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Frequently Asked Questions 

Question:

I am a caregiver. What can I do to help my loved one with AE?

 

Answer:

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. This site has information for family caregivers such as yourself to help you and those you care for stay safe and healthy.

 

Caregiving Tips for Families of People with Disabilities

These general caregiving tips provide families with information on how to stay healthy and positive. Keep in mind that these tips can be used to address many family issues. Information, support, advocacy, empowerment, care, and balance can be the foundation for a healthy family and are appropriate no matter what the challenge.

 

Be Informed

* Gather information about your family member’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. Purchasing a deck of AE Trivia playing cards can assist you in learning about AE and answer basic questions and can be used by your loved one in their rehabilitation.

* Notice how others care for the person with special needs. Be aware of signs of mental or physical abuse.

 

Get Support

* Family members and friends can provide support in a variety of ways and oftentimes want to help. Determine if there are big or small things they can do to assist you and your family.

* Join the IAES online educational support group on Facebook. A support group can give you the chance to share information and connect with people who are going through similar experiences. A support group may help combat the isolation and fear you may experience as a caregiver. You can also access IAES advocates quickly and easily as a support group member to receive assistance with questions about AE and treatments as well as your personal advocacy.

*Join the IAES Caregiver Monthly Zoom Support Group

The IAES Caregiver Support Group takes place the 2nd Thursday of each month. This is a ‘safe space’ where caregivers can build relationships/friendships with others who are “walking that walk”, share/vent and receive the support and direction they so richly deserve.

AE Caregivers have a variety of unique challenges that are different from the AE Warrior’s. Often they feel alone and need to be able to share their concerns with others who are on that same journey. Sometimes hearing a chorus of ‘Me Too!’ can have great healing power of its own. Additionally, some of you may qualify for services you are unaware of that could assist or solve a challenge you (or your loved one) are having. As topics are discussed, your hostess, Mari Davis, will direct you to available solutions, services and supports.

Your Hostess, IAES Support Services Coordinator Mari Wagner Davis, has 30 years of experience as an accredited Nurse Case Manager. Mari’s professional career prior to becoming ill with Autoimmune Encephalitis, was to locate and arrange for the support services needed for patients when released from the hospital to rehabilitation or home.

Register Here

* 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 effective advocates are 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 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 Americans with Disabilities Act, the Family Medical Leave Act, and other state and national provisions. Know how and when to apply them to your situation.

 

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 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 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.

Learn about healthy living ~ 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 any other children they might have.

*Consider respite. “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.

Disabilities: Healthy Living

People with or without disabilities can stay healthy by learning about and living healthy lifestyles.
Learn about healthy living with a disability

Emergency and Disaster Preparedness

It is important that people with disabilities and their caregivers make plans to protect themselves in the event of an emergency or disaster. Emergencies and disasters can strike quickly and without warning and can force people to leave their home or be confined in their home. For the millions of Americans who have disabilities, emergencies such as acts of terrorism and disasters such as fires and floods present a real challenge.

 

 

References:

Join the IAES Caregiver Support Group

IAES Support for Individual & Caregivers

AE Trivia Playing Cards

IAES FaceBook Support Group

CDC

 

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

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