Find Myositis Care partner & Caregiver Support and Resources
At Myositis Support and Understanding, we understand and appreciate the important role that you as a caregiver, care partner, or spouse play in helping to improve your loved one’s quality of life with the rare disease myositis. Care partners are the rock and foundation for any patient living with myositis. Without you, they may feel alone, isolated, and unsafe, and may not be able to do the things they enjoy.
Care partners 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. Care partners are an integral part of the healthcare team and we work to provide support and resources to help you succeed and stay well.
Share your myositis caregiving experiences
Myositis caregivers and care partners each have unique experiences to share that can help educate and inform others going through similar experiences. Visit our new #MyositisLIFE website and start sharing today.
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 things 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.
Care partner & Caregiver Support Groups
The Myositis Support Community on Inspire
Myositis Support and Understanding’s Caregiver, 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 Care Partners, Family and Friends
Myositis Support and Understanding’s Care partners, Family, and Friends Facebook support group is a place for care partners and all of those involved in a Myositis patient’s life to come together and learn more about Myositis and get the support you need and deserve.
Myositis Support on Facebook
This is primarily a group for people who are diagnosed with one of the types of Myositis. We do understand that the person living with myositis may not be able to participate without you, so we do consider adding care partners and caregivers on a case-by-case situation.
Organizing Online Care
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.
Respite and Care Solutions
ARCH National Respite Network and Resource Center
Caregivers, use Respite services!
Jill Kagan, MPH, Program Director with ARCH National Respite Network and Resource Center, joined us to discuss respite services. Find a ton of resources, locators, and details about finding and using respite care. :
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.
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.
Care partner & 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 Caregiver.com 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.
Caring.com 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.
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.
Family Caregiver Alliance
Check out available state by state resources, caregiver policy and advocacy, and more from the Family Caregiver Alliance.
FamilyMeans is headquartered in Stillwater, Minnesota, with branch offices located throughout the Twin Cities metro area, southeastern Minnesota and western Wisconsin.
Jenny West with FamilyMeans joined us in November 2019 for a webinar, Caring for Caregivers.
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.
My Caring Plan
Keep your family involved through My Caring Plan. They also provide numerous articles and resources for caregivers.
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
Information and resources for seniors and their caregivers.
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.