Caregiving has been given a national stage.

Because of the unfortunate situation of the Edwardses, caregiving has been front and center across the nation (and perhaps the world). EVERYONE is talking about it, one way or another. (Below are some links to just some of the articles).

Now with Katie Couric's "60 Minutes" Interview on Sunday, this discussion has gained even more momentum. Yes, many people have been criticizing Ms. Couric for the manner in which she asked the questions -- her harsh tone, her pessimistic "you do know you're dying, right?" attitude -- especially since she went through a similar situation caring for her husband who died of colon cancer, and her sister, who died of pancreatic cancer. Perhaps there is some truth to the criticisms in that there might be some resentment or personal opinion that Ms. Couric was expressing in her tone. However, the questions themselves, though harsh, are exactly what the nation has been debating -- was it the right decision to continue with the campaign despite fighting this recurrence of cancer? Was it Mr. Edwards' ambition that influenced the decision? What about their children-- has anyone thought of them? Will the stress and strain of a presidential campaign accelerate Ms. Edwards' ailment?

Each one of us can give an opinion --- we are all entitled to that. However, there is no one who has the answer as to whether this was the right decision --- other than the Edwardses. We can all ask these questions, but in reality, the ultimate decision on what is right for them, falls on the Edwardses.

New York Times: http://thecaucus.blogs.nytimes.com/2007/03/26/couric-criticized-for-interview-with-edwardses/

CBS News: http://www.cbsnews.com/stories/2007/03/24/60minutes/main2605038_page2.shtml

Huffington Post: http://www.huffingtonpost.com/linda-milazzo/katie-couric-you-were-un_b_44284.html

April 16 -- mark it in your calendars

That is the day, as the New York Times reports in "Justices to Hear Case on Wages of Home Aides," that the US Supreme Court has agreed to hear oral arguments in a case in which the Labor Department regulations that say home care attendant are not covered by the federal minimum wage and overtime laws are challenged. The plaintiff, a 73 year old former home care attendant, states she "often worked three or four 24-hour days a week, sleeping at a client's home, while hardly ever receiving time-and-a-half pay for overtime." Unfortunately, this is not uncommon.

We have written in previous entries about the looming crisis we will be facing regarding the shortage of professional caregivers, as clearly outlined in Caregiving In America, a comprehensive report released by the ILC and the Schmieding Center for Senior Health & Education published Fall 2006. As we had mentioned before, one reason could be the low wages these caregivers receive. Home health aides barely make minimum wage--- in fact, since 1999, their " median hourly wage has fallen 4.4% after adjusting for inflation."

Tragically, the former home care attendant who spent most of her career caring for others until health conditions prevented her from continuing working, can't afford a professional caregiver herself. She doesn’t even have health insurance to pay for her thrice weekly dialysis treatment. She must rely on her son to care for her everyday.

Something must be done to change this plight of professional caregivers. We will soon be facing a shortage --- yet we are doing nothing to encourage people to become professional caregivers. Professional caregivers are currently in the position of knowing that despite spending a career caring for others, they will not be able to afford to be taken care of themselves. As it stands now, the system can't even provide them with health insurance.

Courageous, strong, inspirational…

Those are words that have been attributed to Elizabeth Edwards from the other democratic presidential candidates after hearing about Mrs. Edwards’s renewed battle with cancer.

And they're right.

Mrs. Edwards has an uphill battle. Instead of cowering and letting the recurrence of cancer take her over, she is -- and will --fight it. In today's news conference she said she will continue on with her schedule -- she will do next week what she did last week. This recurrence will not stop her. That is the positive attitude we should all take when we have setbacks--- medical or otherwise. Bad things happen to good people. When you have setback, take a second for self pity, but then roll up your sleeves and continue on with your life. Don't let that setback stop you.

As everyone now knows, Mrs. Edwards is one of (if not the) strongest allies and assets that John Edwards, presidential hopeful, has. Now, many people may questions whether she should be on the hectic and grueling presidential campaign -- and many more may questions whether Mr. Edwards should continue on with his campaign. After all, not only is he a father of two young children, but now he is a caregiver for his wife. Will he be able to manage the hectic schedule of a presidential campaign? How will he manage his new caregiving responsibilities along with his other responsibilities? Should he even try to pursue his campaign?

These are the challenges CareTALK will explore--- because of a setback in which you are suddenly thrust into a caregiver role, what do you do? Do you give up your goals, plans, and ambitions? Or do you maintain those responsibilities and take on the additional responsibilities of a caregiver? Can it be done? If so, how?

The answer is yes, it can be done.

Will it be easy? No. Take the article "The Other Juggle: Taking Care of Mom and Dad" in the Wall Street Journal, for example.

Should it be done? There is no right or wrong answer for that. That is dependent on each person and their situation. However, CareTALK will try to weave our way through the pros and cons to make some sense of this. CareTALK will provide you with the tools to help you --- whichever decision you may make.

One must also remember that children can also be caregivers. Cate Edwards, John's and Elizabeth's oldest daughter,-- though not a child-- will also be thrust into a caregiver's role -- a caregiver for her mother and for her younger siblings. Therefore, Mr. Edwards is not alone… and neither are you.

CareTALK and its support community will be here for you.

Love is a funny thing

When you think of love, what do you think of?

Many may say they think of hearts. Others may say they get a warm, fuzzy feeling. Yet most, if not all agree they also feel a sense of calm and happiness -- especially if they know that love is returned.

The article in the New York Times, "Modern Love: My Parents Couldn’t Outlive, or Outrun, Each Other," is a very poignant reminder that not all love is "warm and fuzzy." Yet the couple in the article were in love -- even after 30 years of being divorced and after remarriages to other people. As you read the article, it may not seem like your typical love affair -- but it is love. (The writer calls it "modern love.")

Yet, is it really modern love?

Every person has their own definition of love. But in its foundation is a deep sense of commitment to the person whom you love and a willingness to do everything in your power to make that other person happy -- without expecting something back in return.

Caregivers have this love for those they are caring for. If they didn't, they wouldn't be able to take on the responsibilities they must bear. Caregiving is not easy--- and it shouldn't be viewed as a duty. It is a commitment you make to make your loved one as happy as you can.

The cost of professional caregivers

Some of you may have read or heard about Caregiving In America, a comprehensive report released by the ILC and the Schmieding Center for Senior Health & Education published Fall 2006, which stated there is a crisis looming due to the increase in aging baby boomers, a severe (and worsening) shortage of professional caregivers, and family caregivers who do not identify as such.

To add to this crisis, hiring a professional home health aide through agencies in Manhattan can cost approx. $150K/yr, according to The New York Times article, "New Options (and Risks) in Home Care for Elderly." This rate is staggering – even for a professional physician as described in the article. Just imagine--- if it's too much for a physician at a prestigious medical institution, what about those who are in the lower middle class, or lower class? What about those still earning minimum wage? What are they to do?

Those who can't afford to hire home health aides through the agencies, hire them through the gray market -- "an over-the-back-fence network of women [who ] are usually untrained, unscreened and unsupervised, but more affordable without an agency's fee, less constrained by regulations and hired through personal recommendation."

Although there is a high cost to hire a professional health aide from the agencies, only about "$9 of the $20 hourly fee goes to the aide. In a gray-market arrangement, the aide might get $12, a 33 percent increase — although sometimes without benefits, worker's compensation or Social Security…' According to the graphic in the article, "since 1999, the number of home health aides in the United States has grown 15.8% [not including aides from the gray market], while their median hourly wage has fallen 4.4% after adjusting for inflation." It seems as if both parties -- the professional caregivers and the families needing these caregivers--are losing out in the current arrangement with the agencies. The professional caregivers are barely making above minimum wage (which accounts for the high turn over) and the families needing caregiving would have to exhaust their savings in order to pay for such services.

Boomers need to focus on getting long term care insurance--- especially one that will pay you, the caregiver -- and not the agency-- so that you are free to choose the home aide of your liking. (The government does not pay for them unless you are poor or unless it is immediately following a hospital stay).

In aid of the professional caregiver's plight, "the Service Employees International Union has been at the cutting edge of creating a more stable pool of workers. In New York, Local 1199 unionized 60,000 home-care employees. Unionized aides, many of them former welfare recipients, get a full array of benefits, rare in this industry, and opportunities to master English, study nursing or learn computer skills.

One of the union's newest offerings is a sort of consciousness-raising group, focusing on self-esteem and a sense of community among otherwise isolated workers."

We salute 1199SEIU in helping the professional caregivers get the support, aid, and benefits they need. There is a crisis looming and we need more professional caregivers --- however, first we need to respect them and their work by raising their wages and providing benefits so more people can choose professional caregiving as a career. At the same time however, we need to tell our governments --both local and national -- that it is more economical to have home health aides than to have our loved ones in nursing homes (which the government does pay for under certain circumstances).

Happy Valentine's Day

Dear Readers,

As you all know, today is Valentine's Day --- a day of love. However, as much as the market pushes us into buying chocolates, flowers, plushed toys (they don't call it the "Hallmark holiday" for nothing) -- remember the true meaning of the day. It is about love and friendship...family, significant other, friends ... even pets :-)

As we noted in the "Special Programming" section (look on the right hand sidebar), there is a special on the NBC Evening News -- Caring for your Parents - Baby Boomers Taking Care of the Greatest Generation.

Caregivers are usually thrust into the role of caregivers--- sometimes without even knowing it (we are all caregivers at one time or another). However, these caregivers take up these caregiving responsibilities --- because of the love they have for their loved ones, whether it is for a parent, a child, a spouse, a family member, or a friend. You can read some stories from real-life caregivers like us-- like you-- here.

Happy Valentine's Day!

- The CareTALK Gals.

Special Posting: Congratulations to Revolution Health!

Congratulations to our friends at RevolutionHealth on the launch! We are delighted to see respect of consumers and their empowerment as the defining motivation for this new product/service offering. It is high time in a field that devours one-third of the Nation's GNP with very few REAL established controls and virtually no accountability. Steve, Ron and the team have put consumers into the driver seat via utilities and tools to navigate and manage their future healthcare experience -- and those of loved ones, near or far. Together, with our partners at GoogleHealth, we expect caregivers to be front and center as THE definitive managers of modern healthcare. Caregiving is a superior identity for consumers in this new paradigm. Proactive vs. reactive should infuse the spirit of any healthcare product, good or service experienced by consumers.

Thus far, the modern family caregiver has been given short shrift by the medical/clinical and non-profit establishment(s). The past identity of caregiver has been stuck in a time warp, reflective of an era dating back to the 1918 Flu Pandemic. Women now work long hours out of the home and families are spread around the globe. Technology has created utilities/tools that would have been unthinkable pre- WWII -- yet, when media puts forth the identity of a caregiver -- if they do at all, it is exclusively as a victim of circumstance. Toxic, as I was recently told by those who should know better.

CareTALK doesn't intend to trivialize the caregiving experience. Yet, it is TIME for a refresh of the consumer identity that reflects a REAL MANAGER who, in the modern era, has at his/her disposal a myriad of assets with which to take on the challenges of self-care and caregiving unknown to previous generations.

WHO is this modern caregiver? It is you. It is me. It is we.

The most sophisticated information consumers worldwide in history can and should take up this challenge in a modern identity that garners RESPECT and complements the new technologies available to manage the challenges we face, including unprecedented LONGEVITY. How can more than half of the boomers believe Medicare covers their long-term care expenses? Top/down (from on high?) information flow and education have not worked. We are facing a disaster if consumers do not take responsibility and control of their own caregiving -- including PLANNING from a young age.

Steve Case and Adam Bosworth are MODERN CAREGIVERS. (Read Adam's recent speech here.) They inspire. They challenge. They are agents of CHANGE. They are savvy and driven to not only elevate our management experience of healthcare complexities -- but to elevate the identity of MODERN CAREGIVERS in the process. We are not children or chattel. Time for the establishment(s) of healthcare and long-term care to recognize this pertinent FACT, and fully participate in our speedy education process. Caregivers and patients want and need a seat at the table in order to rein in the out-of-control, special interest-driven healthcare system.

Thank you Steve and Adam for pulling up chairs -- for us. The CareTALK Gals are with you!

Renata McGriff


* Here's a very interesting article we found that you may also be interested in:
Healthcare 2.0: Revolution Health: ambitious, as it should be

Hospice Care

Most people equate hospice care with end of life. While it is true that hospice care is primarily targeted to those who are terminally ill, those who enter hospice care don't necessarily pass away. A famous and recent example is satirist Art Buckwald. He entered a hospice program expecting to live only a few weeks--however, he recuperated well enough to leave the hospice care after 5 months. He passed away 5 months after he left the program (approx. 10 months after he initially enter the program).

There are other examples like this. Why this sudden improvement is health when people normally go into hospice care "to die"?

It may primarily be due to the palliative care -- a specialty aimed at improving a patient’s quality of life-- that is offered in the hospice programs. The New York Times has three articles dedicated to hospice care this weekend. In "There Is Life After Hospice, and Even Golf in Florida for Some" a director of palliative medicine at the Dartmouth-Hitchcock Medical Center, stated "hospice should be viewed not as giving up all hope but about getting the care one needs. If the disease continues to progress, the patient is likely to die,… But patients may also be able to gain the weight and strength necessary to prolong their lives."

Hospice programs are changing so as to promote helping the patient recuperate (as opposed to helping them prepare for death). In "A Chance to Pick Hospice, and Still Hope to Live," programs are now offering patients the option to receive treatments (such as chemotherapy or dialysis) while being enrolled in a hospice program. Previously, patients had to pick between getting treatment at a hospital to try to combat the illness or enter a hospice care program. Fortunately, now they don’t have to choose.

The third article in The New York Times, " Hospice Basics" gives a list of some basic (and advanced) services the hospices provide which you should be aware of--- for yourself but most importantly for your loved ones. Sooner or later, you will be the caregiver who will have to make these choices. Be informed about what to keep an eye on.