Dreams and Lewy Body Disease

I’ve always been a dreamer and often awaken in the night puzzling over what remote area of my brain produced those mini-motion pictures. My dreams are often a mystery, especially when I wake up with vivid images of my nighttime adventures.

We all dream, but some people cannot remember their dreams when they awaken. I tend to remember mine and find myself inspired, disturbed, or downright puzzled. I kept a dream journal for a long time as a means to jumpstart my writing. I am amazed at how many ideas I can glean from my dreams.

Just a few of the images I remember from last night: (1) I dreamed my house was connected to my work and a former employee had removed my cat’s litter box and let her outside. (2) I had gone to the dentist (whose office was at a mall) and forgot to remove the clothing protector when I left, but managed to accidentally put on two fancy scarves that didn’t belong to me. (3) My sister and I hopped on a trolley to return to the mall to get my coat and return the scarves.

Does any of that make sense? In a strange way, most of it does relate vaguely to something that happened the day before. Think about Dorothy and the Wizard of Oz. Her dream from the bump to her head was a fascinating distortion of the events leading up to the tornado.

Did you know that studies before 1950 showed that most people dreamed in black and white? That began to change during the sixties, and now about eighty-eight percent of us dream in color. Nearly ninety-six percent younger than twenty-five dream in color. This change is believed to be the result of the changeover from black and white film to color media. It really makes sense if you think about it.

One of the theories behind dreaming is that dreams are our way of consolidating our memories and attempting to make sense of them. We dream during the REM (rapid eye movement) stage. While our eyes move, normally, the rest of our body is paralyzed. In our family, several of us have, or have had, paralyzing nightmares. During this event, we are trying to wake from a bad dream and realize that although the mind is awake, the body cannot move. It is a disconcerting feeling, to say the least.

On CBS This Morning, Dr. James Galvin talked about a study from Mayo Clinic about dreams and the connection to dementia. This study showed that if you act out your dreams by kicking, shouting, punching, or thrashing about, you are at higher risk of developing dementia. In fact, the study shows this is the strongest predictor of developing Lewy Body disease.

Approximately 1.3 million people in the United States have Lewy Body disease. Both men and women develop the disease, but it is more common in men. Lewy Body disease is under diagnosed because of symptoms it shares with Alzheimer’s and Parkinson’s, but subtle differences help physicians make a diagnosis. Now, added to other differences, acting out dreams may be another indicator of the disease.

Lewy Body disease is best treated with a comprehensive approach by a team of specialists. Cholinesterase inhibitors, such as Aricept, work well on Lewy Body disease. In fact, it is believed the cholinesterase inhibitors are more effective on this disease than on Alzheimer’s. The movement disorders associated with Lewy Body is treated with Parkinson’s medication. Antipsychotic drugs should not be used for hallucinations because they react differently on persons with Lewy Body disease. These drugs worsen symptoms in fifty percent of those using them, and can cause a fatal reaction called neuroleptic malignant syndrome (NMS).

Of course, one of the problems with Lewy Body disease is REM Sleep Behavior Disorder. This is often treated with melatonin or clonazepam.

It is important to remember that if you move around and act out your dreams, it does not mean that you have Lewy Body disease or that you will develop it. If you develop signs of dementia, it is something to mention to your team of physicians during testing to determine the cause of your cognitive problems.

The connection between sleep and function the following day is strong. A lack of sleep or disturbed sleep affects our thinking process. Now, acting out during sleep means a person is five times more likely to develop Lewy Body dementia than those who sleep quietly during dreams.

Sleep is essential to our health and wellbeing. The REM stage of sleep is when our minds can take us places we will only reach through dreams.

Copyright © 2013 by L.S. Fisher

http://earlyonset.blogspot.com    

Spring Forward

Tonight, or should I say early tomorrow morning, is the time to set our clocks for daylight saving time. We know which direction to change the clock by reminding each other to “spring forward.”


So, I don’t have a problem with springing forward, but changing time, doesn’t work for me. But then, I don’t have any choice in the matter. I can’t continue using standard time when the rest of the country sets their clocks forward. Heck, it’s hard enough for me to be on time under the best of circumstances.

When the time changes, it takes weeks before my biological clock gets back in sinc with the clock on the wall. Anytime I travel to a different time zone, I go through this big mental adjustment. Whether I travel east or west doesn’t seem to make much difference. Either one will throw me for a loop, either while I’m there or when I get home.

One year, I carefully entered a schedule into my cell phone for the Alzheimer’s Advocacy Forum in Washington DC. I’m probably the only person who ever went to that much trouble, just to realize that I somehow managed to have the schedule set to Central time and every event I had painstakingly entered did not switch to the new time zone. Sure, the phone changed, but the entries did not change with it.

It seems that as I get older, I’ve reverted to questioning things—like daylight saving time. The first thing I found when I Googled the time change was that it is not “daylight savings time,” it is “daylight saving time.” In all honesty, we have the exact same number of daylight hours no matter what time the clock says. The whole idea is to rearrange time to suit our lifestyle, not to save any time whatsoever. Rearranging time is, of course, the biggest advantage.

The downside is that it messes up some of us for days, if not weeks. On the Monday following the time change, more auto accidents occur. Work productivity suffers.

I remember many years ago when I worked at a different job, we noticed one employee did not show up to work the day after the time change. One of my co-workers called him.

“What cha doin’?” he asked.

“Drinking coffee,” the missing employee replied, “like I always do this time of day.”

Boy, was he ever surprised to find out he was sitting there drinking coffee when he was expected to be at work.

Regardless of the extra daylight hours at the end of the workday, I always feel like an hour of my life has gone missing. It usually means an hour less of sleep for me since I can’t seem to go to bed early enough to get a full night’s sleep under the best circumstances.

It so happens that the older I get, the harder it is to make any fast moves and springing sounds like it could be beyond my speed. So, if springing is too hard, we could simply move forward. Each year we can move forward just a little slower.

Technically, it is not yet spring although the rain last night and the sound of dripping snow were hopeful signs of impending spring weather. All I know is that this is one year that proved that silly groundhog was wrong in his prediction—really, really wrong.

Before long, it will be officially springtime. Maybe by then, I’ll forgive Puxsutawney Phil for his faux pas. By summer, I’ll have adjusted to the time change and can enjoy the extra hour of evening daylight, which is after all the advantage of daylight saving time.

Copyright © March 2013 by L.S. Fisher
http://earlyonset.blogspot.com

Worrywartitis and a Storm Called Rocky

I tend to be a worrywart and when I heard the predictions last Monday, it was all I could do to keep from freaking out. We had just weathered a storm that dumped a foot of snow on us and then the models were calling for another six to twenty-two inches with thirty-mile-an-hour winds. I kept telling myself they could be wrong.

No amount of self-reassurance could keep me from worrying. I was awake more than asleep on Monday night as the storm raged. My cell phone said “light snow” but the wind-driven snow was anything but light.

By morning, I knew I’d be foolish to head out to work in the storm. Monday evening, we arranged to have some of the office staff picked up and taken to work. It was a good thing because we had major power outages at the electric cooperative where I work.

I was able to make some phone calls from home to help a little, but the brunt of the work fell on other staff, and, of course, the linemen who braved the blizzard to restore power to the people sitting in cold, dark homes.

As the storm named Rocky raged on, we became more aware of the damage. Nearly two-thirds of our system was in the dark.

I made it to work on Wednesday, and the rest of the week was a blur of calls and stories of how people coped without power—some of them for four days. The calls ranged from one extreme to the other—pleasant understanding to unbridled anger. The longer the outage lasted, the more exhausted our employees were and the more frustrated the members became.

Many conversations stuck with me, but I think the one that hit home the hardest was the lady talking about an elderly couple who were staying in town. They wanted to go home. She said, “He has serious health problems and didn’t bring enough medication. She gets so upset when things don’t go right. You know how people can get.”

“I certainly do,” I said. “I’m the same way. When something doesn’t go right, I get upset.”

The tension was broken as we had a laugh about human nature.

Throughout the week, I thought of the message Pastor Jim gave on Sunday. He said fear has many names and one of them is worry. I’m not sure where he got the statistics he quoted, but they made perfect sense to me.

Jim Downing said that forty percent of what we worry about never happens. I would say looking back at what I worry about, that’s probably a little low for me. But then, I’m a worrywart so it stands to reason that my personal fruitless worrying would be higher than average.

Thirty percent of worrying is about the past and can’t be changed. I saw an example of that when one of the employees asked me if she could take off next Monday. She needed to watch her grandchild, but she was afraid that she would be needed at work. I put it on the calendar and told her, “Sometimes family just has to come first. It took me a long time to realize that and I missed a lot of events because I put work first.” With tears in her eyes, she relayed a story of when she put work first and had never stopped regretting it.

Twelve percent is over criticism. I used to get my feelings hurt easily, but I outgrew that. I think to overcome worry about what others think of me, I’ve acknowledged that I’m not perfect and some people cannot be satisfied. I can’t do much about those who criticize me, but I can either use the criticism to improve myself, or if it’s unwarranted, let it die. I learned a lot about criticism this week.

Ten percent of worry is over health—yours or a loved one’s. I think we worry more about our loved ones that ourselves. One time I needed surgery and Jim kept insisting I tell my mother. I wanted to tell her when it was over. He couldn’t handle the stress on his own and he called her! I know that Jim’s dementia worried me more than it did him.

Eight percent of our worries are about real problems. Sometimes, worry can be a positive thing because we prepare ourselves. Some of those who worried about the storm used their concern as a springboard to prepare. They arranged a place to stay; they fired up generators or wood stoves. They became ingenious and went into survivor mode. Sure, they were as inconvenienced as anyone else, but they found a way to make the best of a bad situation. One woman fired up her grill to melt snow water to flush her toilet.

I wish I could say knowing the statistics means I’m now worry free, but it doesn’t. As long as snowstorms are wicked enough to have names, many of us will worry. Action does help alleviate some of the worry, along with faith and trust in a higher power.

Copyright © by L.S. Fisher, March 2013

www.earlyonset.blogspot.com

Thundersnow

We knew the storm was coming and needed to plan accordingly. Although the amount of snow on the ground was deceptively light at 6:40 a.m., the time I usually leave for work, the forecast warned that this was just the beginning of a long day. I stayed home deciding I’d rather be snowed in than out. Having been caught in both situations, on my last year in the working world, I have no desire to put my car in a ditch.

I do believe the nearly foot of snow was more than expected. The snow fell at about an inch an hour, and to make it more interesting thunder rumbled. The thundersnow fell, fell, and fell. I started measuring with a ruler and the last time I sank it into the ground, a mere inch showed. Then it started sleeting.

The intense snowfall brought the world to a screeching halt as banks, shopping centers, restaurants, and other businesses sent employees home. Interstates and airports closed. So many cars were stranded that in Kansas City, they towed them off by the hundreds in order to clear the highways.

Thundersnow is rare, and a little bit weird. In a normal thunderstorm with rain, thunder can be heard for many miles from where the lightning strikes. Snow acts as an acoustic suppresser and the sound of thunder can only be heard for two to three miles.

When we wake up each morning, we expect the usual, and we can be caught off guard when the unusual happens. The unexpected can strike at any point in time. It can come in the form of a phone call, a text message, a medical test, a bulletin on TV, or a knock on the door.

Hundreds of mundane days can be shattered with one nanosecond of the unusual. We can often chunk our lives into sections based on moments when our world tilted and never quite righted itself. One of those times in my life was when the doctor told us Jim had “dementia of the Alzheimer’s type.”

When you hear news like that, your ears start to buzz, as if they can’t bear to hear the unexpected information. Your heart quickens, and you stop breathing as your brain echoes with the words it refuses to process. Denial, hope, and despair wage a battle to see which one can get the upper hand.

Jim always said, “I don’t have that.” He preferred to think the psychiatrist was inept. It turned out that Jim had a rare type of dementia. It wasn’t Alzheimer’s, but it was just as bad, with the same inevitable outcome.

Not a day passes in this world without someone struggling to live through an impossible situation. Globally, 156,000 people die each day. That is a lot of grief to go around. In order to live a happy, normal life, we often harden ourselves to suffering if it does not affect us personally.

On the flip side of the death card, we celebrate the births of 350,000 babies each day. Of course, some people have more cause to celebrate births than others do. Babies born into poverty, although loved, may be a worry to his or her parents who struggle to provide basic food and shelter. Through the joy, every parent is afraid that something will go wrong. Our instinct is to protect our children from the cruelties of the world, but that is a goal set up to fail. Too little protection puts them in danger, too much can make them vulnerable. Births and deaths while unusual in our personal lives are daily occurrences when we look outside ourselves.

What does the future hold? No one knows. The future is both as unpredictable and predictable as the weather. Weather is never an exact science. Yes, sometimes we can be warned of the possibilities, or probabilities, but what will really happen can be a different story.

This morning I saw two opposing predictions for the storm expected on Sunday. We can have another ten inches of snow, or a thunderstorm with rain. In either case, it is expected to come in the night, so it’s anyone’s guess as to what Monday will bring. Will it be a normal workday, or another weird day with thundersnow?

Copyright February 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s Future: Research or Palliative Care

I’m a baby boomer and I know just how old we are getting. This year I plan to retire and hope to have time, finally, to enjoy all the activities I’ve had to put on the back burner or reserve for a few weeks of vacation. What I don’t want in my future is to be brought down by Alzheimer’s as we know it today.

Alzheimer’s disease would rob me of my memories, my skills, and effectively end life as I know it. I want to remain active throughout my old age and still have the ability to enjoy life thoroughly. I want to be like my mother!

We are nearing the crossroads with Alzheimer’s as we baby boomers age. Left unchecked, 13.8 million of us can look forward to developing Alzheimer’s disease. I don’t think there are thirteen of us who want this future, much less 13.8 million.

Why is this important to us? We all want to think that we will be one of the lucky ones without Alzheimer’s in our future. The biggest problem is we are not investing in preventing Alzheimer’s. We seem to be sitting on our butts instead of doing something about Alzheimer’s now.

Do you know how much this country invests in Alzheimer’s research? Last year the National Institutes of Health invested $606 million in Alzheimer’s research. That seems like a lot of money, doesn’t it? In fact, for Alzheimer’s it was the first time research funding from NIH exceeded $500 million. Should we be doing a happy dance? Not so fast. How much will it take to find a cure for Alzheimer’s? Just to give it some perspective—NIH spends $6 billion a year on cancer, and $3 billion for HIV/AIDS.

I know we have a budgetary crisis, and I really think we need to do something about it. In 2012, the cost of Alzheimer’s care totaled $200 billion, including Medicare and Medicaid payments of $140 billion. The cost of Alzheimer’s care is expected to increase 500% to $1.1 trillion by 2050 as we baby boomers age.

Think about these staggering numbers for just a moment. I’ll admit that I have trouble wrapping my head around numbers that start with a “b,” much less a “t”. If you look at Alzheimer’s from strictly a financial viewpoint, you have to admit that something has to be done. The only logical way to stop this impending financial disaster is to find a cure, or at least treatment that will halt the disease before it destroys independent living.

Are we ever going to accomplish this goal without investing in research? That is a question we need to ask our legislators, and it is one we do ask each year during our Capitol Hill visits following the Alzheimer’s Advocacy Forum.

For a moment, let’s put all talk of financial considerations aside. The bottom line in this entire argument is the emotional impact on those diagnosed with dementia and their families. Alzheimer’s is a life-changing event from which there is no turning back. It takes strength and determination to continue with quality life for persons with the disease, their family, and friends.

Though my volunteer work with the Alzheimer’s Association, I’ve met many people with Alzheimer’s and caregivers who manage this devastating diagnosis with dignity and courage. They have allowed news media into their homes to bring awareness. They don purple sashes, talk to their legislators about the disease, and leave a sense of urgency in their wake. Advocates with the disease give a face to the 5.4 million Americans who are living with Alzheimer’s right now, right here, in the United States.

So when we talk about the future of Alzheimer’s, we need to push, and push hard, for a cure, not palliative care for 5.4 million people today or 13.8 million in 2050.  Each life disrupted by Alzheimer’s is one too many. Our loved ones are not statistics—they are human beings with families that love them and memories far too precious to lose.

Copyright © February 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Fighting the Paper War

For the past two days, I’ve been fighting the paper war and though I’ve won a couple of minor skirmishes, I cannot say that I’m anywhere close to winning. It seems that I have bags, boxes, storage tubs, file cabinets and various temporary containers chocked full of paperwork.

I’ll be the first to admit that I get totally aggravated with myself when I can’t find an important piece of paper. When I’m being good, I file things away, or at least put common papers in their designated spot. On most days, I throw my mail on the end table and may or may not look at it, much less sort it.

Considering how hectic my life is, it makes perfect sense that I work in organized chaos most of the time. I put one project aside to work on another with a shorter deadline. I shuffle bags containing my writing group, Alzheimer’s council, Walk to End Alzheimer’s, Sedalia Business Women, Business Women of Missouri, and writing projects. Sometimes, I feel like throwing everything in the air and working on it randomly.

Yesterday, I tackled some of the various boxes marked “go through” which means I got tired of looking at the paper, didn’t have time to sort it, and just gave up and boxed it. So tackling one of those boxes has to be on a day when I don’t have anything else to do…or not. That day hasn’t happened yet, so I just decided to take a slice of time from pending deadlines to look at the waste products from past projects.

I sorted into two piles—keep and throw away. After a while, I became more hardened to what I felt like I could just toss. I threw away memories along with many of my creative efforts. When in doubt, I figured many of the papers were stored on a thumb drive somewhere.

Tossing, sorting, and examining documents was going quite well until I came across Jim’s Safe Return application. Then, the world seemed to stand still for just a moment as I recalled filling out the form. That piece of paper was a reality check. If Jim wandered off, he could become lost and need help to be reunited with us.

The part of the document that brought me to tears was the location of his tattoos. I knew one was on his left wrist because he covered it with his watch, one was on his thumb, and another on his shoulder. For some reason, I had trouble remembering just which shoulder was tattooed with his name. I could always picture the tattoo in my mind’s eye: “Jim” obviously a homemade tattoo. It looked like a prison tat, but in Jim’s case, his cousin Joe did the honors when they were young.

When I first met Jim, I didn’t believe he owned a shirt without the sleeves ripped off it. So I saw the tattoo the day I met him, and nearly every day of our marriage. So why did I have this mental glitch about which shoulder?

While fighting the paper war, I found a document that confirmed the tattoo was on his right shoulder. Of course, it was! I’m sure I knew that all along.

Some memories are painful, but I’m thankful that I have them. With all the millions of memories running through 100 billion connectors in my brain, it is no wonder that some of them are hard to find. It might take something to jog that memory and bring it to the forefront. At least that’s my story and I’m sticking to it.

With the discovery of the Safe Return application, I decided the paper war was best left on hold for me to return and fight another day. It only goes to show that among all the worthless pieces of paper we hang onto, sometimes a gem exists among them that freshens a memory from a different time and place.

Copyright © February 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Inquiring Minds Want to Know—Is It Really Alzheimer’s?

L.S. Fisher, Alzheimer's Advocate

There are two kinds of people when it comes to health issues—those who want to know everything and those who want to know nothing. One group falls into the category of die-hard realists and the other is filled with those in denial.

There aren’t any simple answers when it comes to health. A visit to a physician can make or break your day, and sometimes your spirit, depending on how he presents your health issues. But even more important is how you interpret the diagnosis you are given.

Getting an Alzheimer’s diagnosis is a long and arduous process. An entire battery of tests, scans, and evaluations are used to determine if you might have a treatable condition. Once other conditions—thyroid, drug interaction, vitamin deficiencies, too much calcium—are ruled out, your physician may give you a diagnosis of Alzheimer’s.

Hundreds of other related dementias exist besides Alzheimer’s. Since Alzheimer’s is the most common cause of dementia, it is the usual diagnosis. As the disease progresses, the type of dementia may become more evident as frontotemporal dementia, Lewy body disease, vascular or other common dementias. Some conditions can be determined by genetic testing—familial early onset Alzheimer’s or Huntington’s, for example.

For millions, the exact cause of dementia remains unknown or is determined by autopsy. We chose autopsy to get an exact cause of Jim’s dementia, which turned out to be corticobasal degeneration. Since Jim was diagnosed with Alzheimer’s, and not too many people know what corticobasal degeneration is, it is easier to say he had an Alzheimer’s type of dementia.

Currently, in the news is a discussion about a drug that allows a PET scan to detect Alzheimer’s plaques. The controversy is whether Medicare should pay for the $3,000 test. Opponents to the test say that it won’t help. I was floored to see the quote in the national article was from a physician in my hometown. The quote: “There’s never been a study that asked whether patients do better as a result of florbetapir testing,” said David Kuhlmann, a neurologist at Bothwell Regional Health Center in Sedalia, Missouri.

Okay, we all know there is no cure for Alzheimer’s and treatment is for symptoms only. Because of the bleak prognosis, no one seems to see a need for an accurate diagnosis. But early diagnosis is crucial in irreversible dementia for several reasons. First, it is important for a person with dementia to make important life decisions while they still can. Jim and I both signed advance directives, durable power of attorneys, and wills. Had we owned more, estate planning would have been even more important. Second, treatments are more effective in the early stages of the disease.

Putting aside all reasons for a diagnosis, and how it could actually help, there is the matter of cost, and Medicare needs to avoid unnecessary expense. So, this test costs $3,000. Expensive enough, I’d say. I’m going to throw out a ballpark figure of $20,000 to complete all the testing to attempt to rule out Alzheimer’s. In our case, most of that was paid through private insurance, and out of pocket, rather than Medicare.

Once we ruled out other conditions that could cause reversible dementia, we purchased expensive drugs that had no effect whatsoever on Jim, other than side-effects, because he didn’t have amyloid plaques. Of course, we didn’t know that until after he died. A $3,000 PET scan to find out his dementia was not Alzheimer’s, as diagnosed, could have saved many more thousands on drugs and costly emergency room visits.

I can think of a lot of scary diagnoses and can narrow down the ones that would make me take stock and reevaluate my entire life and lifestyle. Alzheimer’s type of dementia, cancer, and heart disease would be at the top of the list. I would only hope that if I were ever diagnosed with any of those three, I would be a realist and want to know every treatment available and evaluate my options to have the best life possible.

I’ll admit that Alzheimer’s, or any related dementia, scares me the most. I’ve seen it, felt it, and breathed it throughout Jim’s journey. Through my volunteer and advocacy work, I’ve met many people with Alzheimer’s and their caregivers who face the diagnosis with grace and unbelievable courage. An Alzheimer’s diagnosis affects not only your body, but your skills, communication, and a lifetime of memories that connect you to your loved ones. Have you ever thought about how empty you would feel without memories?

Isn’t it important to know what is wrong with our health, so we can either make it right, or at least do what we can? 

Copyright © L.S. Fisher, February 2013

www.earlyonset.blogspot.com

Being a Caregiver Isn’t What You Do, It Is Who You Are

In Memory of Jim

Being a caregiver to a loved one who has dementia isn’t a job that anyone wants, and yet 15 million Americans fill those unpaid positions. This army of caregivers is made up of various friends and relatives who battle the around-the-clock attention that a person with dementia requires.

The Alzheimer’s journey is a long and complex route. It begins with small lapses and glitches that can be overlooked or explained away. It is easy to be in denial that something major is going on, and you just tend to muddle through each day as it comes.

By the time, the symptoms become more obvious, you go through an entire battery of tests to rule out any diseases that can be treated. As in any diagnostic process, you will go through highs and lows. Some physicians will analyze the tests results and give you different answers. One might say, “It’s low blood sugar and as soon as you treat that, the symptoms will go away.” Another might say, “Get your affairs in order while you still can.” Throughout the early diagnostic process, the caregiver shares the anxiety, the fear, and the loss with a loved one. Later in the disease, the caregiver bears those anxieties alone.

When your loved one has Alzheimer’s or other related dementia, caregiving becomes an all- consuming responsibility. If your parent has Alzheimer’s, you find that your roles have reversed and you feel like the parent. If it is your spouse, you miss the special bond you had and find your love changing from a reciprocal relationship to one where you expect nothing in return.

Most people look at a caregiver and think he or she is a person who feeds, bathes, toilets, and watches over the person with dementia. They see the physical side of caregiving as the overwhelming responsibility. They see a caregiver who looks exhausted from the physical demands and lack of sleep. They may even understand the mental strain of trying to keep a loved one safe: taking car keys away from someone who has driven for many years or installing special locks or alarms to keep them from wandering away and getting lost.

What the outsider cannot see is the pain and stress that threatens to overwhelm the caregiver’s soul. They cannot see the inch-by-inch losses that make each day a new challenge. They cannot see the inner strength that keeps the caregiver going against all odds. By this point, the caregiver knows that there is no cure, no effective treatment, and no hope of survival for her loved one.

The outsider may wonder, why bother? It’s a losing battle. These are the same people who won’t go to visit because, “He doesn’t know who I am and won’t remember if I’ve been there.” Hogwash! People with dementia might not be able to say your name or even recognize you, but they know when someone cares enough to spend time with them, bring them a milkshake, give them a hug, or even make them laugh. No, they don’t need anyone visiting who is going to resent spending time with them or who upsets them. Someone who cares enough to learn how to communicate with a person who has dementia is always a welcome visitor.

After Jim’s disease progressed and I couldn’t provide the kind of care he needed at home, people used to ask if Jim knew who I was. Jim was silent the last few years of his life, so I wasn’t sure whether he remembered my name or that I was his wife. It actually became irrelevant. What he did know was that I came to see him every day and that I loved him. It wasn’t important that he remembered me, but that I, and the rest of our family, never forgot him.

Studies show that the hardest part of being a caregiver is grief. A caregiver’s grief is insidious, sneaking up and attacking unexpectedly. For a caregiver to remain healthy, he or she needs to find solace in the fact that the person with dementia is taken care of physically and showered with love.

Caregiving with love isn’t what you do, it is who you are. You owe it to yourself, and to your loved one, to keep the faith that live is good, but some of us have bumpier roads for our journey.

To vote for Early Onset Alzheimer's blog in the Healthline best health blog CLICK HERE TO GO TO THE VOTING SITE. You can vote once a day via Facebook or Twitter. Contest ends February 15, 2013. Early Onset is the only Alzheimer's blog in the top 10. All votes appreciated.

Copyright © January 2013 by L.S. Fisher

www.earlyonset.blogspot.com

Friendly Reminder Friday

Sometimes with our busy lives, it is hard to remember all the tasks we have to complete in a day. Personally, I have so many calendars that one of my major challenges is to remember where I wrote the latest appointment or event. Even my cell phone has a calendar, Quick Office, One Note, and a Task list. Still, I can manage to forget things big and small, important or trivial, must do or wishy-washy.

I can understand how people forget to vote for Early Onset Alzheimer's blog in the Healthline contest. The contest began December 21 and runs until February 13. I got a late start since I never saw the email until the contest was well underway. We rose rapidly through the ranks and I was thrilled to make it to the top ten since it's easier for people to find you on the first page. The blog skyrocketed to 2nd place and we stayed there for quite a while. Then, other blogs started getting hundreds of votes each day and we've dropped to 3rd.

A lot of people voted one time and thought they were finished. Others kept forgetting to vote or couldn't find the link to vote when they remembered. Some of my family and friends tried to vote on their phones and just couldn't get them to work

Early Onset Alzheimer's blog has more than 100 visitors each day. I realize that some of you are already voting, but a lot aren't. Voting has to be done via Facebook or Twitter and many of you don't use either.

If you want to vote, and don't have a Facebook account and don't want to open one, you can easily open a Twitter account. All you need is an email address. Just go to www.Twitter.com and you can open an account in a matter of minutes. You can go to the contest link and vote. Who knows you may even have some fun with it!

Consider this your friendly Friday reminder to vote for the only Alzheimer's blog in the top ten! To make it really easy for you to vote, just CLICK HERE to go to the contest voting site. Once you are there, click the "Vote Now" button following Early Onset Alzheimer's blog. Then, a few things might happen. It might ask you to sign into Facebook or Twitter again and if you are already signed in you can just X out of that. You may be asked to choose Facebook or Twitter. You may have to scroll around on the screen to find the different options. Then, it will ask you if you want to post to your timeline. You can type in a message and post to your timeline to encourage others to vote. You will get a message that says, "Thank you for voting" and you are done.

You can vote once a day, and your vote is greatly appreciated!

copyright (c) January 2013 by L.S. Fisher
http://earlyonset.blogspot.com

Sometimes You Just Have a Bad Day

When I first met Jim, he was twenty-two years old, played a guitar, and sang country songs. He heavily favored Buck Owens, Merle Haggard, George Jones, and other old time country greats. Jim had a knack for hearing a song once and being able to sing it perfectly. It never ceased to amaze me that he could learn lyrics so effortlessly.

In the eighties, we began to take annual vacations to the Rockies. One day we walked into a shop in Estes Park where they were playing a version of “Happy Trails” that obviously was not Roy Rodgers and Dale Evans.

“Who is singing that song?” Jim asked the owner of the shop.

“That’s Michael Martin Murphey,” she said.

It was love at first sound for Jim, and Michael Martin Murphey became his favorite singer. His repertoire now included “Ghost Riders in the Sky,” “Tumbling Tumbleweeds,” and other cowboy songs. One day, he started singing an obscure song, “I Ain’t Had a Good Day” about a cowboy whose day was so bad he was ready to shoot anyone who got in his way and then kick dirt on them. After dementia robbed Jim of the lyrics to many songs, he could remember that one.

Yesterday, I thought about this song. I had a frustrating day at work and on my lunch hour, I checked on the Healthline contest and was dismayed to see that my blog had dropped from second to third. Although my voters rallied, we kept losing ground. Since Early Onset Alzheimer’s blog had been in second for quite some time, I kept noticing my voters voting for the second place blog…which was a different one than they intended.

The day wore on, just getting worse on all fronts. I was about to the meltdown point when the workday ended. I was the last one out the door and saw the day’s mail still on the shelf. I thought I had time to take it to the post office and still make it to my granddaughter’s basketball game.

Okay, had I not taken the mail, I wouldn’t have been on Broadway at all. I left the post office, fastened my seatbelt, drove the correct direction on the one-way street, stopped at all stop signs, signaled my turns even when no one was around, stopped at the light and made a right turn onto Broadway driving the speed limit. Obeying each and every law as far as I could tell. So why did the city police officer turn on his lights? Yep. He must mean me, so I found a side street and pulled over.

“Ma’am, you were driving on the white line,” he said. I must have had a blank look on my face because he said, “The one on the right side of the street.”

Okay. As I dug out my driver’s license and insurance card, I told him, “I’ve not been having a good day.” And now, it just went from bad to worse. Getting stopped for driving on my side of the road, what’s up with that? Was he afraid I was going to mess up the paint job? If they had those little rumble strips, I’d have known I was touching the white line.

“I’m going to accept this insurance card although it’s expired.” This whole insurance card thing annoys me. They can check everything else with your driver’s license, why can’t they put insurance info on their computers? I’ve had insurance with the same company, without a single lapse, for the past forty years. So why do I have to keep changing those cards?

After the delay, no ticket, I made it to the ballgame on time. All parking lots were jam-packed. I found a back parking lot, which not only was full, a truck was blocking the road out of the lot. Now, he deserved a ticket! I was able to drive off the pavement to get out of the lot. My first break of the day happened then as someone backed out of a parking place.

Once I was inside the gym, I found my son and daughter-in-law. I couldn’t help but repeat the words Jim so often sang and greeted them with, “I’m telling you friends, I ain’t had a good day.” And, I sincerely meant it.

Copyright © January 2013 by L. S. Fisher

www.earlyonset.blogspot.com