The more you know
the better you can help
More resources for family caregivers
Help with the basics
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Getting started​
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AARP — See the five steps to take as you begin caring for a family member. Download the family caregiver guide that’s full of helpful checklists and definitions. Available in multiple languages.
https://www.aarp.org/caregiving/prepare-to-care-planning-guide/ -
Atlas of Care — Learn how to make a simple diagram showing the overall picture of where you give or get help, support, and advice as you care for a family member or friend.
https://atlasofcaregiving.com/caremap/ -
AARP — Get helpful information on a wide variety of topics, including medical, financial, and legal aspects of family caregiving.
https://www.aarp.org/caregiving/ -
AARP — Get emotional support and practical tips from other family caregivers when you join the AARP Family Caregivers Discussion Group.
https://www.facebook.com/search/groups/?q=aarp%20family%20caregivers%20discussion%20group&sde=Abo6mQGTwumSH8ghiQqAvvjPX7NFviMO4wSBhxr6grIQwUayjg5k0ye5FNdIS2HCiLkkJOB-TfP5YV29lVJ9zt3H -
The Conversation Project — Get a free guide to help you start difficult conversations about what types of health care someone wants and doesn't want, especially toward the end of life. There's also a version for talking to health care team members and more.
https://theconversationproject.org/
Getting help in an emergency
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Call 988, National Suicide Prevention Lifeline — If you are in suicidal crisis or emotional distress, call, text, or chat in multiple languages, 24 hours a day, 7 days a week.
https://988lifeline.org/ -
Call 1-866-3-HUNGRY (1-866-348-6479) USDA National Hunger Hotline — Call Monday through Friday, 7 a.m. to 10 p.m. Eastern time for help finding food in an emergency. Or call 1-877-8-HAMBRE (1-877-842-6273).
https://www.fns.usda.gov/national-hunger-clearinghouse -
Call 211, United Way — Call 211 or visit the website to find local assistance with immediate needs, from mental health to getting food to caregiving to recovering after a disaster.
https://www.211.org/ -
USA.gov — Find out how to get government help with food, housing, utilities, health care, phone and internet service, Social Security, death benefits and more.
https://www.usa.gov/benefits
​​Help with finances
Getting paid to care for a family member
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USA.gov — Find out if a state, long-term insurance policy, or veterans program will pay you to provide care for a family member.
https://www.usa.gov/disability-caregiver -
AARP — There are limited options for getting paid to provide care for a family member, but new options are emerging, so research what's available in your state.
https://www.aarp.org/caregiving/financial-legal/info-2017/you-can-get-paid-as-a-family-caregiver.html -
Careforth — Find out if you qualify for payment as a family caregiver. You may be eligible for home visits from a nurse and care manager or phone-based one-to-one support.
https://careforth.com/
Finding low-cost medical care
- Medical clinics explained — You may not have to pay the full cost of care at a medical clinic.
https://www.healthline.com/find-care/articles/articles/what-is-a-medical-clinic -
Ten types of medical/health clinics explained — Find details on mental health, primary care, specialized, sexual health, addiction, community health center, retail, rural, dialysis, and mobile clinics. Includes links to search tools to find low- or no-cost clinics in your area.
https://www.healthline.com/health/types-of-health-clinics -
Program of All-inclusive Care for the Elderly (PACE) — Learn how your loved one may be able to receive — at no cost — the coordinated care needed to live at home rather than in a nursing home. This federal/state program includes medical care and transportation to appointments, personal care, medications, rehabilitation, socialization opportunities, and more, all in one place.
https://www.npaonline.org/
Finding low-cost medications
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GoodRx — Get discounts on medications for common conditions, even if you have insurance. You may be able to get short-term refills with a telehealth visit you set up through this site.
https://www.goodrx.com/ -
CostPlus — Get discounts on medications for common conditions, even if you have insurance. Have your prescriber send a new prescription, and your medications will be delivered directly to you.
https://costplusdrugs.com/
Finding information on paying for long-term care
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US Department of Health and Human Services — Learn about what types of care the government pays for.
https://acl.gov/ltc -
​AARP — Find information on many aspects of paying for long-term care.
https://www.aarp.org/caregiving/financial-legal/info-2022/avoiding-long-term-care-planning.html
Help at home
Finding help with hands-on care
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AARP — Find time-saving tips on managing multiple medications.
https://www.aarp.org/caregiving/health/info-2017/medication-management.html -
AARP — See videos for family caregivers on managing medications, caring for wounds, treating pressure ulcers, maintaining ostomy bags, helping someone transfer from bed to a wheelchair, and more.
https://www.aarp.org/ppi/initiatives/home-alone-alliance/
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Finding local services and resources
The types of services that can help family caregivers manage care at home include these:
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Nursing care, also known as home health care, for giving medications, cleaning wounds, and more
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Home care for non-nursing tasks such as household chores, errands, companionship, personal care, and medication reminders
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Physical therapy (PT) for help with movement, occupational therapy (OT) for help with performing daily activities, and speech therapy for help with communication or swallowing​
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Care management/case management for help understanding your options and handling many organizational and administrative tasks for you
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Geriatric/aging case management for help navigating the healthcare system, focused on older adults
To find those types of services near you (and services such as delivered meals, respite, transportation, adult day care, senior centers, and emotional and spiritual support), visit these websites:
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Family Caregiver Alliance — Click on your state to find local resources for family caregivers.
https://www.caregiver.org/
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ARCH National Respite Network and Resource Center — Use the National Respite Locator to find someone who can take over your caregiving responsibilities for hours or days, so you can get a much-needed break.
https://archrespite.org/respitelocator -
Eldercare Locator — Enter your zip code or a topic to find assistance in your community for older adults and family caregivers. Find the name and location of your local Area Agency on Aging (AAA).
https://eldercare.acl.gov/Public/Index.aspx -
AARP's Family Caregiver Resource Guides — Find many types of caregiving assistance and services in your state.
https://feeds.aarp.org/caregiving/local/info-2021/state-caregiver-resources.html?_amp=true -
National Institute on Aging — Learn what a geriatric care manager does to help you manage as you care for an older friend or family member.
https://www.nia.nih.gov/health/what-geriatric-care-manager
Understanding Medicaid waivers
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Medicaidwaiver.org — Learn how Medicaid can help eligible people receive long-term care at home or in the community rather than in a nursing home or hospital.
http://medicaidwaiver.org/
Ensuring safety
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Life Alert — Use this medical alert system to summon help for anyone having a home health emergency.
http://www.lifealert.com/ -
PillMap — Use this companion to your traditional weekly pill organizer as a visual guide to make sure medications are correct.
https://pillmap.com/ -
Parentgiving — See simple steps to increase safety at home, in the car, and beyond.
https://www.parentgiving.com/elder-care/50-safety-tips-for-seniors/
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Finding information on family caregiving skills, products, and support
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Caregiving Pathways — For help with any aspect of family caregiving, schedule a free consultation.
https://caregivingpathwaysllc.hbportal.co/schedule/66d8cd1a9bc489001fd8e8e9 -
The Caregiving Years Training Academy — Learn skills, techniques, and strategies to help you care for a family member and formalize your role as a family caregiver through the Certified Family Care Manager training. https://www.careyearsacademy.com/cfcm/pilot/
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Smart Caregiving — Find products created by and for family caregivers plus round-the-clock telephone or email support.
https://smart-caregiving.com/​​​
​​Help with nursing homes and hospitals
​Finding a local nursing home
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Search online for a professional placement specialist or referral agency near you. There is no cost to the family for this service. These companies work with you to help you find living options that suit your family's needs and preferences when the person you're caring for can no longer live safely at home. These referral agencies are paid a commission by the facility for each placement. They often can help you navigate the process and limited options of paying for long-term care.
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Call local assisted living facilities and skilled nursing facilities (nursing homes) to ask for a placement specialist they would recommend.
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Medicare.gov — Compare Medicare-certified nursing homes near you based on the quality of care they provide and their staffing levels. The nursing homes include those that provide rehabilitation services. A nursing home is an option for someone who can't be cared for at home and needs 24/7 nursing care.
https://www.medicare.gov/care-compare/?redirect=true&providerType=NursingHome -
Mass.gov — See the steps to choosing a nursing home, and use the Nursing Home Survey Performance Tool to see information about Massachusetts nursing homes complaints. Other states may have similar resources.
https://www.mass.gov/guides/choosing-a-nursing-home -
National Council on Aging — Learn how to evaluate nursing home memory care units for people with dementia.
https://www.ncoa.org/adviser/local-care/memory-care/#:~:text=A%20memory%20care%20facility%20provides,around%2Dthe%2Dclock%20supervision -
Ombudsman Program — Get help from this state-based program focused on the health, safety, welfare, and rights of people living in long-term care settings, such as assisted living residences and nursing homes.
https://www.gao.gov/products/gao-24-107209
Managing a hospital stay
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Caregiving Pathways — Yes, that's us! If a family member is in the hospital or you worry that a health crisis may occur, download a free family caregiver guide to managing the hospital stay.
https://www.caregivingpathways.com/the-hospital-stay -
The Leapfrog Hospital Safety Grade — Find your hospital's A–F safety grade and more.
https://www.hospitalsafetygrade.org/ -
The New York Times — Learn how financial incentives influence the length and cost of hospital stays.
https://www.nytimes.com/2016/01/05/upshot/the-hidden-financial-incentives-behind-your-shorter-hospital-stay.html -
Medicare.gov — See how a Medicare patient's status (inpatient, outpatient, observation) affects hospital costs.
https://www.medicare.gov/what-medicare-covers/what-part-a-covers/inpatient-or-outpatient-hospital-status -
You can ask for a consult with specialist physicians many people are not aware of. These include pain management, palliative care (symptom management), physiatry (focused physical rehabilitation), and wound care. See the Cleveland Clinic list of 30 types of doctors and what they do.
https://health.clevelandclinic.org/types-of-doctors -
You can also ask for a sitter or companion as an extra pair of eyes and to keep your loved one company when you can't be there. Ask what other services may be available that the hospital doesn't advertise.
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Managing palliative care
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National Institute on Aging — Understand the difference between palliative care (symptom management at any time) and hospice (comfort care toward the end of life). You don't need to be on hospice to receive palliative care.
https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care
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​​Help with the end of life
Managing hospice and the end of life
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Caregiving Pathways — Before a care plan becomes an end-of-life plan, ask about our family caregiver guide to managing the end of life. And find out what a medical order for life-sustaining treatment (MOLST or POLST) is and why everyone 18 and older needs one.
https://www.caregivingpathways.com/individualsandfamilies -
Medicare.gov — Learn how hospice care works. It's free and it can improve quality of life and length of life. For someone expected to live for 6 months or less, you get a dedicated team of doctors and nurses on call 24/7, counselors (for caregivers, too), therapists, aides, and more at no cost to you. You can also get free medication, equipment, and medical supplies. Pain management is a significant focus.
https://www.medicare.gov/what-medicare-covers/what-part-a-covers/how-hospice-works -
The Conversation Project — See the Conversation Starter Kit and other tools to help your family begin difficult conversations about the end of life.
https://theconversationproject.org/ -
International End of Life Doula Association — If you’d like help with an end-of-life vigil, use the registry on this site to locate an end-of-life doula.
https://www.inelda.org/find-doula/
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​​Help with Medicare and Medicaid
Managing Medicare and Medicaid
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Medicare.gov — Learn how Medicare works. Medicare is not state specific.
https://www.medicare.gov/what-medicare-covers/your-medicare-coverage-choices/whats-medicare -
American Council on Aging — Learn about Medicaid eligibility requirements for each state.
https://www.medicaidplanningassistance.org/state-specific-medicaid-eligibility/ -
American Council on Aging — Fill out an online form to be connected with a Certified Medicaid Planner for your area. A consultation is free.
https://www.medicaidplanningassistance.org/fmp-form/
​Help with stress and logistics
Managing family caregiver stress
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Office on Women's Health (U.S. Department of Health & Human Services) — Read about the stress of caregiving in a fact sheet outlining the signs, symptoms, and management of family caregiver stress.
https://womenshealth.gov/mental-health/good-mental-health/stress-and-your-health -
CaregiverStress.com — Find worksheets that help you manage the many aspects of caregiving. If the person you're caring for has dementia, give the Dementia-Related Behaviors Chart to his or her doctor. http://www.caregiverstress.com/senior-safety/health-information- management/senior-emergency-kit/worksheets-checklists/
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AARP — See helpful information on managing your feelings about caregiving (even the challenging feelings). ​​​
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When family caregivers feel used and angry about it
https://www.aarp.org/caregiving/basics/info-2021/avoid-feeling-used-angry.html -
Living with guilt
https://www.aarp.org/home-family/caregiving/info-03-2013/ambivalent-about-caregiving-role.html -
Overcoming feelings of dread and finding joy
https://www.aarp.org/caregiving/life-balance/info-2020/overcoming-dread-negative-feelings.html -
When caregivers dislike 'loved ones' they’re caring for
https://www.aarp.org/caregiving/life-balance/info-2018/when-family-caregivers-dislike-loved-ones.html​ -
Work-life balance to avoid burn-out while juggling caregiving with work and childcare responsibilities
https://www.aarp.org/caregiving/life-balance/
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Using online tools to help coordinate information and tasks
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Caring Bridge — This site acts as a central coordination hub for you and your family and friends.
https://www.caringbridge.org/ -
Doodle — Scheduling family meetings is so easy with this site.
https://doodle.com/ -
Lotsa Helping Hands — Set up a Help Calendar and send the link to people who ask how they can help. You can list things like providing a family meal, giving a ride to a doctor appointment, or scheduling a visiting time.
https://lotsahelpinghands.com/ -
eCare21 — Long-distance caregivers can use this app and a wearable smart device to monitor a loved one’s heart rate, glucose levels, and other health data.
https://ecare21.com/ -
Medisafe — Use this app to monitor medications, see side effects to look out for, and more. Doctors can use the app to connect with patients.
https://medisafe.com/
Help with health conditions
Information about specific conditions
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National Library of Medicine — Find a list of organizations that focus on specific health conditions.
https://medlineplus.gov/organizations/all_organizations.html -
U.S. Office on Women’s Health (part of the U.S. Department of Health and Human Services) — Find information on dozens of health topics. Much of the information is not just for women.
https://www.womenshealth.gov/a-z-topics/ -
The Office of Minority Health (part of the U.S. Department of Health and Human Services) — See information on health issues common to African Americans, Asian Americans, American Indians/Alaska Natives, Latinas, Native Hawaiians, other Pacific Islanders, and more. Language assistance is available for many languages.
https://minorityhealth.hhs.gov/omh/content.aspx-?ID=146&lvl=1&lvlID=3
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Black, Indigenous, and People of Color (BIPOC) Mental Health and Substance Use
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Southeast Addiction Center — Find 50 resources for Black men who are struggling with substance use and/or mental health.
https://southeastaddictiontn.com/50-addiction-mental-health-resources-for-black-men/ -
Lexington Addiction Center — Find an in-depth guide written for Asian American college students.
https://lexingtonaddictioncenter.com/28-addiction-mental-health-resources-for-asian-american-college-students/ -
Southeast Detox — Find extensive mental health resources, including a guide that features more than 50 resources for Black women.
https://southeastdetoxga.com/black-women-addiction-mental-health-support/ -
Prevail Recovery Center — Find extensive resources, including a guide featuring Black LGBTQ+ listings for mental health and substance use support.
https://prevailrecoverycenter.com/
https://prevailrecoverycenter.com/black-lgbtq-recovery-resources/ -
Centric Behavioral Health — Find abundant resources for the Asian American LGBTQ community.
https://centricbh.com/aapi-lgbtq-substance-abuse-and-mental-illness-support/ -
Drug Rehab USA — Find the Native American addiction treatment center closest to you.
https://drugrehabus.org/rehabs/treatment/native-american/ -
Live Another Day — Find addiction and mental health resources for all.
https://liveanotherday.org/
COVID-19 resources
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AARP — Download an overview called Preparedness for Caregivers during COVID19.
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University of Michigan — See a selection of COVID-19 resources for patients and families.​​​​
Help for veterans
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Federal Benefits — Learn about government benefits for veterans.
https://www.va.gov/opa/publications/benefits_book/2017_Federal_Benefits_for_Veterans.pdf -
Military Caregiver Support — Find resources for military caregivers.
https://www.woundedwarrior.af.mil/Portals/23/documents/083016_CaregiverSupportResources2016.pdf?ver=2016-08-30-163523-473 -
Respite — Get information on respite relief for military and veteran caregivers.
https://hiddenheroes.org/respite/
Additional resources
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Rosalynn Carter Institute for Caregiving — Discover extensive additional resources.
http://www.rosalynncarter.org/caregiver_resources/ -
The Caregiving Years Training Academy — Put your caregiving expertise to work. Learn how to start a business helping other family caregivers.
https://www.careyearsacademy.com/transform/ -
Northern Westchester Hospital — This Northwell Health hospital has a family caregiver center that inspired the creation of many other centers. This site features a diverse list of resources that include a number of blogs for family caregivers. https://nwh.northwell.edu/your-visit/ken-hamilton-caregivers-center
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