Thursday, December 31, 2009

What's your top story of 2009?

It's New Year's Eve and I'm trying to catch up -- on tons of things not just blogging. I seemed to go lights out in November. I woke up in early December, but never seemed to make it back. That really needs to change in 2010.

Today, I'm sorting through all the reviews of the last year 2009 and the last decade the zeros or whatever it's being called. There were some really crummy events that occurred in both time spans. A lot of bad things happened around the world and in our nation. There were plenty of positive stories, but the dark and dangerous stories tend to captivate our attention long-term.

I never have figured that one out. We all claim to want positive news, but its the really crappy news that sticks in our head. "First baby of the new year" is most often overlooked for the "Carjacking on Main Street" headline.

The AP's annual poll came up with several stories for 2009 I can agree with No. 1 -- The economy. Despite trillions of tax dollars, we still hemorrhaged jobs, banks failed and stocks faltered. It seems like the economy is working to right itself (if we haven't shored it up with more bubbles). I'll keep my fingers crossed.

No. 2 is Obama's inauguration. I agree that was a great day, but I think the struggles after that historic day might make for a better top story. I've lost count of all the tasks on his to do list such as save the economy, create jobs, regulate the banking industry, save the auto industry, patch up the health care system, fight terrorists and oh yeah, work out two wars. It makes me get out of breathe just typing all of that up. And, it's not a complete list. There is so much to do.

No. 3 is health care reform. I'm hoping that one works out in 2010. We need it.

After the No. 3 item, I get a little fuzzy with the AP's list. It continues with the auto industry, swine flu, Afghanistan, Michael Jackson's death, Fort Hood Rampage, Edward Kennedy's death and Miracle on the Hudson.

It's all a personal preference, but I think the Fort Hood Rampage and the Miracle on the Hudson should be a lot higher.

What is your top story from 2009 or fromt he decade?

I wish you all a happy and prosperous New Year.

A new year on the horizon

It's New Year's Eve and we're on the edge of a new decade. Looking back -- 2009 was a tough year for healthcare issues. Some form of health reform passed, but still has to be conferenced into a workable bill for the president to sign in 2010.

I haven't read the proposed bills. From the sounds of it, most congressmen haven't done this either. So, I can't tell whether I am in good or bad company on this issue.

I know many people hate the idea of healthcare reform. The debate on the issue has really fallen into a dark pit (to put it nicely). The townhalls on the issue turned into violent shouting matches. My friend Rick sent me a nice commentary piece on the reform topic, which talked about how many of the arguments against past government improvements were being recycled in the 2009 debate.

When my husband Andy tore out the old metal cabinets in our 1940s era kitchen, he discovered a newspaper from 1958. It was apparently the year of the last remodel. The newspaper had an article about health care reform of that day. There was talk about Medicare and the Veterans Administration system. The article shared concerns by physicians and politicians that the proposed changes would created a socialized medical system and would be bad for America. I would share more details, but the newspaper yellowed from decades fell apart.

I'm not sure how the bill will impact us in 2010, but I'm looking forward to finding out. I'm going to keep an open mind about it and hope others will too. I won't be afraid to speak out about problems I have with it, but I also want to give it a chance.

Friday, December 18, 2009

New technology gives voice to Locked-in Syndrome patients

Communication methods for persons with Locked-in Syndrome (LIS) continue to progress. I found this one yesterday on CNN. Scientists have found a new way to use Brain Computer Interface (BCI) technology to help persons with LIS communicate.

It remains experimental, but it's a step in the right direction. A Georgia man, who has been locked in for 10 years, had an electrode implanted in his brain which allows him to turn his thoughts into sounds. Sounds high tech and it really is.

Other BCI technology has been used to allow people with LIS to type their thoughts.

I know they are in the beginning stages, but it's important to help people with LIS. No matter how it happens, the person with LIS is typically completely paralyzed and mute — think Frenchman Jean-Dominique Bauby, who blinked out the memoir The Diving Bell and the Butterfly.

Recently, it was announced that a Belgian man was misdiagnosed as being in a vegetative state when he was in fact LIS. The jubilation was followed by tons of questions. Why not just let this man be happily "unlocked?" Why the questions?

The concern hinged on how he communicated. Bauby, the guy in Georgia and even my late husband Jimmy communicated by blinking their eyes. There are different auditory scanning systems, but it's really easy to understand the LIS person is speaking.

The Belgian man, Rom Houben, creates messages with the help of an assistant who guides his hand along a board. Folks all over the world expressed skepticism over the communication method and outlined scientific studies about how Houben's communication method was in question.

By blinking, it was very clear that Jimmy was in control of his message. He directed his message. The only assistance he had was verbalizing his thought after he spelled it out one letter at a time.

Personally, I hope the skepticism in the Belgian case is unfounded. I want to have the same "happy fuzzy" feeling I had when I first learned of his story. The guy can communicate now. Be happy for him. He has suffered 23 years of a wrong diagnosis.

I'm keeping tabs on both stories, but I'm more interested in the new BCI technology. It's wonderful how science continues to progress and create new ways to improve our lives.

Thursday, December 10, 2009

New study shares impact of caregiving

A new caregiving report tells us what we already knew: Caregiving is a juggling act. The "2009 Caregiving in the U.S.A." study commissioned by the national Alliance for Caregiving was released on Dec. 8. The report was in collaborations with the AARP and funded by MetLife Foundation.

The report found that the average caregiver is a 49-year-old woman. The juggling act occurs every day as these woman face arriving to work late or having to take time off to be a caregiver. "For a fifth of caregivers, the demands were so intense they had to take a leave of absence from work," according to Cynthia Ramnarace's report on the study.

Ramnarace's report on the study highlights some of the statistics and realities of today's caregiver. Barbara McVicker, who is author of Stuck in the Middle and is @barbaramcvicker on Twitter, is also quoted in the report.

With the increasing age of Americans, caregiving issues will only become more of a hot button topic with employees, employers and families. Some people choose to leave the workforce altogether — creating a void in some fields. Others just keep on juggling their responsibilities with the help of family, paid caregivers and health care facilities.

Caregiving is both demanding and rewarding. Whether you are one now or may be on in the future, this new study offers a good starting point for a family conversation. What will you do when a loved one needs a caregiver?

Saturday, October 24, 2009

Hospitals may choose who receives care in swine flu pandemic

An emergency flu plan reported this week, outlined what will happen in Florida -- if there is a flu pandemic.

The Orlando Sentinel's story doesn't hold any punches. Care will be rationed. It will be up to hospitals -- not family members -- to decide who gets treatment and who does not.

I almost missed this story. It never seemed to make the top headline. It wasn't a "most e-mailed" favorite. I had to Google it three different ways to find the original newspaper report. This story isn't really on the radar. I'm surprised, because the health care reform debate still rages.

I am still wondering why. This is pretty dire stuff.

The document, drawn up by a team from across Florida that included Orange
County Health Director Dr. Kevin Sherin, addresses one of the most delicate
issues in medicine: what to do if the number of severely ill people needing
ventilators and other treatment dramatically exceeds what is available.
The goal, the plan says, is to focus care on patients whose lives could be saved and who would be most likely to function better if they were given whatever resources
were available. It says those decisions are not to be made based on patients'
perceived social worth or social role, but the plan calls for different rules
for some populations.

The fact that a state health board is considering such measures, shows how serious the swine flu is. It also points to a weakness in our system -- we may not have enough medical equipment to help those in need.

While I don't hear a lot of chatter on the report right now, I'm sure people will be commenting later. I immediately thought about my late husband Jimmy. His breathing was compromised and he had to use a tracheotomy to help him breathe. If I read the news article right, he probably would have been on the list to be refused treatment. Thankfully, we never were put in that situation.

During this swine flu season, I worry about the families who may face a situation like this "plan" outlined in Florida. I pray it won't come to this rationing of care, but without the proper equipment -- it sounds like it could be a reality.

Monday, October 5, 2009

Healthcare reform equals good economy

As a layman, I know health care reform is good for one's health. If people are able to visit the doctor knowing they are covered financially, they are more likely to seek care.

Now, President Obama said it's good for the economy. He made the statements in his Saturday radio and Internet address. The Washington Times as a report here.

I'm no economist, so I don't understand all he intricacies of this. I do know that health care coverage often is a key factor in how people make decisions. How many people say, "I work for the insurance." How many more people say, "I provide the insurance coverage for our family."

People often take jobs based solely on the insurance coverage. People often avoid going to the doctor, because they know one medical visit without coverage can doom them with a life of pre-existing conditions noted on health insurance applications.

As unemployment skyrockets, people are looking at ways to go into business for themselves. A huge roadblock is health insurance.

I've had to get a personal policy before. You have to fill out tons of paperwork and show the paper trail of coverage. (Note: When you leave a job, those certificates of coverage are very important). The cost isn't the best. The coverage is adequate. My personal experience is fairly benign, because I'm in good health. A person with on-going medical conditions are in a pickle.

The president says that health care reform could stimulate the economy, because people would be able to begin small business ventures. These businesses would create jobs and pay salaries and taxes. (Well, the recent report that a large percentage of Americans don't pay taxes is a separate story).

I understand the naysayers clearly. We have a huge unemployment rate. Millions of real people are out of work and can't seem to find work. How will health care reform help the economy?

I say it's a non-traditional route, needs to be done anyway and why not give it a try.

I know probably not the most sound reasoning, but you know I'm tired of hearing terrible stories. You know the ones where someone has insurance and they can't get service, because the company figures out a way to not pay for the service or change the copay. When people express outrage (or the media gets involved), suddenly the patient's treatment is covered or at minimum affordable. It all sounds fishy - like that scary R-word politicians are throwing around - rationing.

I want to see reform in my lifetime. There are millions of people who need access to medical care. So, for just a brief spell, I will dream of a world where health care reform equals a good economy.

Book rattles and settles me

I recently searched for the book The Girl in the Orange Dress by Margot Starbuck at a bookstore. I couldn't find it. Disappointed, but knowing there are alternative methods I searched online. It arrived in my mailbox along with my city tax bill.

After a day and a half (there were a few interruptions like work and sleep), I finished the book. Starbuck shared her story of adoption, relationship, faith and her unwavering smile. The smile was sort of the pasted on kind. She tried to give the appearance that everything was OK. She really did a marvelous job of holding things together by her own account. The reality is that she had a lot of issues about her relationships with her growing number of parents - those who chose her and those who didn't.

Starbuck's search for faith and "a father who does not fail" challenged me as a reader, because throughout her search she is surrounded by a Christian community - college, friends, churches, seminary and faith-based programs.

To be immersed in faith (and church) and to still have these issues, rattled me. Her honesty about how she struggled and dealt with the issues, settled me.

(Initially, I thought the information about my purchase of the book seemed silly here. After doing a search of today's news about the new FTC rules about reviews (it's up to you whether you deem this one or not) -- it's good to point out that I bought the book from my personal piggy bank.)

Now, off to something completely different ... The Guernsey Literary and Potato Peel Pie Society. (Dear FTC - I borrowed this one from a friend).

Thursday, October 1, 2009

Where did customer service go?

My husband and I recently purchased a remodeled house. It was built around 1930. So it's reaching eight decades of service. Cosmetically it's a great house, but there are a few "bone" issues we want to fix.

Enter into my life contractors, bidders and workers. And, a few headaches.

I lamented Wednesday about an 8 a.m. appointment that was late. It turns out the company schedules workers for a two-hour window. When I inquired about the delay, the clerk immediately put me in my place. "Oh, we schedule from 8 to 10 a.m. And, then they call you before they arrive."

"I didn't know that. We discussed they would be here at 8 a.m."

"It doesn't work that way," she said and rattled off their policy again explaining that I clearly had no room to complain, because that is their policy.

Some people get angry in traffic. I do not. Some people get angry in the grocery store. I do not. Some people get angry about customer service. Bingo! That's me.

I complained again to the clerk. I didn't care how many times she explained the policy to me in this moment, because she had not explained the policy to me when the appointment was made. I understood her point clearly. She didn't get my point.

"OK, so we just didn't communicate very well," I snapped.

"Do you need me to cancel the appointment?" the clerk asked.

Ah, the reality check. She had all the power. I could either wait or cancel. I waited.

When the gentleman arrived to give me an estimate, I explained my agitated state after the phone call. You know what he did? He explained their policy about the two-hour appointment system, too. He said the calls are recorded, so he could listen to it to verify his company's statements to me.

I laughed to myself. Will they call me back to tell me I'm wrong? This company schooled me twice Wednesday in their policy. A policy that I still don't recall being told about during my initial call.

Instead of lecturing me, you know what I wanted to hear as a customer? "Sorry for the confusion."

Monday, September 28, 2009

This time it should be put to rest

Bad people do bad things. Good people do too.

It's important to remember this as the European community seems to be up in arms about the arrest of filmmaker Roman Polanski in Switzerland. Polanski has been a fugitive for decades after he pleaded guilty to having unlawful intercourse with a minor. He fled before his sentencing. He's been a very public "person on the run."

It's shocking what he is accused of doing decades ago. His victim, now a married woman with children of her own, continues to be assaulted in this case. The court system seemed to bungle the prosecution and has been unsuccessful at closing the case.

There are different stories about why Polanski fled. Was he fearful of a media-hungry judge? Did he just not want to serve out his time? He made a choice. He fled the country to France and continued to make films.

His victim asked earlier this year to have the case thrown out. She said in a CNN.com article:
"Every time this case is brought to the attention of the Court, great focus is made of me, my family, my mother and others. That attention is not pleasant to experience and is not worth maintaining over some irrelevant legal nicety, the continuation of the case."
I get what she's saying. She's the only one who makes sense to me today. Filmmakers at the Zurich Film Festival are lamenting his arrest and talking about his great contributions to the film industry. Others are raving about what a talented artist he is. A French official said Polanski was of "great general esteem." Others made is sound like his drugging and raping of a 13-year-old child was some benign indiscretion.

I'm shocked by their descriptions. He behaved criminally and pleaded guilty to it. This wouldn't be an issue today, if he had stayed in the United States to be sentenced. Our justice system is not perfect. There are plenty of examples in Texas to show it doesn't always work. But, we are supposed to play by the rules.

The case and all its flaws are out in the open. The director and all his flaws are out in the open. Surely, this time, this case can be put to rest. It would be in the best interest of everyone.

Thursday, September 24, 2009

A look at the way we die

I thought much of the health care reform debate had fallen off the radar until I came across this Tweet from @mike_gamble: "Extraordinary Article! - The Way We Die Now."

I clicked The New York Times link and immediately writer Timothy Egan had me hooked. He found a perfect story to share how we die in this current system. An 88-year-old woman, the mother of a governor and physician, had to make a choice. Die at the hospital or die at home?

She chose her home and her family over the hospital complex. Medicare didn't help with this choice. Her son noted that while Medicare would pay for the tests and treatments in the hospital it wouldn't pay for the $18 an hour non-hospice worker to help his mother during her last four months of life.

Egan's piece also takes an interesting look at an issue that people don't want to talk about. He wrote: "More sensible voices have since joined the debate, asking how we reform a system that lavishes most of its benefits on a cure for the 'disease' of aging."

Another nugget from Egan's piece: About $67 billion — nearly a third of the money spent by Medicare — goes to patients in the last two years of life. The need to spend less money at the end of life “is the elephant in the room,” Evan Thomas wrote in “The Case for Killing Granny,” the cover story in last week’s Newsweek. “Everyone sees it but no one wants to talk about it.”

This summer, the debate became supercharged with rhetoric as the threat of "death panels" was tossed around like a tennis ball. From my personal experience as a caregiver, I have read many stories about government, hospital and insurance intervention on choices that should be left up to the individual. Those stories were from more than four years ago. So, this issue isn't new.

I'm all about living, but we as a nation really need to take a look at how we die.

Wednesday, September 23, 2009

100 days

On Sunday, I was following a line of Tweets which included a note about a fast approaching deadline. There are 100 days left in the year. So, what are you going to do?

I certainly did not pull out a calendar and count. I opened a fresh Word document on my computer and began typing.

What do I want to do during the final 100 days of 2009?

I've written down 15 items so far. They all deal with organization, work, goals and more work.

Some are simple like keeping my e-mail inbox under control. While I'm out and about, I have a nasty habit of checking Twitter. If I find an interesting Tweet with a link, I send an e-mail of it to myself. The result: My inbox is filled with about 20 e-mails of Tweets just crying out for me to check them out.

Other items are more challenging like trying a new method to finish up my memoir. I've hit a brick wall in recent weeks. I need to carve out a good chunk of time for that to work.

I have the time to complete the items on my list. I read enough blogs to know that people, who have less time than me are more productive. I kept my list small. I wanted it to be manageable.

I'm writing this post as a reminder that I have a list. I won't bore anyone with it here, but I'll print out a copy to monitor my progress.

Here's to 100 days and my list.

Wednesday, September 16, 2009

Did you hear the Grey Poupon tale?


I was punked Monday.

"So, Andy do you know a G. Poupo in Northfield, Illinois?" I called him from the post office parking lot. No.

So I opened the mysterious package and it contained a jar of Grey Poupon mustard and a small blue Christmas tree with a gold star on top. A strand of blue chord adorned with individual packets of Grey Poupon wrapped itself around the tree. Part of a comics page wrapped a jar of mustard. All identifying newspaper date lines were removed.

"OK. We've been punked by the Jensens." I told Andy after discovering the Grey Poupon. I'm mumbling about the G. Poupo, "How did I miss that!"

"Where was it mailed from?" Andy stayed focused. While the return address of Northfield, Illinois means nothing more than the company's address, the USPS label says Appleton, Wisconsin.

"Do you have relatives there?"

"No," he said, but he suspects his parents did it.

Barb and Howard (Andy's parents) disavow any responsibility. Whether we believe them or not is another story. After all, Barb tells us the tree is likely one they received years ago, but who knows. "We sent that to Gary and Joyce."

It all makes perfect sense when you think about it. Cousin Carrie created the trees (yes, there are multiple Grey Poupon jewels floating about) and sent them to relatives. The recipients then sent them to other Jensens.

It's all very simple really. In the early 1990s, Andy's Uncle George and Aunt Mae with grand kids and Uncle Carl and Aunt Lois with Andy's parents were driving along. They became lost. Carl pulled up alongside George's car and one of the grand kid's said, "Pardon me, do you have any Grey Poupon?"

I heard the laughter and the long tale about the Grey Poupon the day before Andy and I married. They kept that family secret until the last possible minute. The story involved lots of Grey Poupon jars mysteriously shipped around the country to aunts, uncles, cousins and grandchildren.

One of the better stories revolved around a fast note, which mistakenly addressed Aunt Carl and Uncle Lois. So, what do Carl and Lois do? They corrected the mistake by cross dressing. Carl became an Aunt and Lois became an Uncle.

I have pictures to prove all this, because the Jensen clan, which included eight siblings, created us a wonderful scrapbook for our wedding. Each sibling created a page of pictures and information about his or her family. As one of the newbies in the family, I can now put a face with a name.

Before we left family after our wedding, we received a jar of Grey Poupon. Andy's parents gave it to us. I warned them, "I loved mustard so much in the second grade I wanted to change my name to mustard." I feared my addition to the family could single-handedly extinguish the Grey Poupon legend. We ate part of the jar on the honeymoon and I used the rest of it in a recipe from that Grey Poupon booklet Lois gave us. Yummy. Delicious.

I fell victim to temptation to get into the Grey Poupon capers during a Thanksgiving trip to spend with the Jensen clan. We bought Grey Poupon in Oklahoma and quietly slipped it in bags of Texas treats.

Now, the Jensens have struck again. The conspiracy theories are floating.

Plan A is always to eat it, but this jar is out of date. That's one of the warnings I received after the wedding. "Some jars have been floating around for years and years."

Off to Plan B. What is Plan B? I can't tell you that. Let's just say a Jensen relative will be getting a blue and yellow, delicious treat.

Thursday, September 3, 2009

ASU researcher addresses caregiver syndrome

There are lessons for caregivers in here. Take a moment to read this.

Leaders need to lead on health care debate

When I was in the throws of chaos from my late husband's medical condition, I reached out to strangers on the Internet.

I found Mary Koch and John Andrist. They were older than Jimmy and me, but very similar. A newspaper background. A life-changing stroke which left John with Locked-in Syndrome. John and Jimmy had the same condition, but were living under different circumstances. John was cared for at home while Jimmy lived in nursing homes.

I relied on Mary and John during those years — an e-mail here and a note there. Each idea or encouragement helped me and Jimmy as we struggled through a health care maze, which often felt more like a war than a journey.

Jimmy died at 37. I called Mary that night. I couldn't share this news with her through an e-mail. John died at 75 almost two years later.

I met Mary on May 30, 2008, when I married Andy. She had kept in touch with me through the years and traveled to Custer, South Dakota. She wrote about our wedding. It's something Andy and I cherish.

Mary, who shared her caregiving journey through a weekly newspaper column, began writing "A Widow Bit" following John's death. You can find it here.

On Sept. 2, I received her latest installment "Confessions of a former reformer." I hope she will post it on her site soon.

The Institute of Medicine claims that each year more than 18,000 people in the U.S. die because they had no health insurance — that's higher than our annual homicide rate, Mary says.

Another point she makes:
I gave up reading murder mysteries in favor of books on health care policy issues. They’re scarier. Most recent: Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer by Shannon Brownlee.
I’m going back to murder mysteries. It’s clear “whodunit” to American health care reform. At the beginning of the year, a large majority of Americans claimed they wanted fundamental changes. Now folks are fleeing the reform camp faster than a pot grower scampering from his field when the government helicopter arrives.
The problem? Too many of us have pretty good insurance and care. Expensive, yes. But we’re willing to suck it up – or let our employer or Medicare suck it up. Reform means change, and people look forward to change with about as much delight as a root canal.
I am tired of all the muck around the debate. I'm tired of all the crazy ideas being floated. If people are concerned about saving lives, we need to quit blaming the Mainstream Media, Congress and those people, who are yelling and foaming at the mouth at these town hall forums.

We need to think about those 18,000, who apparently die each year due to a lack of health insurance. How do we solve that problem?

I believe our leaders just need to step up and lead on this issue. Sometimes, leaders have to make difficult decisions without 100 percent support of the people. It happens in local government all the time.

A local leader has a vision for a new courthouse or administrative building to improve services. Taxpayers, who walk into the old buildings once a year, don't see the need for the new buildings or the tax increase to pay for it. I can think of a handful of county and city projects that were approved in communities with strong opposition. Were the projects needed? Yes. Did the opposition get over it? Eventually.

There will always be someone, who will disagree or say it won't work or say it shouldn't be done. If leaders listen to those people only, no new buildings or parks would ever be built.

I think there is enough ingenuity in this country to get this done — despite the chaos surrounding this issue. Our leadership needs to do what it is supposed to do — lead the way on this issue.

Thursday, August 27, 2009

Are you taking care of yourself?

Caregivers are doing a great job of taking care of their loved ones. They are healthy, happy and often at home. But, do caregivers ever take a moment to consider themselves?

I came across this article via a Tweet this week. It begins with one key fact:  "One quarter of adult Americans are presently caring for an aging parent or relative."  Forty-five percent of those people are providing care for their spouse.

Several years ago, I was a caregiver trying to balance managing care for my husband Jimmy in a nursing home setting and our lives. I was exhausted and I was not providing the direct, round-the-clock care. When the health care professionals did their jobs, it was a little easier. When there were hiccups, chaos ensued. 

I won't rehash the article, you can find it at this link. Two key points from a Home Instead Senior Care survey shows 31 percent of family caregivers admit they'd like more help and 25 percent resent other members of the family who don't help out more. 

It's difficult to ask for help. We've all been raised in this can-do society. We tend to be judged by how brave we are in the face of tragedy. At the time, I did the best job that I could. Looking back, however, I'll admit I said, "I'm fine" during situations that were far from it. 

I never liked asking for help, but when it came to Jimmy I developed the ability to do it and accept the help. When my co-workers and the community pulled together to raise money for Jimmy, I accepted the help. Jimmy needed specialized computers to communicate and an air mattress that insurance would not pay for. 

When nursing home staff commented on his nice mattress, I would do my best Price as Right showcase, model impersonation and say, "That's about 250 barbecue sandwiches." All of those sandwiches purchased at a benefit for Jimmy were made with love. People wanted to help him and I'm proud they did. 

And, that mattress kept his skin free of bedsores for several years. 

One thing I found out very early on in my journey is that I was not alone. Of course, Jimmy was there with me, but I wasn't alone in being a caregiver. There were others, who were just like me. Perhaps their loved one was older, but we were all in the same boat together. 

A health crisis is a powerful equalizer. A stroke can strike a rich family as easily and quickly as it can strike a poor family. Family dynamics are often the same whether you have money or you don't. 

When I first began this blog several months ago, I tried to explain the name "Get Your Oxygen First." It's important for caregivers to take care of themselves. 

A few ways you can "Get Your Oxygen First" include:
  • Ask a friend to stay with your spouse or parent, so you can take a nap or recharge.
  • Get a sibling to come over 30 minutes early, so you can take a break.
  • Steal a few moments for yourself to do something like sit on the porch or read a chapter of a book.
  • Remember most people really mean it when they offer to help. Maybe you don't need his or her help right now, but ask them later when you do need it.
Do something for yourself — even if it's unconventional. In my case, Jimmy often resented my efforts to revitalize. I had to charge through his angry in order to recharge. At the end of the day, he benefited from my efforts to take care of myself. He was happier and so was I. 

What are you doing to take care of yourself?

Monday, August 24, 2009

You will miss it when it's gone

We often take things for granted. You name it — family, jobs, transportation, electricity, newspapers and the U.S. Postal Service — and we assume it will be around forever.

Mail has always been a personal obsession. I'll own up to it. I love opening up the mailbox and finding a surprise — a letter from a friend, a card from my mom or a special offer. Junk mail sometimes excites me. It typically doesn't motivate me to spend money, but I'll take a look. 

Today, most of the mail goes directly into the recycle bin. I have no reason to apply for a new credit card. I don't need a new vehicle. 

I receive a few bills in the mail, but the majority of them have been converted to paperless alerts via e-mail. The bills are also paid via an electronic method. I rarely spend a 44-cent stamp to mail a payment. 

I love the post office system. I think it's great that I can send a card to my nieces or nephew (my apologies to my brother Tommy for not sending a card in time of his birthday). I drop it in a box in Del Rio, Texas and it arrives at their home in Georgia. 

For 44-cents, it's a cheap method to communicate. 

It's not a cheap system to operate. I was reading on Sunday how the postal service wants to drop it's Saturday delivery. Oddly, people responded it wasn't a big deal. While mail is not my priority on Saturdays, I always check it. Or find myself on Sunday checking the box. 

Some cities stopped Saturday deliveries in May and June 1947, according to postal history on the USPS Web site. An attempt to cancel Saturday deliveries in 1957 were axed. "On one Saturday —April 13, 1957 — there was no mail delivery. Public outcries prompted President Dwight D. Eisenhower to sign a bill more fully funding the Post Office Department three days later, and the next Saturday service resumed."

The problem today in 2009 is that there are so many things that need to be fixed from health care, Social Security, etc. to curb government spending that I'm not sure public outcry will be enough to reinstate some cuts. We may just have to suck it up and deal with the changes. I know easier said than done. 

The economy has already changed the private marketplace. The Sunday edition of The Atlanta Journal-Constitution isn't delivered all across the state of Georgia like it used to be. Why? It's the economy. Newspapers are making cuts in their delivery of expensive paper products. You can find all the news online, so there is no need to use vehicles, gas and manpower to truck a print edition all over the state. 

It's a loss. A new generation will grow up reading the newspaper at a desk or on a laptop rather than creating a black and white mess all around the living room floor. The online method is a new, more cost effective delivery method. So, I guess we need to get used to it. 

I doubt I'll get used to no Saturday deliveries whether it's a surprise note from a friend or a magazine. I'll miss it (if it happens), but I know my paperless statements have helped contribute to the changes. Businesses and government leaders have to make decisions — tough decisions — to get going in this economy. 

Friday, August 21, 2009

Plastic bags need to go

This morning, I read that Mexico City has banned the use of plastic bags. It's a wonderful idea. I wish more communities would follow their lead.

A CNN report on the ban said 90 percent of bags used in the United States are not recycled. I believe it. If I get a plastic bag, I recycle it by using it for a small trash can liner. Then it goes into the landfill with the trash.

The city of San Francisco apparently banned the plastic bags in 2007. Los Angeles may impose a ban, if the state doesn't enact a 25-cent per bag fee. That's always a good way to change a person's habit — charge them more money for the service.

I have always liked the idea of recycling, but have not always found it to be practical. Rural communities don't always have the resources or the facilities to recycle materials. In one community, I helped initiate a limited recycling project. In another, I just sorted and dropped my recyclables in the labeled bins at the community trash site. I cringed in my North Carolina hometown, because officials always said they sorted the recyclables out of the trash. I'm still shaking my head over that one. 

Here, in Del Rio, the city has a great recycling center. The hours are reasonable to allow people to drop off materials (Saturday hours), the staff is very friendly and they accept an assortment of materials. My husband and I generate one bag of trash each week after we remove all the items to be recycled.

When I first arrived in town, there was some mention the city might ban plastic bags here. That idea hasn't taken hold yet, but I promise the plastic tumbleweeds continue to have a hold on our community. 

In Texas, there really should be a movement to ban the bags. If one gets loose, it can blow for miles and inevitably gets stuck atop the shrub or in a fence. I know it's not scientific, but my opinion is the bags remain there forever.

I take reusable bags into the grocery  and discount stores along with my shopping list. I've been doing it for more than a year now. I feel guilty, if I forget to take them into the store. It's easy. You just grab a few bags and carry them in with your purse. I think everyone should try it. You might like it.

Monday, August 17, 2009

Four minutes to an answer

People often ask me, "What's the point?"

Depending on what social networking site they are talking about, I give them an answer. 

About blogs? "I used to work at newspapers, so blogs give me a forum like a weekly newspaper column." I haven't made it a regular habit, but I enjoy it when I get around to it. I have more ideas than blogs posted. 

About Facebook? "It's a fun way to connect with people." I recently joined Facebook and it's been a way to talk with people from high school and college that I haven't spoke to in years. Granted, in this society of over sharing, I may know too much about their sleeping patterns or personal musings and they probably know more than they want to about me. I didn't think I would enjoy it. Now, that I'm there. I like it. 

About Twitter? "What is that?" is the most asked question. I try to explain the magic of compacting thoughts into 140-characters. My efforts to Tweet impacted my writing at a recent retreat. I laughed to myself as everyone expanded well beyond the instructor's two to three sentence instruction. My opening was compact and within the parameters. I chalked my brevity up to Twitter. 

I like the idea that I can post a snippet of a conversation and try to sum it all up quickly and in a few sentence. I don't have to ponder a 500-word post for a full-sized blog. I type. I edit. I post. I Tweet. With Twitter, I have the satisfaction of knowing I have completed a micro-blog without compiling a "must do" list of blog ideas. I Tweet and it's published.

I told a physical therapist who pondered the uselessness of Twittering the Conan O'Brien joke about social media. I can't recall it now, but the punch line was great. The new media of the future will be "YouTwitFace." Nice, huh?

I've discussed Twitter in more than 140-characters, but I can't stop myself. I tell the guy how I use Twitter to follow authors, writers and people I don't know, but who seem interesting. I follow caregivers, who have provided helpful information on family matters. I post links to promote my blog posts. I use Twitter as my own personal newsfeed.

Had anyone told me a decade ago, I would be commenting about the weather before going for a walk, I would suspect he or she had a screw lose. This information is of no value to newspapers or TV stations, but someone in my hometown may find it valuable that it's 98 in my neighborhood at 8 p.m. while their neighborhood hoovers around 100. The Weather Channel isn't going to find this news earth shattering, but in Del Rio, Texas — the difference could create another kitchen table conversation. 

My dad was asking, "What is the point of it all?" the other day as we were driving back into Ellijay, Ga. My mother was being transported from a hospital in  Atlanta to Ellijay. I was in the passenger seat of his car, passing the time with the iPhone. 

I looked up and saw tents surrounding the new Chic Fil A. "What's that?" I asked, but he didn't know. 

I posted a note on Facebook. Within four minutes, a friend provided an answer about the phenomena of the tents. In the old days, I would have to wait for the weekly newspaper to be published to find an answer to my question. 

"This is the point," I said flipping my phone screen toward my dad. I read the answer. I think even he was impressed the information was so readily available. 

As a news junkie, I like the fact that within minutes I can get information from a variety of sources. A person still must consider the source, but it's satisfying to get simple information in a matter of minutes from other observers.

First impression left me squirrelly

My mom recently had neck and back surgery. She survived the nine-hour long surgery, despite her best efforts to conjure up every negative scenario.

Her first comments following the removal of the ventilator:  "I made it didn't I." Mom really isn't a "glass half full" kind of gal. She was before the surgery — even if it was just for show. 

She didn't appear too brave when on day five post-surgery she was readying for an ambulance transport about 100 miles away from the Atlanta-based hospital to a swing bed in her hometown of Ellijay. The move offered rehabilitation before she returned home. It was something discussed prior to the surgery. 

While some other family members grimaced when we mentioned the need for rehab before going home, our family was pleased with the situation. Mom's ability to move had deteriorated seriously over the last year. After the surgery, she wasn't trying to reach her pre-surgery self. She was trying to regain her movement from more than six months ago.

Mom moved beautifully following her surgery. While she suffered from tremendous pain, it amazed us to see how she could picked up her knees as she walked slowly with a walker. Prior to the surgery, she had to drag her numb legs.

With some movement under her physical therapy belt, the hospital was ready for Mom to move. An ambulance from the Atlanta area arrived to transport her. The young woman, who was driving my mom, really laughed and joked a lot. It did not make my mother at ease. Instead, her nervous nature kicked into overdrive. 

As my mom asked the young woman, if she knew how to get to Ellijay. The EMT (or paramedic— not certain of her classification) recalled how she was able to navigate the windy mountain roads. Mom's eyes appeared to get as large as saucers. When I alerted the driver that Mom was anxious and didn't like jokes, the driver seemed to get it. "I'll check with the nurse about getting you something for that."

Mom took her Valium and quizzed the young woman about her experience. "I've been doing this for a long time — three years." Her declaration of expertise didn't appease Mom. 

"Oh, don't worry, we have nanny cams. We won't be stopping at the McDonald's drive thru window," the one driving continued to joke. 

As Dad and I entered the elevator with Mom, I talked to the woman who would be riding with Mom. "Mom doesn't handle jokes so well," I told her. "She's anxious about the drive."

The female driver said, "Don't worry. That will kick in." She was referring to the Valium. Then, she proceeded to tell us about how she was on Zoloft to knock off the edge. "It makes me less squirrelly." Mentally, my mouth dropped to the first floor before the elevator doors opened. It didn't seem like an inappropriate thing to tell your patient. It was inappropriate.

If I had serious doubts about the abilities of the two young women, I wouldn't have allowed my mother to travel with them to Ellijay. I asked Dad to pass the ambulance, because it made me nervous to travel that close to the ambulance. I prayed Mom would be OK. 

Mom made it fine to Ellijay. She reported a good ride and said the woman riding in the back of the ambulance with her stayed with her until she moved to another spot to complete paperwork. The only oversight was the attempt to drop Mom off at the nursing home and not the hospital. The nursing home (without any empty beds) quickly directed the ladies to the correct place — the hospital. 

The two women didn't leave an overall good impression. As a family member, I was concerned about their professionalism. It wasn't their age. It was their attitude. Despite being warned they were transporting an anxious patient, they didn't stop their joking behavior. With age, they will hopefully learn how to deal with this better.

Tuesday, August 4, 2009

A plethora of options

My mom's having neck and back surgery on Friday. I'm the "out of the loop" child since I'm more than 1,200 miles away from the family. I'll arrive in Georgia on Thursday afternoon and will hopefully get to see Mom before the surgeon does. Otherwise, she'll know we're in the same state, city and time zone.

Trying to help out, I thought about creating a site for Mom on the www.caringbridge.com Web site. I had heard about it. I found people with Locked-in Syndrome on the site. It's a great way to create a free site to allow friends and well wishers to check in on your progress during and after a surgery.

I was excited about the site until I noticed that on the right-hand side of the screen is a place to donate to Caring Bridge. I have never noticed this while looking for updates for other people, but it stopped me in my tracks while creating my mom's site.

My problem with it? Well, I feared people would think that my family is seeking donations for my mom. I worried (a trait directly passed down from my mother) that people might mistakenly make a donation to Caring Bridge thinking it was for my mother. I understand why Caring Bridge seeks donations. It is a fabulous site.

I created the site and passed it along to my Mom and Dad for their perusal. I added a note about the donation function. They also did not like this.

I couldn't figure out how to remove the donation material, so I deactivated the site for my mom.

I wanted to use the Caring Bridge site, because it seemed like an easy way to keep everyone updated. Now, we'll regroup using phones, e-mail and Facebook to update friends and family about Mom's progress. We fortunately have a variety of ways to keep in touch with people. We can do all of this from our iPhones, too.

I will continue to use the Caring Bridge to keep up with people. I think it's a wonderful site. It just wasn't right for my family this time.

How do you stay in touch with people after a surgery or illness? Do you know of any sites I should check out?

Hit the streets, not the courthouse

Perplexing? Mythed?

Just a couple of words that I can repeat to describe my reaction when I read this story on CNN.com on Aug. 3. A recent grade is suing her alma mater for tuition plus $2,000 for stress. 

She blames the college's Office of Career Advancement for not helping her find a job. She has the credentials after all — including a business administration degree in information technology and a 2.7 GPA.

I wonder if the graduate has been paying attention to the economy over the last year of her education. If it took her four years to get a degree, she probably enrolled at a good time. But, the sands of time have passed while she was studying and things changed. 

I feel bad for this young woman and for all the other people I know who can't find jobs in their chosen field. I know people who lost jobs due to state government cuts. I know people who lost newspaper jobs. I know people who recently graduated and can't find an entry-level job. 

I hope this recent graduate is not indicative of those leaving the buffer-zone of colleges these days. Students have to realize that it's a bit tough out there. When I graduated from college in 1993, I began full-time employment at a newspaper within a week. Sure, it wasn't The New York Times, but The Chatsworth Times gave me plenty of meaty work experience. 

Today's graduates are also facing a high volume of competition. When companies post job openings, they are overwhelmed (sometimes by the thousands) with people eager to fill the job. There are also people with impeccable credentials out there on the prowl for job openings. While my community journalism background is solid, I might have a difficult time getting a job at CNN right now. There are thousands of journalists with broader experience than me searching for a job.

I personally think students are often taking on too many student loans to get an education. Maybe we can't have it all — an education, the parties, no job and a new car. I'm a bit biased, because I attended a public university (the University of Georgia), lived in the dorms (before they were suites with AC) and worked in my college town and in my hometown. 

Since my college days, I have witnessed an uneasy trend where my newspaper colleagues would have tens of thousands of dollars in student loans. During my last job as an editor, I had difficulties finding applicants who could afford to take an entry level reporter's position. I heard, "By the time, I pay my student loans, rent, car and buy clothes I won't be able to eat." I wanted to yell, "Cut out the clothes." 

"Good luck with that." What more could I say?

To anyone looking for work, I say, "It may take a while to get a job. And, you may have to take one you don't like right not. You may just have to take one."

To the alumna suing her alma mater, I say, "You may have some luck finding a job, if you hit the streets and not the courthouse."

Sunday, July 26, 2009

A world of information at your fingertips

Caregivers can find a world of information on the Internet. The volume can be overwhelming. For example, I punched in brain stem stroke in a Google search. The result: 803,000 hits for brain stem and stroke.

Wait. I thought the Internet was supposed to make it easier to find information. It does, but you have to know some of the tools to use. Whether you love or hate Google, shouldn't factor into the equation. You need to figure out how to use Google to your advantage.

The classic Google search on http://www.google.com/ is helpful. Most days you can get the information you need with a few clicks from your keyboard. Take the search a step further with a Google alert. Go to Google's homepage and sign up for an alert. The alerts are listed under the "more" section under the "even more" section.

You don't need a Google GMail account to set up an alert. Google will kindly send you an alert to any e-mail address. You set the alert up to search whatever phrase or words you need searched. For example, I set up a search for locked-in syndrome. On a daily basis, I get a digest of stories published on the Internet through blogs, newspapers and medical research groups about locked-in syndrome.

I'll warn you the search keys in on the words, not the context. I may be looking for stories about people who are locked-in their bodies -- mute and paralyzed -- while the search engine is looking for the words "locked-in." I've been pleased with how the alerts work for me in finding people, research and new innovations to help those with locked-in syndrome.

Caregivers have enough work to do, so I think it's a good idea to let Google alerts handle some of the heavy lifting. Sign up for an alert and see how it works for you.

How will you or how do you use Google Alerts?

Wednesday, July 15, 2009

It doesn't always make sense

Life doesn't always make sense, but I booked an airline ticket to get there anyway.

My mother is having multiple back surgeries in August. Within moments of finding out the date, I checked airline tickets. I waffled in my head, "Should I go or should I not?"

I consulted with my twin sister Tracy. The angst revolved mostly around the fact that I know I can't do anything if I go. I'll be waiting in the waiting room with everyone else. Looking at my schedule, there was a window of opportunity to go. Ticket prices weren't outrageous. My husband was supportive. He even offered to get out of a business trip. It was my choice.

While my sister and sister-in-law decided I should consider coming later "when the work begins," I decided I needed to go. My mom has always been a pessimist. She doesn't talk about her surgery and situation in a hopeful way. It's not a guilt trip either.

Some people are wired to be "glass half empty" folks. My mom is one of them. While being the distant child at 1,450-miles away, I am confident that the procedure is a good choice for my mother. Her physician believes she is a good candidate. My mother's health has deteriorated so much that she really has no other viable options left. She tried everything to prevent surgery. In the end, the alternatives didn't work.

To be honest, in my own care giving experience was that I didn't need people to help in those early hours and days. I needed help later. The same is true for my mom, who will return home following her surgery with the help of my father and any the minimum resources available through Medicare. My sister and brother each have spouses, children and work schedules to manage.

I feel helpless being so far away and not being able to help when they need it. They are building a wheelchair ramp at my parents' home this weekend. While my dad doesn't seem to think it will be that big of a deal following the surgery, I have my doubts. Being a full-time caregiver is a difficult job. I know my sister and sister-in-law will be there on the front lines to help.

So, what do I do? For now, I booked an airline ticket with a cancellation insurance policy - in case the hospital or doctor has to change the date. Then, I'll be there with my family for a week. We'll see what happens and what I need to do after that.

Is this your first summer here?

It's been toasty here in Del Rio. Like many places in Texas, the weather has been in the triple digit range for several weeks. The weather is haywire when you get giddy at a high of 98.

After about 10 days of the heat wave, I vowed to quit talking about the weather. I discovered not talking about the weather is very similar to how one loses weight. It requires a lifestyle change. It's not a fad. It takes effort to change the way to live and breathe the weather.

I have tried several different strategies to ignore the weather:
1. Don't focus on the numbers. With the Texas winds, walking outside feels like an opening the oven door anyway. Does it really matter if it is 98 or 105?

2. Smile Politely. Someone else may make small talk about the weather, but I don't have to talk about it. I can use a strategy I learned years ago when taking customer complaints. Just listen. Don't talk.

3. Change the subject. After someone begins talking about the weather, I'll redirect the conversation to something completely different. "Did you see those flowers in bloom?" I'll warn you discussions about plants may open up the "I've got allergies" can of worms. Of course, the great thing is that you are not talking about the weather.

While I haven't been 100 percent successful, I have discovered new conversations growing from my aversion to weather-related topics. My success rate has been more like 70 percent. The problem is that I don't mind striking up a conversation with someone and one of my worn out jokes involves the heat.

Someone inevitably asks me is this my first summer in Del Rio. It is not, but it is the hottest in my two-summer existence in Texas. "What do you think about the heat?"

"It's great," I say. "To, me Hell would be a cold place."

Sunday, July 12, 2009

Health care reform can be as simple as a light switch

Health care reform doesn't have to be complicated. There are stories about taxes, choices and government-run health care plans. 


I try to keep up with all the issues raised around the debate. It's easy to get lost in the multiple viewpoints. President Obama issued a July 2 statement on the Senate's Health Care Reform Bill called the HELP Committee.

"The HELP Committee legislation reflects many of the principles I’ve laid out, such as reforms that will prohibit insurance companies from refusing coverage for people with pre-existing conditions and the concept of  insurance exchanges where individuals can find affordable coverage if they lose their jobs, move or get sick," Obama said. 

"Such a marketplace would allow families and some small businesses the benefit of one-stop-shopping for their health care coverage and enable them to compare price and quality and pick the plan that best suits their needs."

Since the president's statement, there has been more wrangling over how to best provide health care. There are polls saying people support the plan. Other polls suggest people remain concerned about the cost. 

Politicians are all over the map on the issue. There are options to tax health insurance plans and options to provide Americans with cash. 

I don't think I'm alone when I say that I don't understand it all. 

When my late husband Jimmy had his catastrophic stroke at age 34, we had health insurance. We did not have long term care insurance. So, at the end of the day, we were at the mercy of the system. We pieced together care through veterans benefits (which were begrudgingly provided) and eventually Medicaid. 

Jimmy was mute and completely paralyzed. He communicated with eye blinks. Jimmy was a Republican through and through. We didn't always see eye-to-eye on political matters. As a journalist, my votes were cast for individual candidates — not parties. 

When he fussed about some liberal program, I reminded him that he benefited from social programs to provide care for veterans and the disabled and elderly. "Look at the care," he spelled out. He never wavered on this point. He didn't like the medical care he received.

Jimmy and I heard a lot about money during those early years following his stroke. We learned  about overpriced cotton swabs and band aids. He required 24/7 care, medications and 100 percent assistance, so we understood he was expensive. However, this reality never dulled the sting of hearing an admissions clerk reject him from a nursing home close to family or a VA counselor say, "No one wants him. He's too expensive."

While searching through notes recently, I came across something Jimmy spelled about the health care system. I had just visited the Georgia governor to tell him about Jimmy and about nursing homes. 

Jimmy wrote this on February 23, 2003:
"Health care and the nursing home system is already in ICU. Any more cuts will probably cause it to flat line. I don't think that most people really understand the problems people face unless you are one of the people that need the system."

He said he didn't worry about the system until he was living in it. He had complaints over big issues and ones that seemed minor to others, but were a big deal to him.

"Like my overhead light. Most people don't think anything about turning on a light. I think that I have made it clear that the light bothers my eyes. The way my bed sits it seems as if I am staring directly into the sun. I try to close my eyes, but that doesn't work. And since I can move my head a little, I try to turn away but this doesn't work either. So, I'm stuck."

Health care reform seems to be in a similar situation. Stuck. 

At the core of this reform, I hope they really look at the patients — the people. During a town hall meeting recently, a woman spoke to the president about her impossible situation. She hit a brick wall at every turn. Her story seemed unnecessarily complicated. I know rules and regulations are in place, but sometimes they create unnecessary roadblocks. 

Health care reform cannot solely be about the dollars and cents. It has to make sense, too. Politicians and health care providers need to help patients by  considering options that help patients. It might be something as simple as turning off the lights when needed.

Thursday, July 2, 2009

A will is an important document

It will make you uncomfortable. It might even create a difficult conversation with your loved ones. But, it is worth your time. I'm talking about creating one of the most important documents in your life — a will.

Wills are important because they allow you to map out what you want done with your financial house when you leave this earth. For parents, it also is a vehicle to care for underage children and appoint guardians. 

My late husband Jimmy avoided the topic prior to a procedure which resulted in a catastrophic brain stem stroke. Once his health stabilized a bit, I discovered I couldn't even sell a lawn mower at our house. My hands were tied on several financial issues, because we did not properly plan before his medical procedure. 

Jimmy eventually was able to designate me as his power of attorney. With that important piece of paper, I was able to sort through our financial house. It took a while, but I eventually pushed my way through that dark, long tunnel. 

As a caregiver, I recognized my responsibility to plan for Jimmy. It was a happy day when my will was drawn up. I knew Jimmy would be cared for in my absence. 

I know it's a touchy subject. Some people just don't want to deal with the issue of their eventual death. For me, a will shows you love and respect your family. 

Today, there are multiple online resources for wills and a multitude of local attorneys willing to draft a will. It's easy and can give you peace of mind. I believe creating a will is one of the greatest ways to show your family that you love them. 

Wednesday, July 1, 2009

Read the fine print

Do you have health insurance? Do you know whether or not it is sufficient to cover your needs?
Every day Americans are playing Russian roulette with their health and financial well being, because they are uninsured or underinsured. The New York Times’ Reed Abelson wrote a story that sadly illustrates this point.

A couple had hospital care coverage but it wasn’t enough to cover all the procedures and fees associated with the husband’s care. The fine print detailed how much of the care received in the hospital was not covered. Both the insured and the hospital say they checked on the services provided, but at the end of the day the insurance provider did not cover most services.

How many of you read your insurance policies? I’ve been guilty of not doing this.

When you are healthy, the finer detail of whether or not the policy covers nursing home coverage easily escapes you. It wasn’t until Jimmy had his stroke at age 33 that those details were important. I didn’t recognize the subtle differences between skilled nursing homes and rehabilitation centers.  The number of days the policy would pay for didn’t register with me, until we were counting days.
We were fortunate. While we didn’t have long-term care coverage, we were able to utilize all the benefits allowed in our insurance plan. The company I worked for was supportive of the treatment, which made it 110 percent easier.

Jimmy could have been eligible for a Medicaid-funded nursing home, but none would accept him. Most demurred saying they didn’t accept patients with a tracheotomy tube. Others told us Jimmy’s care would be more expensive than the Medicaid reimbursement. No nursing home really wanted a young patient, who could potentially drain its bottom line for years.

Our only option was for Jimmy to go to a state nursing home for combat veterans. They assured us they were there to serve veterans like Jimmy, who was active duty in the Gulf War. The care was shaky I expected it to be fatal for Jimmy, but he survived. Especially after the nursing home hired private nurses and CNAs to care for Jimmy.

The number of near-death experiences that unfolded at the veterans’ home is another story. His time there allowed us to get our financial house in order, in hopes that Jimmy could stay at a Medicaid funded nursing home.

I saved my credit, because I needed it. For Jimmy, we lost all concern about his credit score. It was a number that held no value as compared to blood oxygen level, temperature and body weight.

The couple in the New York Times’ piece ended up filing bankruptcy, because their unpaid medical bills approached $200,000. They are a perfect example of folks, who don’t have enough insurance coverage.  They thought their insurance coverage covered all the details. It didn’t.

Now it’s up to lawmakers to create the fine print of the “new and improved” health care system. Families with and without health care are waiting to read the details.

Tuesday, June 30, 2009

I want to forget it, but he won't go away

I want to forget all about South Carolina Gov. Mark Sanford, but I can't. He just keeps talking. He should be called Mark "Too Much Info" Sanford. The guy just keeps churning out the details of his affair with an Argentinean woman.

Today, he's sharing the number of times he saw his mistress. When he initially announced his unfaithfulness to his wife, he inadvertently provided too low of a number. I say inadvertently, because someone who is confessing surely wouldn't lie on purpose. Would they?

I know we're a society of over sharing (I'm blogging. I speak from personal experience), but his over shares make me feel sorry for his family. The governor initially announced he made a mistake by being unfaithful to his wife and they are working to repair their marriage. 

Maybe the governor feels he has to provide details of his affair to save his own political skin, but I disagree. Others before him, lay out the basic facts and move on. He is not doing that. 

In today's installment of As the Palmetto State Turns, Sanford shares intimate details about the meetings with his mistress. He details how one encounter involved coffee while others involved sex. The best one involved an in-person meeting to break up. The mistress, Sanford and a spiritual advisor met in New York for church and dinner. 

I was shocked when he ventured into uncharted territory for a politician caught with his pants down. He explains the relationship with the mistress was more than a mere affair. He called his story with the mistress "a love story."

During an interview at his Statehouse office on Tuesday, Sanford said he's trying to fall back in love with his wife, according to The Associated Press.

Another jewel from the AP story:  He said that during the encounters with other women he let his guard down with some physical contact but didn't have sex with another woman. He didn't really go into detail (thank goodness), but did mention that some events began with a dance. "If you're a married guy at the end of the day you shouldn't be dancing with somebody else," he told the AP. 

These recent stories make me feel sorry for Mrs. Sanford and his children. His statements make it sound like he is in love with the mistress and not his wife. If he's trying to do the right thing, maybe he should be honest about his feelings. Could his spiritual counselor step up on this front and help him out? And, maybe he should just stay busy working on state matters and on his marriage.

I think Sanford should resign over this whole mess. It has nothing to do with sex, unless he had sex while he was AWOL from South Carolina. Governors are supposed to lead, not vanish. He left the state without a leader and left his staff blowing and lying in the wind. 

I get that some people don't want him to leave office, because they don't like the lieutenant governor. That's politics. 

What I don't get is how Sanford believes he is being a better person by suffering as a fallen, broken hearted governor in the public eye. While it may make him feel better to confess to the AP, it seems like he is hurting his family by these interviews. Maybe he should save the candor for the state investigations that is under way about his travel expenses? Or, he can save it for a "fall from grace" book.

Sunday, June 21, 2009

Twitter offers a variety of voices, resources for caregivers

I have been busy in recent weeks, especially on Twitter. While I spend a lot of time laughing at things I find on Twitter, I have also found very useful resources. There are a multitude of resources for caregivers on the micro-blogging site.

While the tweets are only 140-characters long, many typically include a shortened link to a Web site or a news story. I follow a variety of people. My key groups are caregivers, writers andRVers. There are also some people who are just plain funny — so I enjoy following their tweets. — or live in my neck of the woods.

Many people like to criticize bloggers. I enjoy the political blogs, but thankfully that's not the only source of commentary out there. 

For caregivers, there are many bloggers, who are regular people. They are trying to juggle caring for a parent or spouse with work and family. You may feel alone, but the network of blogs, Web sites and folks on Twitter may make you feel a little less lonely. 

Some of the folks I follow include:

@sandwiched is in Pennsylvania. Forget the drama of the Gosselins from Jon & Kate Plus 8. With no glare from TV cameras, this Pennsylvania mom shares her weight watching issues as well as being sandwiched between a mother and young children. Her blog is here.

@CaregiversJourn. Valerie H. Johnson is in Georgia She offers information to other family caregivers. She often offers helpful tweets with links to a variety of Web sites.  Her Web site linked to her Twitter is here.

@ElderCareRN. Shelley Webb is in Idaho. She's a registered nurse, writer and caregiver for her father. She offers a lot of educational tweets. Her Web site is here.

@LovingGrand. Loving Grand's tweets are from the USA. Some people keep more anonymity than others, but it doesn't devalue the loving information she provides as a granddaughter. There are tweets from a variety of sources as well as links to her blog about her journey here. 

@HealthDame. Maloyre Branca's Web site is here. She offers a variety of resources and stories about health matters. She is a great resource for both caregivers and patients.

@TXElderCare is by Cheryl Culbertson in Texas. The Web site is here. The site offers an assortment of information for elders in Texas.

I follow more folks on Twitter that deal with health care and care giving issues. These are just a handful that I find useful and inspirational. I really enjoy the personal accounts of how people deal with day-to-day issues. 

Like any medium, you need to determine for yourself whether the person/site offers you any value. 

Twitter is a good place to find people, who can help you find solutions to a current crisis. You can also find people to share a laugh with during good times, too.

What would you do in Iran?

What are you doing? Twitter asks me this every time I log in. I have an empty box ready for my 140-character response. I’ve been wondering a lot lately, if I would have the courage of the people taking to the streets in Iran.

Several people I knew were certain the world would explode, if Barack Obama were elected. I kept reassuring them it would not. I laughed to myself as I looked around the Cracker Barrel restaurant in Albuquerque, New Mexico on November 5, 2008. Everything was normal. Andy and I sat there among college-aged students and families. The world had not been shaken.

It’s different in other parts of the world. In Iran, they did what we did. They went to vote, but the results are in question. Forget the “hanging chads” in Florida. Little pieces of paper can’t compare to what the people of Iran are facing.

Some Iranians feel like the election was rigged. Government leaders deny it, but the level of mistrust is high. The idea that “every vote counts” doesn’t hold the same meaning there as it does here in the United States.

Americans have always believed in protests (and revolutions), it’s in our DNA. We rarely anticipate the government taking action to shed the blood of protesters. It is possible for peaceful protests to become violent at the hands of government police. Ask the Civil Rights protesters?

In Iran, peaceful protests are taking place in defiance of government leaders. They are now deemed “illegal.” One Web site reports Iranian police and militia are clashing with “terrorist groups."

The stories from Iran are heartbreaking and downright scary. And, it’s difficult to tell the truthful stories from the fake ones. The Iranian government took steps to stop the flow of information, but it continues to trickle out through Internet sites, cell phones and Twitter.
The more I read, the more I wonder if I would have the courage to do what the protesters are doing right now. The protesters are taking to the streets not knowing whether they will return home or not.

I’ve had the courage to step up to the plate in the past. I’ve done it as a journalist and as an advocate for a family member, but I’ve also done it in the Land of the Free and Home of the Brave.

I don’t understand all the political parties in Iran or what happened on Election Day.  I don’t think as a nation we can meddle in everyone’s political process.  But, I do understand human suffering and I wish it would stop. I admire the protester's courage for taking to the streets.  I hope I would do the same under similar circumstances here.
What would you do?

After I wrote this, I checked CNN. It's Monday in Iran and the state-run media reports that the Guardian Council rejects the claims of voter irregularity. Of course, they do acknowledge that the number of ballots cast in dozens of cities exceeded the number of eligible voters in those areas. 

Saturday, June 20, 2009

Why did it take two days to watch The Proposal?

Instead of working on my book proposal on Friday, I decided I should watch The Proposal at the local theater. It’s an advantage of being “underemployed.” During summer months and school holidays, I can watch new releases for less than I can rent them at Blockbusters.
The movie was great, until it happened. The screen went blank and the emergency lights flooded white light throughout the once darkened theater. On a normal day, it’s a bad thing when a room goes dark. In a movie theater, it’s a bad thing when the lights come on abruptly.
I mistakenly assumed there was a problem with the film. Maybe the projector (or whatever they use these days) broke? Maybe someone accidentally hit a button that made the movie stop?
A person made an announcement from the back of the theater. Stay seated and they’ll let us know what’s going on. I was busy texting my husband to let him know I would return home later from my mid-day movie than expected.
The next announcement reported the entire mall was out of power. We were given a rain check. There was no point waiting around for the situation to improve.
In addition to the mall, several traffic lights on the highway were out. Drivers were discombobulated by the police officers’ attempts to keep traffic flowing.
At home, the phone was out. I discovered the problem while trying to reach a doctor’s office, because my husband’s malady hasn’t improved. Thanks to my cell phone I reached a doctor’s office. The office, which is located behind the mall, offered no help. “Our power is out. I can’t access our appointment system,” the clerk told me. He was apologetic. Monday would be the earliest I could get medical help for my sweetie.
I returned to the theater today. The movie was worth the second trip, but I wondered why it took me two days to watch a 108-minute comedy. I checked the Del Rio News Herald for a story about the outage.  
What happened to create all the power outages? A wallet fell onto the floor of a driver’s car. According the newspaper, the driver (the one, who is supposed to be watching the road) decided to retrieve a wallet from the floor of his car. He drove into a guy wire, snapping a utility pole.  Thankfully, there were no reports of injury.  The small grass fires set off by sparks were quickly extinguished.
The driver was careless. His one action to grab that wallet (while driving) affected thousands of people. The impact on others was probably benign like it was in my case: missing a movie’s ending.
It’s a good reminder to me and other drivers that we all need to be more vigilant about our driving. Cars are not toys, but can be deadly. We need to simply drive while in our cars. We also need to wait until the car is stopped to pick up our fallen wallets.