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

Just a Test

I grew up during the cold war era, and it wasn’t unusual to be watching TV and see a test pattern pop up on the screen and hear a shrill tone scream an alarm. When I was a kid, my heart would thud in my chest if I heard the tone without the preamble, “This is a test of the Emergency Broadcast System.” I always felt relieved when at the end the words, “This is only a test” were repeated.

Eventually, the rules changed, and the EBS was used to warn of impending natural disasters, and in our area, that would be tornadoes. I didn’t get the memo about the new use for the notification system. The first time I heard, “We interrupt this broadcast,” followed with a tone that could make a dog howl, I spent thirty long seconds imagining we were going to be a nation of crispy critters as soon as the nuclear mushroom cloud radiated us. I was one darned happy kid to find out it was merely a tornado in a different county.

Of course, tests later caused a different kind of anxiety. I always over-studied the material to make a good grade on tests. I hated to miss any questions and a B just wasn’t an acceptable grade. The problem I found with knowing the material so well is that sometimes I would miss a question because of a nuance that made the answer technically incorrect. It seems that other kids just skimmed the surface and marked it, but I would know that part of the answer was wrong.

Not long ago, my daughter-in-law and I were discussing the answers to a quiz, and I discovered that she was a lot like me when it came to analyzing multiple-choice answers. We tried to figure out why a teacher would give two answers that could technically be right, but expect the student to decipher which answer she expected. One question had to do with what you would say to a new mother who had cut down on cigarettes. One answer was to tell her “It is good you cut down, but you are probably still getting nicotine.” Because of the word “probably,” we knew that had to be the wrong answer. Wrong! That was the teacher’s choice.

Now, most of the tests I have are medical tests and you can’t study for those. It seems that the older I get, the more determined physicians are that they can surely to goodness find something wrong with me. By the time they poke and prod, take a few vials of blood, and run tubes with little camera down my throat or up my ahem, I don’t stand a chance. Sure enough, they always find something. What happened to the days when I felt pretty darned good and was blissfully unaware that things were falling apart on the inside?

When Jim started having memory problems, our family doctor sent him to a psychologist, who in turn sent Jim for a battery of tests. The results of those tests proved to be a turning point in our lives. I knew Jim was having problems, but the tests showed he had dementia. He couldn’t do simple math, count backwards from ten, or name any words that began with the letter “a.” Jim had done a good job of covering his deficits, and I was shocked to learn about the problems he had with abstract thinking.

Jim became part of a study for a Phase III drug. He was tested during each follow up visit with the neurologist. They let me stay with him during the testing.

“What season is it,” the nurse asked.

“I have no idea,” Jim replied.

“Did you wear a coat today?” she asked as a cue.

“Yes.”

“What season do you think it is if you are wearing a coat?”

“I have no idea.”

“Do you know where you are?”

“A hospital.”

“Do you know what city this is?”

“Yes.” He couldn’t come up with a name, but was confident he knew where he was.

“Do you know where the stamp goes on this envelope?” She handed him an envelope.

“Right there,” he said pointing to the upper right hand corner. He gave me a look, like he thought she might be just a bit stupid to not know where the stamp went.

It was a test, right? Just a test. So why did it bring tears to my eyes?

Early Onset Alzheimer's blog is in a contest for the Best Health Blog of 2012 with a $1,000 prize. Currently, I'm in the top ten out of 300+ blogs. You can vote via Facebook or Twitter daily between now and February 15. Please remember to vote every day because your vote really counts! Click on the Vote for me button on this page.

Copyright © January 2013 by L. S. Fisher

http://earlyonset.blogspot.com

Paying it Forward

During the holidays, you hear many heartwarming stories about people paying it forward. McDonald’s and Starbucks have had a person pay for the next car, and that person, in turn pays it forward too. Chain reactions of generosity have been known to last for hours. It is really cool to hear about these fast food pay-it-forward lines, and it helps restore faith in human kindness and thoughtfulness, but real pay it forward heroes are those who make it a way of life.

Volunteering is the best way of paying it forward and is one of the reasons that people volunteer. There may be a few glory grabbing volunteers, mostly high profile people, who show up for an event or catastrophe for a photo op. But those are the exceptions. Most volunteers fly far below the radar, doing their best to give more to the world than they take.

Some people admire volunteers for doing what they don’t feel like they have the time to do. The thing I have noticed is that the busiest people make the best volunteers.

What makes a person volunteer? It could be an internal desire to help others, but often a major event spurs us to take action.

I am a prime example. At one time, I never volunteered for anything. I figured my life was busy enough with a full time job and family to take care of. I was fully aware I didn’t have time to volunteer for anything and when I got pulled into helping, I wasn’t always the most cheerful or willing person in the group. Sure, I wanted to do a good job, but often my heart just wasn’t in it.

My entire attitude and outlook changed when Jim developed dementia. The more I learned about the disease, the more motivated I was to do whatever I could to help. My first true heartfelt volunteer work was our local Memory Walk. I jumped in with both feet and spent countless hours strategizing how to have a successful walk.

Since then, volunteering has become a way of life for me. I only volunteer for causes and organizations I believe in—and only for tasks I think I can complete, and complete competently. If it falls out of my area of expertise, then I decline because I don’t want to bungle the job.

Acts of kindness for another, without thought of how it can benefit you, is paying it forward. All you have to do is look around for opportunities. Do you have an elderly neighbor who needs someone to help with yard work? Do you know a caregiver that needs to run to the store, but needs someone to watch a loved one with dementia for a short time? Maybe you know the server at your favorite restaurant has financial problems, yet she serves you with a smile. What if you left her a $50 tip instead of $5?

Recently, I saw a post on Facebook, that said, "Taking this challenge from a friend: 2013 Creative Pay-It-Forward. The first five people to comment on this status will receive from me, sometime in the next calendar year, a gift—perhaps a book or baked goods, or a candle, music,—  a  surprise! There will likely be no warning & it will happen whenever the mood strikes me. The catch? Those five people must make the same offer as their status.”

My immediate reaction: “I’m in!” I reposted and now I have five friends that will probably forget all about this. They are going to be pleasantly surprised to receive an unexpected gift, and I will have the pleasure of deciding what and when.

Paying it forward isn’t about big things at all, it is about little kindnesses to brighten someone’s day. It isn’t about getting a pat on the back, it’s about just doing what feels right in your heart. Paying it forward will help the giver as much as it helps the person who receives.

Copyright © January 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Foggy Friday

There’s something about this time of year, when a little rain mixed with unseasonably warm weather produces fog. I’ll admit I’m not a big fan of fog. For one thing, it’s a little spooky to be driving along and hit a heavy patch of fog. For some reason this always seems a little bit like driving into the Twilight Zone. Makes me halfway expect to hear strange music and to see Rod Serling, dressed in a suit and tie, standing alongside the road ready to hint at what’s really going on in the depths of the thickest fog.

Fog scares me, especially since the night I was driving along a gravel road after a visit with Jim at the nursing home and hit fog so thick I couldn’t see anything. I stopped and with trembling fingers dialed my son’s phone. I was afraid someone would come along and ram into me.

“If you can’t see anything then surely no one else is driving either,” he said.

While I sat there waiting for the fog to lift, I couldn’t help but think how Alzheimer’s is like a fog blanketing cognitive skills. Sometimes, fog just drifts in and out, but other times, it halts us in our tracks.

After a few long moments, the world became visible and I could see the road. I drove to my son’s house. When I worked up the nerve to head on home, he still thought it was risky for me to drive, so he led the way. His taillights were like beams shiny from a lighthouse directing me to safety.

You can be that beacon for your loved one when the fog is the thickest.

Early Onset Alzheimer's blog is in a contest for the Best Health Blog of 2012 with a $1,000 prize. Currently, I'm in the top ten out of 300+ blogs. You can vote via Facebook or Twitter daily between now and February 15. Please remember to vote every day because your vote really counts! It is easy to vote—simply follow the link below and click on the "Vote Now" button next to Early Onset Alzheimer's. If I win, I will use the prize money to fund attendance of my 13^th consecutive Alzheimer’s Association Public Policy Forum in Washington, DC.

http://www.healthline.com/health/best-health-blogs-contest 

Take Control Thursday

When your loved one has dementia, you may feel life is getting out of control. You spend all your time putting out fires, and never have time to relax and enjoy your hobbies.

I gave some thought to some of the ways I dealt with Jim’s dementia and shortened the list to five items that I found most helpful.

1. Prioritize. Important things at the top of the list. Of course, you will need to allocate time to spend with your loved one with dementia, but you need to schedule breaks too. Put aside time to spend with your family and friends. You can become so wrapped up in being a caregiver that you neglect the other people you love.

2. Adjust Your Attitude: You are not able to control the disease, or your loved one, but you can take control of how you react. I think some of the best advice I ever received about how to deal with behaviors was “So what?” When something happens, and no one is in danger, ask yourself “so what?” you might be surprised at how many times it isn’t really important at all.

3. Spend time with hobbies or pastimes you love. If you can’t find a relative to stay with your loved one, check into hiring a caregiver. If you don’t have respite from caregiving, you will become so stressed that you won’t be the excellent caregiver you want to be.

4. Allow downtime every day. Take a walk, go to the gym, read—schedule at least an hour a day to indulge in relaxation.

5. Write. Make lists: to-do lists, wish lists, lists of your loved one’s medications and symptoms to help you during your doctor visits. As important as making lists is to keep a journal where you can write about your emotions. Writing is therapeutic and helps mend the rifts in your soul.

Be thankful for the time God has given you and regain control of your destiny, one day at a time. Have a great Thursday! May today be the beginning of a new era for you.

Early Onset Alzheimer's blog has been nominated by Healthline for a contest between the best health blogs of 2012 with a $1,000 prize. Currently, I'm in the top ten out of 300+ blogs. You can vote via Facebook and/or Twitter daily between now and February 15. Please remember to vote every day because your vote really counts! It is easy to vote—simply follow the link below and click on the "Vote Now" button next to Early Onset Alzheimer's. If I win, I will use the prize money to fund attendance of my 13^th consecutive Alzheimer’s Association Public Policy Forum in Washington, DC.

http://www.healthline.com/health/best-health-blogs-contest 

Your votes are greatly appreciated!

Welcome Mat Wednesday

Today, I’m rolling out the welcome mat for my new blog followers—networked, regular followers, Pinterest, email, bookmarking the blog, or through one of the rebroadcasted postings.  I appreciate everyone who reads Early Onset Alzheimer’s blog and hope you find the blog inspirational and informative.

The blog is written in a “user friendly” style even when I discuss health news. I don’t use medical jargon. I am not a medical professional and don’t like needles and the sight of blood makes me sick to my stomach. I do have an insatiable curiosity about any breakthroughs in Alzheimer’s research and therapies. I also have first-hand knowledge of being a primary caregiver for a loved one with dementia and understand the turmoil a caregiver endures.

Most of the new traffic to my blog and Facebook is because of the Healthline Best Health Blog of the Year Contest, but I hope that after the contest is over, you continue to visit. I also want to welcome the hundred or so people who joined my Facebook event “Vote for Linda Fisher’s Early Onset Alzheimer’s Blog.” This dedicated group votes daily for Early Onset Alzheimer’s blog and have pushed the blog to second place!

And on this middle day of the workweek, I throw the virtual door open in welcome to all who enter the blogosphere to read Early Onset Alzheimer’s blog.

Vote here: http://www.healthline.com/health/best-health-blogs-contest
Join the Facebook event here: https://www.facebook.com/#!/events/368925796536932/

Tenacious Tuesday

Tenacity is a characteristic that has a positive impact on a caregiver’s effectiveness. Alzheimer’s disease can last for decades, and a tenacious caregiver has the staying power to persevere without faltering.

One of the most tenacious people I have known in my life was my mother-in-law. She tackled life with a bulldogged determination. When Jim developed dementia, she was a rock every step of the journey. From the early stages to the nursing home years, her unconditional loving care never once wavered.

Today, I salute my mother-in-law and all the other tenacious caregivers who have loved ones with Alzheimer’s and other terminal diseases. It takes a special kind of person to overcome adversity and still live life to the fullest.

I want to thank the tenacious people who continue to vote every day for Early Onset Alzheimer’s blog in the Healthline contest. They daily cast a vote for Alzheimer’s awareness for 26 million people worldwide with Alzheimer’s and for the families that love them.

http://www.healthline.com/health/best-health-blogs-contest

Movin' On Up Monday - Alzheimer's Advocacy

Do you remember the TV show The Jeffersons? It had some great characters with George, “Weesie” and the maid Florence. The whole idea of the show was that they were moving up in the world. Their dreams had come true.

Monday always gets a bad rap. Instead of seeing it as a time to jump in and get things done, we view it as a day that takes more coffee and more willpower than any other day of the week.

Today, the first Monday of 2013, instead of dreading the day, let’s think of it as the perfect opportunity to use our talents and skills to advance to a new level—to  step up and move on up.

I hope that “Move it on up Monday” is the day that Early Onset Alzheimer’s blog advances to second place in the Healthline contest. With the multitude of family and friends voting daily, I think it is doable!

By casting your vote every day, you are an Alzheimer’s advocate! Having an Alzheimer’s blog in the top 10 Best Health Blogs creates awareness. If the blog wins first place, your vote has helped fund my attendance at the annual Alzheimer’s Association Advocacy Forum in Washington, DC. You are a VOICE for Alzheimer’s!

http://www.healthline.com/health/best-health-blogs-contest

Save the Day Sunday

Do you remember Mighty Mouse and his proclamation that “Here I come to save the day!” He was just a mouse, but he was mighty. A pint-sized superhero. Guess that just goes to prove that you don’t have to be big, or well known, to make a difference. Each one of us can “save the day” for someone. We can say a kind word or do a good deed. It doesn’t always take something big to make a difference, it can be just a small thing like a hug, a smile, a note, or just a quick phone call to say “I’m thinking of you” or “I love you.”

Here’s to hoping you can be a superhero, if even in a pint-sized, or half-pint sized way. Crank up that smile and be prepared to pass around the hugs as needed.

My Early Onset Alzheimer's blog has been nominated by Healthline for a contest between the best health blogs of 2012 with a $1,000 prize. Currently, I'm in the top ten out of 300+ blogs. You can vote via Facebook and/or Twitter daily between now and February 15. Well, Early Onset Alzheimer’s blog is certainly in the running for Healthline’s contest. A hundred people are my superheroes and are saving the day by pushing the blog forward, one vote at a time.

 Please remember to vote every day because your vote really counts! It is easy to vote—simply follow the link below and click on the "Vote Now" button next to Early Onset Alzheimer's. If I win, I will use the prize money to fund attendance of my 13^th consecutive Alzheimer’s Association Public Policy Forum in Washington, DC.

http://www.healthline.com/health/best-health-blogs-contest 

The Alzheimer’s Advocacy Forum Celebrates Silver

Linda Fisher & Roberta Fisher,  Advocacy Forum 2012

When the Alzheimer’s Association began operations in 1980 they made it very clear that Alzheimer’s wasn’t just a joke for late night TV. What people previously thought of as senility had a name. Forgetfulness might not be mental lapses, it could be a disease that destroyed brain cells.

The mission of the Alzheimer’s Association is “A world without Alzheimer’s” with a twofold goal of finding a cure through research and providing support and services to the families dealing with Alzheimer’s and related dementia.

The Alzheimer’s Association is now the largest non-profit funder of Alzheimer’s research. They offer grants to scientists for promising studies. Along with the important funding of research, the families are not forgotten. The Association provides caregiver strategies to help them cope with daily challenges and provide a 24/7 helpline for those overwhelming moments. They have given a voice and a face to the 5.4 million Americans with Alzheimer’s.

My personal involvement with the Alzheimer’s Association began before Jim received a diagnosis. The first call to the Mid-Missouri Chapter assured me that this organization would help us. They threw out the life-line and we grabbed on and never let go.

Fast forward to April 2001—Penny Braun, executive director, of the Mid-Missouri Chapter invited me to attend the annual Alzheimer’s Public Policy with her. I immediately accepted. I had been a faithful Memory Day participant at the state level, and I was eager to take advocacy to the national level.

When we arrived in DC, cherry blossoms were in full bloom. The Forum was a whirlwind of activity and my head was spinning from the staggering statistics. There is something about visiting senators and representatives that make you want to know the hard facts to convince them that Alzheimer’s research is woefully underfunded. It doesn’t take long to discover that one of the most important jobs of an advocate is to tell a personal story. You provide the  answer to: Why are you here, and why do you care so much?

This year, the Alzheimer’s Advocacy Forum will celebrate its silver anniversary! Yesterday I received a personal email from Monica Moreno, director of early stage initiatives for the Alzheimer’s Association at their national office in Chicago. “Congratulations on your nomination!” in response to Early Onset Alzheimer’s blog’s nomination for Best Health Blog of 2012 contest. If I win the contest and the $1,000 prize, I plan to help fund my annual trip to the Advocacy Forum.

Moreno continued to share some exciting news about the forum. “I was also thrilled to see that for the past 13 years, you have been an active participant at the Alzheimer's Association Advocacy Forum which is again being held in Washington D.C. this coming April. I think you'll be happy to know that in honor and recognition of our 25th anniversary of the Advocacy Forum, the Association is waiving the registration fee for every attendee!”

Free registration! Love it. I believe in the Forum enough that I have paid my own way for most of the years I’ve attended. Together, we can accomplish our goals. We’ve fought to keep funding for Alzheimer’s research through years of budget slashing. I am pleased that I was one of the Alzheimer’s advocates with boots on the ground advocating for the “National Alzheimer’s Project” and the “National Alzheimer’s Plan.” It is heartening to know that you personally asked for and received support for this important legislation.

One of the important aspects of advocacy is to work with legislators without regard to political party. I enjoy meeting with my senator, Claire McCaskill, and my representative, Vicky Hartzler. I’ve developed good relationships with the health aides too over the years. Most legislators like to meet personally with constituents, but sometimes it is impossible. Aides play an important role in getting legislation passed and are typically well informed.

Alzheimer’s can be a lonely disease, but one of the benefits of the forum is building close relationships with other advocates. At the very first forum, I met Jane, Kathy, Sarah, and Ralph. I bonded with these four caregivers in a special way. Each year, I’ve met special people that enrich my life.

We've accomplished much over the past twenty-five years, but there is still work to be done! I'll be in Washington, DC, April 22-24 for the silver anniversary celebration. Join us to continue the fight on Capitol Hill for legislation and funding for Americans with Alzheimer's and for their families.

copyright (c) January 2013 by L. S. Fisher

http://earlyonset.blogspot.com

My Early Onset Alzheimer's blog has been nominated by Healthline for a contest between the best health blogs of 2012 with a $1,000 prize. Currently, I'm in the top ten out of 300+ blogs. You can vote via Facebook or Twitter daily between now and February 15. Please remember to vote every day because your vote really counts! It is easy to vote—simply follow the link below and click on the "Vote Now" button next to Early Onset Alzheimer's. If I win, I will use the prize money to fund attendance of my 13^th consecutive Alzheimer’s Association Public Policy Forum in Washington, DC. 

Find a Friend Friday

I am blessed to have a lot of friends, and hope that you do too. If you are like me, you hesitate to ask friends for a favor and would much rather be the one paying it forward.

Those of you who know me and who follow my blog have already figured out that although I'm involved in many things, Alzheimer's and dementia are my passions.

I've been blogging since 2008, but my mission started when my husband, Jim, was diagnosed with an Alzheimer's type of dementia at age 49. Now, the little blog I began is visited daily by people who, like me, have had their heart broken by a disease that slowly steals a loved one away. The circle of family and friends and their support is so important. They are the ones that keep you going and laughing. Their hugs are much like the mother's kiss that really can make it better.

My Early Onset Alzheimer's blog has been nominated by Healthline for the best health blog of 2012 contest with a $1,000 prize. Currently, I'm in the top ten out of 300+ blogs. The competition is fierce and my friends and family have kept me there for over a week. Thank you, if you have been casting your vote each day.

If each of you will find a friend today to vote for Early Onset Alzheimer's blog, I think I can maintain my third place position and even move forward. Who knows, if we double the votes with one friend each, we could even win this contest!

It is easy to vote, you simply follow the link below and click on the "Vote Now" button next to Early Onset Alzheimer's. If I win, I will use the prize money to fund attendance of my 13^th consecutive Alzheimer’s Association Public Policy Forum in Washington, DC.

http://www.healthline.com/health/best-health-blogs-contest 

Thank you for your support, and I hope the friend you find today is a blessing in your life.

It’s a New Year, A New Day, A New Year’s Day

How do you feel about New Year’s Day? Are you excited and hopeful or have you become jaded about the entire resolution thing?

I watched part of the celebration in New York City and, of course, wanted to see the ball drop. Is it just me, or have they really blocked the view now with all the signs and advertisement? Last year, for some reason, I decided they had not shown the ball drop because I couldn’t see it. Paying closer attention this time, I saw the ball disappear behind the countdown clock and a tower’s worth of advertisements. Does anyone else think this is a rip off?

In addition, the host and hostess yammered on about how bad 2011 was and how hopeful everyone had been last year that the New Year would be better, but 2012 disappointed everyone too. And why did we think that 2013 would be any different? Geeze, why don’t we start out with a negative attitude—I’m sure that will make it all better.

Perhaps to some people, New Year’s Day becomes a lot like birthdays—the more you have of them, the less special they become. Well, sometimes if you have enough birthdays you get to have a big birthday celebration for landmark years—80, 85, 90, 95, etc. The New Year, on the other hand, is always the first chapter of another book.

I don’t know about you, but I always find New Year’s Day a time to plan ways to make it a better year. I cannot help it if I’m an optimist, and really why would I want to change that? I know it’s hard to feel optimistic, especially if you or a loved one are bogged down with depression or dealing with a serious illness.

Jim had health problems for many years and suffered from depression. Life sometimes seemed overwhelming for him. The one thing that kept him going was what he deemed “something to look forward to.” For him, something to look forward to was usually a road trip to visit his beloved family in Oregon or to camp in the Colorado Rockies. Weeks ahead of the trip, Jim would begin to spit shine and pack the van with everything we could possibly need.

One of the saddest things about Jim’s dementia was that he didn’t seem to be able to look forward to traveling anymore. We went to Colorado for a few years after Jim showed signs of dementia. After a total fiasco trying to pitch our tent, we stayed in hotels when we went to Estes Park. It wasn’t quite the same, and eventually, we substituted Branson vacations for longer trips.

Jim is the reason I love to travel. I’ll admit that our early trips were pretty much an endurance test. With limited funds and not so dependable vehicles, some of our trips were the kind of experiences that seem better in retrospect than at the time. Later, we learned to slow down and enjoy the scenery, or stop to see the local sights along the way.

Am I excited about 2013? You bet! This is going to be a year for a major life event for me. I plan to retire from my day job after 33 years, which will give me more time to spend with family, to travel, and to write. I’ve been so busy trying to fit everything in that the only time I’ve relaxed in months was while I was trying to fight off a bad cold. I sat on the couch and watched hours and hours of shows on my DVR. I watched an entire season of Leverage in two days!  The truth is that I have so little time to watch TV that I record everything and usually watch it when I should be in bed sleeping.

So, as Jim would say, I really have something to look forward to this year—time, the most precious of God’s gift. It is up to me to take it when it is offered.

Note: If you enjoy reading my blog, please vote for Early Onset Alzheimer’s  athttp://www.healthline.com/health/best-health-blogs-contest or click on the Vote for Me button at the top right of this blog. You can vote daily via Facebook or Twitter between now and February 15, 2013. The blog is currently in the top 10 so it is easy to find! The winning blog receives $1,000 which will just about pay for my annual trip to the Alzheimer’s Public Policy Forum in DC.

Copyright © Jan 2013 by L.S. Fisher

www.earlyonset.blogspot.com