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Caregiver Support

Caring for someone with an autoimmune disease can affect you too. Find out what to expect if you become a caregiver for someone with an autoimmune disease, and just as importantly, get tips to help you care for yourself.

Caring for loved ones with autoimmune disease

Open lines of communication between a patient and caregiver are an important part of living with an autoimmune disease. Think of the patient/caregiver relationship as any other relationship: two people working together towards a common goal. In this case, it’s the challenge of facing an autoimmune disease. As such, both people should ask for what they need (in general and from the other), respect each other’s needs, and speak up if or when they cannot meet those needs (short- or long-term). By creating honest, open lines of communication, the patient/caregiver relationship can become a source of information and strength while creating healthy boundaries.

Support Group

Support Groups

The National Alliance for Caregiving partners with many organizations offering support groups to address the challenges of caring for a loved one.

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Caregiver tips

1

Act as a team.

2

Go to medical appointments together when possible so information is clearly understood by all.

3

Understand the patient may ask for help even if they do not look or act “sick” (because they are).

4

The patient and caregiver should agree on what information will be shared (disease, treatments, side effects, etc.) – and with whom (friends, family, kids, coworkers, etc.).

5

Discuss the patient’s needs and determine what individuals can and cannot accommodate (chores, medication, assistance, days and times, etc.).

6

Encourage friendships for additional support, entertainment, and stress relief.

Still have questions?

Reach out to us and a member of the Autoimmune Association team will be happy to assist!

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