Caregiving 101: Outstanding Online Resources

17 Sunday Nov 2013

Posted by Ann Napoletan 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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alzheimers, alzheimers resources, caregiver resources, caregiving, dementia

November 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

The 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

Did 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!

If 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.

Another 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

What 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.

Sensible Strategies for Coping with Sundowner’s

10 Sunday Nov 2013

Posted by Ann Napoletan in Behaviors, Caregivers, Helpful Resources, Signs and Symptoms, Sundowning, Tips

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alzheimers, caregiving, dementia, dementia behaviors, sundowners, sundowning

That pesky biannual time change wreaks havoc on all of us – it never ceases to amaze me how much one little hour can throw my body clock into a tizzy.

Anything that rough on us has to be exponentially more difficult for those living with dementia. The autumn change seems particularly challenging since it means the sun is setting so much earlier.

Sundowner’s

Sundowning is a term commonly used to describe a marked increase in confusion and agitation in dementia patients as evening approaches. Experts have long debated exactly what causes this phenomenon, but no one has a definitive answer.

Many believe the decrease in light is a big part of the equation, while others feel Sundowner’s may be due to hormonal changes occurring at night or even just simple fatigue. There are also those who think the symptoms could be caused by an accumulation of sensory stimulation from the day, causing an “overload” of sorts and resulting in stress and anxiety.

Six Ways to be Proactive

Identify triggers. Limit outings, visits and other highly stimulating activities to morning or afternoon. Keep noise and commotion to a minimum in the evening; turn off the television and consider playing soft music instead.

Avoid afternoon naps. Too much sleep during daylight hours can confuse the body’s circadian rhythms. Plan daytime activities and encourage light exercise to help expend excess energy in a healthy way.

Watch their diet. Limit sweets and caffeine to morning hours. Some people also do better having their heaviest meal at lunchtime and opting for a light dinner.

Maintain a consistent routine. Dementia patients do best when kept on a schedule. Routine and structure go hand in hand with a feeling of safety and security. Keep meals, showers, bedtime, and wake time as consistent as possible.

Be cognizant of the environment. Clear excess clutter, which can contribute to the agitation caused by sundowning. Consider the fact that even seemingly benign objects like mirrors and photographs can frighten or confuse someone with dementia. Before dusk falls, close curtains and blinds and turn on as many interior lights as possible.

Ensure their physical comfort. Hunger, thirst, and pain will increase anxiety and agitation. Offer a light healthy snack and be sure they’re hydrated without overdoing liquids close to bedtime. See that they are dry, and keep the room/house at a comfortable temperature. A sudden spike in agitation could also indicate the presence of a urinary tract infection or another ailment.

Tactics for When All Else Fails

It’s important to know that despite the best laid plans, sometimes there’s simply no avoiding it. It’s a fact – staving off Sundowner’s is one part art and one (or more) part luck. There are a few things that may help, though.

Redirect. If you notice increased activity or pacing in your loved one during evening hours, attempt to redirect them to quiet activities such as working puzzles, folding washcloths, or listening to music. If they insist on pacing, allow them to safely do so; never try to physically restrain them.

Provide reassurance. Speak in a soft, soothing tone letting them know that everything is okay. Avoid arguing – it will only make things (much) worse.

Touch does wonders. A gentle massage or backrub, or even just sitting and holding his or her hand, can bring a sense of calm.

Do your best to keep your cool. Patience can be in short supply at times like this, but remember your loved one will sense your stress, which often adds to their agitation.

Seek help. It may help to keep a journal for a couple of weeks to try and identify patterns. If sundowning becomes increasingly problematic, discuss your concerns with the doctor. Medication may be considered as a last resort.

Maintaining Perspective

When frustration is getting the best of you (and if you’re human, it will), try to remember they are not acting out intentionally. Don’t take their words or actions personally.

The most important thing is keeping them safe; beyond that, it’s often best to follow their lead. Sometimes my mom didn’t want anyone talking to her but appreciated holding hands; at other times, she just wanted to be left alone to pace. And to be quite honest, there were moments where there was just no consoling her – those were the most difficult. A feeling of helplessness like nothing I’ve ever experienced.

It all comes part and parcel with the disease and all we can do is our best – whatever that is at the moment.

How have you dealt with sundowner’s? Can you offer any advice to other caregivers? If so, leave a comment. I’d love to hear from you!

Gratitude

05 Tuesday Nov 2013

Posted by Ann Napoletan in Caregivers, Caregivers.com, Helpful Resources, Inspiration, Ruminations

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21-day gratitude challenge, alzheimer's caregiver, alzheimers, caregiver, caregiving, dementia, gratitude

grat·i·tude noun \ˈgra-tə-ˌtüd, -ˌtyüd\
: a feeling of appreciation or thanks

In November, as Thanksgiving approaches, the word “gratitude” seems to be popping up everywhere. It’s a shame we don’t focus on our blessings as much as we should year ’round, but I’m thankful to be surrounded by reminders this month. autumn

Even under the best circumstances, it’s easy to get caught up in the crazy pace, endless demands, and mind-numbing routines that tend to define life in the 21^st century. The danger, of course, is that we become oblivious to the little miracles that surround us daily.

And Then There’s Caregiving

Let’s keep it real here – when you’re a caregiver, gratitude can be hard to come by. You’re pulled in a million directions, stressed to the max, and you often find yourself just trying to keep your head above water. You’re likely faced with some of the most difficult decisions of your life and each step forward leads you deeper into the unknown.

The days of being proactive are a distant memory – these days, reactive mode is the norm. To add insult to injury, you’re watching someone you love dearly slip further away with each passing moment.

It’s easy to see why gratitude isn’t the foremost thing on your mind…

Conscious Cultivation

autumn-leaves As hokey as it may sound, the truth is gratitude has the power to get us through the most challenging of times if we just make a small effort.

Several months ago, I wrote an article for Caregivers.com discussing the idea of “cultivating gratitude”. It’s all about being aware of the world around us and realizing even in the seemingly mundane, there are great blessings.

November is the perfect time to give this a try. Each day this month, take just a few minutes in the morning or right before bed to jot down a couple of things you’re thankful for. There’s plenty of inspiration at every turn, and you can even join a group of 6,000 or so new friends in the KindSpring 21-Day Gratitude Challenge beginning November 7^th.

Happiness is not what makes us grateful. It is gratefulness that makes us happy. -Brother David Steindl-Rast

It’s a Journey

What do you have to lose, right? Give it a whirl and see if you don’t notice your outlook is a little brighter and you’re consciously experiencing more moments of joy.

Remember that some days, you may really have to dig deep to find just one thing you feel grateful for. It’s not always going to be a big-ticket item; in fact, most often, it will be something small. mom hands

Having 20 minutes to enjoy your coffee before the rest of the house wakes up.
A smile from the loved one you’re caring for.
Your warm bed on a cold night.
The fact that Mom ate her lunch.
The scent of a favorite candle.

Perspective

In hindsight, with it all said and done, I truly believe our Alzheimer’s journey taught me that the little things in life really are the big things. I’m not saying I walk around in a state of euphoria all day long (I wish!), but it’s all about perspective.

In my case, it’s an ongoing process; I have to consciously remind myself of what’s important and of my many blessings. In fact, I’m using the 21-Day Gratitude Challenge as motivation to get back into the habit of writing down the things I’m thankful for each day.

Join me in the challenge and let me know how it goes!!