Tips for caring for yourself as a caregiver
When caring for someone with a chronic condition such as Short Bowel Syndrome, it’s important to maintain your own health and well-being, too. Here are some ways you can take care of yourself:
Enlist the help of others
Surrounding yourself with a support network may help. Make a list of people you can rely on for various tasks or contributions, and don’t be afraid to ask for help. The Caregiver Action Network offers tips for defining the care you need. Create a community page through Lotsa Helping Hands or CareCentral to allow people to sign up for areas in which to help.
Designate a backup caregiver for emergencies or time away. If you do not have friends or family who can help, there are agencies and organizations available for respite or ongoing home health care. Locate options in your area and read tips for choosing an agency on the AARP website.
Schedule time for your own needs
An important part of caregiving is taking care of your needs, too . Plan time to relax and recharge, even if only for a couple of hours at a time. Maintain friendships and hobbies. Try to exercise several times a week; a short walk can lift your spirits. Take time to eat properly. Schedule respite care at regular intervals to avoid becoming overwhelmed or exhausted.
You may be eligible for financial assistance for respite care through state and federal funding sources. Some states offer Lifespan Respite Care Programs, which provide community-based respite for those caring for family members of all ages. A state-by-state directory of these programs is available on the Access to Respite Care and Help (ARCH) National Respite Network and Resource Center website. You can also use the respite locator to search for local services in your area.
Connect with others in a similar situation
To find support from others caring for someone with Short Bowel Syndrome, explore SBS community resources. Connect with others caring for people with chronic illnesses or subscribe to information and tools at Caregiving.com or Caregiver Action Network.
Learn as much as you can about Short Bowel Syndrome so you feel empowered and confident about helping someone manage SBS. Stay current with news and information specifically for people with SBS by reading newsletters such as Lifeline from the Oley Foundation.
Balance work and caregiving
Be proactive. Learn about your company’s policies, benefits and available resources for caregivers, such as the Family Medical Leave Act (FMLA) so you can negotiate a flexible work schedule if needed. While you cannot be discriminated against because you are a caregiver, it’s advisable to communicate with your employer about your situation. Have a back up plan for caregiving in case of a work obligation. The National Volunteer Caregiving Network may be able to help you locate resources in your area.
Technology offers new tools for staying connected and organized including CareZone or CareConnector; apps especially for caregivers or Cozi, an app designed to organize family life.
Keep a journal
Putting your thoughts and emotions onto paper may be a healthy way to manage stress. Address how you feel, what your fears are, what outcomes you hope for, and progress you make. Journaling can alleviate some of the helplessness you may be feeling.
Adding caregiving responsibilities to an already full schedule can create feelings of being out of control. You may be unsure where to start. The Caregivers Action Network has compiled resources with the new caregiver in mind, including a Family Caregiver Toolbox.