If you are caring for a child with hemophilia and inhibitors, it's not easy. Managing hemophilia is tough, but inhibitors might add extra worry about stopping bleeds.4
At times, people who care for a loved one with inhibitors may feel anxious and overwhelmed because of the heavy demands placed on them and their families.4
Avoiding Caregiver Burnout
Do you have signs of caregiver burnout? These include3:
- Feeling very tired
- Not wanting to be with people
- Feeling lonely
- Feeling helpless
- Having a hard time sleeping
- Losing patience easily
It's important to take care of yourself, so that you can give your child the best care possible. Here are some tips that may help.
Accept your feelings. You may feel financial, social, and other pressures as you adjust to the reality of having a child with hemophilia and inhibitors. Don't deny your feelings. Talk about them instead.
Educate yourself. Learn all you can about inhibitors and their treatment, how to keep bleeds from happening, signs that a joint bleed is happening, and what to do in an emergency. The things you learn can go a long way towards helping you feel more in control.
Take time out for you. Do things that help you and your health. Go to the gym. Eat well. Go to bed on time to get enough sleep. Meditation, music, and even a walk around the block can be a great way to reduce stress.
Ask for help. Your doctor or hemophilia care team is there to help you with education and support. If there is a social worker on the team, they can help you find ways to reduce your stress, help with financial issues, and even find ways to help you get to doctor's appointments. Hemophilia treatment centers are a great resource to ask for help.
Reach out to others
Look to family, friends, and social groups. The Internet is a great source for facts and support. A list of groups and Internet sites that may be helpful is included in the Resources section of this site.