Tuesday, November 2, 2010

Press Release: New Website Coming to Support the Family Caregiver

Caregiver Village
An Entirely New Type of Gathering

For Immediate Release

New Website Coming to Support the Family Caregiver

New York City, NY (November 2, 2010) - This November marks the thirteenth annual celebration of National Family Caregivers month. The celebrations of these cornerstones of care began under President Clinton in attempt to recognize the millions of people providing unpaid care to their family members.

According to the National Alliance for Caregiving there are currently more than 50 million family caregivers. The typical family caregiver provides as much as 20 hours of care every week, many in addition to their careers and other family responsibilities. The need for family caregivers has increased rapidly over the past decade due to an overall increase in the average lifespan as well as the aging baby boomer generation. As a result, more and more families have a family member requiring either long or short term care.

The family caregiver is an essential piece of our society’s care for the sick, wounded and elderly; however, this additional task often adds financial and emotional stress on caregivers and their families. According to the Rosalynn Carter Institute for Caregiving the annual value of unpaid caregiving in the US is more than $375 billion. This value is higher than the funding set aside for Medicare ($342 billion), Medicaid spending on long term care ($300 billion), nursing home and home health care ($206.6 billion), and paid homecare services ($76.8 billion). Recognizing the worth of care that family members provide helps provide a frame of reference, as well, for the impact on the U.S. economy if family members can no longer continue to provide care.

Although many web-based sites exist to provide family caregivers with information and resources, caregivers continue to express a need for help and support, especially in relation to the physical and emotional stress of the work. In response to this need, a team originating in New York City is creating the Caregiver Village, expected to launch in early 2011.

“Caregiver Village is a unique place on the web, unlike anything currently available for family caregivers,” says Sharon K. Brothers, MSW, Vice President of the company. “Caregivers have told us repeatedly that they’re stressed and frequently exhausted from their caregiving work – on top of their jobs and family responsibilities. Even though they recognize the value of caregiver classes and books, the last thing they want is help that feels like more work.”

Brothers says that caregivers need relaxation and an opportunity to re-energize while gaining encouragement and support from others.

“Caregiver Village will offer an opportunity for people to connect and communicate – something caregivers clearly need today,” says Brothers. “Our experience leading family support groups and working with family caregivers over the years has demonstrated to us the value of peer support – along with the challenges of making that happen in a caregiver’s already over-filled schedule. Offering this support virtually, through the internet, opens accessibility to many, many more individuals.”

Caregiver Village is offering family caregivers and caregiving professionals the opportunity to become pre-launch Ambassadors. For details, see www.caregivervillage.com.


Caregiver Village is set to launch publicly in early 2011. During the pre-launch period, caregivers, authors of books written for caregivers and professionals who work with caregivers are invited to join the development team in creating this virtual community. Interested individuals are urged to join by emailing join@caregivervillage.com and become a part of this important experience.

Thursday, August 26, 2010

Redefining retirement

One of the pleasures of parenting is meeting other parents who have kids your age.  You sit together at the sidelines of football, softball or soccer fields, cheering on your kid and theirs alike.  During halftime you chat about how busy the kids are, the demands of practice, school and family, and how crazy your lives as parents have become.

When the kids leave home, those casual, informal parent-gatherings are gone – and they leave a void. 

So what a treat to get an email out of the blue a couple of weeks ago from good friend of our college grad daughter, inviting us to a lunch with his parents. 

We instantly connected with that bond you get with people who are going through the same transitions and changes as you are.  Then we started talking about our own lives, now that the kids are grown and gone.

“You just have to redefine yourself,” said Ellen.  “You’re no longer first the parent – or even the professional if you’re retired like we are.”

“How can you retire?”  I blurted.  “What on earth do you do?  You can’t possibly travel, ski and shop all the time.  We’ve got a ton of years ahead of us - healthy, productive years.  What will you do?”

“You redefine yourself – and you redefine retirement,” she replied.

She reached into her pocketbook and pulled out a small book.

“Here’s one thing we’ve been doing,” she said. 

The book was a beautifully written and illustrated guide to learning to ski, complete with photos of body alignment and ski positioning.  Clearly, it had taken a lot of time and effort to create.

“We’re skiers,” she said, “and we thought, ‘Why not put our knowledge to use teaching other people how to ski the easiest way we can?’  So far, the book has been very positively received by ski experts all over.”

She turned the book over and showed me quotes of endorsement written by skiers whose names even I recognized.

We went on to talk about some of the other projects burning inside us, just waiting for the time to get out and get expressed – projects we didn’t have time to tackle when working and parenting on a busy, full-time schedule.  As we talked, I could see that retirement – redefined – could be every bit as busy and productive as our working, parenting years have been.

I must admit, I’m thinking about the whole concept of retirement in a new way these days.  I’m looking ahead to a day when I can devote the skills that I’ve honed, polished and refined over the years to making the world a better place for the coming generations – and have fun doing it. 

I’ll write a book, or maybe paint a picture.

I’ll happily care for my god-children (someday, hopefully, my grandkids, too) and give the young parents in our lives a much-needed break.

No doubt I’ll be busy.  With grace and luck, I’ll be productive and engaged in life – right to the very end.

Friday, August 6, 2010

Personal Care Aides working at povery levels in many states

Imagine working hard every day, caring for people who depend on you to help them with the most basic physical and emotional tasks. Your daily work involves helping your clients slowly, patiently move from their bed to a chair.  You bend and lift, do laundry and vacuum floors every day.  Some of your clients refuse to let you help them, or yell at you when you come to work.

When you go home at the end of the day, your back is sore and your feet are just a little bit swollen.  You want nothing more than to put your feet up and rest a bit.

But you can't. 

You have to go to a second job, or care for your neighbor's kids, or figure out how to pay the utilities before your power is turned off.  You've got to put food on the table and try to figure out how to serve your family satisfying, nutritious meals spending any money.

Your kids are always fussing at you, asking when they can get a new cell phone, a bike, or even a skateboard like all their friends have.  You know you can barely afford to go back-to-school shopping for them, so you just sigh exhaustedly and say - again -  "Not this month."

Welcome to the life of the caregiver today.  In the majority of this country, according to a recent study by PHI, this typical Personal Care Aide earns near poverty level wages - which means less than $10.42 per hour. This caregiver, who works one of the hardest physical jobs and experiences one of the highest risks for on-the-job injury of any worker, not only lives paycheck to paycheck, she also is likely receiving some form of public assistance just to get by.

It's about time we focus on the way caregivers are treated in this country - not only by carefully examining their training and certification prior to working with vulnerable elders, but also in how we compensate them.  It's no wonder that even those most dedicated find they cannot afford to stay in this line of work if they face wages that don't increase year after year, keeping them mired in poverty.

As we baby boomers age, we'll need lots of these caring, compassionate Personal Care Aides, fully trained and prepared to help us live at home, or in care communities of our choosing.  We'll want the good ones to stay, and we'll want them to look forward to coming to care for us and our loved ones, without the looming worry about their economic survival.

As we're beginning to address the vast health care needs in this country, it's the perfect time to get educated about this problem - and begin taking concrete steps to fix it.

Wednesday, August 4, 2010

Selecting a Care Center

Loved this recent New York Times article on selecting a care community, "One Way to Judge a Nursing Home."

In the article, the author talks about trying to select a nursing home for his mother over 10 years ago.  He would ask the person touring him if he could talk to the nurses aides.  All but one said "no" - indicating that their aides hadn't been with them very long.  In the one building that said "yes," he discovered that the nurses aides had all been there for years.  They loved their jobs and felt rewarded and appreciated by the organization.  It was an excellent choice for this author - and great advice to others looking for a place for their loved one.

If you're faced with this challenge, don't look on the outside (beautiful place, doesn't smell) - look at the people.  They're the ones who will be providing the care to your loved one.  They will either become significant people in your loved one's life, caring, supporting, observing and loving them, or they'll be here today; gone tomorrow.

People who become caregivers generally have a deep compassion for the people in their care.  When they leave - which most will, in today's revolving door of caregiving - they are not leaving their clients.  They're leaving organizations that don't provide the training they need to continue to build caregiving skills.  They're leaving supervisiors who are just interested in filling shifts and covering their tasks.

They are leaving, most often, employers who don't recognize, acknowledge and appreciate the physical hard work of a caregiver, not to mention the emotional burnout it's easy to feel when you spend your day caring for people who need you desperately.

Halting turnover is one of the most important things we can do to improve the overall quality of care we give elders in this country.  It's not rocket science, either.  Just good, old-fashioned attention to meeting the needs of the people doing this most vital work.  Training them (a lot), supporting them (emotionally, verbally and financially); appreciating them for the work they do - every single day.


Tuesday, July 6, 2010

Rose Villa getting Culture Change Right

Imagine my surprise when I went to meet a colleague for a tour, and walked into a room full of people.  My first thought was, “Oops – wrong room!”  But my colleague quickly grabbed me and showed me to a seat.  Someone else placed three cups full of mystery fluids in front of me.  The meeting was clearly well underway, with lots of spirited interaction.  It took a good 5 minutes for a lull to occur long enough for my colleague to introduce me to the group and clue me in on what I was observing.

I had wandered into an active “Culture Change” meeting with the full team at Rose Villa, one of the first Continuing Care Retirement Communities in the Portland, Oregon area.  Serena Lewis (below left), a Therapeutic Recreation Specialist was creating fruit smoothies while Erin Cornell (below right) from Human Resources was demonstrating how easy it is to make tasty juice from raw veggies.  The topic of the day was food, and the group not only tasted the smoothies and juices, but also discussed ways to improve the appeal of pureed foods, ways to implement a realistic finger-food diet, and the use of “Dining Scarves” in place of the old-fashioned bibs to protect clothing during meals.  Everyone in the room contributed; everyone was respectfully listened to and supported.

It was clear that this is a group that takes Culture Change seriously.  They don’t just talk about it; they actively pursue it in their work with residents.  They set aside time to meet, try new things, discuss problems and come up with solutions. 

With so many nursing facilities still operating the same old way, it was tremendously refreshing to see that the team at Rose Villa is not just talking about culture change – they’re living it.  Kudos to the entire team:

Vassar Byrd, CEO
Ellen Burns, RN, DNS
Lynn Cikara, OT
Jill Getty, PT
Janes Pagtama, CNA
Kay Girsberger, Director of Health Services
Rachel Rushing, MSW
Serena Lewis, TRS
Erin Cornell, HR
Marianna Iverson, CNA, Rehab.
Christi Morris, Housekeeping Supervisor
Brian Quinn, Director of Dining Services


Thanks, Vickie Young, for sharing your comments about my last article:

Working as a in home care giver I see first hand what you are talking about. My relief came to work this morning saddened , unable to afford the cost of a car she relies on a friend for a ride to work. Because of car trouble difficult public trans and time she had to call a taxi can you imagine what that set her back. But she soon brightened up when she told me she only had 2 lessons left to finish your on line caregiver training class.Our employer has offered your class to all and is having a graduation steak BBQ for all that finish. I think this is awesome. Our clients are very lucky all of our caregivers are getting this extra training .It works great because they can do it when the time is right for them in between work family and car trouble . Thanks for making better trained caregivers your mission Vickie Young

Tuesday, June 22, 2010

Where do you turn when you’re all burned out?

Google the term “Caregiver Burnout” and you’ll find over one million results.  From articles to opinions to videos, advice on preventing burnout is all over the web.

Clearly, this is a problem.  Spotting the problem is generally easy; coming up with a solution is where the going gets tough.

Do you call in help from the family?

Many family caregivers tell me that first, they assumed their siblings would see how hard they worked and offer to help.  Later, they began demanding help.  Finally, they had to accept that many family members simply couldn’t help.  It usually boils down to the primary caregiver…burning out.

Do you turn to facility placement?

I’m an advocate for finding care communities that meet the needs of our aging loved ones.  Both my mother and my father-in-law live in retirement communities.  Both will tell you that the quality of their lives has increased significantly from what it would have been living alone in their former homes.  Assisted living communities and memory care communities offer much in the way of person-centered, homelike care today.

But they can present both emotional and financial barriers to many family caregivers, especially those caring for spouses.

Do you get help to come into your home?

This too is a solution that literally saves the lives of family caregivers, in many situations.  But cost is significant, and can quickly amount to more than moving into an assisted living residence if round-the-clock care is needed.

And then there’s the question that burns in our minds:  who is providing the care?

Today in this country that’s a very serious question.  Most caregivers, both in home-care and in facility care settings are entry level workers.  They’ve got entry level training – if any – and they’re paid entry level wages.  Many cannot afford their own health care, let alone child care, education and transportation.

This creates a caregiver group that struggles with their own burnout issues.  They struggle to stay in jobs that may be emotionally gratifying, while financially marginal.  They leave for jobs paying just a quarter an hour more – or just a couple bus stops closer to home.

That leaves families and the person receiving care in a position of turnover.  New caregivers means new people to train.  It means losing the knowledge that the old caregiver had of your loved one’s condition and needs.  It means starting over to build a significant relationship with someone who is often performing intimate tasks for the client.

We have an opportunity today to shape the way we enter into the next generation of caregiving.  Since so many of us – this massive, aging baby boomer generation – will one day need caregiving services ourselves, this is a task we’d better take on soon.

We cannot afford to avoid any opportunity to employ technology in our effort.  We need to support online caregiver training (my own personal focus), online scheduling systems and care tracking/management programs.  We need to refine currently available programs to let us communicate socially as well as health care data quickly, electronically – even automatically, in some cases.

We need to achieve economies in some areas so we can invest in other areas, like boosting the pay, training and professional regard of the paid caregiver.

It’s not to early to start – today!

Monday, June 7, 2010

Alzheimer's Disease Epidemic

As the baby boomers begin to reach old age, we're likely to see an explosion in the number of individuals affected with Alzheimer's disease.  What can we do about it?  Even Newt Gingrich got into the act this past weekend.  Read the full article - this challenge will take all of us, both sides of the aisle!

Wednesday, June 2, 2010

Caregiver Training – access and quality make all the difference

At the first of this year we launched our newest online caregiver training course:  the Personal Care Aide Certification course offered through our licensed career school, the Institute for Professional Care Education (www.IPCed.com). 

This course is being used by individuals seeking to become familiar with caregiving so they can open their own home care agency.  It’s being used by families so that a granddaughter can be prepared to help care for grandpa.

It’s being used by students in career schools who are studying to become nursing assistants and home health aides.

The good news is that it is being used to increase the number of trained, skilled caregivers throughout the country. 

The even better news is that the students love the learning process.  Just listen:

“This entire course showed me step by step how to be a good caregiver! It also provided the does and don’ts on different situations that you may experience out in the field! I give this program an A+!”

“Online learning was excellent!”

“The audio option made the online experience more personal and rewarding.”

“I have taken many online courses and this one was right up there with some of the better ones I’ve taken.”

“Every caregiver should have access to this kind of website at all times.”

It’s gratifying to hear that the students find this course valuable and interesting.  I might be a little bit biased, but I certainly agree with the last student comment:  every caregiver should have access to information that can help them provide the very best care possible to every person in their care.

It’s what I would want for my mother’s caregiver – and definitely what I’d want for my own caregiver!

Friday, May 28, 2010

Making a Difference every single day

Listen for just a minute to this music video recorded by senior care professionals and posted on the Assisted Living Federation of America's youtube channel.  It'll remind you that all of us who are caregivers make a difference - every single day.

Monday, April 12, 2010

Culture Change in Care Today

Have you ever heard of the Pioneer Network? It’s a website and a movement devoted to changing the culture in nursing homes today.

I’d heard about this movement, and certainly heard the words “culture change” associated with nursing homes for the past two decades. I thought that real culture change was happening everywhere, in every nursing home in the U.S.

And then I was faced with a personal crisis. My mother needed nursing home care following a severe car accident.

Three years later, my mother-in-law needed nursing home care following surgery for an intestinal blockage.

Both experiences left me convinced that even though Oregon is one of the leaders in culture change in the U.S., for families like mine, in the nursing homes we carefully selected, it was DOA – dead on arrival.

I was appalled to discover the look, feel and function of the two nursing homes seemed as if they were time warped – no different from my experiences in nursing homes in the mid-1980s, when I first began my career in senior care.

Today, the volunteer advocacy group I participate in talked about culture change. We had a speaker from the local coalition for culture change talk about what they’re doing, and what she sees changing. The bottom line: nowhere near enough.

What will it take to truly effect culture change in today’s nursing homes? What will it take to create an environment where caregivers are empowered to care for people in a warm, genuine way?

I have a feeling it will take a lot more than just talk. It will take more than revising schedules so that medications (or meals) can be delivered when the resident wants them, rather than on a fixed schedule.

Families who have a choice will do exactly what my family did in both situations: as soon as we possibly could, we picked up our loved one and we ran – not walked – to the nearest assisted living community.

In both cases, we ended up with our mothers in an assisted living community that provided gentle, loving, compassionate care, in apartments that felt like apartments not hospital rooms, for less than half the cost. The bottom line in both cases was significantly better care for significantly less money.

Which brings me to my own personal conclusion: families who have a choice in the matter will respond to the lack of change with action. Nursing homes that still feel dark, crowded, cold and clinical will be places where only those who have no choice end up. That will be a sad, sad day, for those individuals who have no ability to choose where they receive care.

Across the country, the number of nursing home beds is declining. The number of assisted living units is increasing. That should give us a clue about what the market wants.

In my own work as the owner of an online training company, we created a new Nursing Assistant training program online that doesn’t just have a lesson in person-centered care, but emphasizes the PERSON behind the care needs in every single lesson. We believe that maybe, just maybe, we can contribute a little to genuine culture change by training people right, from the very start.

Imagine if those people trained the right way from day one stick it out to become the leaders in care. Imagine if companies looked – with their eyes fully open – and saw how the trend to move out of nursing homes into residential models of care will ultimately affect their bottom line.

Imagine if they then decide to do it differently – to give the consumer, and their baby-boomer family, what they want today: a place to receive the care our mothers and fathers need, when they need it, in a compassionate, caring way.

Perhaps then we’ll truly see culture change in nursing home – because we demand it and won’t accept anything less.

Friday, March 12, 2010

Caregivers don’t need to go it alone.

Some days you know that you should just sit down and shut up, because someone else is able to express exactly what you’re thinking, but in a much clearer way.

That’s how I felt today when I came across Jonathan Rauch’s article, Letting Go of My Father, in April’s online edition of the Atlantic magazine

Rauch shares his belief that family caregiving is much the same today as the experience of women was in the 60s and 70s. Certain expectations were placed on women to stay home and care for house and family, and to be happy doing it. Men – husbands – were free to work, come home and read the paper, waiting for that pre-dinner martini to be delivered with a smile.

The reality was that many women felt isolated in the modern single-family home. Many felt bored while their kids were at school most of the day. Many simply felt trapped.

It wasn’t until some women began daring to say, “We can do more” that other women became empowered to make choices that worked better for them and for their families.

Today, family caregiving is much the same way. Caregivers report a higher rate of depression and stress than non-caregiving adults. They report challenges staying on top of their job requirements, costing employers billions of dollars ($13.4 billion annually, at last count) each year in additional health care costs, not to mention the cost in lost productivity.

And yet we are only just now beginning to share our stories; to bring the tasks of family caregiving out of the dark and into the light of dinner parties and cocktail hours; of support networks and resource communities.

Rausch shares his frustration that the culture of caregiving in this country keeps the individual family caregiver in isolation and in the dark about resources that may be readily available.

He talks about the importance of learning more, as family caregivers, about tools, techniques and resources. In that, I can add my wholehearted support, as I see, every day, family caregivers who report that caregiver training classes [link to IPCed PCA main page] “saved my life” by providing them information they needed to keep doing what they chose to do – be a caregiver.

In the end, Raush says,

“There should be no need for anyone to go through this alone, and no glory in trying.”

To which I simply say, AMEN!

Tuesday, March 2, 2010

Caregiving concerns are ultimately personal concerns

Every 8 seconds another baby boomer turns 50 in America.

Having completed that right of passage myself, it’s not all that painful. After all, 50 is the new 30, right? Just look at all the trends we boomers are bringing to this ripe, middle-age time in life – “cougaring” (the older woman/younger man romance); the increase in marijuana usage in older adults (directly attributed to the aging baby boomer/stoner phenomena), the growth of new businesses started by us “mature” adults, to name just a few examples.

Here’s a more sobering fact: one in three of us “over-50s” will be thrust into caregiving tasks for a parent or spouse, often with no more warning than the ringing of the phone.

We’re pretty well prepared to carry on most of our other aging baby boomer roles, but are we ready for this one?

Do we know what we would want to do, much less what our parents want us to do for them? Will we bring them home to our house if they need care, or will we insist they move to a care facility? Are we prepared to step back into daily communication and decision-making with our siblings, many of whom we no longer share much in common?

Just listen in to the conversations around you next time you’re at a gathering of people in this age group. You’ll hear snippets like these (I’m paraphrasing from a recent gathering I attended):

“My wife’s mom died last summer; we’re still reeling from all of the tasks we need to do for her estate. We never realized what a job this would be. We haven’t been able to travel at all this year.”

“My parents are driving me nuts. I worry about them every day, and they simply refuse to leave their home. Anyone know how on earth I can talk them into moving into an assisted living community?”

“My dad finally agreed to move into a retirement center a couple of months ago. I feel like I have my life back!”

“Margie’s mom is in a hospital bed in our living room. That consumes us physically, emotionally and in every other way. We explored other options, but Margie says, ‘She’s my mom – I need to care for her.’ The whole family, though, is involved; not just Margie. It’s incredibly difficult right now.”

There’s a certain awareness of this impending, life-changing dynamic within many governmental and political circles. Businesses and publications are picking up on the boomer-turning-senior phenomenon.

But, as is typically for us self-focused boomers, we are finding it difficult to prepare on a personal level.

Talking to mom and dad about the future? It’s a tough conversation; I think I’ll wait a bit longer.

Talking to the siblings about planning ahead? We can barely talk about whose turn it is to host Christmas this year, let alone about what we’d do if something happened to mom or dad.

And while we’re delaying these important discussions, the day is looming closer when the phone will ring…and it suddenly becomes personal.