Sunday, June 26, 2011

Tools for Your Caregiving Tool Belt -- Education

As a follow up to my series about finding a care facility for your loved one (“Where to Start,” “Always with the Checklists!” and “It’s Time to Tour”), I’ve compiled a comprehensive list of resources that may be of help during all stages of caregiving. The process of learning about the condition your loved one is living with to decisions about care either in or outside the home to figuring out government and other agency resources can be daunting. Finding much needed support for the overwhelmed caregiver tends to drop to the bottom of the priority list but cannot be overlooked so I have included support resources for the caregiver as well. Taking care of yourself will ultimately help make you a better caregiver.

Today we will focus on Education.  (Before we get much further, I'd like to thank Denise Brown of for coming up with the awesome concept of a "caregiver's tool belt!")

Being educated about the disease your loved one is living with is a powerful tool. Knowing what to expect from the condition and how it will affect your loved one takes away a lot of the worry when confronted with a new symptom or behavior (as a precaution, anything new should be discussed with your doctor). Education will empower you when talking with medical professionals which can be intimidating for anyone!

There are numerous organizations with information about the specific disease or condition you or your loved one is living with. These organizations can provide invaluable educational materials and resources specific to what you and your loved one’s needs may be. A few websites to get you started are listed here but keep in mind many organizations can also now be found on social networking sites such as Facebook or Twitter.

Alzheimer’s Disease (information on other forms of Dementia can also be found through these agencies):

Alzheimer’s Association (
Alzheimer’s Foundation of America (
National Institute on Aging/Alzheimer’s (
Today’s Caregiver (


American Cancer Society (
National Cancer Institute (
Today’s Caregiver (


Epilepsy Foundation ( (
National Institute of Neurological Disorders and Stroke (

Hereditary Neuropathy:

Hereditary Neuropathy Foundation (
National CMT Resource Center (
The Charcot-Marie-Tooth Association (
The Muscular Dystrophy Association (
The Neuropathy Association (
National Institute of Neurological Disorders and Stroke (
Today’s Caregiver (

Parkinson’s Disease:

National Parkinson Foundation (
National Institute of Neurological Disorders and Stroke (
Michael J. Fox Foundation for Parkinson’s Research (

I’d love to hear what organization or online resource has helped you. Please share in the comment section below so we can all give each other a little help during this caregiving journey.

Tomorrow, we will look at resources available when searching for care either in the home or at a care facility. Later in the week, we will tackle government agencies (yikes!) and end with caregiving support resources.


bccmee said...

A worthy list! I agree that it's important to become educated so there are fewer surprises when situations change.

Can't even imagine navigating the government system. Looking forward to your next post.

Trish Hughes Kreis said...

Oh, yes -- prepare yourself. It is quite the system to navigate through! :-)