardiac arrest co-survivor, you may face the challenge of explaining to your survivor what has happened to them when they awaken in the hospital. This conversation can be emotional, confusing, and difficult, but it is essential to help your loved one understand their situation. In this educational resource based on our experiences, we’ll provide guidance on approaching this conversation with empathy, sensitivity, and support.

• • Waking up after a cardiac arrest can be confusing and overwhelming. Approach the situation with empathy and compassion, and do not feel you need to have all the answers. Remember that you and your loved one may be experiencing a range of emotions as you have both suffered your own trauma. If possible, have support available to help you navigate the situation.
  • Expect the unexpected. It’s hard to predict how your loved one’s brain will function when they awaken and in the following days. During this uncertain period, they may have difficulty recognizing or understanding you, or they might repeatedly ask the same questions. This can be normal. Their care team, including doctors, nurses, and potentially rehabilitation specialists, will be your best source of information regarding their brain recovery.
  • Be patient, calm, and reassuring. When speaking to your loved one, maintain a gentle tone of voice and use short, simple sentences that are easy to understand. Avoid overwhelming them with too much information at once, and give them time to process and respond. Be patient with them and yourself.  
  • Introduce yourself and remind them of your relationship. If you see that this is required, start the conversation by introducing yourself and reminding them of your connection. You could say, “Hi, it’s me, [your name]. I’m so glad you’re waking up.” Then, check how they’re feeling, and offer words of support and encouragement.
  • Be honest and avoid medical jargon. While it’s important to be truthful about their condition and the treatment they’re receiving, try to avoid using medical jargon or technical terms that could be confusing. Explain their situation in plain language, and let them know that their care team is doing everything possible to help them recover. For example: “Hi, Mom. It’s Jeremy, your son. Dad is here, too. You’re in the hospital because your heart stopped, but it’s working again. The nurses and doctors are taking care of you, and we’re here with you as well.”
  • Address their physical sensations and concerns. Your loved one may be bothered by various physical sensations as they awaken, such as the presence of a breathing tube, intravenous line, or urinary catheter. Reassure them that these sensations are normal and that they are safe. For instance: “Mom, you’re okay. The feeling in your mouth is your breathing tube. You’re safe. Just breathe. You had a cardiac arrest, but you’re okay now. You’re in the intensive care unit, and you’re waking up.”
  • Listen to their questions and concerns. If your loved one can speak, they may have questions or express concerns. Listen to them and respond to the best of your ability, but remember that you do not have to know all the answers. It’s perfectly acceptable to say, “I don’t know, but we can ask your doctor when they return.” They might have questions or fears about what has happened to them, and you can offer reassurance and comfort as they process their emotions.
  • You can bring the familiar to your cardiac arrest survivor. Some survivors find it helpful to be surrounded by pictures of their homes, friends, family, and pets. Co-survivors can also use the patient whiteboard available in the hospitals to answer frequent (repetitive) questions and to establish the timeline of events leading up to the present moment. Try this, especially during long stays in the hospital.

Co-survivor insight: “When my brother woke up, it was after he had seizures and infections, and his brain was swollen, and we didn’t know how he would be, if his mind would work. At first, he asked a bunch of the same questions over and over. And he got confused too. But slowly and surely the person we know and love started to shine through. We just went slow and wrote lots of reminder messages for him. It was challenging and heartbreaking at first, but the repetitive questions didn’t last too long.”

In conclusion, informing your survivor about their cardiac arrest upon awakening can be challenging. Approach the situation with patience, empathy, and compassion for your loved one and yourself. Remember to lean on the support of their care team and others around you. By providing a caring, supportive, and understanding environment, you can help your loved one begin their journey toward recovery.

Sources

Rossetti, A. O., Rabinstein, A. A., & Oddo, M. (2016). Neurological prognostication of outcome in patients in coma after cardiac arrest. The Lancet Neurology, 15(6), 597–609. doi:10.1016/s1474-4422(16)00015-6 

Paul, M., Bougouin, W., Geri, G., Dumas, F., Champigneulle, B., Legriel, S., … Cariou, A. (2016). Delayed awakening after cardiac arrest: prevalence and risk factors in the Parisian registry. Intensive Care Medicine, 42(7), 1128–1136. doi:10.1007/s00134-016-4349-9

Thank you to our contributors

Matthew Douma & Karen Fray