When your elderly loved one’s health fails, your mind goes into caregiver overdrive. You want to get all the facts and best research concerning his condition or illness. In Part One of this 2-part article, we discussed how to get the most information out of your doctor visits, both the General Practitioner and the Specialist. In this article, we’ll discuss how you can track down reliable information from other sources beyond the medical professionals.
The Public Library
If you are not computer literate, the library is the best and cheapest source of information. Librarians are trained in helping track down information. If you are dealing with something serious, you may not be thinking clearly, so tell the library what you are looking for and why and let him or her do what they do best.
Often you can “order” information and have the items (books, DVDs, etc.) delivered directly to your local branch. You can check when the items are in generally by making a phone call or having someone check the account online.
When it comes to medical conditions, you want the latest research and information. By the time a book is published, it’s already outdated, so consider that as you borrow and buy books. Don’t get discouraged by what you read. Medical breakthroughs, research and information comes out daily.
Use a book as a starting point. Even if some of the information is dated, you will be led to other resources. For example, if your loved one will now have to deal with a restricted diet, books can lead you recipe books. If you need medical devices, you may find catalogues where you can shop at home for the items.
Some hospital teaching schools have libraries with up-to-the-minute research. If you have one in your town, check to see if the public in general can use the facilities. You may not be able to check the information out, but you can use it in the library, make notes and photocopy.
What is good about the Internet is also what is extremely horrible about the Internet. You have your own personal CNN: all information, all the time. The Internet brings the best information directly to the consumer. Unfortunately, it’s also a forum for trolls who want to stir up trouble.
Start with information you gathered from the doctor during your initial visits. As detailed in Part One of this article—Caregiving: When Your Elderly Loved One is Ill. How to Get the Information You Need (Part One of a Two-part Article)—you should have asked for a list of national organizations and resources for your loved one’s condition. Start your Internet search using these.
As they were recommended by the doctor, these will be your top tier in the information gathering. The doctor’s recommendation gives the material more weight than other things you may find on your own.
Let’s use “diabetes” as the hypothetical condition your loved one has. Your doctor would have led you to the American Diabetes Association as a starting point. Once on the site, use specific information your doctor gave you regarding the patient’s particular symptoms/disease pattern. You’ll get information that’s more relevant to your loved one. As you read, you’ll see terms you don’t understand, and you’ll find more resources you want to check out. Be sure to keep a notebook nearby so you can jot down things to follow up on.
A big problem with searching on the Internet is that you’ll find yourself jumping from one site to the next. You’ll lose track of what you’ve researched and where it came from. Worse you’ll get “information overload” and get confused.
Keep a list of reliable Internet research sources as you may want to return to them. Write the name of the site, the web site address (do a cut/paste using your word processing program to make this easier), as well as a simple rating system such as “+” (for especially good sites) or “x” if the website was not helpful so you won’t waste time going back to it.
Think major names
Whether or not you agree with the newspaper’s politics is irrelevant when you are researching medical conditions. Start with the big-name media outlets-the New York Times, for example. Newspapers cover health issues as well as groundbreaking research. Search for the New York Times under Health. Then look up a specific condition. Look at other big-name newspapers: Christian Science Monitor and the Washington Post. Look at your local daily newspaper to find local resources.
Other reliable names to look for are Prevention, Reader’s Digest, Health Magazine, Women’s Health and Men’s Health. When you search for national organizations related to a particular illness, you will find magazines that are very specific to the illness. You probably have publications you know which provide helpful articles. Search the publication for a website.
As you research on the Internet, be careful about ending up on bogus websites. Marketing whizzes stack search engines with all sorts of search terms so that when you research a term like diabetes, you may get rerouted to a widget-selling site in a foreign country. As you search on the Internet (for any reason), always look up in the address line to make sure the address you are looking at matches the site you thought you were going to.
Organize your information
In Part One of this article, I discussed the need to put together a binder to keep all of the doctor reports, lab results and the like together. Likewise, it’s imperative to organize the information you discover on the Internet or at the library. Caregivers are in it for the long haul, so jotting questions and information on the back of an envelope is out of the question.
Use your word processing program to create individual files to keep your thoughts organized. Don’t put all of your information in one document. As time goes on and you research more and more you’ll end up with a document that is too long to deal with.
Initially you may want to name files: Resources (where you list websites along with a bit about them and what they can do for you); symptoms; medications; disease progression; glossary (to give words and definitions particular to your loved one’s illness and questions (a file in which you list all of the things you want to follow up on). As time goes on you’ll develop a better system specific to your needs.
When you first found out your loved one had a specific disease or illness, I’ll bet you started hearing about it more or more. That’s because you became more aware of that particular thing. Now that it is personal to you, you’ll notice things you’ve never noticed before. A friend may have someone going through the same thing you are.
After your clinical research is well underway, you’ll want to start reaching out to those who can give you personal experience. If nothing else, comparing notes with people in a similar situation will affirm to you that you are on the right track and doing the right things.
I’ve recently entered the world of caregiving for a parent who has been diagnosed with Bulbar Onset ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease). Caring for someone who is both elderly and who has a chronic or acute medical condition presents particular challenges. As we go on this caregiving journey together, look for my for upcoming caregiving articles on Associated Content. For next month’s assignments I’ll be writing on support groups and the dangers of fraudulent organizations and people who prey on the sick.
For more information, please review Part One of this article—Caregiving: When Your Elderly Loved One is Ill. How to Get the Information You Need (Part One of a two-part article).