Category Archives: Support system

Caregiving 101: Outstanding Online Resources

17 Sunday Nov 2013

Posted by in Advocacy and Awareness, ALZ Assn - National, Caregivers, Helpful Resources, November-National ALZ Awareness Month, Research, Support system, Tips, USAgainstAlzheimer's, Washington

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nat fam caregivers monthNovember marks both National Alzheimer’s Awareness Month and National Family Caregivers’ Month, and what better time to highlight some helpful online resources.

When my mom developed Alzheimer’s, I knew nothing – or less than nothing if that’s possible! It was truly baptism by fire, and I wish I’d had access to the plethora of information out there today.

Even just connecting with others who were at various stages of the journey would have been a godsend. Ironically, it’s been since Mom’s passing that I’ve discovered a lot of these resources, which is why it’s important to me to let other caregivers know they’re available.

Alzheimer’s Association

alz-assn-symbolThe Alzheimer’s Association offers several excellent tools including:

  • The Alzheimer’s and Dementia Caregiver Center is a portal providing a window into a variety of tools and resources. There you’ll find help on behaviors, communication, legal and financial matters, and care options, as well as tips on driving and safety issues, activities for your loved one, and respite care.
  • Community Resource Finder will help you locate resources, services, and programs right in your own community. It’s as simple as entering your zip code and choosing from a list of over 20 categories including elder care attorneys, assisted living communities, area agencies on aging, home health care, and many more.
  • ALZConnected is a virtual community of caregivers. The site is divided into two sections; message boards let members connect with other Alzheimer’s families on topics such as caring for a spouse or partner, clinical trials, and early onset, among others. The solutions pages allow users to pose questions to the community, peruse existing questions and answers by topic, or respond to questions posted by other members.
  • Alzheimer’s Navigator guides you through the process of developing an action plan tailored to your own unique situation.
  • Virtual Library provides access to thousands of books, journals, and other media, available to borrow.

Facebook

fb-iconDid you know there are many Alzheimer’s and dementia virtual communities on Facebook? These groups provide a great way to connect with other caregivers who truly understand what you’re going through. In addition to camaraderie and support, they provide a jumping off point for finding tons of other resources. A few of my favorites FB communities include:

Other Awesome Resources

Bob DeMarco’s Alzheimer’s Reading Room is one of most well-received and heavily visited Alzheimer’s blogs on the web. Bob was his mother’s primary caregiver until her passing, so he brings tons of personal experience to his writing.

His site is also a great resource for the latest news and developments in the world of Alzheimer’s. The Alzheimer’s Reading Room is a wonderful source of practical advice for those dealing with Alzheimer’s, and I suspect that once you start reading, you won’t be able to stop.

I also recommend checking out Alzheimer’s Speaks founded by highly sought after dementia expert Lori La Bey whose mother has struggled with Alzheimer’s for more than 30 years. Frustration with lack of information and resources led Lori to develop the site as a way to help other caregivers.

Alzheimer’s Speaks is currently recognized as the number one online influencer for Alzheimer’s, and it offers an incredible wealth of information. On the site, you’ll find tools, resources, articles, and much more including links to the Dementia Chats webinar series and the extremely informative Alzheimer’s Speaks Radio.

Finally, IAM-Care is a new site billed as the first comprehensive caregiving platform for Alzheimer’s and dementia. It is currently in beta test but founders invite anyone interested to join, take a look around, and provide feedback.

At IAM-Care, the vision is to offer a platform that combines social networking with access to expert knowledge. Perhaps most importantly the site provides secure, personalized healthcare tools to help every caregiver keep vital information organized and at their fingertips.

Get Involved!

us-against-alzIf you’re looking for a way to take action and become an advocate, I suggest checking out USAgainstAlzheimer’s. Founded by George and Trish Vradenburg, this grassroots organization is serious about finding a cure by 2020. Take a look at part of their mission statement:

We are dedicated to mobilizing individuals to demand the urgency, passion and commitment needed by our political, business and civic leaders to achieve the goal of ending Alzheimer’s by 2020

USAgainstAlzheimer’s will provide you with the latest news from Washington as well as the tools you need to make your voice heard.

alz-prev-initAnother powerful way to make an impact is to join the Alzheimer’s Prevention Registry, an offshoot of the Banner Alzheimer’s Institute in Phoenix, Arizona. The registry provides an easy way to stay connected with Alzheimer’s prevention studies taking place in your own community.

The organization’s goal is to register 250,000 members by 2015, bringing together those who believe that the time to end Alzheimer’s is NOW. It only takes a few minutes to register; membership is free and does not obligate you to participate in any research.

Being part of the Prevention Registry will give you access to the very latest research news, arming you with the information you need to be a strong advocate.

Share Your Favorites

laptop-and-coffeeWhat are some of your favorite resources – online or otherwise? Please leave a comment and share your thoughts with other readers. If you found something helpful, it’s likely that someone else can benefit from it too!

Be sure to also check out my Helpful Resources, Reading List, Recommended Blogs, and News & Information pages, and stop back periodically for updates. It is my sincere hope that you or someone you know will find this information helpful.

Alzheimer’s: It’s Not Contagious

20 Sunday Oct 2013

Posted by in Advocacy and Awareness, Caregivers, fear, Inspiration, Mom, Ruminations, Smiles, Support system

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Sunday evening snuggle nap... I saw a picture a few days ago, and it’s been on my mind ever since. The image was that of an older woman sitting alone on a bench looking off into the distance. The caption said, “Alzheimer’s isn’t contagious.”

As advocates, we place a great deal of emphasis on funding for research – we think a lot about the future – hopefully one without Alzheimer’s. And all of that is tremendously important. However, the image of that lonely woman reminds us we must also focus on those living with the disease today.

Lonely Days

How many dementia patients sit alone in a facility, day after day, month after month, and year after year? One might argue that technically they aren’t alone; there are people around, the hustle and bustle of daily goings on, shower time, mealtime, and an occasional balloon volleyball game.

Don’t fool yourself – they are alone.

This begs the question, why do friends and family head for the hills when they hear the word “Alzheimer’s?” It’s something I see mentioned regularly in various caregiver forums. In addition, more and more courageous individuals who are in the earliest stages of the disease are speaking out; these are folks who still have so much to contribute to the world, yet at the first mention of the “A” word, people begin writing them off.

Here Today, Gone Tomorrow

So why is this post-diagnosis mass exodus so common?

Is it the fear of being asked for help? Is it too difficult for them to see? Do they just not want to be bothered? Or do they think the person is already gone so there’s no sense in visiting? Eason House

Not many would admit to most of these, though I have had a few people tell me it was just “too hard” for them to see my mom “that way.”

One can only imagine how egocentric that sounds to a caregiver who faces the tremendously harsh reality of Alzheimer’s every day. I think all caregivers will agree it’s no picnic for us to watch a loved one slowly drift away into the world of Alzheimer’s, but we weren’t given a choice in the matter. However, every moment we spend with them is ultimately a beautiful blessing.

Food for Thought

I want people to understand several critical points, and if reading these words encourages just one person to visit a friend with dementia, I’ll consider that a victory.

  • Regardless of how far along someone is in the disease, in many ways, they are still same person. Perhaps they have difficulty communicating and can’t do the things they once could, but they are very much alive. My mom’s spirit and spunk, along with many of her other personality traits were apparent until the very end. She was still Marilyn through and through.Eason House - Faces.small
  • You have the power to give one of the most precious gifts in the world – a simple moment of joy – to an Alzheimer’s patient. It doesn’t cost a dime, just the time it takes to sit and talk with them, stop by with a favorite treat, or simply hold their hand for awhile. Sure, they’ll forget the visit, but the way you made them feel will remain. You will have brightened their day and what could possibly be more important than that?
  • Our situation was pretty typical; very early on, even while my mom was still at home visits became less frequent. Eventually, most everyone had disappeared. But I think those few who did remain stalwart supporters would tell you they reaped rewards beyond measure by spending that precious time with Mom. I would venture a guess that as difficult as it was for them to watch their friend decline at the hand of Alzheimer’s, they felt they received back just as much as they gave. The love, warmth, and yes, the joy, of connecting with an Alzheimer’s patient is a unique and special gift.

Glass Half Full or Half Empty?

One might lament the fact that “she’s a mere shell of the person she used to be,” and there’s no doubt this is one of the most heartbreaking, devastating diseases that exists. But even in the worst of circumstances, there is room for a bit of the “glass half full” mentality. MomJessHands

Remember that even after a person with Alzheimer’s can no longer speak, they need love and affection. They don’t cease to be a human being.

You can’t put a value on a simple smile or a gentle touch. It definitely requires stepping outside of one’s comfort zone and setting aside the deep personal sadness and fear that may exist. However, it’s likely the 30 minutes you spend with an Alzheimer’s patient will be the most meaningful part of your day.

Friday Potpourri

27 Friday Sep 2013

Posted by in Advocacy and Awareness, Books, Caregivers, Children and ALZ, Events, Giveaways, Helpful Resources, Inspiration, Support system, USAgainstAlzheimer's, World ALZ Month

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heroJust a couple of tidbits that may be of interest…

From Ginny Biggar of USA2:

Please join me on Thursday, October 3 from 12-1 pm Eastern time for the next ActivistsAgainstAlzheimer’s Network conference call focused on Personal Stories. I may be familiar to some of you. For those that don’t know me, I’m the director of the Activists Network at USAgainstAlzheimer’s. I work with individuals around the country who are coping with Alzheimer’s every day.

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Part of my focus is listening to the stories that you and others tell about how Alzheimer’s is affecting your lives. Telling these stories is a critical way we can raise awareness about Alzheimer’s.

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