For Every Action, There Is a Reaction

The last few weeks have reminded me that for every action there is a reaction. I’m not talking about Newton’s Third Law or even writing advice I’ve received over the years. No, I’m talking about everyday common occurrences.

Since I live in the country, I may be a little closer to nature than my city-dwelling friends. Last Saturday, I looked outside to see five cows grazing in my yard. I’m not afraid of cows, but noticed one of the “cows” was actually a bull so I stayed inside until the bull decided to butt my satellite dish. I reacted by yelling in my no-nonsense  voice, “Get out of here!” The big guy turned toward me and gave me a look that indicated he wasn’t scared of me at all and didn't budge until my brother-in-law chased them away.

A few days and a few cattle visits later, one-half of my satellite programming quit working. It seems that half my programming is on one satellite and the other half is on a different one. My luck, the half that was working had C-Span and info TV, and the half that was out of commission carried American Idol.

For $98, they would look at my dish or I could purchase a service contract for $6 per month with a five-month obligation. I agreed to the service agreement. My daughter-in-law walked in while I was finishing my conversation. She went outside and looked the dish over, tightened up a few loose screws and the TV came back on. “I don’t know how long it will last,” she said.

I couldn’t see cancelling the appointment so I asked about upgrading to DVR. I had wanted to do this for months, but hadn’t done it. The technician not only upgraded my system, he programmed in American Idol so that I didn’t have to miss it while I was at the Alzheimer’s Walk meeting that night.

He planned to come back Wednesday to bury the cable and mount the dish on a pole. Wednesday morning, I turned on the water to take a shower and the lukewarm water quickly turned cold. The water heater had quit. I called my service provider and they said they could come Monday. Monday? No hot water until Monday?

A friend of mine came over and pushed the reset button for the water heater, which was all it needed the last time, and sure enough, it started working again. In fact, the water was boiling hot. Apparently, the service company reacts more swiftly to boiling water than cold water. They agreed to come the next day.

The dish man hadn’t showed up by almost ten, so I called the 800 number to see what was going on. While I talked on the phone, I headed down the hallway and almost stepped on a snake. It didn’t matter to me that it was a harmless, ring neck snake—a snake is a snake. My reaction: I screamed, backtracked, and started telling the guy on the phone and my friend that a snake was IN MY HOUSE. If I’d been by myself, I might have just moved out until the snake was removed. The way it was, my friend put his foot on the snake to keep it out of the nearby bedroom, and I brought him an oven mitt to pick it up.

“How did he get in here?” I asked.

“Probably that little crack under your storm door.” I had left the entry door open. Oh, yeah, Jim installed that storm door after he had dementia. He wanted to angle it slightly, but couldn’t understand that he was angling the bottom of the door the wrong direction. I finally convinced him to leave it straight so that we had a small crack instead of big gap.

It’s been quite a week, this week. A lot of action and reaction going on, for sure. Today, I’m relaxing and watching the snow come down. It’s hard to believe I was wearing summer clothes earlier this week. My reaction to the snow? At least a snake won’t be out in this kind of weather.

Copyright © March 2011 by L. S. Fisher
http://earlyonset.blogspot.com

Set My Heart on It

With only twenty-four hours in a day, I don’t get nearly enough done. I move from project to project trying to keep one step ahead of the next deadline. I have so many things that I have my heart set on, that sometimes, I just mentally flip a coin to see which project can wait—or be cancelled.

This weekend, I hustled to get a bundle of stories to the post office, and headed to the lake to watch my youngest granddaughter cheer at a basketball game. It was fun to watch her shake her pom-poms and chant cheers through a megaphone. My grandson played with his cars on the bleachers where the grownups watched the game and, of course, the cheerleaders.

After lunch at a Mexican restaurant, I decided that while I was in the neighborhood, so to speak, I’d drop in on my brother at the nursing home and see my mom at her nearby apartment. I called my mom since she doesn’t just sit at home, in case someone wants to drop by. She assured me that she would be home soon. Rather than wait at her house, I decided to make use of the time to visit my brother, Donnie.

“My roommate needs help,” Donnie said when I walked through the door. His strokes have interfered with his speech, but he was sitting in his wheelchair, bright eyed. He certainly looked much better than he did a few weeks ago when I visited him in the hospital. At the hospital, he was so miserable that he just kept saying he wanted to die.

“Okay, I’ll go get someone,” I told him.

When I returned to the room, he looked at me and said, “Who are you?”

“I’m your sister, Linda,” I said. Donnie is nearly blind so I knew it wasn’t that he didn’t know who I was, he simply could not see me well enough.

“Oh,” he said. When the aide came in, she mentioned that Donnie’s light wasn’t working. This started him on a rant about everything that wasn’t working in his room: the nightlight, the door that wouldn’t shut on his closet, and his opinion of housekeeping for not fixing everything.

“I’ll tell them,” the aide said, making her exit when she realized Donnie was past teasing and had become angry.

“I can’t walk, can’t move my arms, and can’t fix the things that are wrong. They haven’t even turned my calendar,” he said. Sure enough, the calendar with giant numbers was still on February. I flipped the calendar and sat down on his bed.

Now that he was a little calmer, I told him how much better he looked. I asked him if he was eating and he started telling me about refusing to eat the “pre-chewed” food as he called it.

I knew what Donnie was talking about because Jim’s food was eventually “mechanically softened” and later pureed. It never looked appetizing, and I told Donnie how my niece referred to Jim’s “mystery meat” when we couldn’t determine what kind of meat it was.

“Are they giving you regular water now too?” I asked.

“Hell, yes,” he said. “I told them to leave that thickening out. That stuff just made me thirstier.”

That reminded me of when Jim strangled and choked too easily and his liquids were thickened. I always thought that his thirst could not be quenched and felt bad that he couldn’t have his big travel cup filled with ice water.

After our visit, I hugged Donnie and told him I wouldn’t stay away so long next time. “I want to spend more time with my family,” I said.

“Family is the most important thing,” he told me. “If it wasn’t for mom and my brothers and sisters, I would just give up.” He wiped tears from his eyes with his left hand, the one he uses the best.

By the time I left the nursing home, the soft rain had changed to a torrential downpour. I didn’t let the rain delay me from visiting my mom and merrily splashed through the puddles of water on her walkway. When I set my heart on it, a thunderstorm and downpour won’t even slow me down.

Copyright © March 2011 by Linda Fisher
http://earlyonset.blogspot.com/

SuperMoon – Will it Be a Full Moon on Overdrive?

I remember having a discussion with a friend who thought I was crazy when I mentioned the full moon caused chaos at the nursing home.

“That’s an old wives’ tale,” he said. And he laughed at me.

“Hey, if you don’t believe me, just ask anyone who works in a nursing home,” I said. I’ve always been a skeptic about the moon’s influence on human behavior until Jim was a resident at a nursing home. No one had to tell me when the moon was full—it was obvious from the behavior. Residents were restless and agitated at a complete different level.

Okay, so I’ve done a lot of internet research and the scientific sites tend to scoff at the idea that the moon, full or otherwise, would influence behavior. As one site points out, the moon is there all the time whether the sun reflects off it or not.

Astrologers, not astronomers, think the March 19 SuperMoon may cause an increase in natural disasters. In fact, some think the influence of the approaching SuperMoon may have had something to do with the disaster in Japan. I’m not one to align myself with astrologists, so I’m not going to propose that the SuperMoon has anything to do with earthquakes, but I wonder if it will affect human behavior.

Life sometimes teaches us things that science can’t prove. While trolling around the internet, I came across something that makes sense to my practical side. It started with one person who posted that her sleep was disturbed during the full moon. She slept fine the rest of the month, but during the full moon, she could not sleep. Several other people reported the same problem.

Doesn’t this make sense? Scientific studies show that our sleep is disturbed when we have lights on in our bedrooms from TVs, clocks, cell phones, and all other electronic equipment. The less light, the higher quality our sleep is. At the nursing home, every room had a window. On full moon nights, moonlight would make the outside brighter than any other time of the month and disturb sleep. Maybe it was a cumulative effect on sleep building up to the full moon.

I don’t know about you, but I tend toward, well, a little lunacy when I’m sleep deprived. My reasoning skills are not as sharp, and I certainly lean toward my cranky side. If anyone scientifically charted my behavior, it might well ebb and flow with the moon’s fullness.

The moon will be closer than it has been in eighteen years. I know it’s going to disturb my sleep because it is supposed to be spectacular to see, and I want to see it.

You may be like my friend and most scientists, but before you scoff make note of the behavior of those around you. If nothing else, they may react to the weird looks you are giving them.

I can’t help but speculate that the SuperMoon might be like a full moon on overdrive. I believe people’s behavior will be—interesting. The SuperMoon will be something to behold for believers in the power of moon—and for people watchers everywhere.

Copyright © March 2011 by L. S. Fisher
http://earlyonset.blogspot.com/

Nasal Spray Vaccine

Those of us who have been following Alzheimer’s research have learned to listen to any news with optimistic caution. The latest research at Tel Aviv University shows promise for a nasal spray that will work on stroke as well as Alzheimer’s.

Is this a case of everything old is new again? When Jim first developed dementia, I read every piece of information I could about research. I checked out drug trials and tried to get him enrolled in an Alzheimer’s vaccine study. I remember reading that best way to introduce a vaccine into the brain was through nasal spray. No, I don’t remember exactly what year it was, but Jim was living at home so it must have been at least eleven years ago.

Don’t get me wrong, I’m excited about this study. Using animal models, researchers discovered that the drug introduced through nasal spray stimulated the body’s own immune system to repair brain damage caused by Alzheimer’s and strokes related to Alzheimer’s. The numbers being thrown around are that this research drug could help 80% of people with Alzheimer’s. This news would be more exciting if the drug was not so far from being available at the local pharmacy. In fact, the drug has not been used on humans.

Can this be the breakthrough to unlock the mystery of Alzheimer’s? I certainly hope it is. Just like the vaccine studies I tried to get Jim into more than a dozen years ago, this drug shows promise of reversing the damage caused by the disease.

Does anyone else find it a strange coincident that the acronym for the Tel Aviv University is TAU? It first caught my eye when I saw a report that began “TAU researchers develop a vaccine…” The hallmarks of Alzheimer’s are the plaques and tangles that form in the brain. Most research targets removing the beta-amyloid plaques. At first, I thought the statement meant these researchers were concentrating on the tangles which are made up of twisted fibers of tau.

With the woeful funding the USA provides for Alzheimer’s research, it is not surprising that the most exciting news to come along in several years was from Israel. The lack of funding for Alzheimer’s research means that many of the best and brightest USA researchers concentrate on better-funded studies.

Only time will tell whether the vaccine will be the long awaited Alzheimer’s cure, or whether it will be another disappointment to the millions who wait, and wait, and wait. What are they waiting for? They are waiting for that very first Alzheimer’s survivor.

No disease should be without hope. I know that I desperately searched for a ray of hope for the bleak prognosis Jim was given. Why have researchers found effective treatments for AIDS, many types of cancer, heart disease and other diseases, but come up empty with Alzheimer’s? A lot has to do with the priorities and a serious commitment to stopping a killer disease.

Alzheimer’s has a reputation of being a disease for the elderly, and we all know that no one is going to live forever. Early onset Alzheimer’s and related dementias affect people younger than age sixty-five—sometimes decades younger. Regardless of age, Alzheimer’s is a life-altering disease that requires a serious commitment to caregiving and palliative care that can stretch over twenty years.

Today, Alzheimer’s is a fatal, irreversible brain disease. The 5.3 million Americans with Alzheimer’s and 79 million boomers at risk should be encouraged by the TAU study. I believe that eventually a study is going to come along that can stop Alzheimer’s in its insidious tracks. Is it this one? Maybe, maybe not.

Alzheimer’s is a worldwide problem, and every country in the world, including the USA, should participate in finding a solution. At a time when our National Institute of Health funding is on the budget chopping block, we must insist that Alzheimer’s research move forward.

Copyright © March 2011 L. S. Fisher
http://earlyonset.blogspot.com

Change of Scenery

Life can become so routine that a simple change of scenery can help us gain a new perspective. The change doesn’t have to be drastic; it can be subtle.

I usually work on my netbook in the living room. I have a desk that sits near the patio doors and it is an inspiring place to sit in the summertime. Or, I might use my lap desk and work from the comfort of my couch. This weekend, I decided to work in the kitchen, which has a view of the house next door (people watching), the road (car/tractor watching), a field (cow watching), and my sister-in-law’s bird feeders (bird watching). Geeze, it sure seems like I’m doing a lot of watching, doesn’t it?

So why would you care about my change of scenery? It makes a difference only as it applies to you. If you are a caregiver, a change of scenery is probably something you crave—like a tropical isle far away from your responsibilities. Doesn’t that sound good? Although it may sound like paradise, it most likely seems impossible.

Maybe a complete getaway isn’t on your possibility radar, whether it’s because of your responsibilities or an economic issue. What you can do is something a little simpler to provide a change of scenery. As a caregiver, you need respite. You need time to regroup and refresh so that you can continue to be a good caregiver.

Sometimes, just an afternoon getaway with friends and family, or to just have some alone time can give you a new perspective. A fresh view can revitalized your thinking and make you a better caregiver.

I visited with a caregiver who said she wanted to watch her dad so her mother could have some time away. She had offered, even pleaded with her mom, to let her help. Her mother insisted that she hire a caregiver, but couldn’t find one she trusted.

“What can we do?” the woman asked me. “She just won’t let us help, but I think she’s about to collapse.”

“Try a different angle,” I suggested. “Tell her you want to spend some alone time with your dad. Let her know this is something that would make you happy. Does he like to ride in the car?”

"Oh, yes,” she said. “He loves to go for drives.”

“Take him for a drive and stop at a park for a picnic. It will make him happier, and will give your mom some time to do something she likes to do.”

Had I talked to the mother, I would have encouraged her to take help when it is offered. If a caregiver keeps a list handy, it is easy to find something for family and friends to do. Do you need something from the grocery store? Would your neighbor like to mow the grass? People really do want to help, but they don’t know what to do.

If you are the person offering help to a caregiver, who don’t ever accept—look around to see how you can help. Can you help with some chores? Do you know of an activity that fits the interests of the person with dementia? Did he like to fish? Maybe you could take him fishing to give the caregiver a break. Did she like to cook? Bring the ingredients and make cookies together while you shoo the caregiver away.

I was healthy and in my forties when Jim developed dementia. Our children were grown and my employer allowed me some flexibility so that I was able to keep on working. I had a lot of family support from both Jim’s family and mine. When I needed to hire professionals, I used respite funds from my local Alzheimer’s Association chapter to help offset the expense.

At times, caregiver responsibilities were overwhelming for me, and I couldn’t even imagine how someone in his or her eighties could take care of a spouse. Alzheimer’s can last for years and too often the caregiver gives out before the person with dementia. This is especially true of the selfless caregiver who never takes a break. Being on duty 24/7 can break anyone, no matter how strong.

If you are a caregiver who never takes a break or enjoys a change of scenery from time to time, ask yourself this important question, “Who will take care of my loved one if my health fails?” In this situation, caregiving is all or nothing. If you do it all, you could very easily get to the point where you can’t do any of it. You are headed for a personal mental health crisis if you become mired down with responsibility and give up the activities you love. If you are in crisis, what good are you to your loved one who depends on you?

Copyright © Feb 2011 L. S. Fisher
http://earlyonset.blogspot.com

Backyard BBQ Beneath the Stars

The thing about an almost 70 degree day in February, the barbeque grills come out from hiding. Football season may be over and there’s no excuse to tailgate, so we just tailgate in our own backyards.

This kind of day is a gift of a summer day in the dead of winter. Smoke drifts to the sky, the odor of hot and spicy, tangy sauce, sizzling hot meat, or grilled vegetables brings the scent of summer.

“It’s like a summer night,” I said.

“Yeah, except there aren’t any bugs,” my friend observed.

“I can’t argue with that,” I said. I walked to the edge of the deck to gaze up at the full moon and twinkling stars. “I’ve heard that city lights can keep people from seeing the stars.” As I stood there looking up at the sky, I thought about how seldom I take time to admire the beauty of a night sky.

With all the things that change in our lives, people coming and going, days filled with work, evenings filled with commitments, and nights that seem way too short for sleeping, the night sky remains unchanged. Some of the beauty twinkling above could have burned out a million years ago, but their light and essence can still be admired on a February night in 2011. Looking at the sky is like looking at history—theirs and mine.

The sky looks the same as it did when I was a child lying on one of my grandma’s quilts thrown on the front yard of my grandparent’s little house north of Stover. The sounds of music filled the air as my uncles played their guitars and sang country songs to blend with a backdrop of cicadas, bullfrogs and whippoorwills.

Those were simple days. As a child, I never knew the pain of loss or the taste of failure. I didn’t know what I didn’t know. I had never known anyone that had died. I guess I just thought we would live forever and the days of summer would stretch to the edges of the earth to infinity. Sickness, pain, and sorrow seemed as many light years away as a distant star.

When I drove home after the backyard barbeque, I turned up the volume on my XM Radio. My son had driven my car and left it on Channel 10 which plays old time country music. I was just considering turning it to a different channel but couldn’t resist listening to the Grand Ole Opry staring Hank Williams, Senior, not Junior. I just caught the very end of the show and listening to the hillbilly twang, reminded me of how everyone spoke when I was a child.

The program went back to other old time country music. One thing about country music—it’s usually tells a sad story or laments lost love. Too often the songs on Channel 10, are ones that Jim sang.

Merle Haggard sang the lyrics, “always wanting you, but never having you” and I had an ah-ha moment. Although I always assumed the song was about unrequited love, I suddenly realized it could be about lost love. How many of us know the empty ache of realization that we will never, ever be able to hold a loved one in our arms again?

We can feel that sense of loss when changes brought about by dementia have erased the person we knew. We feel the emptiness of knowing he is still there in some ways, but vanished in others. Jim’s music had always been such a part of him that when he lost his ability to play his guitar, we both lost a chunk of our lives. It was a change we didn’t want.

Maybe when too much has changed, we should look to the sky to remind ourselves that our lives are only a small speck compared to eternity. The sky looks the same to me as it did when I was a kid and looks the same as when my grandparents were kids. When everything changes around us, we need to take a deep breath of fresh air and take comfort in watching the same moon glide across the heavens and knowing that we can’t count the stars.

Copyright © February 2011 by L.S. Fisher
http://earlyonset.blogspot.com

February: The Longest Shortest Month

According to the calendar, February is the shortest month. Based on my experience, I consider it to be the longest shortest month of the year.

There’s something about the winter that makes it easier to have a bad day, or even a bad week. Slick roads, snow piled to the sky, and frozen water pipes become the rule instead of the exception. I have a lot of company when I say that February has not been good for me.

Last weekend was great with some good family time. I started the workweek with my day off—sounds good so far doesn’t it? Everything was going great until I washed a load of clothes and the water backed up into the basement. I figured something was frozen up and the forecast was for a week of freezing weather.

The week went downhill from there. I was behind at work because of last week’s blizzard and to top it all off, computer programming glitches stalled my progress and our annual audit fractured my concentration. I spent a week battling a constant headache, nerves and depression. I was behind schedule and no matter how hard I struggled, I could not catch up. For the first time in thirty years, I didn’t meet my deadline.

Somewhere in the back of my mind I knew that my tough week was only a hiccup compared to the months and years of trying times when I was a primary caregiver. When I remembered February 2001, I felt like mentally slapping my own face for being so downhearted over the past week.

A decade ago, Jim had been kicked out of the nursing home and spent the entire month of February in a hospital for “regenerations” while we scrambled to find a new home for him. The hospital changed Jim’s medication and he was not doing well. Medicine that was supposed to level out his moods sent him into a constant state of agitation and he took his hostility out on anyone around him. My sons and I made the two hour (each way) trip nearly every day to check on him.

It was hard to convince the doctors that Jim wasn’t normally a violent person and that he had changed drastically since they had prescribed an antipsychotic drug. We knew that as long as Jim stalked the halls in a mean mood, we would never find a nursing home to take him. I even checked into “behavior units” and didn’t like what I saw at all.

I can honestly say that February 2001 was a bad, bad month. It was a time of uncertainty and constant worry that I wouldn’t be able to find a safe environment for Jim.

One day after a particularly harrowing outing, my oldest son and I insisted that the doctor take Jim off the antipsychotic drug. Jim steadily improved after the medication change and as February came to a close, a local nursing home gave him a second chance. It was months before I conquered my fear that some kind of incident would happen, and we would have to find another place for him.

After putting things in perspective, I realize that although the last week was challenging, it was not overwhelming in the scheme of things. Five days later, life is looking much better. My son fixed the drainage problem and today is supposed to be a balmy forty degrees. Snow is melting so fast I can hear it dripping off the roof. I’m back to my optimistic self and confident that everything is going to be okay.

I can surely conquer this month. After all, February is the shortest month and this year isn’t even a leap year. With Monday being Valentine’s Day, I’m pretty sure I’ll have enough chocolate to make it doable.

Copyright © L. S. Fisher, February 2011
http://earlyonset.blogspot.com/,

A Blizzard and Early Spring

On Tuesday the blizzard brought the Midwest to a screeching halt. We were warned and most of us worked on our severe storm plans, but others remained clueless. When the blizzard came to town, businesses closed down and sent their workers scurrying to the shelter of their homes, or to the homes of family and friends to wait out the storm which surely would not be as bad as predicted.

Only it was, and then some. Instead of falling like a normal snow, the wind blew it sideways. And it snowed without respite through whiteout conditions, and before you know it, we had a real old-fashioned blizzard. It was certainly a good time to be indoors looking out the window at the snow that seemed to be on a mission. It was quickly dubbed Snow-maggaden, Snowpocalypse, and my personal favorite—Snownami.

After the blizzard raged all day and throughout most of the night, the world was covered with snow dunes. Ripples cascaded across yards and small objects collected drifts that stood several feet tall. The snowscape greeted the day with an in-your-face claim on the land. The world lay silent in awe of the volume of snow that dared snowplows to find the roads buried beneath its pristine covering.

Interstate 70 was closed from Kansas City to St. Louis, and the rest of the state’s roadways lay impassable. Snowplows plugged away at clearing main highways first. Other roads were cleared by farmers on their tractors. Even most state roads had tractor plowed single lanes, but no traffic during the morning hours because vehicles were snow covered lumps in driveways and alongside the roads.

People were snowed out, people were snowed in. It brought out the best of people with neighbors helping neighbors and the worst in people who couldn’t understand why stores were still closed in the aftermath.

Then began the slow, tedious process of digging out. Newspapers and television stations posted pictures of good Samarians wielding shovels and using tractors or trucks with blades to clear driveways and walks for others. By Friday, my country road had been cleared the width of a car. I was at work when I received the good news that my son, grandson, and a friend had spent hours clearing snow from my driveway and the walk to my door.

Locally, an elderly man died Friday when he got stuck on a side road and tried to walk home. His body was found in a snowdrift. Nationally, an eighty-eight year old Louisiana man with Alzheimer’s wandered from his home in search of the bathroom to change his clothes. His jeans and shirt were found outside the door, and a few hours later his body was discovered. Perhaps one of the most disturbing parts of the story is that although the man had been in a nursing home a few years ago, he seemed to get “better” and was moved back home. Inclement weather is dangerous for anyone, but for confused people it can be deadly.

Here we are a week later and snow is still piled up along driveways and roadways. The only bright spot in this entire scenario is that Punxsutawney Phil did not see his shadow which means an early spring.

I hope that Phil’s prediction isn’t just true for Pennsylvania since the sun was shining bright in Missouri the day after the blizzard—Ground Hogs Day, of course. Spring cannot be too early for me! I’m tired of the snow and the cold weather, but it seems like the snow and cold aren’t ready to move on just yet. The forecast is for more snow and cold this week before a warming trend next weekend.

The calendar, like life, has its seasons and some are more challenging than others. One thing that can be said for the blizzard, it reinforced how blessed I am to be surrounded by family and friends. Thanks to them, I’ve come through the snownami unscathed, although, I admit it wouldn’t hurt my feelings if another “fifty year storm” holds off for at least that long.

The Boomer Report: Grim Reading

I woke up at 3 a.m. this morning with my mind spinning about another storm on the horizon, something important I should have done Friday, and my escalating To-Do List. Today should be a fun day for my sisters and me to celebrate Mom’s 84th birthday. My alarm was set for 7 a.m.—late enough to catch up on my sleep, but early enough to meet up with my family. I tossed and turned for about an hour and decided to just get up.

Might as well go for the middle of the night awakening whole heartedly, so I put on a pot of coffee and sat down to catch up on some reading. I read the latest Missouri Conservation Magazine cover-to-cover. Then, as the first streaks of dawn lit up the sky, I turned on my netbook to read the Alzheimer’s Association’s Boomer Report I had downloaded a few days ago.

As a longtime advocate, the information in the report was familiar to me. Each year we get an advocates guide that tells us that Alzheimer’s is the 6th leading cause of death, and that it is the only disease in the top 10 without prevention, treatment, or hope of a cure. As an advocate, I also knew that the government’s research investment in Alzheimer’s is $480 million per year compared to $3 billion for HIV/AIDS, $4 billion for heart disease and $6 billion for cancer.

This report is written for boomers. We boomers are the pragmatic generation that never wanted the truth sugarcoated. We grew up with the threat of nuclear annihilation and bought the records to make Barry McGuire’s “Eve of Destruction” a #1 Billboard hit.

It takes a lot to scare a boomer, but the title of this report—Generation Alzheimer’s: the defining disease of the baby boomers—seems pretty scary to me. I find the statistics alarming now, but when you see what they will become without a cure it offers up a bleak future to 10 million of us boomers.

Caring for a person with Alzheimer’s is exhausting, emotionally draining, and expensive. For every $100 the government spends on Alzheimer’s research, they spend $25,000 on care.

With the economy, $172 billion spent on caring for people with Alzheimer’s seems like a strain on the budget, but it comes breaking apart at the seams with a projected $1 trillion cost by 2050. A person with Alzheimer’s costs Medicare three times more and Medicaid six times more. Only 4% of 80-year-old Americans need long term care, but when a person of that age group has Alzheimer’s, 75% of them will require nursing home care.

Yes, I knew all the statistics so I’m not sure why I found the report so depressing today. Maybe it’s because as a boomer I know how we learned to overcome our fears and tended to think ourselves invincible. At least we always thought that maybe bad things happened to other people while we continue to cruise through life on a wish and a prayer.

Maybe my depression comes from the thought that although millions of us know how life changing Alzheimer’s is for the person with the disease and their family circle, we cannot motivate enough advocates to get an increase in research dollars. We boomers have made an impact on the world throughout our entire lives. We strained the education system, we flooded the job market, and now we threaten to bring on an economic and emotional crisis as we age.

Rather than being the generation defined by Alzheimer’s, we could be the generation that defeats Alzheimer’s. It isn’t going to happen through protest songs. It’s going to happen only if we have enough advocates to take up the banner and deliver the message to congress as often as it takes. We boomers need to take advantage of our numbers to brighten the future. We have to pool our stubbornness and stick-to-itiveness until we get the job done.

Copyright © Jan 2011 L. S. Fisher
http://earlyonset.blogspot.com

Jan’s Story: Embrace Life

On this snowy Sunday morning, I sat in my pajamas watching the CBS News Sunday Morning when Barry Petersen began to tell Jan’s story. They showed archived clips of beautiful, vivacious Jan reporting the news both in the studio and on location. Now at fifty-five, Jan has advanced Alzheimer’s and lives in assisted living.

Jan’s speech is hesitant, and her words travel in a circular pattern of incomplete thoughts and repetitive phrases. She talks to the woman in the mirror and wants her to go to lunch with her. When she realizes the woman isn’t invited, she says goodbye to her and walks away.

Seeing the human story of Jan makes the statistics come to life. Approximately 250,000 families have a loved one with early onset Alzheimer’s. When the onset of the disease occurs before a person is sixty-five years old, it is considered early or younger onset.

Barry interviewed another woman with early onset Alzheimer’s. Pat, fifty-two, was diagnosed six years ago. “My time’s getting shorter,” she said. She is determined to enjoy life while she can. She is adamant that when she enters into the late stages she doesn’t want her beloved granddaughters to visit her. She wants to spare her grandchildren the heartbreak of visiting a grandmother who does not recognize them.

The disease changes family dynamics, and children and spouses begin to feel like parents to their loved ones. Caregivers learn the meaning of unconditional love when their loved ones become mired in a disease that erases memories of closest family members.

Barry explains why Jan’s story is so personal to him. He and Jan were married in 1985 while she was a reporter. “She embraced each new city as an adventure,” he said. Jan sits on the patio and when Barry arrives, she hugs him. They sit and Barry asks her about her husband. “I do love him,” Jan says in halting words. She continues to speak of her husband in third person not recognizing Barry as the husband she vaguely remembers. When Barry asks Jan for her husband’s name, she stammers and then pronounces that he is “Mr. Happy.”

Barry went through the steps of thousands of caregivers before him—he took care of his wife at home, then hired caregivers to help, and finally placed her in assisted living.

The story concludes with Barry introducing Mary Nell, a widow that has become his companion. Mary Nell knew a relationship with Barry encompassed a relationship with Jan and said she could not love Barry without loving Jan. They have become a family of three.

Jan was a person who loved life and lived it to the fullest. Barry has written Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s to honor the woman he has shared his life with, and who has been his life, for more than twenty-five years.

Barry realizes that many people will not understand his relationship with Mary Nell and how loving her does not diminish his love for Jan. “To embrace life, I must go on,” Barry said at the conclusion of the segment.

Copyright © Jan. 2011 L. S. Fisher
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