TAKING CARE OF YOU

No one expects life-changing illness or injuries to happen.  And when it’s your child, it’s normal to feel upset, worried, or alone. While it may not seem like it, the best way to help your child is to be sure to take care of yourself.

No one expects life-changing illness or injuries to happen.  And when it’s your child, it’s normal to feel upset, worried, or alone. While it may not seem like it, the best way to help your child is to be sure to take care of yourself.

As a parent or caregiver, you have an important job: to be your child’s source of strength. In order to be strong for your child, you will need to take care of yourself.

While your needs may be the last thing on your mind, it’s important to recognize this is a stressful time for you. Having a child who has an illness or injury often challenges your innermost beliefs about the safety of your children. You’re worried about what will happen, even if you are not showing that to others. It’s common to also not feel ready to talk to them (and their siblings) about your feelings and worries.

Clearly, you will focus on taking care of your child first. But parenting, especially when your child faces a life-changing illness or injury, is a marathon, not a sprint. You need rest, nutrition and time to re-charge in order to be an effective advocate and caregiver.

As a parent or caregiver, you have an important job: to be your child’s source of strength. In order to be strong for your child, you will need to take care of yourself.

While your needs may be the last thing on your mind, it’s important to recognize this is a stressful time for you. Having a child with an illness or injury often challenges your innermost beliefs about the safety of your children. You’re worried about what will happen, even if you are not showing that to others. It’s common to also not feel ready to talk to them (and their siblings) about your feelings and worries.

Clearly, you will focus on taking care of your child first. But parenting, especially when your child faces a life-changing illness or injury, is a marathon, not a sprint. You need rest, nutrition and time to re-charge in order to be an effective advocate and caregiver.

Taking Care of Yourself

Taking time to practice self-care may sound impossible in the midst of pressing treatment demands or your child’s needs. However it can be an investment that helps you help your family over the long haul.

Self-care looks different for everyone. For some, it may mean an early morning run, while for others it means sleeping in. Self-care can also be about the things you don’t do. It can mean outsourcing household tasks, saying no to a stressful event, and just focusing on the basics day to day. Most of all, giving yourself grace, as you would a good friend.

Below are a few more ways to take care of you, so you can better take care of others. You can also get one mother’s perspective on self-care, and her advice, by reading A Mother’s Guide to Self Care.

 

  1. It may sound simple, but be sure to meet your basic needs. If you are not sleeping or eating, it will be hard to be effective.
  2. Pay attention to your own stress and emotions. Talk about what you are feeling and experiencing with people you trust, such as family, friends, clergy, your doctor or a counselor.
  3. Keep an eye out for symptoms of post-traumatic stress. You might also ask your close family and friends to help you notice if you are struggling to cope.
  4. Be especially careful not to increase smoking, alcohol or other unhealthy ways of coping when you feel worried, upset or stressed.
  5. In addition to the basics, try to find time to do an activity that helps you mentally and emotionally re-charge. Hobbies and relaxation may seem insignificant in the face of other responsibilities, but time for yourself can help keep you going.
  6. Sometimes self-care means NOT doing things as well.
  7. Don’t be afraid to ask for help. This is a stressful time and there are only so many hours in the day. Most friends and family members are not only happy, but eager to jump in.
Managing Anxiety

Many parents experience anxiety during and after a child’s treatment and recovery. Scanxiety related to your child’s upcoming medical tests, or even your own, is also very common.

What is anxiety? Anxiety is the feeling of constant worry and panic. You may notice symptoms such as faster than normal heart rate and breathing, sweaty palms, difficulty concentrating or remembering, or an upset stomach. Unfortunately, when your child is sick or injured, feelings of anxiety can go into overdrive, and everything may feel like a threat or dangerous.

What can you do? There are many ways to cope with anxiety, including professional treatments. Below are a few simple exercises you can do anywhere to get started. You can also find additional ways to manage your fear here.

However if you feel you need additional help, don’t hesitate to reach out to your or your child’s healthcare team for referrals and support. You can find information on therapy and what to expect here.

  1. Deep Breathing : Practicing deep breathing can help calm your mind and body. When you feel your anxiety level rising, try taking a deep, belly breathe in (aim for 5-7 seconds), hold your breath (5 seconds), and then slowly breathe out (aim for 8-10 seconds).
  2. Mindfulness: Mindfulness helps bring your thoughts and emotions back to the present moment, rather than future or past. Like deep breathing, there are many ways to practice mindfulness. As you feel your anxiety increasing, bring yourself back to the present moment by noticing and describing, in as much detail as you can, everything you see, hear, smell, and feel. Some find it helpful to use a meditation app such as Headspace.
  3. Distraction: When anxious feelings overwhelm you, sometimes distraction can be helpful to calm you down. Watching your favorite TV show or movie, engaging in a favorite activity (exercise, coloring, playing a sport), or playing a game on your phone or tablet can provide relief from your anxious thoughts.
  4. Create a “Worry Time”: If mindfulness isn’t for you, try setting aside a time to focus on your fears. This “Worry Time” can be one or two 10-minute periods. If a worry comes to you during the day, simply write it down. Knowing you will have time to come back to it later may make it easier to ignore.
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     To take this exercise further, use your “Worry Time” to write down one action step you can take to address each problem. This will give you a place to start and can help make challenges more manageable.

 

Maintaining Relationships

Friends and family can be a great support and source of strength. However, you might realize that since the diagnosis, your relationships have changed. That’s normal. Having an ill or injured child can make it hard to maintain friendships or other relationships. You might find that some people are upset and share that with you. Others might keep their distance or think everything is fine once your child comes home. You may also find yourself feeling distant from or arguing more with your partner or spouse. This is hard, especially when you feel you need their support now more than ever. But it’s important to remember everyone copes in different ways and needs time to adjust.

Fortunately, there are some things you can do to help keep important relationships strong. Below are just a few examples. You can also find more ideas for maintaining relationships here.

 

  1. Reach out – If you feel alone, reach out to someone you trust, even to say hello. Even better, arrange to spend time with them. Or find fun ways to connect virtually while apart.
  2. Be patient – In times of stress, fights might happen more often. Let everyone calm down and then return to the discussion.
  3. Listen – It’s hard, but be willing to hear your family members and friends’ thoughts and feelings. It’s okay if they’re not the same as yours!
  4. Share – Sharing your thoughts and feelings with family and friends can be scary. But doing so can help you avoid conflicts and feel closer and more supported.
  5. Make an effort – If a friend or family member seems to be distant, try to reach out and reconnect. They might not know what to say or do.
  6. Relax and take your mind off things – Take time to get together to have fun. Go to the movies, go shopping, watch/play sports, or do other relaxing activities.
How to Ask for Help

Asking for help is not always easy. But parenting, especially when a child has an illness or injury, takes a village. Think about the supportive relationships in your life.

Then:

  1. Accept, and ask for, help from those around you – family, friends and neighbors. Try to be comfortable telling them what you need (and what you don’t). Often people don’t know what to do and appreciate the direction.
  2. Assess everyday routines to see what others might be able to take over.
  3. Make a list of things you might need to refer to when people ask how they can help. Examples include:
    Grocery shopping
    • Cooking meals
    • Helping with pets
    • Babysitting so you can go out with your spouse
  4. Assign one trusted person to be the contact or have a central webpage, like a private Facebook group or Carepage, to update information. Ask family and friends to go to the designated person or page so you are not overwhelmed with calls.
  5. If it all seems too overwhelming, simply direct friends, family and community members to our Community page.
Ways Others Can Help

Practical Help

  1. Let your friends and family know that the best gift they can give you is TIME.  Ask them to sit with your child so you can have a break.
  2. Do you have other children?  Ask your family or friends to take them on a play date.
  3. Do you have pets? Ask family and friends to assist with them.
  4. Create a list of things you would like help with when you are home. Housecleaning, weeding and meal preparation to name a few.
  5. Let the community know that you appreciate the meals that you receive but give them some suggestions of what your family likes, how much you may need and what foods you have had recently so you do not end up with baked ziti for the third night in a row! Try a free program like SignUpGenius.com to help coordinate meals.
  6. Would gift cards to the grocery store or restaurants be useful? (Ones that do not expire) Create a list of your family’s favorite restaurants and be sure to include the name of the grocery store too. Tip: Think of restaurants that are close to the hospital too so you can order food when you have to stay overnight.
  7. Don’t be afraid to ask for things for yourself, like a pedicure. Pedicures are a nice gift and they give you a little time to relax and focus on you.
  8. Need more ideas? Check out our list of top 10 gifts to give a friend whose child has cancer or another serious illness.

Checking In and Being Flexible

  1. Appointments and hospitalizations may make it hard to predict when your family is home. Let people know if home cooked meals are good for your family or if there are better ways they can provide support.
  2. It is okay to ask visitors to call or text before stopping by to make sure everyone is up to having visitors and that nothing is scheduled during that time.
  3. Ask friends/family to stop by for coffee, lunch, etc. so you can vent or take a break from conversations related to your child’s illness or injury.
  4. You may not know what to say when someone asks, “What can I do?”, and that is okay. Let family and friends know that you may not have those answers at the present time but will think about it and get back to them with an answer. You can also direct them to the Community page for more tips on how to help.

Helping While Your Child Is at the Hospital

When your child is in the hospital, it’s natural to want to spend as much time with them as possible. It’s also natural to feel guilty for not being at home with your other children. It’s hard to be in two places at once. During these times, try to let family members and friends help, rather than doing everything yourself.

  1. Would fruit, homemade cookies, a craft project for your child, or a gift card to a local restaurant be a good gift to bring to the hospital? Give people a suggestion of what would be helpful.
  2. Ask your visitors to think about siblings too. It’s natural for them to feel jealous or overlooked. A small gift or recognition can go a long way.
  3. If you need something, don’t be afraid to ask. Care packages including comfy socks, things to keep you busy, or fun snacks can all help the time pass more quickly.

 

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