Stage One, section 3: Educating Yourself

Start doing research to learn all you can about your care recipient's physical and mental conditions and about resources for frail older persons and support for caregivers.

Before you begin your research, try to get a correct diagnosis of your care receiver's condition so that you will know what you're dealing with, what to expect as the condition changes, what kind of specialist your care receiver should see, and what kind of support groups would be right for you and your care receiver. Educating yourself for caregiving depends, in part, on having the correct diagnosis.

A correct diagnosis of memory loss is very important. Sometimes treatable illnesses such as thyroid problems cause symptoms like dementia. A geriatric assessment will determine whether this is the case. The Memory Disorder Clinics also offer caregiver education and support. For more information about where to get a geriatric assessment for possible Alzheimer's diagnosis, call the Senior Helpline (727-217-8111) or visit the section of the Area Agency on Aging web site that provides information on Alzheimer's, www.agingcarefl.org/caregiver/alzheimers.

If you have trouble talking with your care receiver's doctors, get tips from the "Eldercare At Home" guide on the American Geriatrics Society Foundation web site, www.healthinaging.org. Every chapter includes advice about how to talk with professionals about the problem discussed in that chapter, and one chapter focuses on "Problems Getting Information From Medical Staff".

Once you have the diagnosis, here are some resources for educating yourself.

Helplines

The Senior Helpline maintains a database of information about government-funded agencies and private businesses that serve seniors and caregivers in Pinellas and Pasco County, Florida. Call 727-217-8111 in Pinellas. The Senior Helpline publishes the Senior Resource Directory, which includes information on Alzheimer's Disease and Related Disorders and Help Pages in addition to a list of service providers.

In other Florida counties, call the Florida Elder Helpline at 1-800-96ELDER (1-800-963-5337). If you are a long-distance caregiver, call the national Eldercare Locator's toll-free number, 1-800-677-1116 or visit the web site, www.eldercare.gov. This is a free service of the U. S. Administration on Aging.

For information about support groups, support for families affected by various diseases, volunteer opportunities, and other resources for people of all ages in Pinellas County or Pasco County, Florida, dial 211 (not to be confused with 911, the emergency number). For Pinellas resources you can also visit the web site of 211 Tampa Bay Cares (formerly Pinellas Cares), www.211tampabay.info. The 211 line also serves as a crisis counseling line, available twenty-four hours a day.

The National Alzheimer's Association National Call Center is available for information and support twenty-four hours a day. Call 1-800-272-3900.

Support Groups

Another good way to educate yourself is by joining a support group. Support groups offer informational talks, and other caregivers attending share what they have learned. You may get tips on how to manage behaviors, what medical care has proven helpful, how to find services, and more. Find out more about the group by calling ahead, and consider visiting several groups including one for general caregivers. For more information on how to pick a support group, see Stage Two, section 3.

Caregiver Web Sites

Visiting caregiving and disease-related web sites is another way to learn about caregiving. The Caregiver Web Sites section of this Handbook, also available online at www.agingcarefl.org/caregiver/Websites, includes national, Florida, and local Pinellas County web sites. Under each category, sites are listed alphabetically by the name of the organization or the name of the web site followed by the web address. Each listing has a review that mentions things to look for and how to navigate the site if needed. By using the online version, you can click on the link to visit each site.

You can find many types of web sites on our list: government, non-profit organizations, educational institutions, and commercial sites. There are sites totally devoted to supporting families affected by almost twenty different diseases or conditions as well as general health-related, caregiving, and consumer sites. Here are some examples of what you can find:

• information about diseases, drugs, and healthy living
• online support groups, caregiver classes, and prayer circles
• crossword puzzles for caregivers who need a mental break
• medical dictionaries and glossaries of Internet and Caregiving Terms
• nursing home comparisons
• forms for filing consumer complaints online
• caregiver magazines and gifts for sale
• assistive devices and adaptive clothing
• exercise and respite care videos
• discounts to caregivers shopping in catalogs and on web sites

Using the Internet is important not just because there are great caregiver web sites but also because publications printed in limited quantities are available for anyone online. For example, the Florida Department of Elder Affairs (DOEA) Elder Update Newsletter, Consumer Resource Guide, and Making Choices: Beginning to Plan for End of Life Care can be found under 'Publications' on the DOEA web site, www.state.fl.us/doea.

Caregiver Books and Videos

Take a moment to look through the Caregiver Books and Videos section of this Handbook or online at www.agingcarefl.org/caregiver/booksVideos. Many of the books and videos can be found in the Pinellas County, Florida, library system or ordered online. An example is The Fearless Caregiver, edited by Gary Barg, the editor of Today's Caregiver Magazine. This book, with articles and stories by caregivers, provides advice and emotional support. It is available for purchase on the Today's Caregiver web site, www.caregiver.com. Some books such as How to Care for Aging Parents, by Virginia Morris, are almost like encyclopedias of caregiver information.

Caregiving videos teach how to make caregiving decisions, how to communicate with someone with Alzheimer's or hearing loss, and how to perform hands-on caregiving skills like personal care and helping someone into a wheelchair. See our list for purchase information or check the library system. For example, the Gulfport, Florida library has a series of videos on communication and caregiving.

If you are a Pinellas County resident with a library card, you can reserve library books and videos from various libraries and it can be done online, often having them sent to your neighborhood library for quick pick-up. Visit the Pinellas County Public Library Cooperative web site, www.pplc.us. Cooperative Libraries provides entrance to local libraries, and Anywhere/Anytime Library covers a broader area. Remember that you can also reserve popular and classical movie videos, although you may have to go to the library that has them to pick them up, and check out time is shorter than for educational videos. Libraries are beginning to offer a few DVD?s. The Pinellas County Library Cooperative web site also includes a County Information Page with a link to the Pinellas County Law Libraries.

Pasco residents with a Pasco library card can call any of the branches to locate or reserve a book. This may be done online at http://pascolibraries.org. If requested, the book will be delivered to the nearest branch library. Pasco also participates in programs that will locate a book in the Pasco Cooperative and they can borrow it from another library system.