Recovery at home

Your memory of the time in the ICU might be hazy or absent. This can be from the illness or medications we gave you. Some people never recall exactly what happened in the ICU.

We suggest you write down information and refer to it until your memory returns to normal.

Many people who have been in ICU find it helpful for family or essential care partners to keep an ICU diary. This diary is used to write down what is happening while you are in ICU. It can help you to understand some of the things that happened to you that you may have trouble remembering. This diary can help you make sense of the nightmares and unwanted memories you may have from being in ICU.

You might find that your voice sounds husky. This change is probably due to having a breathing tube and usually goes away with time. Try not to strain your voice. Talk normally without yelling.

Your breathing might have changed or might not be as strong as before. You might notice wheezing, congestion, or degrees of shortness of breath. Your doctor might order medication to help open your lung passages and make breathing easier.

Keep doing the breathing exercises the physiotherapist or nurse gave you. Your breathing muscles need to get stronger to lower your risk of a chest infection.

A critical illness is stressful to both the body and the mind. It is common to have some memory problems and fluctuating moods, feeling down one day and up the next. You might feel sad, angry, or a mix of many emotions. You might have trouble sleeping, difficulty concentrating, and lack of interest or energy. These are normal reactions to illness and should lessen with time. It is part of the healing process to have these feelings sometimes, but if they persist, tell your doctor or nurse so they can help.

Sometimes, it can feel like your recovery is taking a very long time. Try to stay positive and realistic about what you can do. Ask us what you can reasonably expect to be able to do. Remember, if there is anything you are unsure about, we are here to help you.

We suggest you keep a diary or journal of your progress. This can help you focus on your goals and see what you have accomplished.

It is common to have some pain for several reasons. You might have existing or chronic conditions that cause pain. Or, you might have pain from recent surgery, injury or critical illness.

It is very important that you tell your family health care provider about any type of discomfort or pain so they can assess and treat it promptly. Medications alone or in combination with other therapies can control most pain. Managing your pain well helps you feel better and recover faster.

It is common for people to experience changes in their sleeping patterns after a critical illness. It can take time to get back to a normal sleep routine. You may find it harder to fall asleep, or you may wake often during the night. If you have trouble sleeping, try to avoid tea and coffee with caffeine at bedtime, because caffeine can keep you awake. Herbal teas may help you fall asleep. Reading or listening to relaxing music before you go to sleep may also help.

You might have trouble getting to sleep or you might wake up often during the night. Some people experience nightmares or flashbacks, these can be frightening.

If you are having any problems sleeping, let your family health care provider know so they can help.

You might find yourself feeling weak, tired, and may have trouble walking. Even though you started moving your body in the ICU, you still need time to build up your strength and endurance.

Your arms and legs might feel heavy and be swollen with fluid, making moving around more of an effort. Your joints might feel stiff and painful.

To help with this, you may consider seeing a physiotherapist in the community to regain muscle strength and mobility. If pain is stopping you from moving around, tell your family health care provider.

As a result of being ill, you could find that your appearance has changed. Your body might look swollen, or you might have lost weight. You might notice changes in your hair or in the texture of your skin. These changes are almost always temporary.

Some people comment about scars and marks left on their skin. These are the result of procedures needed to care for you. Most of these marks will fade and some will disappear over time.

While you are recovering from a critical illness, your body might need extra nutrition to help your recovery and rebuild your strength and energy.

Start with small portions and eat more often during the day. Have small meals and two or three snacks each day instead of three big meals. You can buy specially prepared milk drinks and desserts, like the ones you were given in hospital, which contain lots of vitamins and minerals. You can also speak to a registered dietitian for help with getting good nutrition as your body recovers.

You might have a decreased appetite, feel sick to your stomach (nausea), your mouth may be sore, your throat may be sore, or have difficulty swallowing. Some people notice changes in your sense of taste such as foods tasting saltier, sweeter, or taking on an unusual metallic taste. These usually get better with time.

You might find it easier to eat small amounts more often rather than eating a large amount of food at a meal. It can be helpful to drink nutritional supplements such as Boost® or Ensure® to help you get the nutrition you need.

You may have lost weight from being ill, losing muscle from not being active, and not able to eat as you normally would. You’ll begin to gain weight again as you get better, eat more, and exercise. You will get stronger, but it takes time.

Research studies have show us that family members of ICU patients may have high levels of anxiety, depression, posttraumatic stress disorders, and/or complicated grief called Post Intensive Care Syndrome Family (PICS-F).

Having a loved on in the ICU may lead to anxiety, depression, and induce posttraumatic stress disorder (PTSD) in family members and essential care partners. The unknown and often unexpected situation and the uncertainty of how the person will do in ICU can lead to mental health impacts on families and essential care partners, which may last from ICU admission of the patient until months after ICU discharge.

It’s natural to feel uncertain about returning home or resuming work after your time in the ICU. Recovery takes time, and it’s okay to feel worried about how you’ll cope.

One of the best ways to prepare is by talking with your family. Together, you can plan small adjustments at home to make things easier for you during your recovery.

Remember:

• Recovery is a gradual process. It’s normal if you can’t do everything you used to right away.
• Don’t hesitate to ask for help from friends and family while you regain your strength.
• Focus on doing things at your own pace, start slow and build up gradually.
• Finding a balance between activity and rest.
• Prioritize important activities, like work or childcare, and let less urgent tasks wait until you feel ready.
• Seeing a doctor and/or private PT in the community for specific concerns.
• If seen by PT in hospital: refer to guidance provided by PT and continue your home exercise program. PT may refer to outpatient PT or Home Health PT if appropriate.

It’s okay to lean on your support network and give yourself grace during this period of healing.

Your time in the ICU can affect not just you, but also your family and relationships. It’s common to notice changes in how you feel or how others act after such a challenging experience.

Common changes in relationships can include:

• Family dynamics: Your loved ones may have been deeply worried about you and could be overly protective when you return home. This might feel frustrating, but it often comes from a place of love and fear.
• Understanding each other: You might not feel the same interest in hobbies or activities you used to enjoy, which could confuse your family.

If these changes cause tension, try having open, calm conversations. Explain how you’re feeling and what you need. Sharing your thoughts can prevent misunderstandings and help your family know how to support you.

It’s also normal to have gaps in your memory from your hospital stay. This can feel confusing or even scary. Talking with your family about what they remember about what happened in the ICU, how they felt, and how they coped can help you piece together the experience.

If your family kept a diary during your time in the ICU, consider going through it together. Reading their reflections can help you better understand their journey and your own.

When you are home, you can speak to your family doctor or family nurse practitioner about how you are feeling. They can help refer you to other services if you need them.

Free or low cost counselling and virtual mental health support:

• Virtual services available to British Columbians who are experiencing anxiety, depression, or other mental health challenges available here.