If you’re caring for a child with a chronic condition the pressures do tend to take on a predictable shape.
See if you recognise any of these-
I am distressed my child is suffering.
I worry about the medications and their side effects.
Finding Health Professionals
I find it difficult to navigate the health system and find the people I need.
I feel overwhelmed by the pressures and costs of medical appointments and tests.
I am stressed by having to juggle my job with my carer responsibilities.
I worry that my child should be having therapies but I can’t find the money and the time.
I am concerned about my child’s mental health.
I feel anxious about how this medical condition is going to affect my child’s future – education, employment and relationships.
I am worried about the impact of all this stress is having on my health, my marriage and my other children.
I notice that the more I need to de-stress the less I seem able to do the things I enjoy.
I’m spending more money or drinking more than I should be and I worry about that.
Because we’re stressed my partner and I seem to argue more.
I notice I am withdrawing socially because keeping up the brave front is too much effort.
I don’t know whether, to tell the truth- I don’t want to be depressing.
I have extended family but I don’t seem to be able to tap into that support.
I find it harder to leave my child because I don’t trust people to understand the situation and what my child needs.
I need support but hate the idea of asking for it and feel bad about needing it.
I seem to spend so much time up at the school explaining things – it’s exhausting.
The Sense of Wrong Doing
It seems other people have perfect lives with no health issues. Sometimes I feel like I’ve done something wrong or failed somehow.
Where To Start
I know I need to do something, change something, but what?
Any of those familiar?
I’ve got a couple of thoughts about all of this.
This is a difficult situation you are in. It might help you to set some boundaries to help manage the stress of it.
I’m not saying this will solve all your problems but it might help you feel calmer more of the time.
Medical Records Folder-One Stop Shop
Keep all the paperwork in a highly organised folder and take it to appointments and the chemist.
– Buy business card plastic pages for all your medical contacts
– Ask your chemist for regular medication printouts so you always have current lists & dosages
– All the filing and labelling will help you feel more in control, in charge, informed.
A Book To Open & Close
Whenever you think of a job, an appointment or a task put it in your worry book. Set aside an hour a week – maybe a lunch hour to do all the jobs on that list. Put the book away until your next weeks working session. Squash all the medical business into a small space of time – that is all it’s allowed to have. This will save your emotions and energy.
Once a week set aside an agreed time – say 30 mins to discuss the worry book with your partner. Maybe you talk while you walk to the park. Make decisions together – then put the book away. Try not to talk about things outside your worry time. This reduces stress and will make you feel more in control and less overwhelmed. You might even include feedback from doctors appointments in the list of things to discuss. Again this is about containment and conserving emotional energy.
Focus On What You Can Control – Self Care
You have control over how well you look after yourself. Start little and build on it. Use your favourite cup. Plant flowers. Find ways to delight and amuse yourself. You can get through this easier if you take great care looking after yourself. Play. Finding playful fun things will recharge you. Notice what works and do it more. Let yourself be very important. This will help the whole family.
Talk To Someone
Find some affordable counselling and use it if you find it helpful. Work on strategies for each of the worries on your list.
Keep A Stress Register
This sounds silly but it is surprisingly useful. Develop a work in progress list about things that make you feel stressed, helpless, super sad or just crazy. Study each entry and ask yourself what is one little thing I could do to make that situation less stressful? There usually is something that you can do. Even something very small like – set a time limit, take someone with you, delegate to someone else, request a change, set up a reward, make something a game etc. Exercising a little control makes difficult things feel more manageable. So work on that list – you might get some surprises even doing that part. Then ask that vital question – how can this be better for me?
Give Clear Specific Information
This point leads on from the stress register but it applies specifically to your schedule and asking for help. Look at the week ahead on Sunday. Work out what kind of things that would ease some pressure on you. Be brave enough to give people who care about you that specific information. Make sure they understand exactly what you need and why.
For example, “Jane I need a favour. I have to take Mary to a physio appointment on Wednesday afternoon. It would really take some pressure off me if you could take Max home with you after soccer. That will mean that I won’t be rushing in the traffic worrying about being late. Would that be OK?”
One little pressure is gone. Keep going. See how many little pressures you can take away.
I’m not saying you’ll always get a positive response but being clear about what you need is a good place to start.
Trust your friends and family and know that on another day they can turn to you.
It’s Just Life
This is what I say to myself over and over. It’s meant to remind me that even though I might be feeling overwhelmed at times – this is all just life. Life has tough bits. Most people will face some very tough bits in their life at some point. There’s something about the phrase – it’s just life – that takes the drama away and reminds me that in a weird kind of way this is all just normal life. It makes me feel calmer to think like that. It switches off the sense of emergency which gets in the way of clear thinking and creative problem-solving.
I’m sure you have more ideas than the few I have written here. Please send them in and I’ll add them.
Take heart lovely people, we are all in this together. x