Looking After Yourself
The rest of your life does not stop when your family member is admitted to the ICU. You may still have work commitments, a mortgage to pay, a house to maintain, or other family and pets to care for. It is important that you continue to sleep, eat and exercise.
- Physical activity
- Spiritual Support
- Informing family and friends
- Managing the helpers
- Helping children who have a relative in an ICU
- If the patient does not survive
Family and friends of a patient in the ICU can become exhausted. Sleep is important so that you can think clearly. The most restful sleep is often in your own bed or familiar environment. There may be a bed available in the hospital for families to use while your family member is critically ill in the ICU. Even if you have difficulty sleeping soundly, just lying down will provide you with rest. Remember the healthcare team is attentively caring for your family member even at night, so it is okay to leave to get some much needed rest. The health care team will monitor and care for your family member while you rest, and will keep you informed of any changes in your family member’s condition.
Other families have reported that exercise helps them cope with the stress of having a family member in the ICU. A short walk outside the hospital in the fresh air can help you re-charge and regain focus.
It is important to take time for meals. Even if you do not feel hungry at meal times, try to have something small and nutritious, like a piece of cheese with toast or soup. The hospital is a very dry environment so remember to drink water.
When your loved one is unwell, you may experience many emotions, and may even begin to ponder life’s ‘big questions’ or explore your own sense of spirituality. If you have a spiritual and/or religious practice or community of support, it can be helpful to continue these practices or rituals and reach out to people who can support you. Most hospitals also have a multi-faith spiritual care professional who is available to support you in your spiritual and/or religious concerns.
Informing Family and Friends
Keeping your friends and family informed about your family member’s medical condition can be very stressful. It is emotionally draining and exhausting to repeat the details of the latest treatment progress and test results every day. It may help to take notes which you can share with others. Consider asking a family member to send group updates via emails, websites (such as www.caringbridge.org) or a blog.
Managing the Helpers
Your friends and family may wish to help you, yet often do not know how best to do so. While this network of support can be useful, the number of phone calls and visits can also be overwhelming. Many people will ask you “what can I do?” It can be quite helpful to share with them practical ideas on how they can help (for ideas, see: http://www.cancer.net/coping-and-emotions/communicating-loved-ones/supporting-friend-who-has-cancer). Some people have had friends and family members assist with the routine activities that still need to get done while you are at the hospital (e.g. feeding the cats, walking the dog, cutting the grass or shoveling the driveway). It may be comforting to know that these things are taken care of in your absence.
Helping children who have a relative in an ICU
You may need to consider whether a child should visit their parent or a close relative in an ICU. You should check with staff before bringing children to the unit and talk to the child about it. If the child decides they want to go into the ICU, prepare them for what they might see, including the machines, what they do and how the patient might look.
What you can tell the child will depend on their age and why their parent or relative was taken into the ICU. You can help a child deal with the situation by:
- trying to keep to their routine as much as possible
- telling the school, and any other relevant groups, that the childʼs parent or relative is in intensive care;
- explaining the situation and being honest if you donʼt know what is going to happen – if you are not sure, try to say something they can understand that will help the child feel secure and reassured, for example, ʻDaddy is very ill but the doctors are doing everything they can to help him
- encouraging them to keep a diary. It could include a brief description of each day and any souvenirs that they would like to include (such as pictures and so on). This helps the child understand what is happening and makes it easier for them to talk to the parent about what happened in their life while the parent was in hospital.
Once the patient is out of the ICU, the child may need help dealing with what happened. This can be a gradual process and can take several months. At times, it may be helpful to mention the patientʼs stay in hospital so the child knows they can talk about it. Let them ask questions, and ask them how they felt at that time. If the child is very young, they may find it easier to show their feelings by drawing pictures or acting out what happened.
Remember that children can ask very blunt questions, so if the patient doesnʼt feel strong enough to cope with this, ask another family member or friend to talk to the child about their experiences and feelings.
If the patient does not survive
Despite the best efforts of the ICU staff, sometimes patients are too ill and do not survive. A person dies when their heart stops beating or they are brain stem dead. If the doctors believe the patient is brain stem dead, they have a set of tests they must follow to confirm this. If the patient has died the next of kin and family members may be approached to discuss organ donation. Knowing the patientʼs wishes regarding organ donation can help in making the right decision for your family. Most families who agree to donate one or more of the patient’s organs find it comforting that something good will come from their loss. It may help you to talk to a bereavement counsellor at this difficult time. They can offer support and understanding for adults and children. Funeral homes may be a helpful resource in connecting you with counsellors and support in the community.