When faced with months to live, how do you say goodbye?

Zach Sobiech, of Lakeland, Minn., doesn’t go far without his guitar in tow. Facing months to live, Zach is turning to music - writing and performing songs as a way to say goodbye to his friends and family.

Zach was diagnosed with osteosarcoma in 2009 at age 14. Osteosarcoma is a cancer of the bone, with just 400 cases diagnosed in children under age 20 per year in the U.S.

The music video Zach posted on YouTube just this past December 5 has over 1.4 million views. You can read more about Zach and his story and make a donation on the Children's Cancer Research Fund website. 

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Friendship & Trust -- Christmas Day, 2012

Hand in Hand

photograph © Ruth Bernhard All Rights Reserved

Unfrazzle founder Rajiv Mehta met the famous photographer Ruth Bernhard about a decade ago. One of his friends was Ruth's printer for the last 10-15 years of her life. 

Ruth's longtime partner, Col. Price Rice, was one of the original Tuskegee airmen. She was in her 90's and he was in his 80's. Rajiv went with them to a reception at the Ansel Adams Center in San Francisco that had a major exhibition of her work. 

Ruth produced an amazing body of work, and was most noted for her dramatically lighted, black and white nude studies. This photograph, though not one of the ones she's most famous for, is Rajiv's favorite.

She took "Hand in Hand" in 1956 after attending a Sunday service at the Fellowship Church in San Francisco's Tenderloin District on Larkin Street. In her own words: "I noticed a black man and a white child standing together holding hands -- she with an expression of complete trust. They were waiting for her mother to join them for lunch. I was profoundly moved by their friendship."

Ruth Bernhard died on December 26, 2006. She was 101-years-old. 

Unpaid Caregiving in U.S. Valued at $492 Billion

Source: Chart from "The hidden costs of U.S. health care; Consumer discretionary health care 

spending" 2012 study from the Deloitte Center for Health Solutions

A new report from the Deloitte Center for Health Solutions estimates that the total of all U.S. health-related expenditures in 2010 totaled $3.2 trillion or about 23 percent higher than reported in the National Health Expenditure Accounts (NHEA).

Included in the "hidden costs" is $492 billion that Deloitte estimates is the value of the work of the nation's 42.4 million unpaid caregivers. 

How was this value calculated?

The formula is simple: Number of caregivers X hours of care per caregiver per week X economic value of one hour X 52 = Total "imputed" value 

The study found that there is approximately 3.2 million unpaid caregivers for special needs children (under age 18) and 39.2 million unpaid caregivers for people over age 18. Interesting and not too surprising, special needs children require an average of 33.7 hours of care per week while recipients over 18 require considerable less, 17.4 hours on average.

And what was the value of one hour of caregiving? 

The answer is $11.94. 

This number comes from a "national compensation survey" that found the mean hourly wage of employees whose occupation is "nursing, psychiatric, at home health aides" to be, yes, $11.94. 

Not a great way to make a living, I might add.

Some other interesting numbers related to unpaid caregiving from the study:

• 51% of unpaid care recipients have household incomes of $0 to $25,000.
• 41% of unpaid care recipients live in 2 person households.
• Care recipients from low-income households account for more than 10X the cost of care in the highest income ($100,000 and up).
• Baby boomers and seniors account for 75% of supervisory care costs. Children who require supervisory care account for 14%.

You can download the entire study here.

The Challenge of Helping Young Caregivers

Connie Siskowski helps child caregivers

Connie Siskowski, RN, PhD, was not yet a teenager when she experienced what it is like to take on adult responsibilities as the primary caregiver for her seriously ill grandfather.  Under constant, daily stress, she had little time for friends and struggled to keep up with her school work. 

This life experience motivated her to become a nurse and to work in the areas of home health and hospice care. In 1998, she found a nonprofit, the American Association of Caregiving Youth.

Through this nonprofit, Connie has provided assistance to more than 500 child caregivers in Palm Beach County, Florida. Along the way, she was also chosen as one of the top 10 CNN Heroes of 2012 and received a $50,000 grant to continue her work.

In a recent CNN interview, Connie said that she hopes this recognition "will help people understand that kids are part of the health care delivery systems and that they should be recognized."

She continued to say, "We're not advocating that children should do this or be in this position, but they are. So we want to make it as safe as possible and arm them with the knowledge base that they need."

The American Association of Caregiving Youth provides tutoring and "respite" to give kids and families a break. They also provide computer support, transportation, and do home visits to link families to available resources.  And they have a camp program.

To expand their services into other areas, the Association is creating affiliates in others states. The model is to partner with existing nonprofits who would like to reach child caregivers and make a difference in their lives.

It's a very big, important challenge. As Connie says in the video above, in the United States there are 1.3 million children taking care of ill, injured, elderly or disabled adults. 

Unfrazzle Goes to Washington D.C.

Rajiv Mehta at the Unfrazzle Display 

Unfrazzle Founder & CEO Rajiv Mehta demonstrated Unfrazzle publicly for the first time this week at the mHealth Summit at Gaylord Convention Center near Washington, D.C. (December 3-5, 2012).

The Summit was an amazing event--over 4,000 attendees and 250 exhibitors coming together to collaborate in the use of wireless technology for health related applications. This was by far the largest event of its kind and bodes well for the future of wireless health technology and needless to say events like this one. 

A steady stream of people visited the Unfrazzle display in the EngAGE Pavilion, sponsored by AARP and Aging 2.0.  Many of them were caregivers themselves and according to Rajiv, they were "universally positive" about Unfrazzle.  They could see clearly how it can help families, including their own. 

More than a few visitors also mentioned how much they "really love the name," even some who hadn't yet seen the demonstration of what Unfrazzle can do. 

While Rajiv was at the booth during most of the conference, he did manage to meet some companies with interesting products for caregivers or for older people.  Among the most impressive were:

Liz Emery, founder of Liz&Ett pictured on the left

• Liz&Ett, which makes clothes and accessories "for the stylish patient," based on founder Liz Emery's experience caring for her grandmother and father.

• PrimeWellness.com, founded by brothers Blake and Matt Henderson, which has a website designed to help people practice physical therapy at home.

MedCottage

• MedCottage.com, led by Ken Dupin, has a high-quality, pre-made mini-home that you can install in your backyard when one of your parents needs to move in but still wants independence.

• Snabbo.com, Barbara Crowley's amazing network for Boomers. (Barbara, by the way is an avid twitter user, who you can follow @snabbo)

Rajiv will be back in the Silicon Valley area by the end of this week working out the last remaining kinks in the Unfrazzle software before releasing it for beta testing. If you haven't already signed up as a beta tester you can do so at the Unfrazzle website.

You Are Not Alone

The time demands of caregiving and the resulting exhaustion often combine to make caregivers feel very much alone. Poet Vikram Seth offers these poignant and yet comforting words:

All You Who Sleep Tonight

All you who sleep tonight
Far from the ones you love,
No hand to left or right
And emptiness above —

Know that you aren't alone
The whole world shares your tears,
Some for two nights or one,
And some for all their years.

This is from his 1990 collection of poems also titled All You Who Sleep Tonight

Conserve Your Willpower: It Runs Out

Timed to coincide with the Wired Health Conference: Living by Numbers, the Oct 2012 issue of Wired featured "Living by Numbers: The Wired Guide to Health", with "18 data-driven ways to be happier, healthier, and even a little smarter."

Starting at #1 is "Conserve Your Willpower: It Runs Out". The article says that "willpower isn't just some storybook concept; it's a measurable form of mental energy that runs out as you use it, much like gas in your car." And it suggests ways to make the most of your limited resources, including "don't spread yourself thin: Make one resolution rather than many." It points out that "Another tactic is to outsource self-control."

Similarly, you can only pay attention to so many things at the same time. Outsource whatever you can. That's how Unfrazzle lightens your mental load, by helping you remember and keep track of your self-care and caregiving tasks and allowing you to devote your attention to other things.

The conference itself featured great speakers, including architect Michael Graves, Olympic decathlon gold medalist Ashton Eaton, scientist Craig Venter, photographer Rick Smolan, and Quantified Self founders Gary Wolf and Kevin Kelly. You can view all of their talks on fora.tv.

Unfrazzle at mHealth Summit

Hot on the heels of Unfrazzle's public announcement at the Health 2.0 conference, and presentation at an Aging 2.0 meetup, we've been invited to participate in another great conference.

Unfrazzle will be featured in the EngAGE Pavilion, organized by AARP and Aging 2.0, at the upcoming mHealth Summit in Washington DC (Dec 3-5, 2012). The pavilion "will showcase engaging and innovative wellness and lifestyle companies serving the 50+ market."

Unfrazzle resonates strongly with all of the pavilion's themes:
    - Connected Independence (In the home)
    - Rethinking the Everyday
    - Engaging the Family
    - De-Stressing the Caregiver
    - From Sick-Care to 'Health'-Care, and Wellness

If you're in DC, come talk with us under the Unfrazzle sign.