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?

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.

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.

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. 

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.