The Caregiver Space is here to support caregivers, but we’re not the only organization that’s here to help! Here are resources our community has found helpful. Please note that this isn’t an official endorsement and we’re not affiliated with these organizations.
Is there an organization or resource that’s helped you that isn’t on the list? Let us know.
Guide to US Social Security benefits
The Official Social Security Website provides information on the benefits that people with disabilities can receive and how to apply for them. The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.
State-by-state guide for family caregivers
The Family Care Navigator helps family caregivers locate public, nonprofit, and private programs and services nearest their loved one—living at home or in a residential facility. Resources include government health and disability programs, legal resources, disease-specific organizations and more. Caregiving is challenging, but there are resources to help. This list is compiled by the Family Caregiver Alliance.
US Census data on disability
Healthy People 2020 focuses on promoting the health and well-being of people with disabilities. The U.S. Census 2000 counted 49.7 million people with some type of long-lasting condition or disability.1 An individual can get a disabling impairment or chronic condition at any point in life. Disability is part of human life, and an impairment or condition does not define individuals, their health, or their talents and abilities.
US Housing guide
The Disability.org’s Guide to Housing has information about government agencies and organizations that can help you find an affordable place to live. You’ll also find information about rental assistance programs, assisted living facilities and modifying your home to make it accessible.
A guide to keeping your home for the newly disabled
Treatments for patients with chronic illnesses make up more than 75 percent of the nation’s annual medical spending. Unfortunately, often, the financial burden placed on patients is too great, and they aren’t able to keep their homes.The Guide to Keeping Your Home Through Debilitating Disease is a resource guide by Mortgage Calculator that provides those suffering with a debilitating disease with the information they need to ensure they’re able to keep their home as they seek and receive treatment.
Usually when we think of children and caregiving, we think of the children receiving the caregiving. However, as more and more people are being diagnosed with chronic illnesses, more children between the ages of 8 and 18 are becoming responsible to give care to their parents, siblings, or other family members. These children are mostly from lower-income households and typically have to sacrifice their education and childhood to be caregivers, as well as minimum-waged workers to provide for their families. In efforts to raise awareness for the “lost generation” for young caregivers, we compiled a list of resources that provide inspiration, hope, and tips for them.
Caregivers in Hollywood
Many children find it inspiring and hopeful when they see a famous person experiencing similar circumstances as them. Below is a list of testimonies of some of the most famous celebrities in Hollywood providing care for loved ones.
“When we are kids, we go hunting for idols. We long to find someone who is just a little bit like us but is living a life beyond our wildest dreams…. Finding out that a celebrity was also a caregiver was a bit of an awakening. Not only are these performers actively involved in the care and health management of their loved one, but many times they have continued on to become fierce advocates for finding cures.”
“Some friendships last a lifetime. And, then there is Alana and Farrah. For Alana Stewart and the late Farrah Fawcett their friendship continues even though Alana lost her dear friend of more than 30 years in 2009. Theirs is a true love story – it’s about sharing your innermost secrets, having each other’s back, laughing when you want to cry, taking the good with the bad, never giving up on each other. This kind of friendship is rare.”
“Many celebrities who have been touched by Alzheimer’s have used their influence to help raise awareness about this disease, promote greater research funding and support families caring for loved ones with Alzheimer’s.”
Tips and Resources
Below are websites that provide support and resources for young caregivers. With those resources in mind, children can find ways to get the help they need when caring for a loved one.
“The AACY® mission is to increase awareness about the effects on children who provide care for family members who are ill, injured, elderly and/or disabled while fostering the replication of the Caregiving Youth Project model within Florida and the US; to provide direct and indirect support services for caregiving youth and their families; and, to establish the Institute on Youth Caregiving.”
“Understanding dementia as a younger member of the family can be hard. This isn’t to say that teens and young adults do not understand the technical aspects of what dementia involves. Often, many a family member, friend and sometimes medical staff will have offered an explanation of the disease. However, the explanation and experiences of others are very difficult to take on board emotionally and without prior experience. My daughter and I have written this Sharepost together with tips we hope will help young people.”
“While all caregiving has its commonalities, being a young caregiver definitely has its own unique challenges.”
Inspiration from the News
Below are two videos about young caregivers and their unique experiences of being caregivers. Seeing their peers in the same situation as them will give many young caregivers a sense that they are not in this alone.
“Chris Miller, 13, of West Palm Beach, Fla., is a free spirit always seeking the next thrill, but he also carries the weight of a responsibility that leaves him in constant fear. Chris is the primary caregiver to his grandmother Dixie Miller, 63. While his classmates are getting ready for school, Chris is busy getting his grandmother ready for the day. When the school day ends, he races home to care for Miller, whom he’s lived with for the last 10 years.”
“At 13 years old, Nickolaus Dent is his mother’s primary caregiver. He’s responsible for the grocery shopping and cooking. He cleans the house. He does all the laundry. His mother, Janine Helms, has been battling HIV for as long as Nickolaus can recall, and her health has deteriorated in the last couple of years. Nickolaus makes sure she takes her medication. He often helps her get dressed, and at times, he has helped her bathe.”