Caregiving at the Crossroads

Consumers want - and deserve - so much more

2013-08-09T14:47:00.001-07:00

We have a saying in our office that the senior care industry is only one lead news story away from some drastically increased regulations.

We may have seen that one news story recently. The Frontline piece, Life and Death in Assisted Living, may have scared consumers enough that they start asking - and pushing - for regulations that change the senior care industry.

Caregiving has been approaching an interesting crossroad for some time now. It's that moment in time when an aging population puts so much stress on the healthcare/caregiving field that something has to give.

That "something" had better not be quality of care!

What it needs to be is a renewed focus on who is providing the caregiving. It needs to be a focus on the qualifications of caregivers - their training, screening and their compensation, too.

Check out one organization that advocates for direct care workers - the Direct Care Alliance. They've created a Credentialing exam that they're trying to get adopted nationally - and we've got a great online course that is one option to prepare people to take the course. Together, we can effect change in one area it is most needed.

Change is indeed coming to Caregiving.

VOICES of the VILLAGE: Shawnee Penkacik

2011-06-30T10:46:00.000-07:00

Shawnee Penkacik

By Cara Moore, Investigative Reporter

Caregiver Village is all about caregivers. Most of us think about caregivers as older people – middle-aged, at least – caring for an aging parent. One of my airhead friends even said to me recently, “You write about caregivers? Ick! Caregivers are never very cool.”

Anyone who thinks caregivers are never very cool hasn’t met Shawnee Penkacik. Shawnee is not only cool, she’s young, vibrant and beautiful. She’s no middle-aged fuddy-duddy, I’ll tell you that! But Shawnee IS a caregiver. And she is very, very much a part of Caregiver Village. Let me tell you her story.

When you meet Shawnee, the first thing that gets your attention is the way she introduces herself. “I’m the mother of nine children,” she says.

“Whoa – stop right there!” is my instant response. I can barely handle one teenaged son – how on earth (not to mention why) would someone handle nine kids! But we’ll get there…

Shawnee starts off right away talking about her personal caregiver life as the mother of two sons with Mitochondrial disease, a disease that, frankly, I had to have her spell first, and then explain to me. It’s something I’ve never heard of, but as Shawnee talks about the disease she also shares that it’s much more common that anyone thought.

Shawnee pointed me to the United Mitochondrial Disease Foundation website where I learned a lot more about this disease. She also suggested I check out the website http://www.mitoaction.org. The diagnosis is tricky, as the disease affects so much of the body and looks different on different people. “Over 20% of moms are accused of Munchausen syndrome,” says Shawnee. I know what that means: the docs think they’re making stuff up just to get attention.

“When my first son was born, I had no idea what was wrong. He just slept all the time, and never wanted to eat,” says Shawnee. “When my second son was born showing some of the same symptoms, the doctors just thought I was projecting my experience with my first son on this baby. They were wrong – he’s also affected by the disease.”

As we talk, Shawnee shares a little bit more about herself. “I never thought I’d have kids,” she says. “The doctors told me that my spine was too affected by scoliosis to be able to get pregnant. I was OK with that, too. Guess God had other plans for me!” Shawnee talks about the challenges of getting her kids to their medical appointments, but she always says it in a positive way.

“I don’t drive (I have M.S.), but my friends, my mom and my husband drive me and the kids. I’m so lucky!” says Shawnee.

“But NINE kids,” I say. “What’s THAT about?”

“We just figured each baby was a blessing from God that we were meant to have,” she replies, and then continues to talk about how “lucky” she is.

“So many other parents of kids with this disease have it so much harder. We don’t have to worry about oxygen or other problems. I did have to learn how to put a feeding tube down my infant son without getting it into his lungs – that was scary. But otherwise, we’ve been really blessed.”

When I talked to Shawnee she was busy packing. “We’re moving to Arizona in a few days,” she tells me. “My husband got transferred, so we’ve started packing and will move there soon.”

As for connecting with health care professionals there, Shawnee has already hooked up with a mom’s support group, who is helping her find great medical support. She’s positive and looking forward to the move, excited, as well, that her husband can also find a dad’s support group there.

“My husband, who is my best friend and biggest supporter, handles it differently than I do,” she says. “I think it’s just harder for him to express his feelings, even though he’s willing to do whatever needs done to help the kids and me.”

Shawnee says her biggest caregiving challenge comes from talking with the health care providers. “I had to learn to keep a journal and to document everything. Most importantly, though, I had to learn to stand up and fight for my kids. That was hard for me to do at first, but it’s been the toughest challenge and the most important thing I’ve learned.”

Connecting with other caregivers has been the best stress-reliever for Shawnee. “Many of the moms I connect with online have it so much harder than I do. I think, in many ways, my problems are really just inconveniences, especially compared to other moms.”

Learning about the disease and educating herself about caregiving has been extremely valuable, too. “I found a scheduler through Caregiver Village that is essential to helping me keep track of all the daily medications my kids take – even though it was designed for people with Alzheimer’s disease. It’s perfect for me! I’ve also learned a lot more about taking care of myself, and am trying hard to do that,” Shawnee says.

I can only imagine how hard keeping a marriage intact would be with nine kids, not to mention two kids with very special medical challenges. When I ask Shawnee how she does it she replies, “It’s easy: we laugh a lot. We try to have a weekly date night, too.” Shawnee talks about her husband with fondness and a genuine sense of romance.

“Sharing my story is one way I can help other people,” says Shawnee. “It can feel like you’re all alone – but there are actually lots of us facing really tough caregiving situations. If we can support each other it makes the whole experience a lot easier.”

I think sharing Shawnee’s story can be more than encouraging. For me, at least, it provides some kind of perspective that maybe my own caregiving challenges aren’t all so bad. If Shawnee can feel lucky and blessed, so can I!

VOICES of the VILLAGE: Lisa Cerasoli

2011-06-08T11:48:00.000-07:00

By Cara Moore, investigative reporter

Lisa and her Gram

Editor’s note: Lisa Cerasoli is the author of “When Nora Jo Fades Away,” a book selected for the Village Chronicles caregiver game book club discussion in Episode 2. Lisa makes a guest appearance in the game; she also hosts a real Book Club in Caregiver Village called “It’s Hip to Care!”

Lisa Cerasoli is one of the funniest, most fun people I have had the privilege to meet recently. She’s full of life, energy and sass. It doesn’t surprise me in the least that she named her daughter “Jazz” – I think, for Lisa, life is a full-on riff, just setting the stage for us to get up and start dancing.

What does surprise me is how Lisa took to caregiving. She’s an actor; a Hollywood pro. But clearly, when her family called, Lisa was just as ready to dive head-first, full-steam-ahead into caregiving as she had been into acting.

And of course for Lisa, it wasn’t enough just to head to the Michigan home lands. No, Lisa also found a husband, had a baby and wrote a couple of books.

Typical Lisa style!

When I first met Lisa her Gram was living with her, providing her with not only funny stories and great life experiences, but also with real-life caregiving moments. The kind of moments that make you question your sanity, your judgment and your ability to continue the caregiving role. But Lisa was devoted. She was committed to caring for her Gram, as long as needed.

Then suddenly, not long before Christmas, Lisa’s Gram died. I was really worried about my new friend: how would she cope with such a monumental loss? Would it be devastating to Lisa and her family?

When I checked back in with Lisa recently, I wasn’t really surprised at her perspective. For Lisa, losing her Gram was not the end of something, but rather the beginning.

But I’ll let Lisa tell her own story, in her own words (warning: Lisa is colorful, as my own gram used to say!)…

Life on Hiatus

I feel like this is just a quick break from the Universe before I’m assigned another “task” -- this sudden onset of FREE time. Even the week Gram was dying in our home, we had hospice and relatives weaving in and out at all hours, and many would ask if they could be next in line. The atmosphere was (for lack of a better word) jovial, all considered. I hadn’t slept in a dozen days, and so I’d chuckle and then nod at each and every request. But that jovial vibe they were all experiencing was really more “Gram” than me. That’s what everyone was so drawn to. Even in her most labor-intensive hours of death, her lighthearted spirit permeated every room in our home.

When you incidentally become a caregiver, you discover a whole bunch of crazy shit. One thing that really blew me away was that not everybody can do it. Some of my biggest mentors and most cherished family members are not cut out for caregiving. So I’d use and abuse them for other tasks when they’d volunteer to help, like grocery shopping, detailing my car or helping me tile a floor. (I know -- I seriously abused them.) It’s funny, though -- they were grateful for it. They were glad to help in a way they felt comfortable doing. And I am no good at grocery shopping, so we all have our talents.

Gram died on December 16, 2010. And January was just plain weird. I cried in my car. I cried while reading my kid The Cat in the Hat. I cried during disco bowling (and not because I didn’t break a hundred). I cried when I watched The Dr. Oz Show. Gram and my daughter, Jazz and I used to watch it every day after Jazz came home from school. One of my last memories was an episode he did on breast care. Gram literally broke out her boobs and gave herself an exam right along with the TV, and Jazz and I were laughing so hard we couldn’t get the words out to stop her. I cried so much, I had begun feeling like a real fool crying over a nearly ninety-year-old woman.

One night during “the reading hour” tears were streaming down my face, into my ears, off my chin, etc.. and Jazz said, “Mommy, are you sad over G.G. again?” I nodded, “Yes.” I was missing her Great Grandma. Then she ran to the window and looked up into the night sky and said, “Mom, come look. See that bright star right there? I bet that’s G.G. ‘cause she was loud and she was really bright. You don’t need to cry anymore. If you’re ever sad again, just look up into the sky and you can wave to her.” We both waved away, and I stopped crying. I had to. I got hit with a gigantic dose of wisdom from a five-year-old and crying seemed pointless after that. But my grieving didn’t end there... Oh, no...

I left with Jazz for Los Angeles and Las Vegas the end of January. We had friends and family who invited us out for an extended stay. We readily accepted and ran to the airport like we were being chased by a pack of rabid wolves. And then we extended our Out West Adventure from three to ten weeks. Talk about weird ... my husband started to wonder if we were coming back! I worked like a madwoman on writing and other endeavors, like my documentary, 50 DAYS with Alzheimer’s. Jazz played with her triplet cousins and lived part-time with the grandparents in Vegas, too. She learned how to be a happy, carefree kid. And I learned how to be a real, live mom -- you know, one with rules and consequences and an inexhaustible amount of time for their kid(s). This stuff didn’t exist in our former “caregiving” lives.

June 1st was Jazzy’s sixth birthday. Pete and I invited fifteen kids over for water sports in the backyard. Okay, I invited the fifteen kids; Pete was my unwitting hostage. Thank God he’s a special education teacher! That never could have happened last year. Pete and I also went for a three hour walk along Lake Superior one day (which ended with a couple of beers at a local nano brewery, Black Rocks). It was a fresh adventure for the two of us as a married couple.

The truth is, the last six months have been an experiment in “making it” without Gram. And life is more relaxed. It’s calm. It’s easy. But, it’s not the same. There is an emptiness that stalks me. It doesn’t happen all the time. This wave of longing doesn’t frequent me like anxiety used to when I was knee-deep in caregiving, that’s for sure, but it lurks and strikes randomly. I miss the hell out of her. We all do. The house misses her. And it’s going to take a lot longer to get over than I imagined back when I was busy whining about my lack of FREE time while she was busy losing her memories and her mind.

So, now that I am six months out of caregiving, people have asked me, “Would you do it again?” Yes, yes I would. I’d do it without thinking or blinking, just like I have done for the last eight years. And I answered “yes” to this question during the most emotionally and physically draining days of my six year adventure with Gram, the amazing Miss Nora Jo. I answered “yes” while bathing her in bed and while she was screaming from being moved because her pain was so intense (but I had to change her, nonetheless). And I answered “yes” after spending several nights curled up on the tile floor bedside her because I was afraid it would be our last night together. Yes, I’d take care of another loved one because I believe caregiving chooses us. So, if I am chosen again, I am ready. In my mind, this is just a hiatus.

And, “yes,” I’d even do it for my mother-in-law, but, you know, she’d have to say, “Pretty please with sugar and a six-pack on top?”

Lisa Cerasoli
Author of, As Nora Jo Fades Away
Host of It’s HIP to Care @ Caregiver Village

VOICES of the VILLAGE: Meet Sharon Brothers

2011-06-03T12:28:00.000-07:00

By Cara Moore, Caregiver Village investigative reporter

I’m so pleased to be able to introduce you to Sharon Brothers in this “Voices of the Village” segment. Interviewing Sharon was a bit like interviewing myself as we have so much in common!

Sharon is a passionate advocate for family caregivers, so I asked her, “How did you become so involved in family caregiver issues?”

“It all started with a phone call,” says Sharon. “I know a lot of other family caregivers can relate. One minute your life is filled to the max with kids, work, friends, and just the ordinary stuff of living. The next minute – out of the blue – the phone rings.”

I’ll let Sharon take her story from here.

I was sitting in front of the neighborhood ballet studio waiting for my daughter’s class to finish. I had rushed out of the house to get there in time…I have a bit of a reputation for being the mom who keeps her daughters waiting for their ride…so this time I was going to be on time!

As usual, I was half-way through a number of projects at home – dinner on the stove, mail all over the counter, clothes fresh from the dryer - and just left everything where it was. I was only going to be gone a minute.

And then my cell phone rang. It was my mother’s cell phone number, so I answered it, expecting some news about my sister, an update from her doctor’s visit or just a general, chatty ‘hello.’

But it was not my mother’s voice. It was a stranger’s voice, who started out by identifying himself as a paramedic. He said, "I’m taking your mother to the trauma center."

"What happened? Where’s my dad?" I asked.

"Your dad was taken to the rural hospital close to the accident site," he replied. "I can’t tell you anything else but you can call the hospital directly."

I’ll bet you know that feeling of having your world shift significantly in an instant. Somehow I sensed that my own world would never be the same after that moment, but I didn’t know exactly how. My routine, my chores, my daily order of life was off-kilter. I didn’t know what to do or how to do this, so I did what I knew: I started driving.

The trauma center in my city was about 40 minutes away. During that drive, my cell phone rang twice with calls from the hospital social worker, urging me to hurry; suggesting that I not come alone. She would give me no additional details; the implications were clear: it would not be good news.

As I parked in front of the hospital I had the sensation that this was as far as I could go on auto-pilot. From here, I’d need information or help to navigate the next steps. I felt shaken to my bones, as much with the unknown as from the fear of what was to come. I sat, frozen in my car, while my young daughter asked, “What can I do, mom?” I could only look at her with a frozen look, knowing that I was failing at that very moment in my job as a mom: to shield her from the worst life had to offer. I knew that we would soon see the worst, up close and very, very personal.

Minutes passed. I decided that, rather than face what I believed I’d find inside the hospital, I should find out about my dad. He must have been only slightly injured to have been taken to a small rural hospital.

Three disconnected, badly transferred calls later, I was speaking with a physician. He began, “We did everything we could for him….” and ended with “we couldn’t save him.” I never really heard the words that came between.

My protective mom instinct left in that moment and I wailed long and loud. I had convinced myself that this would be the good news – what could possibly be worse? My daughter grabbed my cell phone out of my hands, dialed my husband, and said into the phone in a shaken, anguished voice, “Dad, you’ve got to come NOW. Mom needs you NOW.”

I sat, frozen in the car until my husband arrived. We entered the hospital together, and began a journey that continued late into the night, and for several years to come. I became, in that instant, a family caregiver.

I don’t know about you, but I get chills listening to Sharon’s story. It seems to me she captures the essence of what it means to have your life turned upside down by an event that turns you from parent, boss, employee and friend into a new life definition of being a caregiver.

I asked Sharon for a quick update on what has happened since that night.

“A lot has happened. I learned that no matter how long I’d been involved on the professional side of caregiving, when my own family was involved the needs I faced were exactly the same as every other family caregiver. I learned to navigate my way through acute care, long-term care and rehab. Sometimes, I learned to just be quiet and be patient – not in my nature!

“Sometimes, I learned to strongly advocate for my mother, who survived and, within a year was able to walk and live independently – against all predictions of everyone who cared for her in those early days following the accident.

“And one week ago, my mother, five years after the accident that took the life of my dad, married a man with whom she’s passionately in love. The only negative part of this story is that they are so in love that it feels like being around teenagers – and it’s my MOM!”

Now I know where Sharon gets the passion and the intensity she brings to the Caregiver Village development team. She’s walked in the shoes of the family caregiver – and she’s helping build a place where we can connect, learn, share and grow as we face similar challenges together.

Sharon Brothers is the Vice President and Content Specialist for Caregiver Village. She has a Master’s degree in Social Work from the University of British Columbia and has dedicated her career to helping create programs and services that meet the needs of the aging and those that care for them. Find Sharon in Caregiver Village on the web or on the Caregiver Village Facebook page.

VOICES from the VILLAGE: Jennie Shortridge

2011-05-25T14:52:00.000-07:00

Jennie Shortridge

You may have heard the advice new writers are given by the pros: “Write what you know.”

My new friend, Jennie Shortridge, the author of the book Eating Heaven, does exactly that.

I had never met Jennie or even heard about her until my own book club (the one you’ll get to eavesdrop on during the Village Chronicles game) picked Eating Heaven to read, based on recommendations and reviews from other book clubs. Once I read the book (READ it – you’ll LOVE it!), I knew I needed to meet the author.

Jennie is an amazingly accessible person. I sent her an email and arranged to meet her in her home town, Seattle, during a quick trip I was making to the West Coast to visit my brother. What a pleasure! Jennie’s a down-to-earth, warm person who clearly wrote what she knew in this book. Jennie knows caregiving.

“When my stepmother was diagnosed with pancreatic cancer, like Ellie, the only thing I really knew how to do for her was cook all her favorite foods… one last time. It was an amazing experience to share her last months with her, and through her grace I learned a lot about both living and dying,” Jennie told me.

The book isn’t just about caregiving, though. It starts on a theme that seems, to Jennie, to be universal to all women.

“As women, we learn that we’re supposed to look a certain way. We get it from the magazines, and from all the media. But all of us love to eat, love to cook, and love to nourish, and those things can be in opposition to each other. In Eating Heaven, I wanted to write a book on how this tears us up inside sometimes.”

The themes of eating, nourishing through food, and body image do, indeed, form much of the book’s broader story. At the heart of the book, though – and at the heart of Jennie’s personal experience, is the theme of caregiving.

“The book came from a deeper place, even, than the experiences I had with my step mom. I had lost other people in my life. As a middle child, it’s in my nature to care for other people. It was important to understand how to do this in a way that makes sense, without it being judgmental, overbearing or other things that aren’t really very helpful – or becoming paralyzed by fear of death. Fear of our own mortality can be paralyzing – it’s frightening.”

Jennie – and Eleanor – find that caregiving turns from being the hardest work ever to the most rewarding work ever.

“Looking at caregiving from my own experience, you start out feeling obligated – you’re the one person who should or could. You dive in: you’re going to be the best caregiver ever. Then you get burned out and it feels like just plain hard work. Then you start to realize that all the effort you’re putting into the caregiving work is resulting in a relationship that changes – blossoms, perhaps - in a new way. You may feel a gratitude for small things, and you realize that what you’ve done really does make a difference. Pretty soon, little tiny moments of recognition that your effort is worth it start appearing. Even better, you feel your heart has grown, and you’re a more rounded, loving, open person as the result. Your life is fuller for the experience.”

In Eating Heaven, Eleanor, much like many family members, is an “accidental caregiver.” It isn’t until Uncle Benny comes home from the hospital and the hospice worker asks Eleanor where she is going to sleep that she realizes she’s now his primary caregiver.

“Caregiving is the ultimate act of giving up yourself in service to someone. I do think that a big part of our life is to be in service to others, but caregiving takes this to a whole new level. Your entire life has to shift. That’s a huge change. We may resist it at first, as Eleanor does, and we may need to take breaks and do what we need to do for ourselves. We DO need to get help, often.

“The hospice worker in Eating Heaven is very much modeled after the hospice worker my step-mom had. She was funny and no-nonsense, and helped us understand what the ‘new normal’ was in our lives. Getting help is imperative. Sometimes you even need someone else to help you figure out how to cope with your own feelings and experiences.”

Jennie is a fan, as well, of finding communities to help you with caregiving emotions and tasks.

“Anytime you can embrace and engage a community around anything in your life, it makes the experience easier. It gives you a place for communication, idea sharing, resources sharing and emotional bonding. Finding someone to cry and laugh with; someone who understands things no one else can understand – that is very much a part of letting yourself or your loved one become a part of a community, whether a facility community or a support community.

Through it all, Jennie has learned that caregiving is a time of practical adjustment.

“Caregiving is like so many other times in our life: having a baby, getting a divorce. These are adjustment times, when things will never again be the way they were before. There’s a new normal now, and it’s just what we do now.”

What I love most about Jennie, though, is her perspective on being with a loved one who is dying.

“Being with someone who is actually dying and who passes can be joyous in an amazing way. Just like Eleanor realizes in the book, that experience is the termination of a life, but it’s also the completion of a cycle. The person has allowed you – wanted you – to be with them, and you’re somehow part of this incredible experience. Yes, there’s pain and loss, but there’s also a sort of release and bliss that’s hard to explain until you’ve been a part of it.

“There’s a certain peace. You’ve been through the hard parts and the sadness. You’ve worked through much of this, and now that they’re gone, you’ve dealt with much of this loss and can now feel peace.”

Eating Heaven is an incredible book, but the real story, for me, is the person behind the book, Jennie Shortridge. She’s one of the pure, strong voices from Caregiver Village.

Press Release: New Website Coming to Support the Family Caregiver

2010-11-02T14:33:00.001-07:00

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.

Redefining retirement

2010-08-26T13:08:00.000-07:00

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.

Personal Care Aides working at povery levels in many states

2010-08-06T16:31:00.000-07:00

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.

Selecting a Care Center

2010-08-04T13:08:00.000-07:00

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.

Rose Villa getting Culture Change Right

2010-07-06T12:51:00.000-07:00

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

Comments

2010-07-06T12:37:00.001-07:00

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

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

2010-06-22T14:50:00.000-07:00

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!

Alzheimer's Disease Epidemic

2010-06-07T15:50:00.000-07:00

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!

Caregiver Training – access and quality make all the difference

2010-06-02T13:12:00.000-07:00

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!

Making a Difference every single day

2010-05-28T16:09:00.000-07:00

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.

ALFA Music Video

Culture Change in Care Today

2010-04-12T12:39:00.000-07:00

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.

Caregivers don’t need to go it alone.

2010-03-12T10:39:00.000-08:00

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!

Caregiving concerns are ultimately personal concerns

2010-03-02T14:13:00.001-08:00

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.

Christmas Treasures

2009-12-21T14:53:00.000-08:00

It's Christmas and we're busy getting ready.

Our tree is decorated and the lights are on. But one of the most important parts of Christmas will be missing this year: family. Oh, most of our family will show up like always - full of laughter, hugs and warmth.

But this year we'll be missing my dad (his third year missing) as well as my husband's mom who died this past summer.

At a holiday party this past weekend I learned of three other friends who lost their moms this past year. We're in the generation that is facing the decline, and ultimate death, of our parents.

The other night I woke up from a sound sleep thinking of something I needed to tell my father right away. It took me a few seconds to come fully awake and realize that I would never again be able to simply pick up the phone and call my dad. His loss, like the loss of my mother-in-law, has left a hole.

Most days that hole is covered and not so raw, but there are moments, like the other morning, when the scab rips off and the pain is fresh and real again.

The new report by AARP finds about 66 million Americans today are helping care for an family member. These individuals – my peers – are facing a holiday filled with stress and worry. It may be hard for them to find the “peace on earth; good will toward men” this Christmas.

The tree may be decorated and the lights strung on the house. But inside, we’ll be facing a new kind of Christmas reality; the reality that life is short and those we have left are much to be treasured.

The true meaning of Christmas

2009-12-08T16:53:00.000-08:00

Lots of families are at a crossroads today.

I just got an email from my niece. She’s a single mom with three young boys; she got laid off from her job last week. She’s struggling to figure out how to make Christmas simply happen for her family this year, let alone make it a merry one.

A colleague is taking a month off, starting next week, to care for a family member at home.

Many people, tired of pounding the pavement looking for elusive jobs, are turning to education to try to get trained in something that offers better job potential – or just helps them keep their dignity until the job market changes.

Whether the issue is work or care – or something else entirely, a juncture into the unknown is where many of us find ourselves.

What do we do now? How do we know the right path to take?

My niece says she’s not eating well and is barely sleeping. The experience of being at a life crossroads is causing her severe stress. She’s probably not alone. Here we are, headed into the merry holiday season, and many, many individuals are sharing my niece’s feelings.

Feelings that life’s sudden uncertainness may bring worse times ahead, not better.

Feelings that you won’t be able to play your role in life – as a mom, a breadwinner, or a caregiver.

Feelings that maybe this Christmas will be a bust rather than the family’s annual highlight.

I don’t have any magical fairy dust to change those feelings of despair to feelings of hope and joy. I wish I could find just the right words to say to my niece, my friends, my colleague.

Sometimes it helps to know that, even at the toughest of life’s crossroads, you are not traveling alone. You’ve got other people cheering you on, offering you love, support and encouragement.

Maybe that’s why so many people of my generation are joining social networking websites like Facebook, reconnecting with friends and family far-removed and nearly forgotten; people who will send you hundreds of birthday wishes or random messages of friendship and support.

Maybe that friendship and support is, after all, the true meaning of Christmas.

A Fair Wage for Caregivers

2009-07-21T11:46:00.000-07:00

The New York Times recently ran an editorial advocating that home care workers be paid in accordance to federal labor laws that cover other employees, including paying at least minimum wage and overtime.

Currently in several states home care workers can be covered under a “companion” exemption and paid less than minimum wage, with no overtime requirements.

One the one hand, I completely support this change. I believe that ALL caregivers should be paid a fair wage. Far too many caregivers, in a variety of care settings, are paid so poorly that they are eligible for food stamps, Medicaid and other benefits that we all end of paying for. In addition, poor pay is a leading cause of turnover and the inability to attract the best and brightest individuals into this field. That hurts all of us.

Let me play devil’s advocate for just a moment, however. Let’s say that my mom needs someone at her home 24 hours a day. She needs assistance to the toilet, and someone available if she should fall during the night hours as well as during the day.

During the daytime while she’s awake, my mom needs a considerable amount of assistance – bathing, dressing, meal preparation and laundry, for example (in this hypothetical situation). At night, she sleeps soundly with rare exceptions, at least 8 hours each night.

With a minimum wage requirement, I’d be forced to pay at least $7.25 per hour for the nighttime person, even if they slept through almost all nights. With the companion provision, I’d might be able to pay a flat rate for nighttime that would allow me to keep my mother at home longer. I’d also be able to have a caregiver, conceivably, work evenings helping my mom get ready for bed, then sleep through the night. The caregiver might be “working” 10 – 12 hours, but actually sleeping 6-7 hours of that time. The change in the law would require overtime pay at a minimum of $10.88 per hour for those extra 2-4 hours each evening.

In the end, the round-the-clock care would cost me at least $175 per day, not including the time I need to cover meals and breaks. That’s over $5,000 per month. According to Genworth Financial, the average monthly rate of assisted living is $3,008 (2008); clearly, that would be the more financially feasible solution.

It’s a challenging dilemma for all of us to consider. I think it’s possible that business interests may well create their own solution. Agencies employing home care workers that treat those workers fairly and pay them well will retain their workers. Their reputation will grow and they’ll experience success.

Conversely, those agencies that choose to cut corners on pay and benefits will see the results in high turnover, resulting in poor services and an even poorer reputation.

Today, home care agencies are expanding at an exponential rate. Communities – and families – typically have more than one choice. If we do our own due diligence as consumers and check out the reputation and turnover rate of an agency before we sign up for services, we may be able to directly affect this process and support those that treat their workers well and fairly.

For those who have no choice – typically those receiving publicly funded services - we may well need to change the law to support those who provide the most basic care for our loved ones in their homes.

Of caregiving and budgets

2009-06-30T15:31:00.000-07:00

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

2009-06-23T15:04:00.000-07:00

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

2009-06-18T16:06:00.000-07:00

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

2009-06-09T12:33:00.000-07:00

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!