Alzheimer’s Action: Seven Ideas to Help Caregivers Take Back Some Control

by Nancy Wurtzel on January 15, 2013

This post was originally published last week in The Alzheimer’s Reading Room, which was voted #1 in Alzheimer’s blogs in 2012 by Healthline. If you have not checked out The Alzheimer’s Reading Room, you need to do so today!

Helpless.  That’s what I often feel when I’m dealing with my mother who has Alzheimer’s disease.  I worry about what is ahead, how long she will live and how deep into the disease she will fall.

I wonder when there will be some significant medical breakthroughs and if I also will die the long, protracted death that is dementia.

Sometimes, I get so caught up in the angst, I actually wring my hands.

Wringing my hands will get me nowhere, so that’s when I get tough with myself.  I start the inner talk.  You know, that stern internal voice where you tell yourself: “Pull yourself together, Nancy!  Man up! Your situation could be a lot worse!”

Stern talk can be helpful.  However, I’m finding that action makes me feel even better.

In my case, taking action often means writing a blog post or an article for a publication.  It’s highly therapeutic — a balm that helps sooth my frazzled nerves and lift my bad attitude.  However, you don’t have to write a single word to take what I like to call, Alzheimer’s Action.

Here are seven Alzheimer’s Action steps you can start today:

1. Educate Yourself.  Do some research to learn more about the type of dementia that is in your life.  There are some incredible books, periodicals and websites offering insight you may find helpful.  Knowledge is power, so take back a bit of your power by being more informed.

2.  Connect With Others. More than 5.4 million Americans have Alzheimer’s disease and it is our nation’s sixth-leading cause of death.  That number will continue to rise as the huge baby boomer generation marches past middle age. Feeling helpless?  Try connecting with other caregivers online or in your local community to see what action steps might be available.  Never underestimate the power of the caregiver.

3. Let Your Voice Be Heard.  Finding a dementia cure is imperative.  Reach out to elected officials.  Let your local and national representatives know you are counting on them to fund the necessary research to find a cure for dementia. Don’t take no for an answer.

4. Take an Active Role.  Join the Alzheimer’s Prevention Registry, and you might be selected to take part in clinical trials or research.  The registry is open to everyone — whether or not you have dementia in your family.  Wouldn’t it be incredible to play a actual roll in stopping this terrible disease? Go here to learn more:  https://registry.endalznow.org/

5. Get Involved and Make a Difference.  Volunteer your time by getting involved in one of those ubiquitous Alzheimer’s fund-raising events.  No, you do not have to organize a huge event on your own. Even taking part in annual walks or giving your time in small ways are good action steps.  Who knows, you may make some new friends and feel better about yourself.

6. Find a support group.  A support group of like-minded people will give you a forum for venting, listening to others and perhaps even getting some good advice.  You may think it is not right for you, but give it a try and consider it an important action step.  Keep in mind that it could take a few visits to find the right group for you.  If there is not a local support group, then consider starting one yourself.

7. Donate Your Brain.  Dementia researchers need to study both healthy and dementia-affected brains, and not enough people donate their brains.  Face it, you won’t need your brain — or any other organ — when you are dead, and it is no different than donating a kidney, heart or cornea.  Who knows?  Your brain could  be part of a major breakthrough and wouldn’t that be cool?  Here are two websites to visit for more information: 1) The Harvard Brain Tissue Resource Center  —  http://www.brainbank.mclean.org/ and 2) The Boston University Hope Study program  —  http://www.bu.edu/alzresearch/research/recruiting-studies/hope/brain/

Feeling helpless is a common caregiver emotion.  Yet, wallowing in feelings of despair won’t help anyone and you will quickly dip into a downward spiral.  Instead, consider taking some lzheimer Action steps make you feel better about your situation and about yourself.

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