Looking after a chronically ill child can be very physically and emotional draining as a parent. It is certainly an emotional roller-coaster filled with moments of both sadness and joy.
The physical challenges for a parent can be one of the toughest you’ll endure. You can find yourself and your family isolated and alone in these duties. You’ll also have to deal with your child’s and their sibling’s emotional needs. Plus the impact that a prolonged illness can have on the entire family and your relationship with your partner.
Self-Care Is Vital For Your Mental And Physical Health.
Self-care in this case goes beyond what I consider the normal as you also have to tackle a few other emotional issues you’re facing. In this case self-care also includes explaining to your child and their siblings about the long-term illness, helping them tackle their emotions and behavioural issues while also helping yourself.
Why would I include these in self-care?
Because self-care is all about taking care of yourself and helping your child with their issues will of course help you. You can not hide their illness or it’s affects on everyone in the family unit. This is avoidance at best and will only impact your stress levels and mental health detrimentally.
Self-care will of course for you and your family probably have to adjust to accommodate your ill child. But it doesn’t have to go completely by the wayside either. Often times we neglect ourselves in favour of our child. Failing to realize that neglecting ourselves impacts not just us but them as well.
How Do You Explain Long-Term Illness To A Child?
First things first, how do you explain an illness to your child and their siblings? With honesty, this is vital. Yes you do have to use age appropriate language. There is no way you can hide how worried, fearful or stressed you from your children. They will pick up it no matter how well you think you are hiding it.
It is important for your ill child to understand their illness and what is happening or going to happen in relation to this. You need to explain things as, or before, they happen. Make sure you understand what everything means. It can get complicated at times but there is usually a specialist nurse who will explain everything to you. That includes explaining medical tests, treatment, who the doctors and nurses are, etc. Nothing will frighten your child more, or their siblings, than being kept in the dark.
Be clear in your answers to questions they have. But allow these questions to arise naturally and from them. So never force any questions and use age appropriate language.
Be as reassuring as possible about any treatments and that you will be there with them. Most hospitals ask parents if they wish to tell their child alone or with the help of medical professionals. The decision is of course yours as the parent.
Helping Your Child Tackling Tough Emotions (including siblings)
Helping any child deal with difficult emotions can be quite the challenge for parents. But now you are adding a long-term illness to the mix and that makes things harder for everyone involved.
Remember you are not super-parent and you don’t have to be one either. In fact they don’t exist and you can at the end of the day only try your best. So if you feel you or your partner need help or one of your children needs help dealing with emotions, or any part of what is happening, please ask for support from your GP, or medical professionals in the hospital. They can refer you on to a therapist or you can self-refer.
Good communication is vital.
As you can image your sick child and any siblings will need support expressing their feelings around what is happening. An illness never happens in an isolated manner and every member of the family is affected. Giving the child opportunities to express feelings, concerns and fears is very important. Using active listening techniques is more important now than ever. (I discuss this further here). Communications doesn’t always have to verbal and you can use music, stories, writing, poetry, film, drawing as an outlet.
Always remember to remind children on a regular basis they are not responsible for their or their siblings illness. Ask your child what their experiences are like and listen carefully to the respond. Again not all responses will be verbal and you may need help interpreting this.
Some issues may come out as nightmares, school problems, sleep difficulties, reverting back to an earlier age, getting more clingy etc. Never force a conversation. It has to come up naturally and on the child’s terms not yours.
Watch your perceptions here, especially with teens.
Many questions may not be easy to answer and it is better to be honest and say you don’t know if that is the case. It doesn’t matter how old your child is they will need time to adjust to a diagnosis. Sometimes we forget that a teen may have a harder time than we expect here because of our perceptions. At the end of the day remember that a child just needs your love and the knowledge that you will be there for them no matter what.
It is not unusual for you and your child to go through a whole range of emotions at the start. These may include feeling sad, anxious, depressed, angry, afraid, or even to deny that they are sick. Please think about getting professional counselling if you see signs that these feelings are interfering with your or your child’s daily function. Or if your child seems withdrawn, depressed, has trouble with eating and sleeping unrelated to any illness.
Handling Behavioural Issues In An Ill Child
This is perhaps the most trickiest for parents to deal with. As a parent of a sick child we will give them TCL. We can let behaviours that we would normally set limits on slide. But children need routine and still need limits set on their behaviour. Using the excuse that my child is sick, so, I can not discipline them, is nonsense. It will also be one sure way to cause further problems with siblings.
This means we have to stick to normal routines as much as possible. Avoid overindulgence and keep to the house rules. Giving in will only mean that returning to a daily activities for you child will be harder once they are better. So once your child leaves hospital getting back to normalcy is the goal.
How To Deal With Siblings
Dealing with family dynamics when you have a sick child can be like traversing a minefield at times. The old normal will be exchanged for a new normal routine that includes hospital visits, GP visits, medication times, etc.. Everyone’s schedule has to change and at times you may feel very guilty neglecting your other children.
Family and friends can help here, especially if your child is close to anyone of them. Accepting help can mean you can take time out to be with your other children. You will feel guilty if your sick child can not attend family outings. But you also need to balance that with grabbing what time you can with your other children.
Siblings should continue to attend school and their usual recreational activities. This can be very hard as you are trying to deal with hospitals etc. But engaging family and friends at this time will help your child keep their normal activities and school routine.
Remember to keep the school informed as to what is happening. They can keep you informed about any behavioural changes and will understand better if your child has sudden outburst or breaks down crying. It’s common for siblings to feel angry, sullen, resentful, fearful, or withdrawn. Aggression at school or home is also not unusual. Please be aware that your child can feel left out because of the demands of their sick sibling. Reassurance and some quality time will go along way to help resolve this.
It may also help if you include them in hospital visits, meeting staff etc. It will help reduce their fears and make the whole process understandable. But you need to do this with awareness of their age and maturity.
Self-Care For You As A Parent
The stress involved in caring for a child with an illness is considerable. So stress reduction is vital. Plus so is keeping your basic self-care and healthy boundaries in place.
Self-care at this time has to involve much more than simply looking after yourself as I said at the start. It means taking care of or reducing as many worries, fears and feeling of guilt you might experience.
Ideas To Try.
- Keep a journal it will help you get your feelings out. There is nothing worse than keeping things locked in our head. When we enter that negative think cycle we end up damaging our self-confidence, feeling stuck, stressed, or anxious. A quick brain dump can help you get it all out. We can then use this exercise to help us go back to sleep or to pick the next quick step (short task) that is important to achieve. This will help reduce your stress and aid your sleep also. A brain dump is simply a writing everything out of you head and down on paper in a short space of time. You can start with to do lists, appointments, phone calls you need to make, etc., then add in any thoughts and emotions that are playing on your mind. Don’t hold it in, get it all down on paper instead. You can also use these to plan your week or your next activity.
- Practice meditation and steal moments to relax when you can. You can also try the 3 minute breather as a great quick on the go stress relief technique. It can be used in any situation when you feel your stress, anxiety, or emotions rise that you need to calm down quickly. It is based on the 7-11 technique and you try a free starter session here. I recommend it if you have a difficult time meditating as you can complete the whole thing in 3 minutes.
- Don’t be afraid to have fun with family and friends. Take time to laugh everyday if you can. Even reaching out for a quick chat about something other than your child’s illness can help.
- Take time for your relationships: family, friends, partner, children. Recognize that everyone deals with illness and stress related to illness in different ways. Make time to connect with others as sometimes we tend to withdraw in times like this.
- Ask for support: it’s okay to rely on family and friends, plus accept help when offered. You can’t do it all by yourself and you are certainly not alone. We all need 4 Types of social supports on a daily basis, these include. Emotional support; Tangible support; Informational support; Social needs. You can find out more about these types of support here.
- Make sure you have help if you need it in terms of finances. So ask about your rights and entitlements for social welfare, medical cards, etc. If you are having financial difficulties then speak to MABS (Ireland only, there may be a similar organisation where you live) they can help you get your finances in order and speak to any creditors. Asking for this kind of help allows you to have one more thing you don’t have to worry about.
- Join support groups for parents. These groups are a wealth of information and support for you now. Don’t get caught up in any politics within the group you don’t need that now. Just take what information and support you want and leave the rest. There are a number of national organisations that will help, so please google your child’s illness or diability to find them.
- Utilize support from the hospital and local professionals. You are part of the team that is there to look after your child. Keep a small notebook to use when you are having meetings about your child’s treatment. Use it to make notes of questions you might have and responses from professionals. If you don’t understand anything there is usually a liaison nurse that you can go to to check anything you don’t understand with. It may also be a good idea to bring someone with you to write down answers for you while you speak to the medical team.
- Break any problems into manageable parts. Treatment may take time. But you need to plan your life to go around this. At first things will be overwhelming. But then it settles down. Make sure to use a planning on a weekly or monthly basis to support your schedule as it can be very hard to keep track of everything.
- Get counselling if you need it. It’s important to recognize when you are struggling. It’s okay to ask for help. So please speak to your GP if you need to and they will refer you for counselling.
Work With Me.
Remember you are allowed to ask for support. No one is an island. If you need extra support then you can also work with me. We all struggle with stress and overwhelm from time to time. If you find this has become a problem for you and you’d like some support then schedule an appointment with me.
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