Caregiver Tips and Resources

Empowering the Myositis Community

Myositis Support and Understanding understands and appreciates the important role that caregivers and care partners play in helping to manage their loved one’s disease. They are the rock and foundation for any patient living with Myositis. Without them, their loved one may feel alone, isolated, and may not be able to do the things they enjoy.

Caregivers are instrumental in helping to manage their loved one’s health by going to doctor visits and asking questions, taking notes, and explaining things that the patient may forget. Caregivers are a part of the “invisible healthcare team” and we work to acknowledge them so they are recognized and even rewarded for their hard work.

In an effort to help caregivers succeed, we have compiled some helpful resources.

Share your caregiver story

Share your story to empower other caregivers

Myositis caregivers and care partners each have a unique story to tell that can help educate others going through the same experiences.

Each form of myositis is different and brings unique challenges. Whether they are specific adaptations you have made in your home or daily life to help make thing easier or how you have created a journal or schedule that helps keep your better organized and prepared for unexpected circumstances.

Share your unique story with us so we can share it publicly.

Share your story

Caregiver Support Groups

  • MSU Family and Friends/Caregivers

    Myositis Support and Understanding’s Family and Friends Facebook support group is a place for caregivers and all of those involved in a Myositis patients life to come together and learn more about Myositis and get the support you need and deserve.

  • MSU Patients and Direct Caregivers group

    Our Patients group allows direct caregivers to be a member as long as your partner agrees. We want our patient members to feel comfortable sharing. We define a direct caregivers as someone who helps their loved one with bathing, eating, and other activities of daily living.

  • Inclusion Body Myositis Caregivers

    Inclusion Body Myositis Caregivers group is an excellent place for IBM caregivers to discuss your unique challenges.

  • JM Moms/Caregivers Group

    Juvenile Myositis (JM) Moms group is a great place for parents of a child or adult with JM/JDM to find support

  • Caregiver Support Group

    A general group for Caregivers, not Myositis specific.

Organizing Online Care

  • Caring Bridge

    Your personal CaringBridge website is your place to share health updates, photos and videos with the people who care about you. You’re in control of your privacy. Customize your settings to make your updates private or public. Your personal data is never sold, and there’s no outside advertising. Your personal CaringBridge website is designed to rally your family and friends together, to offer you support when and how you need it.

  • Lotsa Helping Hands

    Lotsa Helping Hands is an online volunteer coordination service for friends, family, colleagues, and neighbors to assist older adults in need. Offers a private group calendar to organize meal deliveries, rides, and other caregiving tasks for a loved one.

  • Patient/Partner Project

    Patient/Partner Project is an online tool for keeping family and friends up to date on a loved one’s illness.

Care Solutions

  • Search for Assisted Living Residence

    An assisted living residence is a long-term senior care option that provides personal care support services such as meals, medication management, bathing, dressing, and transportation.

    Search for assisted living facilities in your area using resources provided below:

  • Adult Day Care

    Find Adult Day Care facilities in your area.

  • National Adult Day Services Association

    NADSA advances the national development, recognition and use of adult day services.  They provide a coordinated program of professional and compassionate supervised services for adults in a safe place outside the home during the day.

  • Skilled Nursing

    Search for skilled nursing facilities in your area.

  • Home Health Care

    Home health care companies offer a wide range of skilled medical services such as nursing care, physical therapy and occupational therapy from qualified medical professionals in addition to various services from home health aides.

Caregiver Resources

  • AARP Caregiver Resources

    Whether it’s caregiving/life balance, health, finances, or home care, AARP has a great caregiver section of their site.


    Find local resources using the resources database. Be sure to explore their entire site for articles, helpful information, and more.

  • Caregiver Action Network

    The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age

  • Caregiver Duties – How Can You Make Your Life Easier?

    The list of caregiver duties can become endless for many who provide care for a loved one or senior in need. Being a caregiver is a daily responsibility with very little downtime or relief. One of the most important things a caregiver can do is develop an organized plan to aid them in their responsibilities and look for ways to make their lives easier.

  • is the leading online destination for those seeking information and support as they care for aging parents, spouses, and other loved ones. Our mission: to help the helpers. We equip family caregivers to make better decisions, save time and money, and feel less alone — and less stressed — as they face the many challenges of caregiving.

  • Caring Voice Coalition

    Caring Voice Coalition empowers patients who live with a life-threatening chronic disease through comprehensive outreach programs and services aimed at financial, emotional and educational support. With a steadfast dedication to the organization’s set of core values, our knowledgeable, caring staff maintains our solid reputation as a dependable, responsive organization with a unique, holistic approach to improving the lives of our patients.

  • Centers for Medicare and Medicaid Services

    Caregiver Partnerships and Caregiver Workgroup. Workgroup consists of caregiver organizations, beneficiary advocacy groups, providers, insurers, employers, and other organizations with an interest in caregiving. This group meets quarterly and discusses how Medicare information can better be communicated to this population and what the members of this group can do to make that happen.

  • Getting Paid as a Caregiver

    From AARP – In some places, and in some cases, you can. Here are ways your commitment to Mom and Dad can result in more money in your pocket — either from direct cash payments or federal income tax breaks.

  • Grief and Loss

    Different types of grief and losses Caregivers experience and tips to help them through it.

  • National Alliance for Caregiving

    Coalition of organizations focused on family caregiving issues. Conducts research, policy analysis and develops programs to increase public awareness of family caregiving issues.

  • National Council for Aging Care

    Resources for Seniors.

  • Rare Disease Caregivers (CAN)

    Caring for Rare Disease Caregivers

    A Guide for Family Caregivers of Loved Ones with Rare Diseases

  • The National Women’s Health Information Center - Caregiving

    Information on caregiver stress, publications, and organizations.

  • Veterans Caregiver Support

    The VA Caregiver Support program offers a wide variety of services to help the caregivers of Veterans.

  • Well Spouse Association

    Nonprofit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled. Services include support groups, online discussion groups, mentorship program, respite weekends and newsletters.

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MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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