My name is Patrik Hutzel from intensivecarehotline.com. This is another quick tip for families in intensive care.

At intensivecarehotline.com, we instantly improve the lives of families of critically ill patients in intensive care so that you can make informed decisions, have peace of mind, control, power, and influence, and make sure your loved one always gets the best care and treatment, even if you’re not a doctor or a nurse in intensive care.

Every week, I receive messages from ICU (Intensive Care Unit) families who are confused, scared, and desperate for real answers. This week, I received a message from a man named Brandon, and I have to share it with you because if you’re watching this right now, there’s a very good chance you or someone you love is going through something very similar.

Brandon writes:

“Hi Patrik,

My wife had a grand mal seizure. She has cardiomyopathy. I woke up to her having a seizure and immediately started CPR (cardiopulmonary resuscitation). At the hospital, they had to sedate her and put a ventilator in.

She was on propofol and fentanyl for almost two weeks. On the 13th day of sedation, the doctors turned everything off, and she was able to wake up.

My question: She doesn’t remember anything, including herself. What is the best way to help her remember?

I have so much more to ask.” 

From, Brandon

Before I answer Brandon’s question, you might wonder what makes me qualified to answer questions for families in intensive care.

I have worked in critical care nursing for over 25 years in three different countries, where I worked as a nurse manager for over five years in intensive care. I’ve been consulting and advocating for families in intensive care all around the world since 2013 here at intensivecarehotline.com.  I can confidently say that we have helped many clients in intensive care, and you can verify that in our testimonial section at intensivecarehotline.com or in our podcast section at intensivecarehotline.com, where we have conducted client interviews.

Brandon, I want to start by saying this: you’ve saved your wife’s life. You started CPR, you were there, and now you’re asking the right questions. I respect that enormously.  Stay with me for this entire video because I’m going to walk you through everything: the clinical details, the treatment options, the memory recovery strategies, and how my team and I can personally support you through this.

If you’re new to my channel, please subscribe. Hit the like button, hit the notification bell, share this video with your friends and family, and leave your comments. Let me know what you think about Brandon’s question, what content you want me to create, or what questions you have.  I put videos like this out every single week to help families in ICU like yours get the answers and the help you deserve.

What Is a Grand Mal Seizure?

Let’s start with what actually happened to Brandon’s wife.

That night, she woke up to a grand mal seizure. The medical term is a generalized tonic-clonic seizure. It is a seizure that affects the entire brain and the entire body.  It comes in two phases.

First, the tonic phase: the whole body goes rigid. The person loses consciousness and falls.  Then comes the clonic phase: rhythmic, violent jerking of all four limbs.  It is terrifying to witness. It is even more terrifying when it is the person you love.  Grand mal seizures can be triggered by a cardiac event, a sudden drop in blood flow to the brain, oxygen deprivation, electrolyte abnormalities, or epilepsy.

In your wife’s case, Brandon, her underlying cardiomyopathy was very likely a key factor. Let me explain why.

Cardiomyopathy and the Link to Seizures

Cardiomyopathy is a disease of the heart muscle.  There are several types: dilated, hypertrophic, restrictive, and arrhythmogenic.  What they all have in common is that the heart is not working properly. It may not pump enough blood, or it may develop dangerous heart rhythms, which we call arrhythmias.

Here’s what very likely happened to Brandon’s wife.  Her cardiomyopathy led to a sudden, severe cardiac event, possibly a dangerous arrhythmia or cardiac arrest.  When the heart stops or severely underperforms, even for a few seconds to minutes, the brain is deprived of oxygen. A brain deprived of oxygen can cease or shut down.

In your wife’s case, it ceased; she had a grand mal seizure.  You found her having a seizure, Brandon, and you started CPR, which is cardiopulmonary resuscitation.  That decision, that split-second heroic decision, is almost certainly why she’s alive today and waking up today.  I cannot overstate how important that was.

Why Ventilation and Sedation?

When your wife arrived at the hospital, the medical team had two immediate priorities:

1. Protect her airway.
2. Protect her brain.

Mechanical ventilation does the breathing for the patient when they cannot breathe safely on their own.

After a grand mal seizure and potential cardiac arrest, the brain and the body are in a state of emergency.

Sedating a patient and placing them on a ventilator protects the airway from being compromised, reduces the brain’s oxygen demand, which is critical when the brain may have been stressed by hypoxia, and prevents further seizure activity.

Propofol is one of the most commonly used ICU sedatives in the world. It produces rapid, reliable unconsciousness.  Fentanyl is a powerful opioid. It controls pain and complements the sedation.  Together, these medications kept your wife in a controlled, deeply unconscious state for 13 days.  This is not unusual for a patient with her presentation. However, what is critically important, Brandon, is understanding exactly what happened during those 13 days.  What did the brain monitor show?  What cardiac investigations were completed?  What do the medical records say?  That is exactly where I come in.

Why Doesn’t She Remember Anything?

Brandon, this is your main question, and I want to answer it directly and fully because I think it is the answer you most need to hear right now.

There are at least four reasons why your wife may not remember anything, including herself.

1. ICU Sedation Amnesia

When patients are on propofol and fentanyl for extended periods and are ventilated, they cannot form new memories.  This is called anterograde amnesia.  The brain is chemically switched off. Those 13 days are simply not stored anywhere. They did not happen in her memory.  This is largely a known and intentional effect of ICU sedation. For many patients, as the drugs clear and the brain heals, memory begins to return.

2. ICU Delirium

This is one of the most common and under-recognized complications of intensive care.  Up to 80% of ventilated ICU patients develop some degree of delirium.  It can look like severe confusion, an inability to recognize family members, hallucinations, or, in other patients, complete withdrawal and flatness.  ICU delirium typically resolves over days to weeks as the patient recovers.

3. Hypoxic Brain Injury

This is the question that must be carefully assessed by the medical team. If your wife’s brain was deprived of oxygen during the cardiac event, even briefly, there may have been some degree of brain injury.  This can affect memory, recognition, personality, and cognition.

An MRI (magnetic resonance imaging) of the brain is a key investigation here. Has a brain MRI been done, Brandon? If not, it needs to be discussed urgently with the medical team.

4. Psychological Shock

Patients who wake up from prolonged sedation often experience something close to psychological disorientation.  They have no memory of being ill. They find themselves unable to move properly, surrounded by machines and strangers, with no context for any of it.  Even without any brain injury, this experience can temporarily mimic memory loss.

The important message, Brandon, is this: for most patients, memory improves significantly over time. However, you need expert assessment and the right support, and you need it right now.

Treatment Options.  Let me walk you through the key treatment areas for your wife.

Neurological Perspective.  She needs a neurology review if that has not happened yet.

She needs:

• A brain MRI to assess for hypoxic brain injury.
• An EEG (electroencephalogram) to check for ongoing abnormal brain activity.
• A neuropsychological assessment to map exactly what cognitive functions are affected and to build a targeted rehabilitation plan.

Cardiac Perspective.  She needs a cardiology review to optimize her cardiomyopathy management.  She needs an echocardiogram to check her heart function.  She may need Holter monitoring or an implantable loop recorder to detect dangerous arrhythmias.   Depending on her cardiac findings, the team may recommend an ICD (implantable cardioverter-defibrillator) to protect her from future cardiac arrest events.  Her heart failure medications may also need to be reviewed and optimized.

Rehabilitation Perspective

Brandon, she needs physiotherapy to rebuild strength after two weeks in bed on a ventilator. She may also need occupational therapy, speech pathology if needed, and, critically, psychological support for both your wife and yourself, Brandon.  ICU follow-up clinics are becoming more common at major hospitals. I strongly encourage you to ask about an ICU follow-up clinic and post-ICU rehabilitation program if your hospital has one.

How to Help Your Wife Remember

Here’s what you can do right now at the bedside to help your wife’s memory return.

Be patient and keep the environment calm.  Do not overwhelm her. The brain needs gentle, consistent, low-stress stimulation.  Bring familiar objects from home.  Photographs, a favourite blanket, or something with sentimental meaning. Sensory anchors are powerful.  Talk to her about shared memories. Your wedding, a holiday you loved together, or funny family stories.  Keep it warm and low-pressure.  Do not quiz her. Do not say, “Don’t you remember?” That creates pressure and anxiety.  Just gently share the memory. Let her brain absorb it and make the connections.  Play familiar music.  Music memory is often stored differently from other types of memory and can be preserved even when other memories are affected. Her favourite songs may trigger recognition when words do not.  Use an ICU diary if one is available. If the ICU kept an ICU diary, with notes and photographs of her time in intensive care, use it with her.  Reading about what happened to her in gentle and humanizing language can help ICU survivors reconstruct the experience and process the gap in their memory.

Ask for a neuropsychology referral.  A formal assessment will tell you exactly what is affected and what targeted strategies will help most.

Most of all, Brandon, give it some time.

For most ICU survivors, memory improves significantly over weeks and months.  The brain is extraordinary in its capacity to heal. Be there, be consistent, and be patient.  That is the most powerful thing you can do.

Why You Must Get All Medical Records

I say this in every single video I make.  You must have access to all of your wife’s medical records

now.  I mean all of them.  Leave no stone unturned.

• Every nursing note.
• Every medical note.
• Every medication chart.
• Every investigation result.
• Every specialist’s letter.
• Every specialist’s report.
• The ventilation settings.
• The vital signs.
• The fluid balance charts.
• The discharge summaries.

Here’s why: you cannot ask the right questions if you don’t know what has already happened.  You cannot advocate effectively for your wife if you are working with incomplete information.

The ICU is one of the most complex medical environments in the world, and the decisions made here have profound and lasting consequences.  When you have the medical records and speak with me and my team, we will go through everything with you.  We will help translate the medical language into plain English.  We will identify the gaps, the questions that haven’t been answered, the investigations that haven’t been done, and the plans that haven’t been made or haven’t been shared with you.  If you want us to, we will engage directly with the medical team on your behalf to question, clarify, and advocate.  That’s what I do. That is what my team does, and it makes all the difference.

How Intensive Care Hotline Can Help Right Now

Brandon, you said you have so much more to ask. I hear you, and I don’t doubt it for a minute.  The single most powerful thing I can offer you right now is a consulting call with me.

In that call, we will go through the medical records together, map the clinical picture, and identify exactly what questions to ask the treating team.  If needed, my team and I will get on the phone directly with the ICU or specialist team and advocate alongside you.  You have a number of options.  I offer a free 15-minute consultation call to begin with, followed by paid consulting and advocacy options.

Intensive Care at Home: An Option for Long-Term Ventilation

Let’s also briefly look at Intensive Care at Home.  I want to talk about something very important for the longer term.  If your wife’s recovery means she cannot be weaned off the ventilator, requires a tracheostomy, or needs ongoing non-invasive ventilation such as BiPAP (bilevel positive airway pressure) or CPAP (continuous positive airway pressure), she does not have to stay in hospital indefinitely.

Intensive Care at Home provides full intensive care nursing support in your own home.  We send intensive care nurses into the home 24 hours a day to provide a genuine alternative to a long-term stay in intensive care.

Our services include:

• Ventilation with a tracheostomy.
• Ventilation without a tracheostomy.
• Tracheostomy care without ventilation.
• Non-invasive ventilation, including BiPAP and CPAP.
• Support for complex cardiac patients.
• Palliative care.

We are third-party accredited and operate in all states and territories around Australia. We also help clients in the United States, the United Kingdom, and Canada.

We support ventilator-dependent patients 24/7, including those requiring invasive ventilation through a tracheostomy, non-invasive ventilation through a mask such as BiPAP or CPAP, and tracheostomy care without ventilation.

We can help patients transition out of ICU and return home with their families, where they belong.

For your wife, Brandon, if the recovery path involves any of these things, please know that living at home with full nursing support is a real option, not a fantasy. It is a third party-accredited, funded option.

Go to intensivecareathome.com to learn more.

Final Message to Brandon and ICU Families

Brandon, you are clearly a remarkable husband.  You saved your wife’s life. Now you’re doing everything you can to help her recover.  You are asking the right questions. You are reaching out for help, and you are fighting for her. Keep going.

Get all the medical records, book a call with me, bring familiar things to your wife’s bedside, play her favourite music, be patient, and know that you do not have to do this alone. 

To everyone else watching, if this video has helped you, subscribe to my YouTube channel, click the like button, click the notification bell, share the video with any family who has a loved one in ICU, and leave your comments.  Let me know what you think about Brandon’s situation and what questions you have so that I can keep creating videos like this.  Every week, I publish new videos to help families like yours get the answers, clarity, and advocacy you deserve.  Go and book a call with me now at intensivecarehotline.com. Click on the Schedule Appointment button, call me on one of the numbers at the top of our website, or send us an email at [email protected].

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over five years in intensive care. And I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. And I can very confidently say that we have saved many lives with our consulting and advocacy, because of our insights, and you can verify that on our testimonial section at intensivecarehotline.com and you can verify it on our intensivecarehotline.com podcast section, where we have done client interviews.  And because our advice is absolutely life-changing, right?

The biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for, they don’t know what questions to ask, they don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care. And that’s why we help you to improve your life instantly, making sure you make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the best care and treatment always. And that’s why you can join a growing number of members and clients that we have helped over the years, saving their loved ones’ lives.

And that’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. And I talk to you and your families directly. I handhold you through this once-in-a-lifetime situation that you simply cannot afford to get wrong. And when I talk to families directly, I also talk to doctors and nurses directly, asking all the questions that you haven’t even considered asking but must be asked when you have a loved one critically ill in intensive care.  I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you can get a second opinion in real time. We also do medical record reviews after intensive care, so, if, in case you have unanswered questions, if you need closure or if you are suspecting medical negligence.

We also have a membership for families of critically ill patients in intensive care, and you can become a member if you go to intensivecarehotline.com. If you click on the membership link or if you go to intensivecaresupport.org directly. In the membership, you have access to me and my team 24 hours a day in the membership area and via email, and we answer all questions intensive care-related. In the membership, you also have exclusive access to 21 e-books and 21 videos that I’ve personally written and recorded. And all of that will help you to improve your life instantly, make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the best care and treatment always.

And all of that you get at intensivecarehotline.com. Call us on one of the numbers at the top of our website or simply send us an email to support at intensivecarehotline.com with your questions.

If you like my videos, subscribe to my YouTube channel for regular updates for families in intensive care. Click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next, what questions and insights you have from this video.

I also do a weekly YouTube live
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ICU_FAQ_Grand_Mal_Seizure_Cardiomyopathy_Memory_Loss

Thank you so much for watching.

This is Patrik Hutzel from intensivecarehotline.com, and I will talk to you in a few days.

Take care for now.