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Caregiver Toolkit: Caring for a Child with Mental Illness




As the Caregiver of a child with mental illness, you have a great responsibility. But then, you probably already know that! You are the observer, symptom tracker, advocate, medication manager, grounding presence, and above all, the person who continues to love your child unconditionally, no matter what!


Your Child's Medical File

One of the most important things you can do be an effective caregiver is to create and maintain a comprehensive file of information about the child for whom you are providing care. There are a variety of ways to create and maintain a patient file, including paper, electronic, or a combination of both. You can keep this information in any form that works best for you, although most people simply put it in a binder or folder. Those plastic folders with several dividers and a clasp closure work well, because then you can organize the paperwork by age or year, or by subject (medication, diagnoses, hospitalizations, etc.). It doesn’t have to be pretty, it just has to work for you.


What’s really important is that your file is super important because it provides a chronology of your child’s journey through early symptoms, diagnosis, and eventually, stabilization. It will make it much easier to recall things when you’re at the psychiatrist or therapist, providing easy access to information that can be efficiently updated and shared when needed. One more thing – you don’t need to put everything in there – just the milestones, expecially if your child’s illness starts early in their childhood.


Also, make sure you keep any IEP or 504 Plan documents in that file. You will undoubtedly need them when and if you change schools, or if your child has a long-term stay in a hospital ward or other residency.


Keep the File in a Safe, But Memorable Place

Select a place to store the file that is logical and easy to accress, and where you can grab it quickly in an emergency or on your way out the door to an appointment. Also, do your very best to keep that file up to date. An outdated file won’t do you much good when you are standing in the emergency room at midnight!


Be Ready for a Hospital Stay

It’s also a good idea – especially if your child is very unstable and suicidal – to keep a bag packed with CLEAN clothes that don’t have any ties, zippers, or buttons. And no underwire bras for the girls/women. Think sweatshirts and sweatpants (no ties or drawstrings), t-shirts, yoga pants, etc. A journal and maybe a sketchpad or book to read or other items for coping strategies – but of course, no electronics.


And don’t forget to include personal hygiene items, although sometimes you have to wait for doctor approval to use anything that they don’t give you. Also know that your child will, most likely, wearing a hospital gown (and pants) until the doctor signs off on wearing his/her/they’re own clothing from home, too.


Tips for when a crisis occurs . . .

  • Make sure your family and close friends know exactly where that file is! You might even want to keep a note on the fridge that gives its location.

  • Most places will allow you to bring in food for your child, but it has to be in a closed container, and they will need to check it first. The psych ward is not a fun place, so food from home or your child’s favorite restauarant is a wonderful thing you can do for them during a difficult time.

Download the Caregiver Toolkit

You can download our Caregiver Toolkit on this site which talks more about assembling your file and provides a additional tools to help you in a crisis.


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