Thursday, December 31, 2009

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.

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.

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 17, 2009

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?

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.

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.

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.

Tuesday, April 14, 2009

Five of the many who deserve "notice"

While care giving feels like a lonely task, the truth is I was never really alone. Jimmy lived in nursing homes and hospitals following his brain stem stroke. It was a choice I reluctantly embraced about two weeks after the stroke. 

"It will be a 25-hour, eight-day a week job," Dr. Gallagher told me, when he shared the news that he felt the paralysis would be permanent. Jimmy was 33 and I was 30, when we received this news. 

The decision to choose a nursing home is a difficult one. People seem to panic when they say, "I had to put my father in a nursing home." I don't think put is the right word. Jimmy was cared for in a nursing home. It was the only choice that seemed reasonable for us.

One night I sat in the Erlanger ICU waiting room in Chattanooga, Tennessee wondering, "Now how do I work 45 to 50 hours a week, take care of Jimmy 24/7 and keep a roof over our heads?" The numbers weren't adding up — even when you threw in determination, faith, love and promises of help from family and strangers. 

The complications that arose from that decision are another story including multiple examples of poor care to an eviction notice Jimmy received from a state nursing home for combat veterans. He was accepted, because he was a Gulf War Veteran. But the complexity (being mute and completely paralyzed) and the high price tag for his care (100 percent dependent), apparently nullified any promises of free, health care for a combat veteran.

Today, I was thinking about the people who helped Jimmy and me. I wanted to participate in “The Noticer Project,” which is a worldwide movement to “notice” the five most influential people in your life.

Andy Andrews wrote in a letter about the project, “My new book, The Noticer, is rooted in the belief that our time on this earth is a gift to be used wisely and one of the best ways to use that gift is by noticing those who have made an impact on our lives.”

So, I decided I should notice five people/organizations, who helped us. And, take a leap of faith that the one million and one other people, who helped us, will understand the list was limited to five and won’t get their feelings hurt.

1 — My twin sister Tracy S. Williams. She was pregnant when Jimmy had his stroke. She sat beside me in the ICU waiting room with her swollen feet propped up on the vinyl recliners. My niece Rosa was born prematurely in an emergency C-section. Ironically, as Tracy learned how to care for her new daughter, I too was learning how to dress, change, care and feed through a tube my 33-year-old husband.

2 — Mom and Dad Stenberg. My parents were there at every turn. They collected mail, fed dogs, visited and did whatever was necessary to help their children.

3 — J.W. Chastain. Jimmy’s first cousin and a great friend. J.W. would visit Jimmy at all of his various locations whether it was two miles or 200 miles away. J.W. was “Mr. Fixit” when it came to the wheelchair headrest and any other mechanical problem that needed attention. J.W. could advocate cordially or raise the roof, if Jimmy needed something. J.W. was there from the first day of Jimmy’s medical crisis to his last. No one could ask for a better friend.

4 — Gilmer Nursing Home Staff in Ellijay, Georgia. The staff was exceptional.  They went above and beyond their job descriptions to make Jimmy feel loved and ensure he was well-taken care of here. Jimmy knew what it was like to be mistreated, so the care provided here meant the world to him and all of his family.

5 — Shepherd Center in Atlanta, Georgia. I know it’s a catastrophic care hospital, but the lessons we learned here served us throughout the four years Jimmy lived following his stroke. We learned how to communicate with each other and health care staff. We learned how to advocate for Jimmy’s care. We learned the foundation of his care here. These lessons were crucial to our survival each day — as patient and caregiver — in hospitals and nursing homes.

Obviously, there were many more, who helped Jimmy and me.  Whether it was Patti or the gang at The News Observer; family or friends; or the many strangers, who stopped by to say hello or to play Scrabble; please know that you helped. You were appreciated (and noticed) then and now.

 

Friday, March 27, 2009

Communication: One letter at a time

Jimmy had plenty to say after his debilitating stroke, but there was no way to say it. As time passed, he was able to share many thoughts despite the loss of his voice. He improvised with the help of speech therapists and well-intentioned friends and strangers.

Codes are often used to send secret messages. Prisoners of war in Vietnam used a language of knocks to communicate with one other from their cells.

"It sounds like that," Roy Hamby, the manager for the Georgia Department of Veterans Service office, rapped out a few knocks with his knuckles on his wooden desk. I was in his office to discuss services available to Jimmy, a Gulf War veteran. "That's how they talked."
"He can't move," I said grateful of the helpful information, but tried to explain again that Jimmy was completely paralyzed, "but I'll check into that."

While everyone I met offered helpful solutions – from e-mail and instant message chat abbreviations to Morse code – Jimmy was working directly with professionals at Shepherd Center in Atlanta, Georgia.

Jimmy didn't need a code to break into a safe or convey some top secret message. He needed one to share his words and himself with the world. A debilitating brain stem stroke robbed him of his ability to speak and move.

While thankful his brain was spared, it was frustrating. "How do I make them understand?" he would spell to me after he described how the nurses guessed what they should do. By not asking for Jimmy's input, the medical staff was just hoping they figured out the right course of action. It was a recipe for failure and totally unnecessary, because Jimmy was right there. They could ask Jimmy, but they just needed patience to wait for his response.

Jimmy was unable to communicate for weeks after the stroke. One day, a blink opened up a world in which he had once walked and talked. He blinked twice for yes and once for no. The blinks eventually morphed into a look up for yes and a look down for no.

At Shepherd, the therapists immediately began experimenting with a couple of low-tech communication methods like a Before M method. A person recited the alphabet slowly from A to M. Jimmy blinked when you reached the letter he wanted to say. If it was not a letter Before M, the person recited letters from N to Z.

Asking yes or no questions was a simple way to communicate that became complicated quickly. "Jimmy do you want to get in your wheelchair or stay in bed?" He would stare blankly at the questioner, because he couldn't answer with a yes or no. On a good day, the aide realized the mistake and broke the question into two parts. She would pause to give Jimmy time to answer the first one before moving onto the second one.

Jimmy’s blurred and double vision made it impossible to use a communication board, which included the alphabet in squares. I could point at letters all day, but Jimmy of couldn’t see what I was pointing at. The same happened when we tried a computer program through Neural Signals (http://www.neuralsignals.com/). Dr. Phil Kennedy was a gem. It is an excellent program and has been very successful for others. Jimmy's vision problems hampered his use of the system.

Another method involved a Dynavox. It essentially gathered dust, because it was cumbersome to use. It probably could have been better used in a home setting. It was not a good fit for the first nursing home in which Jimmy lived. Some staff feared breaking the equipment and others didn’t want to bother hooking Jimmy up to it.

The crown jewel in Jimmy's arsenal of communication devices was an auditory scanning system he devised one Saturday with a speech therapist. It was low tech. Jimmy didn't need a computer to communicate. He needed a willing partner – a human speller.

When Jimmy wanted to talk, he blinked rapidly. It signaled that he wanted to spell. Then, the series of questions began.

"Is it a vowel?" Jimmy answered yes or no. If it was a vowel, then I recited the vowels: A E I O U Y, until Jimmy blinked. I wrote down the vowel. Then, repeated the process asking, "Is it a vowel?" No. Then, I offered Row 1, Row 2 or Row 3.

The system appeared complicated. It was intimidating to some. We considered ways to streamline it, but it worked. Jimmy never changed it.

When Jimmy and I did a “show and tell” demonstration of how to spell, Jimmy would often spell “Hello.” While it would have been easy to spell “Hi,” Jimmy never took the easy way out. He spelled out the entire word, so the guest could understand the complexity and simplicity of this spelling system.

All the people who were locked-in – whether by a brain stem stroke like Jimmy or someone who had Lou Gehrig's disease or Amyotrophic Lateral Sclerosis (ALS) – led the way to help Jimmy communicate. Each person and each speech therapist added to the dialogue on ways to communicate when one’s voice just didn’t work.

A chart of Jimmy's spelling method followed him everywhere. It was placed squarely over his bed at the nursing home or in the hospital. Smaller versions were printed on laminated business cards, so nurses and aides could keep it with them. Postcard size versions were available for visitors.

Following Jimmy's stroke, his words were precise just like they were before his stroke. The spelling system lacked personality as inflection and emphasis were absent in the string of letters. Words were sometimes garbled. The letters mingled together. It was fuzzy sometimes where one word began and another ended.

The spelling method cracked an all important code for Jimmy. It was the key to communication. It allowed him to communicate both powerful and trivial messages. It allowed him to speak without a voice.

The chart is pictured above. A key direction is at the end: Be careful about guessing. A lot of wrong guesses often leads to frustration for both the speller and Jimmy.

Jimmy wasn't very tolerant. He wanted his conversations to be free of guesswork. He had had enough frustration elsewhere in his post-stroke life.

Friday, March 20, 2009

Medical news can get twisted

Medical emergencies don't discriminate. It doesn't matter, who you are or what you do. It doesn't matter, if you are rich or poor. It doesn't matter, if you are famous or a regular Joe. We are all the same. We are all vulnerable to the crisis.

While celebrities may face scrutiny from the mainstream media or gossip sites, everyday people face scrutiny from sometimes tougher critics such as Aunt Mae or their neighbor Bob. The tragic death of Natasha Richardson made me think of how information gets confused during a medical crisis.

I didn't learn of her death until late on the evening of March 18, but my morning began with grim headlines about her condition including a notice that she was already dead and others indicating she was brain dead.

The headlines, the corrections, the innuendos made me mad. It wasn't my journalism background that raised my anger; it was my background as a caregiver. While most will not deal with misinformation on the global level that Richardson's family experienced, they will experience misinformation on a local and more personal level from their own families and their own communities.

When Jimmy had his stroke -- in that first hour -- my family and his made calls to family members and friends. We essentially said, "It's something really bad, but we don't know anything yet. They are running tests."

The doctors didn't know exactly what had happened to Jimmy yet and I certainly didn't. I was processing the information I had received. I knew the news was grim, but there was not enough news in the beginning to even determine how I should feel. I couldn't gauge the facts. It took a few days for it all to digest.

I knew I did not want to disturb my twin sister Tracy that night, because at seven months pregnant she didn't need to know. She could sleep through the night. As we received more dire reports, Tracy and her husband David were called. They joined us in a special waiting room outside of the larger Intensive Care Unit's waiting room.

The next morning -- still with very little information -- I asked Tracy to call my office and tell my co-workers the news. I couldn't talk to anyone just yet. "They already had heard something," Tracy said when she returned from making the call.

In small towns, news travels fast. My friend Patti said someone had already called the office asking for information on what had happened to Jimmy. She didn't know. It was my first and very fast lesson about medical information: You can't control it.

It's like that gossip game you play in school. You whisper one thing to the person next to you. When it returns to you, it is something completely different.

In Jimmy's case, the news was being spread out of concern, but it wasn't always correct. I learned to be exact with information. I only shared theories and ideas with a handful of people, so the information didn't get spread around as fact. If necessary, I would repeat the information -- several times.

A key task after Jimmy's brain stem stroke was to be informed. I did my best to keep everyone else informed too, but my priority was Jimmy.

The delivery of medical information has changed over the years, which can be difficult for family members. You just can't call up the hospital anymore to find out how Cousin John is doing. With federal rules such as HIPAA or the Health Insurance Portability and Accountability Act, hospitals have become stricter with medical information.

I saw both sides of the spectrum of the HIPAA law -- extreme enforcement and facilities that sometimes would make you wonder, if they knew what HIPAA was. During a time when Jimmy was stuck in a hospital 100 miles away from me, the phone was my only source for daily updates. A nurse insisted once that she could not provide information over the phone. Another hospital released information about Jimmy being placed on a ventilator to a family member over the phone, prior to the action being taken.

Whether it was a HIPAA issue or a neighbor spreading good-intentioned misinformation about Jimmy, I gradually learned to pick my battles. I argued with hospital staffs where necessary and shrugged off the misinformed neighbor.

I made an effort to give people information through a column I wrote while working at The News Observer in Blue Ridge, Ga. or in person. Honestly, I probably gave too much information when people asked, "How's Jimmy doing? or "What's new?" Thankfully, many patiently sat through my long winded response. It was therapeutic just to talk.

I'm sure Richardson's family doesn't care about the incorrect headlines and anonymous sources right now. They have a heavier burden. They have to deal with the sudden loss of a loved one. There are no words to console them after such a tragic accident. Hopefully, they will be allowed to grieve in private.

Wednesday, March 4, 2009

Keep the plastic!

The more I listen to the news of the virtual economic collapse of the system as we know it, I worry about one plastic card that's very important. It's not a credit card -- it's your insurance card.

When you begin looking for ways to cut your budget, you realize just how many insurance bills you have to pay each month, every six months or every year. There's insurance to cover your household items if you rent or own your own. There's insurance for the car. There's insurance for your health. There is insurance for long-term care or for disability. There is insurance in case you die.

This economy may be making you take a closer look at all of those insurance policies and those premiums that seem to be due all too quickly. When Jimmy had his brain stem stroke at 33, we did not have long-term care insurance. "Why do we need something like that?" I could hear myself thinking -- had the thought ever crossed my mind.

Sadly, the thought did not cross my mind, as we were too busy living! We were young. Of course, we had the insurance on the house, the cars and the all important life insurance. You live and die, right? We had to have the inevitable dying part covered.

I just Googled disability chances. One insurance Web site popped up saying that one out of every 106 people die, but one out of every eight people become disabled.

We were not prepared for disability. The health insurance, which became my most important piece of plastic in my purse, saved his life. It provided the care he needed to survive and to thrive after the stroke -- thanks to a stay at Shepherd Center in Atlanta, Ga.

Health insurance did not take care of the "next step." That's the place Jimmy went following his ICU stays and the rehabilitation. We had to piece together his care through veterans benefits and eventually Medicaid. The health insurance filled in the gaps when there were more hospitalizations, etc. It was essential to his survival.

As the economy keeps changing, I worry about what people are going to do. Health insurance is so important. Without it, Jimmy would have been shuffled immediately to a nursing home. With it, he was given a chance and was accepted at Shepherd Center.

I read an article several weeks ago on www.cnn.com, which mentioned a doctor who didn't have health insurance. He was between jobs, when something happened and he needed surgery. A key point was that the doctor -- a doctor -- didn't have health insurance. I thought he was brave he was to share his story. His story emphasized the point that there is sometimes a gap in coverage.

The doctor's story also highlighted a little known point about negotiation in the health care industry. Without insurance, he negotiated a less expensive price for his surgical procedure. You don't have to be a doctor to do this. Anyone can do it. You just have to ask.

If you have had insurance before, think back to those statements of benefit notices you receive in the mail. The doctor charges one price. The insurance company negotiates to pay a lower price. Your co-pay is typically deducted from the amount the insurance will cover. There is wiggle room.

I understand COBRA payments can be expensive and you may need to forget about the COBRA policy and shop for something with less benefits and lower monthly payments. You may have to get a larger deductible for the year.

Insurance is important to have. You need to have it when you are healthy, so it's there when you are not. If you can't find a low cost individual or family policy, consider checking into state and federal programs to help families. Many states offer insurance programs to cover children.

I know from experience it is overwhelming to see a bill for $275,000 for medical services. The shock is well cushioned with a health insurance card in your wallet.

Saturday, February 7, 2009

Take a break

It may seem like a selfish thing, but it isn't.

Flight attendants tell us the drill every time we board a plane. It's part of the safety drill. If the cabin loses pressure, oxygen masks will fall from the overhead compartments. You need to put it on and breathe normally. The bag may not inflate, but the attendants always reassure us that the oxygen will be there for us.

The attendants also tell us another key bit of advice. If you need to assist someone like a child or a spouse, you should put your own mask on first. It's key to both of your survival. It's important you get your oxygen mask on, so you can indeed help the person who needs your help.

Long-time caregivers know all about this, but it's a difficult concept for new caregivers to understand. I know. I was there myself at one time as my late husband Jimmy and I tried to adjust to our new life. He was mute and completely paralyzed from a brain stem stroke. Locked-in Syndrome can be a devastating diagnosis as he was essentially a prisoner in his body.

While we worked together to ensure he could communicate through a special system of eye blinks, the heavy-lifting part of managing his care while in a nursing home fell on me. Within the first few months of his diagnosis, I had lost around 30 pounds and was getting worn down. "You need to take care of yourself," a friend told me. "Yes, I know," I told her, but I was clueless.

It took baby steps to realize I needed to take care of myself, in order to take care of Jimmy. When his care stabilized, I decided to take a trip. It was canceled almost immediately, because Jimmy became ill and was hospitalized. Travel insurance was a wonderful investment.

After a couple of hospitalizations, Jimmy stabilized. I didn't. Exhausted and rushing around with my job, I drove my car head-on into a yellow, concrete warning post. It wasn't pretty. I didn't get the warning though, because I dented the rental when I slid into a ditch at a four-way stop. Message received.

I decided to rebook the trip. Jimmy protested my plans. He declared through his eye blinks and tears, "You don't care." He changed his status to Do Not Resuscitate. If something happened to him while I was away, he would die.

I asked him repeatedly to change his status, but he would not. I did not change my plans either. It had been two years since he had his stroke and I didn't know how much longer I could keep living in limbo. I needed to make a decision. While Jimmy was angry at me, he made a decision to look at life-ending issues. I was looking at it from another perspective. I wanted to live.

On that flight to London, the flight attendants did the same thing they always do. They talked about how to put on your oxygen mask. They asked each person to put his or hers on before they assisted their children or family members.

The same rule applies to care giving. You have to take care of yourself in order to take care of someone else. It doesn't have to be a grand trip. It may be something as simple as sitting on the porch swing and listening to the creek that flows by your house or taking a nap. You may even want to ask a friend or family member to stop in to visit, while you take a break. No matter what it is take time and refresh.

While your loved one may not always agree with your efforts to take time for yourself, he or she will reap the rewards just like you. Jimmy wasn't mad for long. He was excited to see me and hear about my solo travel adventures. He also quickly had the medical staff change his chart. He decided he wanted to live, too. The Do Not Resuscitate was removed from his medical chart.

Take time for yourself. Many care giving organizations provide tips on how to take a respite. The Well Spouse Association at www.wellspouse.org has a great resource list or consider joining a support group for caregivers in your community. It's important to know you are not alone.

Get your oxygen first (and consider travel insurance when planning a trip).