A Caregiver's Silence

It’s time for a new solution. It’s time for Caregiver Village.

noreply@blogger.com (Stephen G. Barr) — Tue, 11 Oct 2011 12:00:00 PDT

The societal problem:

Despite millions of government dollars and hundreds of dedicated websites, family caregivers are in trouble. With over 60 million family caregivers in the U.S. alone, many caregivers become sick (with nearly twice the rate of chronic illnesses as their non-caregiving peers); they’re depressed (40-70% report significant feelings of depression), they face a significantly increased risk of stroke, and they’re frustrated, unable to find resources or solutions they need to help with the enormous burden thrust upon them. They’re also costly to our economy accounting for an estimated $33.6 billion in lost productivity.

The caregiver’s problem:

Family caregivers are exhausted, stressed to the point of illness and frustrated by their isolation.Caregiver Village’s virtual village creates a close knit community where caregivers can discover a sense of deep personal satisfaction – and escape – from the hard, intense work of family caregiving; while simultaneously learning how to handle their stress and building online connections with people in exactly the same situation as them.

It’s time for a new solution. It’s time for Caregiver Village.

An escape from worries; an innovative way to gain new skills.Games and episodic TV works because they provide escape. Caregiver Village engages caregivers for hours as they play an episodic game while they engage and learn. They return to play the next episode deepening their engagement and learning.
Real support and connections. Caregivers need support. Caregiver Village creates an online ‘village’ environment where caregivers engage for hours as they interact with others while they and learn and escape. People connect based on common needs and interests in a place that becomes their own village of support and encouragement.
The power of sharing. Caregivers need to share their story with others. Caregiver Village gives caregivers a means to share their story through the creation of an online journal, guided by supportive experts and well know real life authors. These authors host discussion groups and interact with village members. They help them share their own stories and they discuss topics of community interest.
A treasure trove of resources. While Caregiver Village is an escape and outlet for stress, it is also packed full of valuable resources for caregivers. Over 1,000 resources, including courses, tip sheets, caregiving products and hundreds of links to disease specific resources are personalized to their needs.
Advanced technology. Caregiver Village is not just a website. It is a technologically advanced product that uses the most modern technologies available - mobile technology, gamification, social networking, social media, web based course delivery and other advanced technologies - to solve one of the country’s most desperate problems.

Play the Caregiver Village Game. Change your Life.

It’s time to change this description of the family caregiver.

Family caregivers who are exhausted, stressed to the point of illness and frustrated may find it hard to believe that they can play a game and change their lives. But Caregiver Village’s virtual world of the website and the game, Village Chronicles, are designed to create a place where caregivers can discover a sense of deep personal satisfaction – and fun – from the hard, intense work of family caregiving.

Caregiver Village is built around solid concepts of game success: key design concepts that make games, especially web games with virtual communities, engaging and rewarding to billions of people today, including women (who compose about 40% of all gamers) and older adults (one out of four gamers today is over 50).

It’s a game – its fun. Games work because they’re fun. They’re fun because they require focus and effort and result in achievements that are specific and tangible. The Village Chronicles virtual game is built to be fun. It requires focus, it takes effort to solve the puzzles (and the ultimate mystery of the story that continues episode to episode), and achievements are earned along the way. It’s a uniquely powerful way for family caregivers to learn better self-care, stress management skills and positive attitudes about their caregiving work.
It builds community. Linking with other people helps us understand and achieve things we couldn’t possibly realize alone, in a way that fills a deep human need for connection and companionship. In Caregiver Village, neighbors help each other by providing advice, recommending resources and offering crucial words of encouragement and support. Groups – called “book clubs” in Village terms – are led by experts who can help guide, coach and nurture the strength of the individual and the group. It’s just more fun to be a part of a team.
It facilitates sharing and affirms choice. In Caregiver Village neighbors use a time-tested technique of journaling their experience to reinforce the “choice” aspect of their work. It’s a way to express emotions, process difficult experiences and gain deeper understanding into the complex and challenging life of a caregiver, arriving at a re-affirmation of the choice involved in their work. Caregiver Village neighbors may choose to display this choice, too, in the form of a badge that proclaims, “I’m a Proud Family Caregiver – my time, my choice, my gift.”
It’s loaded with tools. Mastering really challenging games often means acquiring an array of tools to help you succeed. For caregivers, tools can help them succeed, as well. Tools provided in Caregiver Village include information about books, organizations, products and services that can offer tangible support. It includes exclusive Caregiver Village tip sheets and online training courses that offer tricks and tips from the experts who have mastered the “game” of caregiving.
Family caregivers provide well over 90% of all caregiving services in the U.S. today. It’s time to break the pattern of stress, sickness, despair and dysfunction that represents family caregiving today. It’s time, with Caregiver Village, to change the lives of family caregivers.

Join Caregiver Village and be a part of something BIG!

Goodbye Pop....our bond is stronger than our bodies and forever!!

noreply@blogger.com (Stephen G. Barr) — Wed, 11 May 2011 03:16:00 PDT

Thank You!

noreply@blogger.com (Stephen G. Barr) — Wed, 11 May 2011 03:08:00 PDT

On behalf of the family I'd like to thank those folks who have sent condolences and or attended Pop's memorial service this past weekend. Your kind words and support really helped us all get through this loss. I'd also like to say I tried my best to deliver a proper eulogy on Saturday but as those of you who were there saw my emotions got the best of me and I couldn't get through my prepared eulogy so I will type it up and post it as the closing entry on my blog, A Caregiver's Silence which you can read here:

http://www.caregiverssilence.blogspot.com

Again, for all of the family I say thank you and love you all!

I Dedicate this song to Pop on his Journey

noreply@blogger.com (Stephen G. Barr) — Sun, 17 Apr 2011 15:07:00 PDT

Fearless by Pink Floyd

You say the hill's too steep to climb

Climb it.

You say you'd like to see me try

Climbing.

You pick the place and I'll choose the time

And I'll climb

That hill in my own way.

Just wait a while for the right day.

And as I rise above the tree lines and the clouds

I look down, hearing the sound of the things you've said today.

Fearlessly the idiot faced the crowd

Smiling.

Merciless the magistrate turns 'round

Frowning.

And who's the fool who wears the crown?

No Doubt,

in your own way

And every day is the right day

And as you rise above the fear-lines in his brow

You look down, hearing the sound of the faces in the crowd

Slideshow Dedicated to Pop

noreply@blogger.com (Stephen G. Barr) — Sun, 17 Apr 2011 00:03:00 PDT

The Tide Rises, The Tide Falls ~ Longfellow

noreply@blogger.com (Stephen G. Barr) — Sat, 16 Apr 2011 10:44:00 PDT

The tide rises, the tide falls,
The twilight darkens, the curlew calls;
Along the sea-sands damp and brown
The traveler hastens toward the town,
And the tide rises, the tide falls.

Darkness settles on roofs and walls,
But the sea, the sea in darkness calls;
The little waves, with their soft, white hands
Efface the footprints in the sands,
And the tide rises, the tide falls.

The morning breaks; the steeds in their stalls
Stamp and neigh, as the hostler calls;
The day returns, but nevermore
Returns the traveler to the shore.
And the tide rises, the tide falls.

Pop would have liked this.....

noreply@blogger.com (Stephen G. Barr) — Fri, 15 Apr 2011 07:14:00 PDT

He passed quietly in his sleep yesterday during his afternoon shortly after Mom was up to the hospice to feed him his lunch...more in a day or so but I wanted to mark the occasion and play this in loving memory of Pop....Rest in Peace....Amen.

Happy Birthday Pop!

noreply@blogger.com (Stephen G. Barr) — Tue, 22 Mar 2011 06:10:00 PDT

Yesterday on 3/21/11 my father, Charles Robert Barr, Sr. celebrated his 89th Birthday in a nursing home in our hometown of Rochester, NY while once again being placed on "hospice" status which means according to all indications and Dr's reports he has less than 6 months to live and the insurance kicks in additional funding for private nursing staff to spend time with him to relieve the regular staff . The monthly cost for his care is now $15,000 including medications

Nine years later....

noreply@blogger.com (Stephen G. Barr) — Tue, 15 Mar 2011 01:44:00 PDT

I sit naked in a hotel room thinking about Pop....how I haven't spoken or written him since the day he left AZ over 3 years ago after such a close 6.5 years of togetherness. I remember the first month after he came home and I slept at his feet and counted between his apnea gasps and it is so long ago but he still is fighting every gasp every second in a nursing home with dementia and I remember promising him man to man our first conversation the day I flew to his side that I would never, ever leave his side until I kissed his eyes shut and sent him to his Heaven loved, respected and triumphed and how I've failed in that promise....self loathing is for pussies...I carry utter failure and disgust with me every day he continues to hang on waiting for the last kiss....which I will deliver on his 89th Birthday on 3/21 then I will die a man of honor no matter what else I have done in my life.

He's the one that taught me that....

Stephen G. Barr's Birthday Wish | Causes Birthday Wish

noreply@blogger.com (Stephen G. Barr) — Wed, 15 Sep 2010 11:33:00 PDT

Stephen G. Barr's Birthday Wish | Causes Birthday Wish

He's holding on ...

noreply@blogger.com (Stephen G. Barr) — Wed, 15 Sep 2010 10:24:00 PDT

My sister just called to tell me Pop's in the hospital with what was first thought to be a heart attack but the chest pain is from his lungs being so filled with fluid that it's putting pressure on his heart, He's now 88 and has been totally bed ridden for two years and it's been almost 8 years since his first stroke. This is happening at the worst time for me with the new jobs, moving into the new condo with Lisa and more but I have had an undeniable feeling that he's hanging on until I go back and see him one last time...making arrangements to fly back asap...I'm coming Pop!

Compensating a Family Caregiver

noreply@blogger.com (Stephen G. Barr) — Wed, 01 Sep 2010 23:48:00 PDT

Given the still-fragile economy, a growing number of families are compensating relatives who serve as caregivers to elders, elder-law attorneys say.

But to avoid stoking family tensions or running afoul of Medicaid eligibility requirements, it's important to draft a formal employment agreement--and disclose the arrangement to the entire family.

According to a recent report by the National Alliance for Caregiving and AARP, about 43.5 million Americans look after someone age 50 or older, up 28% from 2004. While no one tracks how many are paid, elder-law attorneys say the numbers are rising.

Howard S. Krooks, an elder-law attorney who practices in Boca Raton, Fla., and Rye Brook, N.Y., says nearly all his clients who serve as caregivers are compensated. Such cases currently comprise about 20% of his workload, a figure that has doubled since before the recession. "When people are out of work," he says, "they are more likely to ask for payment."

It's time to go back...

noreply@blogger.com (Stephen G. Barr) — Fri, 02 Apr 2010 07:54:00 PDT

It's been 17 months since I last saw or communicated with Pop in any way...our last encounter was in the driveway of our home in Sun City West the afternoon Kathy (sister) loaded him in a caravan of minivans and drove off at sunset headed back to my childhood home of Rochester, NY where he was placed into a nursing home and Mom went into assisted living with my sister living in the middle and tending to both on a daily basis. He just turned 88 on March 21st, is bed ridden, partially paralyzed, incontinent and now with mild to moderate dementia and on hospice care....waiting.

I need to go back and let him go...

The 2010 Caregiver Conference

noreply@blogger.com (Stephen G. Barr) — Thu, 01 Apr 2010 20:17:00 PDT

Sign Up Today for the Caregiver Education Conference!

Alzheimer's Association Caregiver Education Conference Provides Invaluable Education
From communication strategies to related dementias, caregiver stress to the latest updates on the state of Alzheimer's research and more, the 19th Annual Central Arizona Caregiver Education Conference is a day not to be missed! Taking place at The East Valley Institute of Technology on April 7, 2010, this year's Caregiver Conference features the theme: Skill Building through Education, Support and Communication.

The 2010 Caregiver Conference features presentations from Dr. Marwan Sabbagh, Dr. Matt Huntleman and Dr. David Coon among others. It promises to be an informative day of skill building, education and updates on the latest research and treatments for people with Alzheimer's disease.

Seating is limited so register today! Conference registration is $40 per person for family caregivers and $55 for professional caregivers. Professional caregivers also receive continuing education credits as a part of their registration. To register, contact Emily Nock at 602.528.0545 or via email at Emily.Nock@alz.org

For more information about the Central Arizona Caregiver Education Conference, visit http://www.alz.org/dsw.

Some promises can't be kept...and should never be made.

noreply@blogger.com (Stephen G. Barr) — Tue, 29 Sep 2009 23:37:00 PDT

It's been one year to the day since the photo in the post below was taken...the last time I saw Pop. The PTSD from nearly seven years of caring for him 24/7 is still there as I said but through all of the therapy I've been through as well as all of the self induced attempts at sui-slide by massive quantities off dope of all descriptions...many attempts of again trying to do it (cleaning up)all alone just as I tried to take care of him without help I have FINALLY FOR THE FIRST TIME in a year been able to look at that photo without breaking down...without feeling like a failure because I lost it and couldn't care for him as I promised him I would do until he passed.

I have never told anyone what I'm about to tell you right now and it breaks an oath I made with Pop seven years ago while he was still in the hospital recovering from the initial stroke which has left him paralyzed ever since.

We were sitting outside Dell Webb Memorial in Sun City West...just the two of us...alone. He in a wheelchair and me sitting next to him on a picnic bench around sunset...a father and son who, for the preceding 25 years had for the most part been estranged having only seen each other a handfull of times yet were thrust back into each other's lives by a catosrophic health condition. The day he had his stroke I was living in Santa Rosa, CA and in the midst of setting up my own production facility to begin manufacturing my own line of custom bass guitars...something I had dreamed of all my life and I was on the cusp of making that dream a reality...then my phone rang.

Long story short...I flew over to Phoenix immediatly to be by his side at my mother's request and there we were sitting outside alone...

During the course of our conversation...alone...man to man...father to son he made me promise him on the souls of our ancestors in Heaven that I would never, ever allow him to be placed in a nursing home and that he would take his last breath at home and that I would close his eyes and mark the sign of the Cross on his forehead and send him to the next life. He then told me his final wishes for burial etc and I vowed to him that I would carry out those wishes to the letter and never, ever allow anyone to deviate from those wishes.

I flew back to Santa Rosa after that visit, dismantled the production facility which was nearing completion, sold off everything I could, packed up everything I owned and moved over to Sun City West and arrived one day before his release from the hospital on Thanksgiving Day. I spent the next six and a half years at his side every day caring for his every physical, emotional and spiritual need...the first six months I slept at his feet on the floor. I bathed him, fed him, helped him in the bathroom, dressed him, took him to every known specialist and therapist in the valley, excercised him, watched untold 100's of Mash reruns with him, argued with him, laughed with him, cried with him, even watched a war in the desert with him. We, in many ways, became one to a point where I lost myself. I lost my dreams, my friends, a nine year relationship with a woman I loved, I gave him everything.

Around the four year mark my mother also had serious health conditions requiring multiple surgeries and hospital stays and I split my time between both of them...still trying to be super son and do it all alone. Of my three older siblings, only my sister lifted a finger to help by flying out a few times a year to give me a week here or week there off from my daily duties but even those were no rest as I was still trying to maintain my guitar business out of the garage of a pink house on a cul-de-sac in Sun City West and while my sister was out I'd be flying to music industry trade shows and "working" so I litertally had not one day "off" from any responsibilities for many years. I spent many a night at my desk out in that garage after I finally got both parents settled down to sleep which generally was just before sunrise weeping alone in anguish and I began drinking heavily at first then using speed to keep going...first in my coffee...then snorting and finally smoking it. Having had many brushes with substance abuse in my past ever since I was tweleve as a matter of fact I was hooked right off the bat. I "managed" to keep this existence going through my growing addiction. About a six months into my heavy addictive period I was arrested and charged with multiple felonies, was facing trial and up to 15 years in prison if convicted and acccepted a plea bargain and placed on two years probation with random drug testing. I went to a private rehab for seven weeks as my sister came out and began packing my folks up and putting the house up for sale and shortly after I was released from rehab they moved back to NY with my sister and I was left here, unemployed, broke, living in a furnished studio apartment with a murphy bed in the wall and still on probation, forbidden to leave the state, just turned 50 years old and Pop was placed in a nursing home where he remains to this day...now down to 106 lbs, 87 years old, paralyzed and with increasing dementia. Mom is in an assisted living facility and my sister is helping them both daily while also caring for her 93 year old mother in-law in another nursing home, her own sons and grandsons and husband of 34 years.

That's about it...that really concludes the story almost...if you care to read on further then I invite you to start reading and following the next blog I started one year ago from about the point I ended this post.

I called it "A Divine Catharsis" and you can read it by clicking HERE

It's been a year now...

noreply@blogger.com (Stephen G. Barr) — Sat, 26 Sep 2009 14:52:00 PDT

This weekend marks one year since my sister moved my pop back east and thus ending my six and a half year run as my Pop's 24/7, live-in caregiver. He's in a nursing home with increasing dementia, still paralyzed and in poor health while my mom lives in an assisted living facility nearby with my sister living in between the too assisting with both. I miss him very much...

Been a while...lots has been going on!

noreply@blogger.com (Stephen G. Barr) — Wed, 22 Oct 2008 01:15:00 PDT

Sorry it's been so long since I've posted folks but I've kinda had my hands full out here in the desert. I extended my stay out at The Sundance Center in Scottsdale from the typical four week stay to seven weeks and am very glad that I did. Through the course of my stay at Sundance I became aware of how deeply depleted I was of everything mentaly, physically and spiritualy at the end of my nearly six years as the sole live-in caregiver to first my Pop then in latter years my mother as well who underwent spinal fusion surgery earlier this year and a complete knee replacement this summer and also suffers from other progressive conditions as well...I had lost my very soul. I quite literally went mad through the process which well know eventually is a losing battle we can never, ever win in the end as much as we give, and fight, and do and don't and fight some more we can never stop the process of aging and it's ultimate eventuality. In the beginning I was johnny on the spot springing into action everytime he rang his litle wireless doorbell I bought him now six years ago; an act I later came to regret. I swear I will forever jump at the sound of a doorbell's "bing bong" for the rest of my life and the first thing I'll do if I ever buy another home is rip the damned doorbell out with my bare hands and install a door knocker! LOL

Who's with me on that one?? If not, trust me, DO NOT GIVE THEM A BING BONGER!!!! That's caregiver rule #1 ok?

Ok so, while I was in Sundance my sister was out from NY helping Mom with her post knee replacement recovery at home and running back and forth up to the Freedom Inn 20times a day becuase she foolishly replaced the "bing bonger" by giving Pop a cell phone so he could "bing bong" her via the remote airwaves from 2 miles away thus driving her mad in very short order to the point she and Mom stopped answerng the phone and let it go to the answering machine. I personally heard 27 separate messages being left by him in less than one hour one afternoon while I was out on pass from Sundance.

Caregiver rule #2 is DON'T GIVE THEM A CELL PHONE!!

Seriously, come up with some other means of communication other than a bing bonger or a cell phone or you will go frickin crazy!! Ok, so you got that?

If I'm 100% honest with you all I have to admit to chuckling a bit as I told my sister..."Ok, my pass is up...I gotta get back to Sundance before curfew...keep up the good fight!" as she sat there with her head in her hands about ready to pull her hair out getting a taste of what my life had been for the past six years, fulltime, every damned day and she's getting a taste of what it's been like and starting to lose it after only a few weeks. Lets not even talk about my two older brother's who each have only visited Pop once apiece during the entire six years for a few days each and never had to bathe him, feed him, dress him, cut his hair, q-tip his ears, trim his nails and literally be covered in every bodily fluid and excrement the human body produces on a daily basis. Do I sound bitter?? Nahh, not really but let's just say I no longer take ANY crap from my two "older" brothers about anything.

I "coined out" as they call it from Sundance on September 16th on my 50th birthday barely a "human being" again. Detoxed from a two year daily crystal meth addiction which started because I needed "something" in order to keep up with the folk's nearly 24 hour demands. At first I started just slipping a little bit in my coffee as a kickstart after being up until sunrise reacting to a steady serenade of "bing bongs" for a glass of water or depends change or to fix the cable on the TV because "somebody" hit the wrong button on the remote and the 4:00am "Mash" was comng on any minute!!!

Note: I hate "Mash" and that stupid "da doo da dee da dee dee" song!!! I'm also not too fond of "The Golden Girls" that was in constant rotation in the back bedroom either, in fact I haven't watched TV since I went into Sundance on July 29th other than a bit of the Olympics this summer....gotta love that women's beach vollyball eh guys?? LOL

Sorry, I digress, but I haven't had much of a social life these past 6 years either so forgive me.

Back to what's been going on. While I was wraping up my stay at Sundance I had regained enough self esteem to not only say no to going back to the way it was but I finally had to say "Hell no....I quit...I'm taking my life back!" and you have two options. Either you go into nursing homes or assisted living homes or get a live-in professional caregiver or move back to NY with my sister and she can take over but I'm not sleeping one more night in that house and that's all there is to it.

Note: They bought the very best long term nursing home care insurance known to man many years ago backed up with Medicare as well as a very good seconday healthcare insurance plan through both of their retirements plus an additional 1 million dollars or so tucked away for a rainy day so I informed them..."Guess what? It's raining and I'm packing".

So my sister packed up the house called the movers, got it painted inside and out and listed it for sale and drove them all the way back to upstate NY with the help of my nephew five weeks ago and I'm writing this at the age of 50 (just got my own AARP card to prove it!), living in a small furnished studio apartment, nearly broke, unemployed with a 6 year employment gap, still in private therapy once a week and 85 days clean and sober and starting to regain the life I lost six years ago this coming Thanksgiving Day.

It's not "over" yet and I'm sure I'll have more posts to come but I've got some stuff to catch up on out here....be well and I'll talk to you all soon.

Full Circle

noreply@blogger.com (Stephen G. Barr) — Sun, 31 Aug 2008 13:39:00 PDT

It's a beautiful Sunday afternoon following several nights worth of extreme Arizona monsoon thunderstorms which expemplifies the tulmultous developments in my family's lifecycle since my last post. After nearly six years of being the sole caregiver to my parents I hit bottom, total burnout....complete emotional, spiritual and physical breakdown. I have been in a holistic recovery center (The Sundance Center) now for the past month.

Pop has suffered several small TIA's affecting his speech and mental clarity, spent several weeks in Del Webb Hospital's SAGE unit (Support Adaptation Growth Enrichment Program), been diagnosed as having early stages of dementia and is now living at The Freedom Inn in Sun City West in his own studio apartment but not adjusting well to the transition despite the high level of facilities and care he is receiving. Anyway you shape it up, it's still not home.

Mom is still at home with my sister Kathy caring for her following spinal fusion surgery in March and knee replacement surgery last week.

Wellshpere Network Addition!

noreply@blogger.com (Stephen G. Barr) — Sun, 17 Aug 2008 12:42:00 PDT

I'm very pleased to announce that "A Caregiver's Silence" has been noticed and I was contacted by Geoffrey W. Rutledge MD, PhD and asked to add "ACGS" to the Wellsphere Network's family of health related blogs! Wellsphere builds online healthy living communities that help people ‘Get active, Eat better and Unwind’. Wellsphere’s groundbreaking platform works by connecting each member with local health and wellness resources, classes and activities that match their unique interests and goals, and with the personalized advice and social support they need to sustain healthy habits. The company hosts a public website for consumers at http://www.wellsphere.com and creates proprietary communities (such as BeWell@Stanford) for large organizations seeking to improve the health and well being of their members and reduce their healthcare costs. Wellsphere is headquartered in San Mateo, California.

I am very flattered and excited about this new collaboration and welcome new readers coming onboard through Wellsphere!

Important Web Links

noreply@blogger.com (Stephen G. Barr) — Wed, 12 Mar 2008 23:12:00 PDT

I'll be sifting through these and checking them and adding one by one to the links section to the right but wanted to post these us now for those who may need them:

Aging

Ageworks - provides graduate and undergraduate education over the Internet, an informational website on aging and continuing educational modules for professionals working in long term care.

American Geriatrics Association - one of the largest professional organization of health care providers. Includes membership, educational and publication information.

American Society on Aging - Enhancing the skills and knowledge of those working with older adults and their families.

Families USA - a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for Americans. Good information on national healthcare policy.

Gerontological Society of America - multidisciplinary society for professionals in the field of aging. Focuses on promoting the scientific study of aging.

International Longevity Center - a non-profit, non-partisan reseach and education organization helping societies address longevity population aging in postitive productive ways.

Maturity Health Matters - an online newsletter about U.S. Food & Drug Administration (FDA) regulated products for older adults, their families and their caregivers.

National Citizens' Coalition for Nursing Home Reform - a national consumer advocacy group that educates consumers about how to get good care in nursing homes and advocates for policies that will improve conditions for nursing home residents.

National Council on the Aging - help older people remain healthy and independent, find jobs, increase access to benefits programs, and discover meaningful ways to continue contributing to society.

National Institute on Aging - research profiles, funding, health information and publications.

Caregiver Resources

Arch National Respite Network and Resource Center - supports service providers and families through training, technical assistance, evaluation, and research.

Caregiver.com - articles on caregiving, caregivers, and home care workers.

CARING TODAY - a magazine and website—provides useful advice and how-to articles on range of caregiving topics.

StrengthforCaring.com - a comprehensive online resource and community for family caregivers.

WellSpouse Foundation - national nonprofit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled.

Directories and Resource Locators

Benefits Checkup - helps thousands every day to find programs for people ages 55 and over that may pay for some of their costs of prescription drugs, health care, utilities, and other essential items or services.

Directory of Web and Gopher Sites on Aging - from the Administration on Aging's Department of Health and Human Services.

Eldercare Locator - a nationwide, directory assistance service designed to help older persons and caregivers locate local support resources for aging Americans to help them remain independent in their own homes.

GetPalliativeCare.org - a palliative care resource created for patients and families that also includes sections for medical practitioners and policymakers. The site is easy to navigate and provides clear, comprehensive palliative care information for people coping with serious, complex illness.

GeroInformatics Workgroup at the Wayne State University's Institute of Gerontology - resource for researchers, educators, practitioners, and others interested in aging and older individuals.

National Academy of Elder Law Attorneys - search for an elder law attorney near you.

National Association of Professional Geriatric Care Managers - a non-profit, professional organization of practitioners whose goal is the advancement of dignified care for the elderly and their families.

Senior Sites - source of non-profit housing and services for seniors.

Disease Specific Organizations

ALS

The ALS Association (National) - up-to-date information and education materials on ALS.

Alzheimer's Disease/Dementia

Alzheimer's Association - site with updated research information, chapters, caregiver information and public policy information.

Alzheimer's Disease Education and Referral Center - site with Alzheimer's information, research, and caregiving suggestions.

American Health Assistance Foundation - nonprofit charitable organization that has dedicated over 30 years to funding research on age-related and degenerative diseases, educating the public about these diseases, and providing emergency financial assistance to Alzheimer's disease patients and their caregivers.

Lewy Body Dementia Association - information for patients with Lewy Body Dementia and their caregivers.

Pick's Disease Support Group - articles, support groups, and resources for patients.

Ataxia

National Ataxia Foundation - information about and support for people with ataxia.

Brain Injury

Brain Injury Association of America - national program with a network of more than 40 chartered state affiliates, as well as hundreds of local chapters providing information, education and support to individuals, families and professionals affected by brain injury.

Brain Injury Resource Center - information, skill-building and discussion groups. Extensive links to resources, rehab, and research sites, as well as lay and professional journals.

Defense & Veterans Brain Injury Center - Serves active duty military, their dependents and veterans with traumatic brain injury. Offers evaluation, treatment, follow-up care, educational materials and research.

Tamara Greenspan Head Injury Collection - Free resource library, with many good books on brain injury available through the interlibrary loan system.

The Traumatic Brain Injury Model Systems - created to demonstrate the benefits of a coordinated system of neurotrauma and rehabilitation care and conduct innovative research on all aspects of care for those who sustain traumatic brain injuries.

Brain Tumor/Cancer

American Brain Tumor Association - Provides information about brain tumors, treatment options, clinical trials, and living with a brain tumor.

American Cancer Society - dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering.

CancerCare - resources and information related to costs for caring for those with cancer.

Cancer.com - a web resource for people touched by cancer including patients and their families, caregivers and health providers. The site was developed as part of Ortho Biotech's dedication to cancer research and education. Cancer.com was created to facilitate quick and easy searches for cancer information and includes a comprehensive listing of credible cancer web sites. The site content is reviewed and approved by an advisory board of cancer advocates and medical experts.

National Brain Tumor Foundation - non-profit organization serving people whose lives are affected by brain tumors.

National Cancer Institute - official site for the National Institute of Health's principal agency for cancer research.

StrengthforCaring.com - online resource and community for family caregivers.

Cerebral Palsy

United Cerebral Palsy Association - world's premier gateway to disability resources on the Internet and is a network for people with disabilities,

Creutzfeldt-Jacob Disease

Creutzfeldt-Jacob Disease Foundation - offers support, information and guidance to those dealing with the degenerative neurological disorder CJD.

Epilepsy

Epilepsy Foundation of America - serving people with epilepsy and their caregivers through services, information.

HIV/AIDS Dementia

National Prevention Information Network AIDS website -HIV InSite - university-based, global Internet resource on HIV/AIDS that incorporates comprehensive,multidisciplinary information on basic science, treatment, prevention, and policy, and is one of the world’s most visited

HIV/AIDS Web sites.

Huntington's Disease

Hereditary Disease Foundation
Huntington's Disease Society of America, Inc.

Hydrocephalus

Hydrocephalus Association

Multiple Sclerosis

National Multiple Sclerosis Association of America
National Multiple Sclerosis Society

Parkinson's Disease

American Parkinson Disease Association, Inc.
National Parkinson Foundation

Spinal Cord Injury

Christopher Reeves Paralysis Foundation
National Spinal Cord Injury Association

Stroke

American Heart AssociationNational Center American Stroke Association National Stroke Association National Institute of Neurological Disorders and Stroke
Tourette's SyndromeTourette's Syndrome Association, Inc.

Other Disease RelatedAlliance of Genetic Support Groups American Academy of Neurology American Chronic Pain Association Human Genome Project Information National Institute on Deafness and Other Communication Disorders

Elder Abuse
MedlinePlus: Elder Abuse - trusted health information on elder abuse from the U.S. National Libarary of Medicine.National Association for the Prevention of Elder Abuse - information and publications on how to recognize and report elder abuse.National Center on Elder Abuse - offers fact sheets, news, publications, statistics and resources.
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Federal Government Agencies
Administration on Aging - aging news, aging pages, funding information, Older American Act programs, statistical information on older adults.Centers for Disease Control and Prevention 's National Center for Health Statistics: Aging Activities - an agency of the United States Department of Health and Human Services.Centers for Medicare and Medicaid Services - the federal agency that administers the Medicare, Medicaid and Child Health Insurance Programs.Department of Veterans Affairs - Veterans Administration benefits, facilities, special programs.Food & Drug Administration's Office of Women's Health - science-based information about all products currently approved by the FDA to treat women's health conditions.Social Security Online - information about benefits, Personal Earnings and Benefit Earning Statement.National Institute of Health - Health Information Index, Consumer Health Information, Medline and Grateful Med access, Clinical Alerts.National Institute of Mental Health - provides information from the Federal agency that conducts and supports research on mental illnesses.

Health Resources
Alliance for Health Reform - a nonpartisan, nonprofit group helping educate elected officials, journalists and other shapers of public opinion about the roots of the nation’s health care problems and the trade-offs posed by various proposals for change.ClinicalTrials.gov - comprehensive registry of clinical trials for serious illnesses. Sponsored by the National Library of Medicine, the database has 4,000 studies at 47,000 sites across the country.Healthfinder - a mega site for health information sponsored by the Department of Health and Human Services. Excellent links section.MEDLINEplus® - comprehensive coverage of over 600 health topics. Features include: newswire updates, tutorials with sound and pictures, medical encyclopedia, drug information, directories of health facilities and professionals, and more.MedicineNet - information for diseases, treatments, procedures, drugs and more.National Organization for Rare Disorders - a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases.PubMed - provides access, free of charge, to MEDLINE. Over 40 millionsearches done each month. Includes state-of-the-art retrieval features such as "related articles," links to related databases, and links to publishers' full-text articles.

Legislation and Advocacy
National Governor's Association - bipartisan organization of the nation's governors--promotes visionary state leadership, shares best practices and speaks with a unified voice on national policy.Thomas - federal legislation tracking. Daily updates and full-text bills available.White House's ExpectMore.com - developed by the U.S. Office of Management and Budget and Federal agencies to assess the performance of every Federal program.White House Citizen's Handbook - a guide to the U.S. government.

Long-term Care
American Association of Homes and Services for the Aging Home Care and Hospice Agency Locator National Long Term Care Ombudsman Resource Center

Technology
Center for Accessible Technology - provides useful information on various types of technology as well as comparative reviews, and links to other resources.EASI (Equal Access to Software and Information) - provides information on assistive technology as well as links to product information. Virtual Assistive Technology Center - information on resources and also offers downloadable software.BIOTN (The Best Information on the Net) - site developed by librarians at O'Keefe Library at St. Ambrose University. The site offers information on adaptive technology, disability law, organizations and institutes and links to other useful sites.
Computer manufacturers also have sites that offer information on accessible technology. Some of the larger companies include Apple Computer's Disability Resources web site and Microsoft's Accessibility and Disabilities site.
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First Steps for New Caregivers

noreply@blogger.com (Stephen G. Barr) — Wed, 12 Mar 2008 22:55:00 PDT

When you're starting out as a family caregiver, it's hard to know where to begin. Perhaps you've only recently realized that a loved one needs assistance, and is no longer as self-sufficient as he or she once was. Or perhaps there has been a sudden change in a loved one's health.

Now it's time to take action, and take stock of the people, services and information that will help you care for your loved one. The earlier you find support, the better.

Step 1

Start with a diagnosis. If your loved one is forgetful at times or has gone through a noticeable personality change, take him or her to a neurologist or diagnostic clinic. A thorough evaluation will rule out any reversible causes of dementia symptoms, such as depression, nutritional deficiencies, reactions to medication or infection. An early diagnosis of Alzheimer's disease, or another disease that causes cognitive impairment, has many benefits. First, treatment for Alzheimer's disease is most effective in the earlier stages and can buy more independence for your loved one. Second, knowing your loved one's diagnosis can help you plan ahead realistically. Learn as much as you can about your family member's condition. This information will confirm that you are not imagining things or exaggerating your loved one's behavior. Especially when you're dealing with dementia'learning about the diagnosis will help you keep in mind that it's the disease that is causing your loved one to gradually lose control over his or her behavior. Many books, videos and classes are available to inform you about what you can expect as your loved one's disease progresses.

Step 2

Talk with your loved one about his or her finances and health care wishes. If your relative is able to complete a Durable Power of Attorney for finances and health care, assist her or him in meeting with an elderlaw specialist to draw up these documents. This planning can help relieve your immediate anxiety and make you better prepared for the future. It can also start important discussions with your family members. If your loved one doesn't have the capacity to execute these documents, you will need further legal advice to learn about your options.

Step 3

At this stage, consider inviting family and close friends to come together and discuss your loved one's care. If possible, your loved one should be included in the meeting. List the tasks that are needed so they can be more easily divided up. Let everyone discuss their concerns, as well as how much and what kind of help each person can offer. As the primary caregiver, it's best for you to focus on accepting what assistance your friends and family are offering, even if it's not exactly what you had in mind. For more information see the FCA Fact Sheet called Holding a Family Meeting.

Step 4

Take advantage of community resources such as Meals on Wheels and adult day care programs. These resources are available so that you don't have to do everything yourself'and to give you a break. You can also see if there are caregiver classes and workshops offered in your community by calling FCA or your local Caregiver Resource Center or Area Agency on Aging. These education programs will help you feel more confident and make the time you spend caregiving easier for both you and your loved one.

Step 5

After all of this planning, don't forget what's most important: finding support for yourself. Caregivers often feel isolated as they take on more responsibility, and as their social lives move into the background. A support group is a good place to meet other family caregivers who have really "been there". You can attend support groups in your community, as well as through the Internet. Call FCA at (800) 445-8106 to learn about support groups, classes and other services for caregivers in your area, or visit www.caregiver.org.

Source: Family Caregiver Alliance

Caregiver Rally on the Capitol Lawn!

noreply@blogger.com (Stephen G. Barr) — Thu, 28 Feb 2008 12:26:00 PST

FOR IMMEDIATE RELEASE:

Contact: Sharyle Price Arizona

Caregiver Coalition

(928) 252-6900 Fax: (602) 542-6575

sharyleprice@cox.net

www.azcaregiver.org

Caregiver Rally on the Capitol Lawn!

Phoenix, Arizona, February 19th, 2008 — The newly formed Arizona Caregiver Coalition is hosting a Caregiver Rally on the Capitol Lawn on March 13th to celebrate and advocate for informal (unpaid) caregivers. These caregivers are often referred to as "family caregivers", even though one doesn’t have to be an actual family member to be an informal caregiver. There is a very good chance that most people in Arizona will speak to an informal caregiver today and not even know it! There are an estimated 570,000 caregivers in Arizona providing unpaid services to family members and loved ones. Those free services are equivalent to approximately $5.6 BILLION worth of in-home health care services, representing about 3/4ths of all in-home care provided! These caregivers deserve to be recognized and supported! "The Caregiver Rally on the Capitol Lawn on March 13th is designed to both celebrate informal caregivers and to create public awareness of the incredibly important role they play" explained David Besst, Caregiver Support Specialist for the State of Arizona. The Department of Economic Security, where Mr. Besst works within the Division of Aging and Adult Services, in conjunction with the Governor’s Advisory Council on Aging, has worked since late in 2006 to facilitate the development of a statewide coalition to support informal caregivers. This rally is the first public event for the Arizona Caregiver Coalition, and this will also be the first chance for the public to learn about the new Lifespan Respite Care Program being offered by the Division of Aging and Adult Services. That program is designed to offer a break to stressed caregivers who can’t access respite services through any other programs, and is based on HB-2789 that passed in last year’s session of the Arizona Legislature.

Caregivers who attend the rally will receive "toolkit" gift bags filled with great items to help them as caregivers and provide information for both them and the loved ones they assist. They’ll also be able to visit with support providers offering resources, with many different caregiving communities represented, such as kinship caregivers, caregivers of aging parents, caregivers of loved ones and spouses living with a disability, and tribal caregivers. Learn about the new Arizona Caregiver Coalition, and visit with KAET, Channel Eight, to learn about the upcoming film, "Caring for Your Parents", which will debut in April. There will also be great speakers, fun stuff and prize giveaways!

More about the Caregiver Rally and the Arizona Caregiver Coalition can be found at www.azcaregiver.org.

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noreply@blogger.com (Stephen G. Barr) — Tue, 06 Nov 2007 01:36:00 PST

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Assisted Living For Your Parents

noreply@blogger.com (Stephen G. Barr) — Mon, 29 Oct 2007 18:48:00 PDT

By: Ron King

Over the past few decades, there have been some issues with nursing homes and because of this they do not have a very solid reputation. Many elderly people dread begin placed in a nursing home because they are familiar with the bad reputation. There are good nursing homes, but even if you find one, your loved one will still have some losses, such as their independence, privacy and personal freedom. If someone is elderly, but doesn't yet need constant medical care, it's important that you don't make the decision to send them to a nursing home prematurely. There are other options.

The alternative to a nursing home is an Assisted Living Facilities, popularly known as ALF. These facilities are for people needing assistance with Activities of Daily Living (ADLs), but who want to live as independently as possible for as long as they can. Assisted living purpose is to bridge the gap between independent living and nursing homes.

Determining the Level of Independence

For those who are not able to live by themselves, but do not yet require constant care, assisted living centers are a great option. These facilities offer residents help with ADLs such as dressing, laundry, housekeeping, medication, bathing, and eating. A lot of these facilities can provide medical care as well, though this might not be as readily available to residents as it is in a nursing home.

Understanding the Differences

The decision on whether to send your loved one to an assisted living facility or a nursing home hangs on many factors, such as the following.

* Cost: Assisted living is rather pricey because individuals live in apartment-like settings. Nursing homes are cheaper because the elderly live in a more communal space, with little private space.

* Medicare is almost always available for someone in a nursing home. It may not be for someone living in Assisted Living Facility.

* Facilities: Assisted living facilities are focused on individuals. Nursing homes are focused on the collective group.

* Place: While assisted living facility is a place for one or few particular aged at a time, a nursing home houses a lot of patients. The former house an individual who is offered all the help and assistance he or she needs, while the nursing home provides far less individual care.

* Nursing homes are designed to care for people who have many health care requirements, and cannot care for themselves. Assisted living facilities are designed to assist elderly persons who can basically care for many of their personal needs themselves.

* In an assisted living facility, skilled nursing care is not usually available except on an as-needed basis. A nursing home is more like a hospital environment and provides full-scale, skilled nursing care.

* Assisted living facilities are designed to assist people in preparing meals, bathing, dressing or performing household chores. If your loved one is often confused or experiencing memory problems, assisted living may be the answer. If they have a debilitating disease or condition, they might need a nursing home.

The Well Being of Your Loved One

There are many factors to consider when deciding whether to use a nursing home or an assisted living facility, such as cost. However, your main concern should be the well being of your loved one. Besides, there are different ways of obtaining the necessary funds, such as financial aid. If you end up putting your loved one in a situation where they are suffering, all of the effort you might end up investing to resolve the situation will most likely heavily outweigh the money you might have saved.

Article Source: http://www.articlesnatch.com

About the Author:
For more info, see Long Term Care and Long Term Care. Ron King is a web developer; visit his website Authoring Articles. Copyright 2007 Ron King. This article may be reprinted if the resource box is left intact and the links live.

Free Fitness Guide For Seniors

noreply@blogger.com (Stephen G. Barr) — Sun, 07 Oct 2007 21:06:00 PDT

This fitness booklet will:

Provide you with effective, low-impact exercises to help jumpstart your way to fitness
Remind you about things we all tend to forget – like proper breathing!
Help you improve your strength, balance and coordination
Learn more inside!
Did you know that breathing exercises help reduce stress?
Or that, by age 40, you’ve eaten about 45,000 meals?
Or that strength training helps build stronger bones and improve balance?
Or that you should be able to touch your toes?
Find out more interesting facts and how to touch your toes inside!

Get it here.