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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1 Larry Lewis January 23, 2013 at 5:09 pm

Today I decided to devote some of my regular blogging time, and part of my Healthy Lifestyles Blog to the subject of Dementia as it touches my life personally with the fact that my mum has it, and my dad and sister her caregiver struggle in a big way. Your writing has encouraged me to do this even more, and hope we can make contact one day.

2 Tracy January 23, 2013 at 9:41 am

Hi Nancy,

This is great information, and I will share it with all our Caregivers. Thank you for posting! Tracy 🙂

3 Daniel January 22, 2013 at 6:19 am

Great article, Nancy. Thanks for the tips. My uncle’s mother-in-law has Alzheimer’s. His father-in-law is struggling with having to be a caregiver. A support group (outside of family) would be wonderful for him. But he’s old school, an Italian immigrant, and just doesn’t feel comfortable joining a support group. He’s the type of person who feels he would be burdening others if he did something like this. He’s a very private person, but we’re trying!

4 Nancy Lambert January 18, 2013 at 11:44 am

That was very good. Also I believe what has helped me is humor. This is a terrible and humiliating disease. If my dad is upset repeating or what ever I can go out side come back in and start the day over. I wait about 5 mins he says in a happy voice, where ya been? and we start over. It’s great. Yes, when I walk only do it when I know he is safe. Humor helps not crush you and suck you in. You have to breath.

5 Nancy Wurtzel January 18, 2013 at 11:56 am

Oh, I totally agree — you must keep a sense of humor. In fact, I’m going to be blogging about the funny in dementia. Thanks SO much for reading and for the comment!

6 Susan January 17, 2013 at 10:13 pm

Insightful, and thought – provoking… these are excellent ideas and I will use them. As always, you are right on target.

7 Nancy Wurtzel January 18, 2013 at 11:56 am

Many thanks, Susie!

8 Tammy January 16, 2013 at 5:35 pm

Great read, Nancy. There but for the grace of God go I. It is a very real fear we all have, those of us getting up there in years. But to witness it firsthand, to see it take a loved ones mind, well, that I simply cannot imagine. And I am grateful for the inability.

9 Nancy Wurtzel January 18, 2013 at 11:57 am

Tammy, thank you for reading (as always) and for taking the time to comment.

10 Walker Thornton January 16, 2013 at 6:32 am

These are excellent suggestions. I will remember to share with people I think might be dealing with Alzheimer’s

11 Nancy Wurtzel January 18, 2013 at 11:57 am

Walker, many thanks for coming to read and for sharing!

12 Chloe Jeffreys January 15, 2013 at 10:41 pm

I must say that I have never considered that donating my brain would be a step towards curing Alzheimer’s, that’s a great idea. My mother didn’t have Alzheimer’s and donated her body to science. The great part is that they paid for her cremation afterwards which really helped with expenses since she didn’t leave any assets. I think it is a great idea. You’re right that we won’t be needing it after we’re gone.

13 Nancy Wurtzel January 18, 2013 at 11:58 am

Hey Chloe, I appreciate you reading and for taking a minute to leave a comment. So glad we have connected!

14 Virginia Sullivan January 15, 2013 at 10:36 pm

Thanks Nancy, good points. I am dealing with my MIL who hasn’t recognized her son in 10 years. It’s sad for him- but I like your action plan. V

15 Nancy Wurtzel January 18, 2013 at 11:58 am

Oh, good luck with your mother-in-law. I had that, too, when I was married.

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