ICU Survival For You
ICU is a place of critical and intensive care for your child or dependant. You are in the best place to get the right care for your child, but how will you look after you? How will you cope with ICU? Here are some tips on how to stay sane in ICU:
It is crucial to have good communication with doctors, nurses and medical staff for the following reasons:
- The nurses do the dayto-day caring for your child. It is good to make connections with the nurses; they can offer you support advice and a wealth of knowledge from their experience. It may also help you to feel more confident leaving your child under their care.
- It is important to have clear dialogue with the doctors to communicate what you want for your child’s health. It is important that you fully understand the prognosis, diagnosis or action plan for your child’s care or medical intervention.
The nurses in ICU do a debrief at the beginning and end of their shift, you may find it useful to adopt a daily debrief with your partner/family member/ close friend. This will help you to break down what happened that day and what needs to happen next. Other benefits include:
- A day can feel like a week in ICU, a debrief can help you to digest, process and understand the information that may change on a daily basis.
- Emotions run high in ICU, a debrief can give you time to let the other person know how you are feeling. Recognise that what you feel and what you really think can be different things.
- The debrief can be as long or short as you need. You may be too exhausted to have an indepth talk. The important thing is to allow each other to speak and listen without judgement, guilt, or trying to solve each other’s worries.
- You might identify gaps in information or your understanding of the situation. Write a list of questions that you can ask the following day.
Keeping a diary
Life in ICU can be busy, confusing and traumatic. It’s good to keep a diary for the following reasons. You can:
- Take notes on procedures/ investigations that need to be done.
- List words or conditions to remember.
- Jot down articles to look up or things to research.
- Keep a record of settings for medical equipment.
- Name of the nurse on shift.
- Use the back of the notebook as a personal diary, it might become a therapeutic part of your day. This can also be cathartic to read over in the future and see how far you've come.
The outside world
Here are some useful ideas to keep your loved ones updated:
- Write, copy and paste standardised messages.
- Designate one person to update your loved ones.
- Set up a message, Facebook or Whatsapp group to give collective updates.
- Set expectations that you may not reply straight away. Let people know this upfront and then you won’t need to feel guilty that you have a list of people that you haven’t replied to. A simple ‘X’ can be enough of a response to let people know you’ve read their message.
It’s important to keep people informed but you need to conserve your energy for yourself and your child’s care.
It is crucial to ask for a more simple or in-depth explanation of the situation if you don't understand the medical language, what your child’s illness/condition means, or what the plan of medical intervention will entail.
Ask as many questions as you feel you need to, and if you still don't understand then keep asking until you do. As one mum said, the only stupid question is the one not asked.
If you are naturally unconfident, then ICU will give you the opportunity to develop your confidence. After all, you are speaking on behalf of your child and there is no better advocate than you.
On a side note, if you are a parent reading this who is expecting a stay in ICU with your child then it may be helpful for you to visit your local hospital to familiarise yourself with where you will be spending time. Knowing what to expect prior to your stay in ICU may help you to get through this unknown period with more confidence.
If you are naturally patient then you can draw on your reserves during your time in ICU. However, if this is something you struggle with then you will need to learn the skill in order to cope with your spell in ICU. Here are some tips:
- Recognise that things can change quickly in ICU, it’s important to be flexible.
- If you are receiving poor communication from medical staff then you must ask them for more informative.
- Be politely assertive and ask for what you need for your child’s wellbeing.
- Don’t let yourself get to boiling point, talk to the medical staff as you go along.
- Remember it is harder to listen to a shouting voice.
- Take some time out from the unit and reconvene later.
Looking after yourself
Worry and stress not only impact your waking day but can also affect you when it’s time to sleep. Here are a few ideas to switch off:
- Write a diary entry or a to do list before you go to bed to reduce your mind going over the situation while you’re trying to go to sleep.
- Rest as much as possible while your child has one to one care in ICU, you may need the energy for the coming weeks/months that follow.
- Give yourself time before bed to unwind. Try to come off gadgets and screens an hour before you go to sleep.
You may have to make big decisions on the following day and sleep deprivation can cloud your brain, your mood, your coping mechanisms and decision making ability. Sleep really does matter.
It is important to look after yourself from the inside and be conscious of what you’re eating. In hospital you are more likely to eat on the go. Chocolate and sugary snacks may seem like an easy option for an energy boost but after the sugar highs come the lows. This is not about being weight conscious, but food is energy and this is something you need in abundance during your stay in ICU. Things to consider for longer stays in hospital:
- Deliveries of food to onsite accommodation or get a friend/family member to accept a delivery for you and bring it to the hospital.
- Do a small food shop in a local grocery or supermarket. You can use it as your time out from the unit and save money at the same time.
- Ask friends/ family to bring food for lunch or tea when they visit or bring a homemade meal.
Depending on the length of stay, diagnosis or where you are on your diagnosis timeline you may have periods of down time and need other forms of stimulation or things to focus on. These could include:
- Catching up on social media/ current affairs on your phone.
- Downloading a movie to a laptop or tablet. This also can be used to entertain your other children visiting a sibling in ICU or for your child who’s ill. Remember earphones if necessary.
- Read a book, but choose the genre wisely.
- Download an audio book.
- Listening to music. Songs can be very powerful and help you process your emotions and get you through a tough day.
Time can pass slowly in ICU but it can also go by in a flash and you realise that you haven’t eaten, been to the toilet, or had any fresh air for hours or days.
At an appropriate time, take yourself for a walk outside or just sit/stand and breathe in some fresh air. You’ll be surprised how good it can make you feel and it may help you to see something more clearly, or from a different perspective.
If it is a long haul stay in hospital, at some point you may want or need to go home. Emotionally, you may need to reconnect with the old you and your life before ICU; it is also a great comfort to be in a safe and familiar space. Use it as an opportunity to get some time out, a change of clothes or time it with a delivery of food or equipment you might need for your return home with your child.
One parent advised that it’s ok to spend time with your other children, they need you too.
Ask a family member or friend to sit with your child if you are not comfortable leaving them with the nurses. It is more than likely that your loved ones will jump at the chance to help and feel useful.
If it is not possible to go out of the hospital building then at least leave the unit and go for a walk around the hospital. Combine this time out with eating away from the bedside or incubator. It’s important for you to have some space from ICU and have a change of scenery. Nurses’ handovers are usually private and are a perfect opportunity for you to have time out. Take advantage of this time and leave the ward.
Being True to Yourself
Some parents get through ICU ok, some escape feeling a little bruised, and many leave ICU feeling traumatised, possibly still in shock from what they have been through with their child. Due to the nature of intensive care and the fact that your child is very ill, experiencing time in the unit can be life changing and often even change you for life. One mother said that she will never be the same again, another said she hated every minute of her time in ICU, while some shared that they came out the other side stronger as a person. Here is some great advice from some wonderful parents:
- See past the tubes and just enjoy what you can, like giving bed baths and massages.
- Accept that some days you just want to curl up in a ball and hide away.
- Cry lots! Acknowledge that crying is ok.
- Cry lots… and maybe laugh too. It may have been down to shock or hysteria but I remember my husband and I laughing lots in ICU. I think it's one of the things that got us through.
- Never be worried about being seen as an 'emotional' or 'anxious' parent by any of the medical team. They are your baby, you can not get more personal than that for a parent. Own those labels proudly.
- Don't sit for hours at a time watching machines and numbers. It won't change anything.
Create a Routine
No two days are ever the same in ICU but, if you can, it is good to develop some kind of routine where possible, factoring in eating and time out from the unit.
Make sure you find enough time to rest. When your child is resting you should too, otherwise, you don't get any down time. We are creatures of habit and even if you don't like routine you still need to eat three times a day, get changed, showered and brush your teeth.
There are a couple of options for accommodation during your stay in ICU, see below:
‘Ronald McDonald Houses give families the chance to remain close to their child whilst they are in hospital. Their location, as close as possible to one of fourteen specialist children's hospitals across the UK, means that families can be by their child's bedside in a matter of moments, whilst maintaining a degree of normal life and reducing emotional and financial strain. To ensure a sense of closeness, where possible, a direct telephone line connects families' rooms in the Ronald McDonald House to their child's ward.’ www.rmhc.org.uk
If a room in Mac House hasn't been offered to you then ask the nurses on ICU to put you on the waiting list.
If you are commuting from home or just need a good night’s sleep in a big bed, with black out blinds, hotels near to the hospital often offer discounted rates if your child is in the hospital.
If money is tight then you can go home for an afternoon or night. The important thing is not to feel guilty for leaving your child in ICU. You need to keep well internally and externally to be able to give your child the best care.
Connecting with your child
It is often difficult to feel connected to your child if they are seriously ill, sedated or in a lot of pain. It is all too common to feel that you cannot help them, save them or even fix the problem.
Many parents have said that getting involved with their child’s daily routine makes them feel more connected to the child and feel more like their parent. This is particularly important for new born babies where the opportunity to bond with the child hasn't been possible.
When you feel comfortable, get involved in the care as much as possible. Ask the nurses to train you where needed and let them know you would like to bath, change or feed your child. Ask for a care plan, write down what you want your daily involvement to be and ask for it to be shared with the nurses on the handovers.
Company in ICU
It can be a lonely time in ICU, especially if you are struggling emotionally to deal with the situation. A partner, family member or friend can provide great support, whether they are your sounding board, a shoulder to cry on, or just someone by your side. You may also need an extra pair of ears to listen to important information.
Your neighbours in ICU can also be a wonderful lifeline and help you to get through your day. Although your children will most likely have different health conditions, as parents you can recognise similar feelings and emotions to one another. You may just be able to offer each other a smile from a friendly face and sometimes become friends for life, bonded through adversity. One parent advised that it is important not to take on other people’s problems in ICU, listen with a caring ear and advise when necessary but it is not your responsibility to solve their situation.
It is a personal choice about how many visitors you have during your stay in hospital. You can decide how many is enough and this may change depending on how ill your child is, or the duration of your stay. It is also ok to refuse visitors if you so wish.
If your child is in ICU for a long period of time you may need to ask people to keep visiting. Initially you may have an influx of visitors but don't be surprised if this calms down the longer you stay there. Here are some other things to consider:
- Spread your visitors out so you don't become overwhelmed, or condense the visitors into a couple of days and get it out of the way.
- Plan the visits so they coincide with meal times so they can either bring you food or you can go to the café for your daily time out of the unit.
- Factor in time to do your child’s daily cares and possible meetings with consultants.
- Don’t expend too much energy on your visitors, you may want to update them on your child’s health but sometimes its also ok to switch off and talk about normal things too. Enjoy your time together.
- You can also say some topics are off limits. Life in ICU can be really tough and you can’t expect yourself to deal with the outside world or conversations like you usually would.
- Remember, visiting doesn't have to be about talking, you can ask them to come and sit with you and possibly not even chat, as you may just need their company.
If your life has turned upside down due to your child falling ill and as a result you are struggling to deal with the situation then you may need some additional support. Even if you don’t feel you need it, don't understate the trauma you may have experienced and the effect it can have on your mind and body. Sometimes support is offered to you from the medical staff but often it must come from you. After all, if you don't ask you don't get. Here are a few avenues you can take:
- Ask the nurses who is the clinical psychologist and then visit them regularly during your stay in hospital and possibly after your child has been discharged.
- Speak to your local doctor. There can be a long waiting list so don't leave it till you are at breaking point. Keep checking in with yourself, and be honest with others if you are struggling.
- Seek support from professionals who are attached to your child’s care, e.g. community nurses, health visitor or social worker.
Asking/ accepting help
No parent is an island. You need support and it’s ok to ask for and receive help.
When you are faced with a difficult time people often say ‘let me know if I can do anything for you’. A natural reaction may be to decline politely but it’s ok to actually take them up on their offer. Practical help could include:
- Washing clothes.
- Being there to receive or sign for a delivery food, parcels or medical equipment if health needs are ongoing.
- Bringing food into hospital, Mac House or to your own home. Give them a key so they can get in when you aren’t there and put food in the fridge or freezer.
- Walking your dog, feeding your cats or temporarily adopting your pet.
- Caring for other children at home doing school drop offs or pick-ups, taking them after school and feeding them tea. Looking after them for the day if they are pre-schoolers or for a day over the weekend if needed.
- Being there on the other end of the phone for shouts, tears and laughter.
- Cleaning your house.
- Picking up/ shopping for necessities for your child in hospital nappies, wipes, cleaning products, clothes, toys or entertainment for your child.
Sometimes you need someone to look after you so you can look after your child. You would do it for someone else, and if you wouldn't have before then you certainly would now. Don't struggle on your own. Be strong in yourself, as there is a fine balance of leaning too much on other people to keep you going. But in crisis moments there is no such thing as people helping too much.
Emotionally we can ask for help but we must develop a strong self and inner monologue to keep ourselves strong to our core. There is nothing like a crisis to show you how strong you really are. Even when you feel like you have nothing left to give you can tap into another pool of strength, energy or wisdom.
Our will to survive is instinctual, we are all stronger than we look and feel. That goes for our children too.
A message from one parent to another:
‘Hi, just take one day at a time, miracles can and do happen.
Know that your child is in the best hands, even at the times you may think they’re not, we are always looking for something, or someone to blame. Don’t be afraid to speak out and voice your opinion, even if the questions you have sound silly, remember everything you’re going through is a new experience, after all this is your child.
Try to take small steps. You will most likely be bombarded with lots of negative thoughts. Try to remain positive, even when the staff are negative, remind them they are doing great work, and most of all let your child know you are there with them. There is great healing power in your love. Hold your child when you can, cry with them, reassure them, you are there every step of the way, give your child something to live and fight for, YOU! Be thankful for small mercies, talk to people in a similar situation as yourself, share your experiences, hope this helps a little, stay open, love love love.’ Brian