Caregiving Resources and support

Every person who experiences a serious illness or injury needs help. And everyone who provides care for a loved one needs help too: Everyone. The biggest mistake anyone makes is to tough it out, wait too long to get help, and end up with a crisis. 

In almost 40 years of nursing, I have seen this happen much more often than not. And it doesn’t need to. Broken hips, hurt backs, and unnecessary hospitalizations lead to decreased choices and unfortunate outcomes for people who are ill and for their caregivers. Try to be proactive. Assess your needs realistically, BEFORE the Crisis. Take preventative action. Get the help you need: You’ll be glad you did.

The lists below include a variety of organizations, including the Alzheimer's Association, American Cancer Society, ALS and MS associations, and others.  These organizations are well funded and have a variety of local resources to help you navigate the disease and caregiving.  Check them out.   Please scroll down if you need Resources and Support for caregiving or for specific help with resources and support now.  

Most people at least need some hourly caregiving help a few times a week or a few nights a week, especially if they are not sleeping.  It's the most necessary and toughest thing to convince a caregiver, but no one is Superman or Superwoman, and no one can do long term intensive caregiving without becoming ill themselves--and that is a problem for you and for the person you are providing care for. 

CAREGIVING HELP 

 National Alliance for Caregiving's mission is to value, supports and empowersfamily caregivers to thrive at home, work, and life.  

The National Family Caregiver Support Program (NFCSP) provides grants to states and territories to fund various supports that help family and informal caregivers care for older adults in their homes for as long as possible.

The Department of Health and Human Services: Across HHS, agencies provide resources for caregivers who take care of an aging, seriously ill, or disabled family member or friend. Learn more about being a caregiver and locate resources.

USA.gov: Help for caregivers for a parent, spouse, or child with special needs. These resources and suggestions can help you find emotional and task support.  

Caring Info is a one stop shop for caregiving help. It provides excellent resources and information for caregivers, including preparing and getting organized to become a caregiver,  caring for a veteran, caregiver abilities, duties, and responsibilities, and an extensive list of  caregiver resources.

Family Caregiver Alliance has a variety of educational and support related materials, not only in English, but also in Spanish, Vietnamese, Tagalog, Chinese.

The following is just a small starter list of organizations/web sites which provide information, support, or resources for people who are ill, injured, or elderly. National organizations such as these can be great resources, often providing more concrete help than one might expect and helping narrow down other reliable organizations. Note: Sadly, hourly caregiving assistance is something you almost always have to pay privately for and it does not come cheap. 

First, ask family and friend if they have used or heard of good caregiving assistance, or elder care locating help. Check if a family member or friend can help you sleuth through organizations which can provide resources for you.   

RESOURCES/ORGANIZATIONS

•  Eldercare Locator: This is a public service of the US Administration on Aging which connects older adults and families with services they need. It also has info on Caregiver Support. The phone number is 1-800-677-1116. 

• This consortium of Areas Agencies on Aging (AAAs) is composed of over 600 organizations nationwide serving people over the age of 60 in their local areas. It helps people figure out how to pay for care.  

• Meals on Wheels: serves good, solid meals to seniors in need in every community in America. 

• Alzheimers.gov is the federal government portal to information on Alzheimer's disease and related dementias care, research, and support. The Alzheimer’s Association programs and support services for persons with dementia. The 24 Hour Hotline is: 1-800-272-3900. There is also the Alzheimer's Association, which has information about the disease as well as resource locators for every state.  

• The American Cancer Society has free resources to support people with cancer and their loved ones. These resources are available for people with cancer, caregivers, or friends and family who need help finding free or low-cost resources available in your area. Included in help found on the web site is free rides to treatment and places to stay free of cost.  Also, there are links to local support groups, a 24 hour hot line, and video chats available to all in need of resource assistance.  

•  Candlelighters Childhood Cancer Foundation  Provides both information and support for parents caring for a child with cancer, including options for financial or educational support.    phone: 1.800.366.2223

•  The American Heart Association provides information on various kinds of heart disease, nutritional info, and connections to learning CPR.  Phone: 1.800.242-8721

• The Parkinson’s Foundation, (phone: 1-800-4PD-info: 473-4636) has information about Parkinson's Disease, Living with Parkinson's, and Resources and Support.

•   The National MS Society, provides info, support, and resources to anyone with Multiple Sclerosis, or their caregivers.

•   The ALS Foundation, also has information, resources, and support available to all who have Lou Gehrig's Disease/also known as  amyotrophic lateral sclerosis.

•  The Brain Injury Association also provides an array of information and support opportunities.  Other disease or disability-related groups have web sites, phone numbers, resources, supportive assistance for patients, caregivers, family or friends with specific needs. 
•  National Hospice and Palliative Care Organization1.703.837.1500www.nhpco.org 

Another resource is consultants who meet with you and your loved ones to ascertain care needs and point you in the direction of organizations or facilities which can help.  Sometimes these are called Navigators.  These health care professionals help patients and family members overcome obstacles in care and treatment.  

Note: Please be aware: some of these consultants are paid for by insurance companies, health plans, facilities, and organizations.  Be sure to ask if they have a fee arrangement with the persons/organizations to who you are being referred.  Who do they work for?  Is the organization/program you are being referred to pay the navigators?  Following the incentives in health care help you to know who is connected and what is their motivation.  It may be all on the up and up, it's just helpful to ask so you know before you contract with someone.  

The key is to sleuth what kind of help you need and make a “care quilt” of friends, neighbors, church or community or organizational or agency assist and paid help. Patch together different kinds of care at the times you need it. A friend coming for an hour for you to get to the grocery store is super important, as is someone to help with house-cleaning, laundry, or food prep or cooking. 

Google resources for caregivers in your area.  It can be overwhelming, at first. Try and go a few listings down, not those listed as adds.  Make a list, and start emailing or calling. Advocate for the assist you need. Keep notes (in a note book or on a computer— whatever works for you) of who you’ve spoken to at which organizations and what kind of help they have to offer. Even if you don’t need something like Meals on Wheels now, you may at some time in the future. Having organized notes now will save you time and energy later.

It all feels overwhelming: it’s true. Most people living the life of a caregiver don’t have the time to research this and that organization or fill out this or that mountain of paperwork. Even sleep is hard to come by. But unless you do prioritize the time you need to get caregiving assistance (or ask someone to do this for you), rough days and exhaustion are sure to increase. And injuries or incapacity will follow.  

Start with a google or two from the above resources, and continue from there.  You don't have to read about all the resource help right away: it can start the "too much factor."  But if you can get some help or resource support, it might make all the difference.  Since none of us know what we don't know, connecting with an organization that does, is helpful.