If you are a family member who cares for someone with a disability, whether a child or an adult, combining personal care, caregiving and everyday needs can be challenging.
Caregiving tips for families of people with disabilities
These general caregiving tips provide families with information on how to stay healthy and positive. Information, support, advocacy, empowerment, care and balance can be the foundation for a healthy family and are appropriate no matter what the challenge.
- Gather information about your family's condition and discuss issues with others involved in the care of your family member. Being informed will help you make more knowledgeable health decisions and improve your understanding about any challenges your family might face.
- Notice how others care for the person with special needs. Be aware of signs of mental or physical abuse.
- Family members and friends can provide support in a variety of ways and often times want to help. Determine if there are big or smal things they can do to assist you and your family.
- Join a local or online support group. A support group can give you the chance to share information and connect with people who are going through similar experiences.
- Don't limit your involvement to support groups and associations that focus on a particular need or disability. There are also local and national groups that provide services, recreation and information for people with disabilities.
- Friends, family, health care providers, support groups, community services and counselors are just a few of the people available to help you and your family.
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 by 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 them.
- 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 National or State Disabilities Act. Know how and when to apply them to your situation.
- Focus on what you and your family member with a disability can do.
- If someone asks you questions about the family member with a disability, let him or her 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.
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 personal 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 a 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 as well. Exercising and eating healthy also are important.
Keep Balance in the Family
- Family members with a disability may require extra care and attention. Take time for all family members taking into account the needs of each individual. For example, it's important for parents of a child with a disability to also spend time with each other and with other children they might have.
- Consider respite care. Respite refers to short-term, temporary care provided to people with disabilities so that their families can take a break from the daily routine of caregiving.
First Steps for New Caregivers
It is easy to become overwhelmed as a new caregiver. Here are some steps that can help:
- Identify yourself as a caregiver
- Get a good diagnosis, from a specialist or geriatrician if necessary of your loved one's health condition
- Learn what specific skills you might need to care for someone with this diagnosis.
- Talk about finances and healthcare wishes.
- Complete legal paperwork.
- Bring family and friends together to discuss care.
- Keep them up to date on the current situation.
- Identify resources, both personal and in the community.
- Find support for yourself an your loved one.
- Remember, you are not alone.