Of caregiving and budgets

It’s a very sorry state of affairs when California needs to cut essential services to seniors and their families to help balance the budget.

Earlier this month the Los Angeles Times ran a news story about governor Schwarzenegger’s proposal to shut down state supported day health programs, many designed especially for elderly or individuals with Alzheimer’s disease.

Anyone who has cared for an individual with Alzheimer’s knows what a daunting task this is. Not only is there a constant need to anticipate the desires of the person in your care, but there is a constant need for safety supervision.

Usually, quality of life is only a phrase in someone else’s vocabulary – not even a consideration when you’re just trying to get through the day. There are behavioral challenges and wandering issues; nighttime awakenings and daytime confusion. All in all, families who provide this care deserve every bit of support that we, as a society, can give them.

One of the program directors involved estimates that families facing the loss of day programs will have little choice but to seek nursing home care for their loved one, usually at the state’s expense.

What seems like a savings of $385.8 million could, estimates Debra Cherry, end up costing the state many times more if nursing home care is needed for these individuals.

That’s the economic reality. The personal reality is much more heartbreaking and, well, personal.

Join the healthcare debate

According to the recent New York Times/CBS poll, the majority of Americans wants a government run healthcare system and would be willing to pay extra taxes for it. Of the people participating in the poll, 85% reportedly believe the healthcare system needs to be “fundamentally changed or completely rebuilt.”

Google the words “healthcare poll” and you’ll find articles from the Wall Street Journal to bloggers on the street debating this subject – usually in no gentle terms.

I’ve been reading the letters to the editor in my own local paper, though, and repeatedly I see the support that the New York Times' poll expressed. People are tired – exhausted, actually – with the constant fear of bankruptcy and ruin because of the high cost of health care.

Oh sure, most of us have insurance. But most of us also know friends or family members, if we haven’t experienced it ourselves, who had insurance but who still experienced the nightmare of our healthcare system’s dysfunction.

Like my friend, Melanie, who has been clean of her dual-sited cancer now for more than two years. The medication she takes to keep her that way costs nearly $1,000 per month. That’s the co-pay after her insurance kicks in its share.

Or my oldest daughter who, at age 23 is still on our family health insurance plan. In the current job market, she is unable to find a job that includes health insurance, or pays enough to allow her to purchase her own private coverage. She’s a college grad and a willing worker, but she’s stuck.

One person writing in to our local paper notes, “I’ve been driving on ‘socialized’ streets all my life, and sending my kids to ‘socialized’ schools. It works reasonably well in those areas – what’s so awful about the idea of ‘socialized’ medicine?” Used in this way, the term “socialized” simply means “publicly funded.” Seriously, what IS so wrong about that?

My favorite line from the entire last season of the TV show, Desperate Housewives, occurred when Teri Hatcher’s character, Susan Mayer, was arguing with her old boyfriend who now wanted to marry her to avoid being deported back to Canada. Frustrated with his demands, she resists, saying, “It’s Canada – it’s not Iran. It’s like American, but with free health insurance.”

People from this country often point to Canada as an example of healthcare gone wrong. Maybe it’s different now, but as a graduate student many years ago, living in Canada and paying for student coverage in the national health insurance program, I loved it. Despite a series of minor health problems, one of which required outpatient surgery, worries about cost or access never once took my mind off my studies or my future. I was covered, for whatever I needed. I was free to choose my own provider, and I recall no long waits for appointments, either. What I remember was a series of health care professionals who treated me with respect, educating me about my condition and my needs and inviting me to participate in the decisions about my care.

As the population of the United States ages, we’ll all experience more health care needs. We’ll all pay for it, too, one way or another.

From my daughter, who would likely require publicly supported health care with one major illness or accident, were she not on our policy, to my grandmother, who is on the waiting list for a Medicaid-funded nursing home bed in her small town; we all pay the price of healthcare.

Let’s find a system that, like our schools and roads, offers access to everyone, no matter what their income level. Let’s include long term care in the conversation, as well. Our roads may not be perfect and our schools may have challenges of their own, but in these areas at least we can boast some level of world leadership. In healthcare? Not so much.

Managing the Growth of Home Care Companies

I’m always interested in listening to what people are saying about care for our nation’s elderly. We know that, if it were left up to most of us, we’d prefer to stay in our own homes right to the end of our lives.

Home care is the fastest growing sector of care in this country today. A couple of days ago I was listening to a recorded interview of a woman by the name of Shelly Sun who, with her husband, founded a home care franchise company. Their company, BrightStar Healthcare, is only a few years old, but already they have over 45 locations. They’re planning to grow to 400 locations by the end of next year. I’m betting they do it.

Their story is featured in Entrepreneur Magazine, July 2008, as a successful start-up story. Like most people who are successful in the field of elder care, they got started because of a personal need. The Suns needed care for his grandmother, according to their story, and when quality care was not readily available, they saw a need.

Filling a personal need is how many of us got started in senior care. It’s where most of us get the passion to continue to explore best practices, no matter what our particular niche might be.

And when it becomes personal – when we need help for ourselves or a member of our own family – we look for others who share the passion. We look for someone who will be dependable and trustworthy, but most of all we look for someone who will know what to do and how – and when – to do it.

Today, home care has a reputation of helping people stay where they want to stay – in their homes. Keeping a positive reputation, however, will mean that home care agencies manage their rapid growth with skill.

They’ll need to find a way to provide compassionate, dependable caregivers to families in need, often on an ever-fluctuating schedule.

They’ll need to ensure that their staff are not only trustworthy but well trained to provide exactly the care their clients need. Working alone in a client’s home presents unique challenges, particularly to new caregivers.

One of the first skills we teach new caregivers, especially those working with people with memory loss, is to get help when they feel overwhelmed. When a client resists bathing or personal care, for example, forcing the person will result in someone getting hurt – usually the caregiver.

In home care, no one is around to hand the ball to when the caregiver has tried everything she knows. No one is there to say, “Give it a rest for a few minutes – why not take a short break?” when the caregiver is clearly frustrated and at her wits’ end.

Will home care agencies end up with the same negative reputation that has plagued nursing homes over the years? Will they become the focus of front page newspaper and TV investigations, with stories and images that cause us all to shudder?

Clearly, it depends on keeping the passion for providing quality care. It depends on focusing on staff training with a laser eye. It depends, in short, on managing the high rate of growth so that ever more people can choose to receive care in their own homes, right to the end.

Caregiver training essential

Training is essential for good caregiving. Yes, you can love the person in your care. You can be compassionate and caring by nature. You can be dedicated to providing the best care possible.

But you still need training.

Google the term “caregiver training” and you’ll find tons of options. Many community centers, hospitals and senior centers provide free or low-cost training courses. Many community colleges offer training as well.

You can order video tapes or training books. You can even take a full Caregiver Certification course online.

What’s the payoff? If you’re a family caregiver, studies show that you’ll be able to reduce your own caregiving stress and continue to provide care for 1 ½ years longer that you could without training.

If you’re a professional, paid caregiver, you’ll find better jobs and more options with training. You’ll also be able to earn more and feel more confident in your work.

It’s a no-brainer – get the training!

Long term health care personal and political: A book review of “Caring for our Parents” by Howard Gleckman

Story telling is one of the oldest forms of communicating ideas and information. It’s an approach that Howard Gleckman, journalist and researcher, uses to good effect in his new book, “Caring for our Parents: Inspiring stories of families seeking new solutions to American’s most urgent health crisis” (St. Martin’s Press, 2009).

Like most of our personal experiences, Gleckman’s starts with a phone call. “With just a few words, my family was sent plummeting into a painful, mysterious, and all-consuming world for which we were completely unprepared,” says Gleckman. “It would be, at once, the most difficult and the most rewarding thing I have done in my life.”

Gleckman tells how first his mother-in-law suffered a fatal stroke, revealing his father-in-law’s fragile health condition. Following a stress-filled, long-distance caring experience that lasted three months and spanned several attempts at caregiving solutions, he died. Shortly before he died, however, Gleckman received another phone call, this time from his mother. His father was dying. Gleckman and his wife balanced their own jobs, travel to help family members and all of the emotional drain of losing a loved one – at the same time running into endless challenges finding and paying for the services their loved ones needed.

“Caring for our Parents” is filled with stories similar to these – stories that many of us recognize only too well as we struggle to balance our own roles simultaneously raising our children, holding down a career and supporting our parents.

Running through these stories is a theme of frustration at the disjointed, challenging nature of health and long term care for Americans today. Gleckman points out that not only do most people want to stay home through the end of their lives, most Americans do, in fact, receive care at home by a family member. Not that this is easy, cheap or without personal cost: caregivers have significantly higher rates of illness and accidents than non-caregivers, often dying before the persons in their care.

Support and training for family caregivers helps, of course, but that is frequently difficult to access or to fit into an already over-crowded schedule.

Gleckman proposes a variety of creative solutions to these challenges, including neighborhoods that join together to become NORCs – naturally occurring retirement communities.

As Americans age, however, the cost of long term care will become more and more of a social issue, not just a personal one. In his recent opinion piece in USA Today, Gleckman points out that while 80% of Americans have some form of health care coverage (that’s more than 250 million of us) only 7 million Americans have long term care insurance.

“What will we do when the Baby Boomers start needing this care over the next few decades?” Gleckman asks. “As 77 million Boomers reach old age, today’s challenges will become a full-blown crisis.” (USA Today).

“Caring for our Parents” is a book that accurately and poignantly portrays a real need that is personal and political. Care for our aged parents - and soon, for ourselves - is something we need to take action on now if we are going to have any hope of averting this "full-blown crisis."