"There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers." Rosalynn Carter
If you cannot stay afloat then you cannot help a person who is drowning. If you let yourself get lost in the role of caregiver, you risk suffering from caregiver burnout or stress. Raising a child with a disability is one of the hardest and, yes, most rewarding jobs in the world. But unlike other jobs, this one is 24/7/365.
It’s easy to neglect yourself when you are so busy all day caring for those around you. But who will care for them if you are no longer healthy enough physically or emotionally? That, in a nutshell, is why it is important to learn how to take care of yourself.
Caring for a family member with a disability can wear out even the strongest caregiver. These tips can help you stay healthy for yourself and those you care for:
- Don’t let caregiving consume your entire life. That isn’t healthy for you or those you care for. Balance is key. Work hard to maintain your personal interests, hobbies, and friendships.
- Allow yourself not to be “the perfect caregiver.” Setting reasonable expectations for yourself will help reduce stress and make you a more effective caregiver.
- Learn to delegate some caregiving tasks to other people you trust.
- Taking short breaks, like an evening walk or a relaxing bath, is essential.
- Occasional long breaks can nurture the caregiver in you. From time to time, find a way to arrange an overnight retreat with friends or a weekend getaway with your partner.
- Don’t ignore signs of illness. If you get sick, see a health care provider. Pay attention to your mental and emotional health as well.
- Don’t let caregiving prevent you from exercising or eating right. They are important to maintain your health and well-being.
Sooner or later, being a caregiver will bring up painful feelings. Learning how to distinguish between authentic feelings, like those in this section, and negative, destructive feelings that are a product of our own fears, as in the next section, can help you maintain a healthy mental balance.
Anger or resentment —You may feel angry or resentful toward the child you’re caring for, even though it seems irrational. Or you might be angry at the world in general, or resentful of other friends or family members who don’t have your responsibilities.
What does it mean if you feel anger or resentment? It means you are human. These feelings are real and understandable. All the same, you can’t let them get in your way, or keep you down.
If you notice yourself feeling angry or resentful, take a moment for yourself. Sometimes screaming into a pillow can be a release. Above all, feel compassion for yourself, just as you’d feel compassion for a good friend who was in your position. Then take a deep breath or two.
Yes, sometimes you may feel angry or resentful. You’re human after all. But you love your child and you love yourself. So learn to acknowledge it, process it, and then move on.
Grief —There can be many sources of grief for a caregiver. You may grieve for the future you saw with your spouse and your child. You may grieve for the goals and dreams you’ve had to set aside. And if your child has a terminal illness, you are certainly grieving about losing him some day.
Like anger, feeling grief around these situations is a sign that you are a human. Grief and loss are as much a part of life as eating and breathing. But we have choices for how we react to our grief. Don’t try to pretend that everything is OK, or try to bury your grief with alcohol or drugs.
Instead, give yourself permission to feel your grief, and the space and time to let it run its course. You are more resilient than you imagine. When you are grieving, it seems impossible to hear; but it’s true, no matter what you are grieving for, you will have opportunities to experience brighter days in the future.
Unlike authentic feelings, like anger and grief, these feelings are negative interpretations of our own thoughts. It is absolutely natural and normal if you have these feelings crop up from time to time. All of us do. But you can learn to control and minimize them. In fact, it’s important you do to keep yourself healthy.
Worry and anxiety—You may worry about how you will handle the additional responsibilities of caregiving and what will happen to your child if something happens to you.
Worrying is always useless and destructive. It is based on negative expectations of future events. But you can’t know what will happen in the future, so why worry about it and create misery for yourself? Chances are you will handle the additional responsibilities just fine. Will you make mistakes? Of course. We all do. But worrying and being anxious won’t do a thing to help you become a better caregiver—it will just make you miserable. And eventually, it might actually impair your ability to care for your child.
Caregiving is hard enough without the unnecessary worry. Let it go. Life will go on without it.
Guilt—You may feel guilty for not doing more, for not being a “better” caregiver, or for not having more patience, or not doing a better job of accepting your situation.
Again, it is natural and understandable that you might feel that way. But like worry, guilt is always worthless. It never helps anything, it only makes you feel rotten. And what happens when you feel rotten? It’s even harder to be a good caregiver.
Love yourself and lose the guilt. Who—besides you—says you should be a better caregiver? You are doing the very best you can, and that’s all any of us can do. Feeling guilty won’t make you a better caregiver, but accepting yourself for who you are will.
Ask an experienced caregiver how they manage to take care of themselves, and chances are they will tell you they reach out for help when they need it. Here are some sources of support you can reach out to:
- Family members or friends who will listen without judgment
- Your church, temple, or other place of worship
- Caregiver support groups at a local hospital
- Online support groups
- A therapist, social worker, or counselor
- National caregiver organizations
- Organizations specific to your family member’s illness or disability