If you are a family member who cares for someone with a disability, whether a child or an adult, combining personal, caregiving, and everyday needs can be challenging. Be Informed: educate yourself about your loved one's diagnosis. Being informed will help you make more knowledgeable health decisions and improve your understanding of any challenges you may face. Do Not be Afraid to Ask for Help: Family members and friends can provide support in various ways and often want to help. Be specific about the help you need. Join a local or online support group. A support group can give you the chance to share information and connect with people going through similar experiences. A support group may help combat the isolation and fear you may experience as a caregiver.
Be an Advocate: Be an advocate for your family member with a disability. Caregivers who are effective advocates may be more successful at getting better service. Ask questions. For example, if your family member with a disability uses a wheelchair and you want to plan a beach vacation, find out if the beaches are accessible via a car, ramp, portable walkway mat, or other equipment. Inform other caregivers of any special conditions or circumstances. For example, if your family member with a disability has a latex allergy, remind dental or medical staff each time you visit. Document the medical history of your family member with a disability and keep this information current. Make sure your employer understands your circumstances and limitations. Discuss your ability to travel or to work weekends or evenings. Arrange for flexible scheduling when needed. Become familiar with the Americans with Disabilities Act, the Family Medical Leave Act, and other state and national provisions.
Be Empowering; Focus on what you and your family member with a disability can do. Find appropriate milestones and celebrate them. If someone asks you questions about a family member with a disability, let them answer when possible. Doing so may help empower the individual to engage with others. When appropriate, teach your family member with a disability to be as independent and self-assured as possible. Always keep health and safety issues in mind.
Most important, Take Care of Yourself. Take care of yourself. Caring for a family member with a disability can wear out even the strongest caregiver. Stay healthy for yourself and those you care for. Work hard to maintain your interests, hobbies, and friendships. Don’t let caregiving consume your entire life. This is not healthy for you or those you care for. Balance is key. Allow yourself not to be the perfect caregiver. Set reasonable expectations to lower stress and make you a more effective caregiver. Delegate some caregiving tasks to other reliable people. Take a break. Short breaks, like an evening walk or relaxing bath, are essential. Long breaks are nurturing. Arrange a retreat with friends or get away with a significant other when appropriate. 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. Remember, taking good care of yourself can help the person you care for. Exercising and eating healthy also are essential.
Please join us on May 19, 2022, for our 45 min information session. Presenter: Jessica Willamston, Intake, and Outreach Specialist at OPWDD (Office of People with Developmental Disabilities), and Tia Jackson, a parent and advocate.
Diane Cooper, RN, M.Ed., GNP, AGCM
CEO COME Inc.