Category: Caregivers

Self-Care for the Caregiver

1/5/2016

by Amanda Painter, South Chapter Coordinator

The job of caring for a child with food allergies is stressful. Researching food, driving to 3 different grocery stores to find safe brands, extra meetings at school to ensure safe accommodations, phone calls about what snacks will be served after soccer practice…the list is endless.

Then add the anxiety. The what-ifs. The worry of what could happen if the wrong food is eaten. Will you be confident enough to treat when needed? What if a reaction occurs and you aren’t there to treat your child? Is your child being socially isolated, teased or bullied?

Managing food allergies is a heavy load.

As caregivers, we have to remember to stop and care for ourselves as well. This is incredibly difficult for some to do. You must protect your own health - mental, physical and emotional health.

You are important.

You must nourish yourself on a regular basis. Developing a self-care routine takes effort. I suggest you start by setting small goals. Just take a moment to relax and breathe. Find 5 minutes each day and a place of peace or stillness. Unplug from technology and social media. Too much time online (reading scary anaphylaxis stories, for example) can cause unnecessary anxiety. Let go of the thoughts of navigating birthday parties, the items you forgot to buy at the grocery store and all of the what-ifs that cross your mind. Yes, all of those thoughts are important, but so is your health.

Search for something that allows you to turn off the worries in your head. It could be going for a walk, enjoying a cup of coffee while reading a book, meet a friend for lunch. Once you have established something small, build on it. Schedule a monthly mom’s night out, join a gym or find a yoga class (and attend regularly), plant a garden, take painting classes. Find something that you enjoy and give yourself permission to enjoy it without feeling guilty.

Ensure that you get enough sleep and have a healthy diet. We often focus so much on what goes in (or doesn’t go in) our children’s bodies that we neglect our own intake.

Ask for help.

Trusting others is often a struggle for parents of kids with food allergies. I have heard many mothers state that they trust no one to watch their child. In some cases, that even includes her spouse and extended family. I highly encourage you to find a way to do it though. Who else is capable of caring for your child or preparing food for him or her? This trust isn’t something that should be given lightly, so start small. It could be watching your child for an hour, and then build on it.

Kids need to feel safe with more than one person. While we need to teach our children to not be too trusting, we also need to work to establish a circle of support around them (and us). This circle should include those that know how and when to administer their epinephrine, what brands of food are safe and how to prepare a safe meal. It can be detrimental to your child’s mental health to think that only one person is capable of caring for them properly. What if something happened to you tomorrow? Do you have a plan in place for your child's care? (Read more here about preparing for those "what if" moments).

You are setting an example.

When you practice self-care you are setting a healthy example for your child. You are showing him or her the importance of caring for him/herself and that good health is essential.

Parents of kids with food allergies often say that we do not want our child’s identity to be defined by food allergies. We also need to take this lesson for ourselves and not allow our identities to be defined by our child’s food allergies. We are moms and dads, but we also have needs and wants in our lives.

Yes, as a caregiver we often have to put the needs of others before our own. It’s important that we find a healthy balance with this. In order to be an excellent caregiver, you must also care for yourself.

I encourage you to look at your own state of self-care and see where you could improve the quality of your own life. Improvement in your wellness will be reflected in the care you are able to provide your child.

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Preparing for the "what if" moments

6/2/2015

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by Amanda Painter, South Chapter Coordinator

While we hope that emergencies don’t happen, it’s always important to plan for them. Thinking about emergencies isn’t desirable and can cause anxiety. When that anxiety is put into something productive however it can actually help alleviate some of those emotions.

For those of you that are the primary caregiver for a child with food allergies, like me, we put an enormous amount of effort into preventing and preparing for emergencies with our child. We spend a lot of time examining the “what ifs.” It is important though that we also consider what would happen to our child if we were the ones that had an emergency. What if you couldn’t care for your child for a day, a week or for an indefinite amount of time? Who would care for your child while you can’t? Does this person have all the information and tools to provide the same level of care that you do?

In an effort to relieve some of my personal anxiety, I have developed a binder with all of the necessary information needed to help give my child the best care possible. This binder also doubles as a tool I use for babysitters, and they are instructed to take the binder with them if an ambulance must transport my child to the hospital. I recently shared this binder with my support group. Their response was great and many have now made their own binders. Here is the information for you too ...

On the front of the binder:

A very large reminder to use epinephrine before calling 911.
An emergency script for what to say when calling 911 for anaphylaxis. Here is a great example from KFA. (As fantastic as my babysitters are at caring for my children, I highly doubt they could tell me my street address during an emergency.)
Cell phone numbers for my husband and me.
Other emergency numbers such as poison control.

Inside the binder:

Emergency Care Plan completed by allergist (from FARE)
How a child might describe a reaction (from FARE)
Emergency Phone Numbers:

Doctor’s name and number (pediatrician and allergist)
Family that lives in town
Neighbors/friends that live nearby

Information necessary for medical treatment:

Name
Birthdate
Weight (as of what date)
List of allergies
List of medications
Any other medical conditions

Health insurance information
Consent to treat form (this would not be needed for emergency care, but could be needed for other non-emergency care) Example
Prescription and refill information
Safe food list (brands, flavors, and where it can be purchased)
Specific foods to avoid depending on allergy (reference sheets from KFA)
How to avoid cross contact (from FARE)
Copy of my child’s 504 plan from school and contact information for coordinator, teacher and principal. Depending on age/activities of your child, you may want to include an “activities schedule” (sports, clubs, etc.) and contact information for all of these.

I also include some articles and blogs that have been helpful for me or express my thoughts and emotions about raising a child with food allergies. If someone were stepping into my shoes and caring for my child, I would want them to know this perspective.

Depending on your family situation, you may want to include a list of people that may be contacted to offer advice on managing your child’s allergies. I am blessed to have multiple family members in town and all are knowledgeable and trained on how to care for my daughter. This may not be the case for everyone though. Is there a person outside of your family and closest friends that you turn to for food allergy advice? It could be an old friend that lives in another state, but has a child with the same allergies. Do you belong to a support group? Your facilitator would want to support your child’s new caregiver the same way they have supported you. Be sure to pass their information along.

What resources do you use that make managing food allergies easier? A book, a website, etc.? Include all of this information.

Think about anything else that could be useful to someone caring for your child both emotionally and physically.

I hope you will consider making an emergency binder for your child. It will help if you ever have an emergency. It will also help you to focus some of your “what if” anxiety into an incredibly useful tool.

What other information would you include in a binder for your child?

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Self-Care for the Caregiver

Preparing for the "what if" moments

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