Consumers want - and deserve - so much more

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

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

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