Whoa. Making sense of the Internets

Alzheimer's is a disease that can be very isolating to the person who has it and to the caregiver(s).  We hope through our blog, Facebook, Twitter we can help to create a community not just for us but for other caregivers and people with this disease.

The internets can be inundating for someone who has been thrown into the role of caregiving.  There is so much to navigate - websites that help with being an advocate for the disease, websites to learn how to be a good caregiver, and on and on.

Initially we found websites that talked about Alzheimer's and other types of dementia in regards to moderate to late stage.  Shit, we are early stage - mild to moderate.  Mom's memory and her judgment now are moderate, but lots still fall under mild stage.  And who really has the time to figure out which ones are more helpful, give us the right info for where she is now, etc.?

Twitter has been a saving grace, finding a community of caregivers around the world who have been through similar situations and offer advice and support.  We read each other's blogs, have twitter chats and conduct tweet-a-thons to raise awareness.  We follow a woman, Mary Agnes Kelly on Twitter who has Alzheimer's, she dictates to her daughter and her daughter tweets out her mom's thoughts.  WBUR did a beautiful story about her http://www.wbur.org/2011/10/21/alzheimers-twitter.

Maria Shriver's website has a fabulous blog where often Ellen and Daniel Potts are guest bloggers.  http://www.mariashriver.com/blog/2011/12/alzheimers-caregiver-tips-holidays  They have written a helpful, insightful book called A Pocket Guide for the Alzheimer's Caregiver and have a wonderful website and blog with great tips, thoughts, ideas http://dementiadynamics.com/blog/.

This past August, NCAA coach extraordinaire Tennessee Lady Vols Pat Summit announced she had early onset Alzheimer's.  She has set up a foundation for awareness and research.  Read her story and give.  She is a fighter and will not give up http://www.patsummitt.org/Default.aspx  http://www.youtube.com/patsummittfoundation.  Pat's inspiring words, 'I have always told our players our greatest opportunities are disguised as our greatest obstacles.  It is time to treat this obstacle as an opportunity and a stepping stone to a cure.'

If you want to do more than donate, check out US Against Alzheimers http://www.usagainstalzheimers.org/ and lobby Congress to get off their butts, help fund research so we can have a cure by 2020.  Scientists are saying they are close, but research needs to be funded.

We will continue to pepper our posts with websites we have found helpful.  Please let us know of any you like.   The best advice I have found so far: Be there for each other.  Spend time together.  Laugh.  Cry.  For those who are friends of caregivers: remind us to eat healthy, to laugh, be a listening ear.  This journey is a marathon, not a sprint.

Back at ya Voyageur.