"I often have to remind myself that when you fly on an airplane, the flight attendant instructs you to put your oxygen mask on first, before helping others. This is an important message for those of us who care for someone with ALS. We run around taking care of everything except ourselves. If I don’t take care of myself, I can experience burnout, stress, fatigue, and frustration. When that happens, I'm not very much help to my husband Marvin."
Sometimes family caregivers fall into the trap of thinking that they should only be helping their loved one, rather than needing help themselves. However, everyone needs help sometimes, and even family caregivers should feel okay with seeking help when they need it.
This is especially true when caring for a loved one with ALS. It is important to recognize your own limits before you reach those limits. Be prepared to call in help, whether it’s another family member, or a friend, neighbor, colleague, or professional caregiver. If you have a "respite list" that includes reliable people who can give you a break, it can save you a lot of unnecessary anxiety, resentment, and effort and perhaps even your loved one’s life.
Here are the Caregiver Action Network's 10 Tips for Family Caregivers:
1. Seek support from other caregivers. You are not alone!
2. Take care of your own health so that you can be strong enough to take care of your loved one.
3. Accept offers of help and suggest specific things people can do to help you.
4. Learn how to communicate effectively with doctors.
5. Caregiving is hard work so take respite breaks often.
6. Watch out for signs of depression and don't delay getting professional help when you need it.
7. Be open to new technologies that can help you care for your loved one.
8. Organize medical information so it's up to date and easy to find.
9. Make sure legal documents are in order.
10. Give yourself credit for doing the best you can in one of the toughest jobs there is!
Visit The Family Caregiver Alliance at caregiver.org for more helpful information, support, and resources.