The Whitworths of Arizona, bringing science to you in everyday language.

Friday, May 27, 2016

The Internet: A Useful Tool

I’ve been using the internet for more than 25 years. In the early 1990’s, it was a place where I made friends via chat groups. Then friends and family began to get email addresses and I began emailing them instead of writing letters or phoning. By now, it is my telephone book, my cookbook, my research library and my encyclopedia. I tend to communicate via email instead of phone, and I visit my distant loved ones via Skype.

Many seniors aren’t as comfortable with computers or the internet. They might look recipes up in favorite cookbooks and go to the library or ask a doctor or other expert for information. Even so, most do have email mainly, they say, “to keep up with the grandkids.” Many go on Facebook for the same reason. So do I! But for caregivers especially, there is so much great information and support available on the internet, that it is worthwhile making the effort to learn a bit more about how to use these resources. Here are some of the ways the internet can help caregivers:

Support groups. Probably the most important way that the internet can help caregivers is through the growing number of support groups available online. I just can’t say enough about the value of being in a support group. Local groups, where you can talk face-to-face—and share hugs!—with others who have had similar experiences, troubles and joys are definitely wonderful. There are now over a hundred LBD support groups in the US and hopefully, one is close enough for you to be able to attend.

Then there are the virtual groups. Even if you do have a local group, you may need to vent or ask a question at 3am. That’s when these virtual groups come in handy. You get the same “we are in the same boat” feeling and the same caring responses. Most of these groups are closed, i.e., you must apply for membership and be accepted before you can see the posts or post yourself. Most are open to anyone who applies, but some have limits. I’ve only listed our favorites here:

  • Facebook Lewy Body Carers Group. Of all the FB groups, this one reminds me most of a local group with very supportive caregivers, ranging from new to those who’ve been around for years.
  • LBD Caregivers Yahoo Group—the first virtual LBD support group and still going strong. Jim was one of this group’s first members and he still monitors it.
  • LBD Caring Spouses Yahoo Group—open only to spouses of loved ones with LBD. “We not only care for our loved ones, we care for each other as well.” Jim considers this his home group. He has been with it since it started.
  • LBDA Forums, discussions on a variety of subjects--open for reading, but you must sign up to comment. These forums are one of my go-to resources for information about LBD from “the horses’s, uh, caregiver’s mouth.”

Drug Information. Because LBD is such a scary disorder where drugs are concerned, every LBD caregiver needs to be well-educated about these drugs. There are many places on the internet where you can find out about drug side effects and interactions. A warning: Use these sites in addition to asking your pharmacist, not in place of. Your pharmacist can be much more specific with you. There’s a long list of drug information resources in our Managing Cognitive Issues book, but start with the three drug lists on LBDtools.

LBD information. LBD is a baffling disorder and can appear in many forms. A well-informed caregiver can do a much better job of caregiving. You will have a better idea of what to expect and more importantly, how to deal with the symptoms—which ones to adjust to and which ones to be concerned about. You will learn ways of dealing with frustrating situations that won’t make them worse instead of better. Again, use these sources in addition to what you get from your physician, not in place of.

Documentation. Although many still use a simple spiral notebook to keep track of a loved one’s symptoms and medications, consider trying out a free site like CareZone. It allows you to a journal, a calendar, and a contact list all in one place. A computer, if not the internet, is also helpful in keeping track of your loved one’s symptoms and medications. It is also accessible by mobile devices so if you use a smart phone or ipad, you can take it with you to the doctor’s office.

You may be able add other ways the internet has been helpful to you. Please feel free to comment!

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

1 comment:

  1. These are all excellent suggestions! There is one other Facebook support group that has a slightly different membership, but is also highly caring and collegial, "Lewy Body Dementia Support Group" which may be worth participating in. I try to be active in a few, all of which have excellent information.
    You folks are doing a great thing! Thank you for all the efforts -- it makes a big difference.
    Best wishes from Canada!