Grandma: the later years

Shortly after Grandpa died, we realized he’d been covering for Grandma and her increasing forgetfulness.

I remember helping Grandma search for her house keys just days after Grandpa passed away. We turned the house upside down and, as the hunt lengthened without success, Grandma became increasingly agitated. “Grandpa, help me find those keys!” I implored. And, when I looked on the dining room table for the hundredth time, there were Grandma’s keys, perched atop a stack of papers.

Mark and I married 11 months after Grandpa’s death (his last wish had been to dance at our wedding), and we moved into the downstairs apartment of Grandma’s two-family house. The rent was low, and we had access to half the basement, a two-car garage, and the double-lot yard. But, more importantly, Grandma knew we were there.

Eight years later, we moved to North Carolina seeking a more affordable area to buy our own home and start our family. Grandma managed to stay in her house a few years longer, with the help of an in-home nurse during the day. Eventually, though, Mom and Aunt Annette made the difficult decision to move her to a nursing home.

Several months ago, Grandma started choking on her food. The doctors said there were two options – insert a feeding tube, or not -- and Mom and Aunt Annette decided to do the latter.

Just days before Mom told me, my eight-year-old son, R, (whose best friend had just lost his grandfather) said he wanted to meet Grandma. Unfortunately, I hadn’t seen her in more than 10 years, but since she no longer recognized anyone, I reasoned she was not aware of that. Then, when Mom called, I decided to return to New Jersey sooner rather than later.

We flew up for a weekend in August and stayed with my brother, Anthony, and his family. Aunt Annette met us at the nursing home and, for the first time ever, all five of Grandma’s great-grandchildren circled her wheelchair, trying to keep her attention before she nodded off to sleep again.

Peaceful. That’s how Grandma looks. The nervous eye twitch and anxious facial expression that had slipped into place after Grandpa’s death are gone. The only indication that she has anything but happy thoughts is her tendency to jerk her clenched fist up and down, as if she is stabbing at something in her lap; that and an intermittent grinding of what’s left of her teeth that creates a friction-on-rubber sound -- the only sound she makes anymore.

Her skin is smooth and soft; her face almost devoid of wrinkles. For some unknown reason, I asked Aunt Annette’s permission to touch Grandma. She encouraged me, noting that, aside from family visits, the only human touch Grandma receives now is from strangers who care for and feed her.

It was probably my imagination, but Grandma’s clenched-fist jerk seemed to slow as I stroked her arms and hands. While my daughter, J, organized some of the other nursing home residents for bingo, I stood by Grandma’s side, caressing her blue-veined hands and remembering how she had firmly held my much smaller one when we crossed the street on a long-ago spring day.

“So, Easter is the day after tomorrow?” I asked.

“No, the day after, the day after tomorrow,” Grandma explained.

“Right, the day after tomorrow.”

“The day after the day after tomorrow.”

“Yes, the day after tomorrow.”

“Okay, today is Holy Thursday, tomorrow is Good Friday. The day after tomorrow is Holy Saturday and the day after that is Easter Sunday.”

“Oh…”

Grandma’s hands never learned to drive, but could de-bone a chicken like nobody’s business. They were strong hands that helped her become a forelady at Sherman’s sewing factory on Central Avenue in Orange, N.J., and scrubbed my face so hard I thought it would come off with the dirt. And her hands were kind as they pressed money into mine when she thought my mother wasn’t looking, and slipped our dog, Maggie, table scraps on the sly.

The good news (thanks to a barium swallow test) is Grandma doesn’t need a feeding tube; just a softer, more liquefied diet. So, her 99th birthday on Thanksgiving may not be her last.

Happy Birthday, Grandma!

What would Grandpa think?

Twenty-six years ago today, Grandpa died.

It started in Summer 1983. He was losing his balance and coordination. Diagnosis: a brain tumor that was successfully removed. He went for radiation treatment as an outpatient, but when he started chemo, the stress of caring for him at home proved too much for Grandma, so he returned to Orange Memorial Hospital.

Orange Memorial. The place where Essex County’s ailing elderly went and -- more often than not -- stayed until they died.

The place was a well-oiled Medicare milking machine; a sterile environment in which to languish while Nature took its course – and Medicare paid the bills.

Such was Grandpa’s fate. A few days before he died, the doctors noticed he had jaundice. The reason: liver cancer.

Based on the limited knowledge I have about cancer and brain tumors, I know that primary brain tumors are extremely rare. In all likelihood, Grandpa’s brain tumor was secondary to his liver cancer. Could he have survived if his doctors had been more thorough? Probably not. But, I think his last days may have been very different – and the final cost to Medicare, greatly reduced.

Although I try not to think about the hopeless pain of Grandpa’s last hospital stay (there are, thankfully, so many other wonderful memories of him that I cherish), I can’t help wondering what he would say about our nation’s current health care debate.

Politically, he leaned to the right – like the rest of my family (I’m the political “black sheep”), but I remember him diffusing more than one argument at the Sunday dinner table by quoting, “I may not agree with what you have to say, but I’ll defend to the death your right to say it!”

In recent weeks, I’ve been cautiously optimistic that a spark of compromise is in the works in our nation’s Capitol with regard to health care. And, if he had lived to see it, I think Grandpa would be open to the possibility of such change. As I reflect on Grandpa’s memory today, I’m hopeful that we’ll all do what we can to fan that spark into a flame.

Do you love your health care?

Yesterday, I was listening to the Brad and Britt show while I was out running errands. They’re an entertaining duo, kind of a more reasonable and subdued version of Hannity & Colmes – before Colmes got the boot. They do their homework and offer intelligent commentary on the issues of the day. Lately, they’ve been talking a lot about health care.

When I tuned in, they were taking phone calls, asking people “do you love your health care?” And, a surprising (to me, at least) number of people were answering “yes.”

The one call I was able to hear in its entirety (it's annoying, getting caught up in an interesting discussion on the car radio, only to wonder what I’ll miss because I’ve reached my destination), was from a father whose disabled daughter had passed away last year. Now, I realize everyone grieves in their own way, but this guy sounded too matter-of-fact (or, as Mark noted, “chipper”), given his situation. Brad and Britt sounded dubious, too, hesitantly offering their condolences.

But I digress.

The father said he loved his health care (via United Healthcare). As his daughter’s health had declined, UH had covered everything, except one ambulance ride – and that was because it had been coded incorrectly. He went on to knowledgeably describe how you can’t get all your health care services up front. You need to pace yourself. In other words, know how to work the system.

And that’s when I had my (albeit belated) A-Ha! moment.

Americans are complacent about our health care system. It’s become second nature to us to “work the system,” and if we don’t know how, our doctors guide us through it.

As noted in a previous post, it shouldn’t be this way. It’s time to turn this country around, and get us on course with the rest of the industrialized world – those countries who make it a priority to offer everyone the quality health care they need, when they need it, for an affordable price.

MY health care saga

I embraced Emily’s story because I could relate to it on multiple levels: 1) I also have scoliosis; 2) I totally “got” her mom, Suzette, and her will to fight for the best medical care for her child, and 3) like most Americans, I have my own health care horror stories.

Most recently, my husband, Mark, was recruited for a great job opportunity. He wasn’t even looking, but the timing was right. He felt stagnant where he was. The new job was a terrific career move with a good company, and it even paid a little more. And yet we agonized over whether to accept. Why? Health care.

The new position is a contract job through an agency that offers group health insurance to its employees. But how did this plan compare to what we already had? What were the deductibles and co-pays? How much would it cost us each month?

We couldn’t get these answers until Mark actually “accepted” the job and was entered into their system (Mark told them up front that if the health care didn’t pan out, he’d have to walk away). Only then did we receive access to the details we needed to make a final decision.

Once the decision was made, you know what comes next -- a one-month waiting period (October) until the health insurance kicks in.

Since Mark has an uncanny sense of knowing when to leave a company (his resume is a list of places that have either gone out of business or drastically downsized), I’ve become somewhat of an expert at this dance. I rescheduled dentist and doctor visits to occur after Nov. 1. When my son, R, did need to go to the doctor’s office last week, I told them we’re temporarily without insurance and they usually knock off the administrative costs of the visit to reduce our bill. We’ve asked for free samples of medication and, barring that, have received coupons to refill our prescriptions.

And then there’s the switch from Blue Cross / Blue Shield to Aetna. Ironically, the plan with Aetna will be less expensive, cutting our co-pays by more than 50 percent. But, are all our doctors in-network?

Yes, except for the rheumatologist I was planning to see for my hip. So now I need to postpone that until I can research who IS in-network and check to see if my internist has ever heard of them.

We also learned, right before our old insurance ran out on Sept. 30, that Mark has a torn meniscus in his right knee. He needs surgery, but we’re postponing it until we’re covered again in November. Hopefully, he’ll be able to get by with the help of a cortisone shot or two.

Sadly, nothing I’ve said here is out-of-the-ordinary. I’m sure you’ve encountered many, if not all, of these scenarios yourself at one time or another. But it shouldn’t BE this way!

Getting back to basics

Not much new to report on the Emily front. I’m still trying to generate some more media attention, but the growing influence of social media and the internet is having a decidedly negative impact on traditional media outlets. Space and air time are limited, but I will keep plugging.
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Back to basics
And now, if you'll indulge me, I'd like to return to the primary topic and purpose for "Maria Talks Back" -- my memoir, Growing Pains.

When you’re self-employed, it’s the nature of the beast. Work ebbs and flows. But when I’m busy it’s a challenge to carve out time each week to market myself to ensure that the work will keep flowing.

Instead, I tend to prioritize things that have a deadline – which may be why I haven’t worked on the latest revision of my memoir in awhile.

It’s frustrating. I’m just pages away from finishing this latest edit. And when I'm finally done, I'll start all over again, at the beginning.

Since starting this blog, my voice has changed – for the better (or at least I think so). And I want that same viewpoint reflected in Growing Pains. I suppose that’s part of the process as a writer. To grow and learn and change.

Ironically, I look forward to starting over. Despite my medical challenges, the people and places I’m writing about -- those who shared in my struggle -- are infinitely dear to me and I enjoy “visiting” them through my writing.

Therefore, I’ve declared my office a Do it Now! zone.

Wish me luck!

Using my powers for good

When I started writing about Suzette and Emily last month, I never dreamed that my efforts would nudge an insurance giant like United Healthcare to do the right thing.

I need to work on raising my expectations.

Indeed, Suzette recently emailed me with the wonderful news that UH finally paid the thrice-rejected claim for her daughter Emily’s Boston Brace, covering 60 percent of the cost ($1,369.23) – in-network benefits to an out-of-network provider due to “medical necessity.”

If you know anything about brace treatment for scoliosis in young adolescents, you know that Emily, as she grows, will need subsequent Boston Braces. However, Cindy, the UH rep who confirmed UH’s action on the family’s case, told Suzette to contact her directly if she has any problem with future claims.

Suzette credits the WPTF radio interview she and Emily did on Aug. 19, the result of a media pitch I made to the station’s news director, for reversing UH's previous decisions. After months of frustration, dealing with UH’s bureaucracy, Suzette wrote in her email to me: “My gut feeling is…(i)f not for the WPTF 680 AM radio interview, NOTHING would have prompted this company to ‘re-review’ this claim. NOTHING.”

If she’s right, I’m thrilled I could help, but Suzette deserves a large chunk of the credit. A fellow “mama bear,” she is one of the most tenacious individuals I’ve ever met. You only need to read (and believe) the quote at the end of her emails to understand why: “There comes a time when you have to decide whether to fish or cut bait.....And I take fishing to the EXTREME!!!!!”

Bottom line: if Suzette didn’t have a paper trail a mile long, documenting her relentless efforts to make a case for Emily’s doctor-prescribed brace treatment to UH, this story would have never sprouted the wings that it did.

It’s unfortunate that ANYONE needs to go to such lengths to be heard when they’re just trying to ensure quality health care for their family. That’s why Suzette and I have agreed to continue sharing her family’s story in the hope that other families may avoid what theirs has had to endure.

Suzette and Emily: on the radio

Much has happened since my post, “Scoliosis, Miss North Carolina and Emily.” After writing it, I wanted to do more for Emily and her family by getting the word out beyond the confines of this blog. So, I made several media calls and, a few days later, Suzette and Emily were “live” on Raleigh’s radio waves, talking about United Healthcare and its repeated denial of the claims for Emily’s Boston Brace.

Before the scheduled appearance, Suzette and I made certain that our collective Facebook friends knew about it, and WPTF contacted UH. The station offered UH’s representative an opportunity to be on the phone during the show to comment, but the company declined, citing privacy issues related to HIPAA. Suzette volunteered to fax her permission, waiving HIPAA restrictions, but UH maintained they could not comment.

During the show, Suzette did most of the talking, and she rocked! In a calm, articulate voice, she explained the circumstances that had brought the family to this point. You can hear the entire interview here: http://www.wptf.com/goout.asp?u=http://billlumaye.blogspot.com/.

Afterwards, the UH rep did a 180 on the privacy issue. According to Suzette, he emailed WPTF some “thoughts” about Emily’s case, without obtaining consent from Suzette beforehand. Basically, it was a PR-laced regurgitation of UH’s position: that the brace was not eligible for insurance reimbursement because Suzette went to an out-of-network provider to obtain it. He also reiterated that UH had referred Suzette to two in-network providers (Suzette said they only referred her to one), but failed to acknowledge that these INPs were not capable of producing the custom-made Boston Brace that Emily’s orthopedist had prescribed.

Consequently, Suzette was “angry as a fire ant!” She sent an email to the UH rep, correcting his misinformation and berating him for his company’s response – or lack thereof – up until now. To date, she has not heard anything further.

On a lighter note…
I’m happy to report that Emily has gone back to school, stylin’ and profilin’ in her new wardrobe from Peebles. Katherine (Miss North Carolina, pictured right with Emily) joined the family at the company’s Lillington, N.C. store to watch Emily model her new rags, and even let Emily wear her crown (see below).

Peebles donated a $500 gift card to Emily so she could purchase clothing that would fit over her new Boston Brace. Having first-hand knowledge of that dilemma myself, I’m thrilled for her.

I’m hoping to get some additional media coverage for Suzette and Emily soon. In the meantime, if you have any suggestions for this family, please let me know.