Resources
Having the right tools and resources can improve the caregiving experience for both you and your loved one.
We’ve gathered a list of valuable resources that are specifically designed to assist families with various important aspects of caring for a loved one.
NY Connects is your trusted place to go for free, unbiased information and assistance. We can help you link to long term services and supports, such as home care, transportation and meals. Our goal is to help individuals remain in their homes as long as possible.
NY Connects serves older individuals and individuals with disabilities of all ages. We can help families, caregivers, and professionals.
The Multiple Systems Navigator website provides easy access to helpful health, education, human service, and disability information on one user-friendly website. It is built for youth, parents, family members and caregivers that rely on support from multiple child and family serving systems.
Multiple Systems Navigator
NYS Council on Children and Families
Terms and Definitions
United Hospital Fund
Health care providers and others often use terms that you may find confusing or have never heard before.
This list offers a simple explanation for many of these terms. Note that it does not include most terms associated with specific diseases or treatments.
Being a family caregiver can be challenging in of itself, but when the caregiver experiences a health issue, job or family crisis, or another circumstance that prevents them from caring for their loved one, this can often pose a serious dilemma.
This is where EMERGENCY RESPITE services can help.
Information on how to have vital conversations
Ways to assess your loved one's needs
Tips for organizing important documents
AARP Family Caregiving Guides are designed to help develop and implement a caregiving plan for a loved one or friend.
Receive your free guide in one of three ways.
1. Download by choosing a version from this page
2. Request a printed copy by using this link
3. Call AARP at 877-333-5885 and select option 1
A roundup of federal and national resources
Information on caring for yourself
Checklists, medication charts, and contact lists
Taking your loved one to an emergency room or an urgent care center may be an option. United Hospital Fund offers a guide for each.
The Emergency Room (ER) experience can be overwhelming and confusing. This guide includes ways to help you prepare for, or avoid, ER visits. It also includes facts about what to do and expect when in the ER. You can read this guide from start to finish or just those sections you need now.
Urgent Care Centers can be very useful during those times when your family member's health care providers are unavailable, and the situation should not wait. This provides guidence on what different urgent care centers may do, the difference between and urgent care center and an ambulatory care center, and when the ER is the better option.
Download the Urgent Care Centers Guide in English, Spanish, Chinese, Russian
Additional Resources
Disease-Specific Resources
-
A compulsive, chronic, physiological or psychological need for a habit-forming substance, behavior, or activity having harmful physical, psychological, or social effects and typically causing well-defined symptoms (such as anxiety, irritability, tremors, or nausea) upon withdrawal or abstinence.
-
A nervous system disease that weakens muscles and impacts physical function. In this disease, never cells break down, which reduces functionality in the muscles they supply. The cause in unknown.
-
Alzheimer's is the most common cause of dementia, a general term for memory loss and other cognitive abilities serious enough to interfere with daily life. Alzheimer's disease accounts for 60-80% of dementia cases.
-
Arthritis is not a single disease; it is an informal way of referring to joint pain or joint disease. There are more than 100 types of arthritis and related conditions. People of all ages, sexes and races can and do have arthritis, and it is the leading cause of disability in America
-
Asthma causes swelling of the airways. This results in narrowing of the airways that carry air from the nose and mouth to the lungs. Allergens or irritating things entering the lungs trigger asthma symptoms. Symptoms include trouble breathing, wheezing, coughing and tightness in the chest. Asthma can be deadly.
-
Asperger Syndrome is a neurodevelopmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of behavior and interests
-
Autism, or Autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication.
-
Cancer is a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body.
-
Cardiovascular diseases (CVDs) are a group of disorders of the heart and blood vessels. Heart attacks and strokes are usually acute events and are mainly caused by a blockage that prevents blood from flowing to the heart or brain. The most common reason for this is a build-up of fatty deposits on the inner walls of the blood vessels that supply the heart or brain. Strokes can be caused by bleeding from a blood vessel in the brain or from blood clots.
-
Diabetes mellitus refers to a group of diseases that affect how your body uses blood sugar (glucose). Glucose is vital to your health because it's an important source of energy for the cells that make up your muscles and tissues. It's also your brain's main source of fuel.
-
Down syndrome or Down's syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is usually associated with physical growth delays, mild to moderate intellectual disability, and characteristic facial features.
-
Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.
-
Hearing loss that comes on little by little as you age, also known as presbycusis, is common. More than half the people in the United States older than age 75 have some age-related hearing loss.
-
Chronic kidney disease (CKD) means the kidneys are damaged and can’t filter blood the way they should. The disease is called “chronic” because the damage to your kidneys happens slowly over a long period of time. This damage can cause wastes to build up in your body. CKD can also cause other health problems.
-
Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system — the body system that usually fights infections — attacks healthy tissue instead.
-
Mental illnesses are health conditions involving changes in emotion, thinking or behavior (or a combination of these). Mental illnesses are associated with distress and/or problems functioning in social, work or family activities. Mental illness is common.
National Alliance on Mental Illness (NAMI) Family Members and Caregivers
Community Health Access to Addiction and Mental Healthcare Project (CHAMP)
-
Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). The immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves.
-
Parkinson’s Disease is a progressive disease of the nervous system marked by tremor, muscular rigidity, and slow, imprecise movement, chiefly affecting middle-aged and elderly people. It is associated with degeneration of the basal ganglia of the brain and a deficiency of the neurotransmitter dopamine.
-
Tourette syndrome (TS) is a neurological disorder characterized by sudden, repetitive, rapid, and unwanted movements or vocal sounds called tics. TS is one of a group of disorders of the developing nervous system called tic disorders.