If your child has a serious illness, the caretaking that falls to you is undoubtedly
intense. But of course you do it willingly. After all, you'd do anything for your
child, including switching places in a minute if only that were possible.
Instead you give all that you can, in every other imaginable way. It's harder than
anything you've ever done, and honestly, there are moments when the sheer magnitude
of what you're up against is so overwhelming that you just want to run and hide.
Ask any parent who's done this before and you'll find out something very important:
You're not alone.
The Caregiver's Dilemma
When you're the caregiver of a child who is seriously ill, it can feel as if the
whole world is on your shoulders. Your sick child needs you. You may have other children
who need you. Your spouse needs you. Your job — however pointless work might
seem right now — needs you.
Yet there's only so much you can give before you will feel mentally, emotionally,
and physically drained. That's why it's a necessity — not a luxury — to
spend some time taking care of yourself so that you can recharge and feel empowered
to continue to support and care for your child.
Tips for Caregivers
Many of these tips might seem easier said than done at first, and a few may seem
downright frivolous. But to make it through the long haul, consider the wisdom of that
air-safety rule about putting your own oxygen mask on first before helping
others. Here are some ways to do that:
Take breaks. It's essential to regularly schedule a few times
each week — even for just an hour or two — when you can get away while
a family member, friend, or a health aide stays with your child. Once away, that time
is yours, so don't feel guilty about how you spend it. Nap, read, have coffee with
a friend, go shopping, whatever allows you to relax. While you're out, your child
will probably enjoy having someone else to talk to and you'll feel refreshed when
you get back.
Eat right. It's no surprise that living on coffee and picking
at hospital leftovers can leave you feeling tired and run down. If you know you're
going to be out, carry nutritious snacks with you, like fruit, granola bars, sandwiches,
or nuts. And if friends offer to bring homemade meals to your home to help out, take
them up on it.
Exercise. Whether through a brisk walk, a bike ride, or yoga,
most people find that exercise helps clear the mind, boost energy levels, and improve
sleep. Even 20 minutes can do the trick, so save a bit of time every day to get moving.
Stay organized. Keep all the information you've accumulated about
your child's illness in one place, including medication schedules, important phone
numbers, and insurance information. When you think of questions for your doctor, write
them down immediately so you won't forget. And since dealing with insurance companies
can often seem like a full-time job in itself, enlist the help of your spouse or another
trusted family member or friend to help keep it all straight. Use a notebook
to keep all of the information in one place.
Ask for help. Your friends and family likely want to help you,
but might not be sure about what you need. If someone says, "If there's anything I
can do…" — and there is — say so. You'd be surprised at how running
an errand, doing some laundry, or just sitting and listening to you talk about the
day can not only benefit you, but also can make a loved one feel useful.
Find a support group. Ask your child's doctor, nurse, or social
worker for information on local support groups related to your child's condition or
caregiving in general. If you feel more comfortable sharing anonymously online, then
look there. The important thing is to get beyond the feeling of isolation by reaching
out to others who've been in your shoes.
Acknowledge your feelings. Your child is sick — of course
you have feelings of anger and frustration, and days when you wish you didn't have
to deal with it all. Does this make you a bad parent? No, it makes you human. Accept
these negative feelings and the often painful fact that no matter how much time or
energy you invest in your child's care, you can never be completely in control of
your child's health and happiness.
Be aware of the signs of "caregiver burnout." Caregiver burnout
is a true state of exhaustion, both physical and emotional. It tends to happen when
caregivers try to "do it all" without getting the help or rest they need.
Because caregivers tend to be on autopilot, they're not usually quick to recognize
burnout in themselves. Other people might notice the symptoms first, which can include
changes in appetite and sleep patterns, withdrawal from social activities, increased
anxiety, or emotions that are either heightened (such as excessive crying or irritability)
or decreased (feeling empty or unconcerned). Take it seriously if someone you trust
notices any of these things in you.
If you feel like you may be experiencing caregiver burnout, depression, or anxiety,
explain your feelings and symptoms to your doctor, who may recommend that you see
a counselor or therapist (especially one who specializes in caregiver needs).
Your doctor also may encourage you to take a temporary break from your duties by
looking into respite care (the kind needed would depend on how ill your child is).
Medications for anxiety or depression could be an option, too.
Finally, remember that you are not superhuman. You're a parent doing your best.
So give your child your time, your encouragement, your attention, and your unconditional
love. Just be sure to save a little bit for yourself.