Vietnam Veterans: PTSD and Dementia

It always seemed a little strange to me that my level-headed and intelligent husband developed dementia at such a young age. I always wondered how much his dementia had to do with his tour in Vietnam.

Years after the fact, it is now presumed that anyone who served in Vietnam was exposed to Agent Orange. There was a time when you had to prove exposure and that was not an easy task. Jim said that while they were in the jungle, they were sprayed with Agent Orange right along with the foliage. After the presumption of exposure, certain diseases among Vietnam veterans were considered to be service connected. Dementia was specifically excluded.

Jim had post-traumatic stress disorder (PTSD) before it was ever talked about. His Vietnam service left him wounded emotionally. Vietnam lived in his nightmares, in his breakdowns, depression, and through flashbacks. Vietnam was a parasite that clung to him and never lost its grip as it tried to suck sunshine from his soul and replace it with dark shadows.

Studies have linked PTSD with an increased risk of Alzheimer’s or dementia. Prolonged or acute stress damages the hippocampus, the part of the brain that controls memory. Veterans with PTSD have a 77% greater chance of developing dementia than veterans without PTSD.

The VA acknowledges a third of Vietnam veterans struggled with PTSD, and some of those lasted a lifetime. They don’t talk so much about how many lifetimes were cut short by alcoholism, suicide, or dementia.

The Internet has conflicting reports about Vietnam veteran mortality. They range from reports that Vietnam veterans are dying at an alarming rate to other reports that their death rate is only slightly higher than the rest of the population. The truth probably lies somewhere in between. It seems that of the Vietnam veterans I know, an alarming number of them died young. I know that Jim died much too young.  

Jim was haunted by Vietnam. He struggled daily to relegate his tour of duty to the past. It was a personal victory of heart over mind when he enjoyed his family and his music. Playing his guitar was his therapy.

Did Vietnam cause Jim’s dementia? I think it did. Is there proof? There never was enough to convince the VA. We couldn’t even prove PTSD because by the time we knew it was considered a reason for disability, Jim had dementia and could not tell his story. It didn’t matter than I had lived with him all those years and supported him through his mental collapses. It didn’t matter that as his current memories faded, the older memories haunted him even more.

The turbulent Vietnam war years did nothing to help returning veterans get their lives back. They were stigmatized and categorized in a way our military had never been before that war. The only thing that brings me comfort is that Jim did finally come to grips with Vietnam on a certain level. He wore a hat that said “Proud to be a Vietnam Veteran.”

On Memorial Day, I placed flowers in front of the columbarium. Jim would have loved the rows of flags placed in front of the wall. He loved his country, and I’m glad that he finally found pride in serving the USA.

Source: http://www.elementsbehavioralhealth.com/trauma-ptsd/ptsd-in-veterans-linked-to-dementia-in-later-life/

Copyright © May 2012 L. S. Fisher

http://earlyonset.blogspot.com

Older American’s Month: Never Too Old…

I just read an article about May being “Older American’s Month” and the theme is “Never too old to play.” I really like that theme and the message it sends. This made me wonder—how did I get older without knowing May was MY month? After all, I’ve been hearing from AARP for a long time now and it seems like every funeral home within a hundred mile radius has me on their mailing list.

From the article, I made my way to the website. I had to make sure that this wasn’t just a joke or something. The site has many cool things on it, including “The Best Ways to Play.”

·         Get Physical—okay, I admit that I dropped my gym membership at just the time when I needed it most. That’s how it goes. Once I got caught up in the endless cycle of being involved with three or four organizations, I just flat didn't have time to go to the gym. Now, my exercise consists of toting around several bags of papers, books, files, and reference materials. It just gets heavier and heavier.

·         Brain Activities—I pass this one with flying colors. My brain is so active that I can’t shut it off. I’m always thinking, planning, learning.

·         Bridge the Generation Gap—What gap? I’ve always loved people of all ages. I enjoy spending time with my grandkids, kids, aunts, uncles, and my mom. My friends are multi-generational.

·         Get creative—seriously? I write.

I have a pretty good handle on this older American thing. I have no shame when it comes to getting a senior discount.

At our Friendship Lunch yesterday, we had quite a discussion on the advantages of joining AARP. “Don has a lifetime membership,” Cindy said. “I really like the magazine.”

“I’ve been getting offers and I’m thinking about joining,” said Brenda, who just recently squeaked past the minimum age for AARP.

When we get older, we start to realize that we are not invincible and the obits are not our friends. We see former classmates, cousins, friends, and family fall to diseases that become more prevalent as we grow older. We cross our fingers and pray that cancer, heart disease, and Alzheimer’s stay away from us and those we love. The knowledge that we are mortal and vulnerable makes each pain free, sunshiny day more precious.

It is as if I’m on a carousel going around in circles with each day pretty much like the one before and strikingly similar to the one ahead. There is comfort in knowing that life is whirling along on an even keel. Anytime that life glides along in a smooth circle is a time to relax, enjoy the ride, and play.

Getting older should be a time when we can be more of ourselves. As my mother recently said, “I don’t care what other people think of me anymore. It just isn’t important.” Yay, Mom! We are all better off when we reach that turning point in life when we can live life the way we want to live it and not the way others want us to live it.

When we get older, we should be able to play to our hearts content. We are never too old to play, or to be young. No matter how old the calendar says I am—or how old I may look—I’m still young on the inside. Have you noticed how the bar for what is considered older, just keeps getting higher? Is today’s 60 the new 40?

It’s time to catch up on all those things we never had time for when we were younger. It’s  time to finish that bucket list. Maybe it’s time to join AARP. After all, we older Americans are all about discounts and bargains.

I scoff at people who indicate that I'm over the hill. All I have to do to feel younger is turn the XM radio to the 60’s channel. When I hear that music, I’m a teenager inside with a world of possibilities and experiences ahead of me. Age, after all, is only skin deep.

Copyright © L. S. Fisher May 2012

http://earlyonset.blogspot.com

Alzheimer’s Advocacy Frontlines

Roberta Fischer, Rep. Hartzler, Linda Fisher

If we want to declare war on Alzheimer’s, advocates and researchers form the frontlines. What’s at stake in this war? The lives of 5.4 million Americans living with Alzheimer’s disease will be lost. Who lies within the danger zone? One American in eight over age sixty-five has Alzheimer’s, and those who live to be eighty-five and older have a fifty percent chance of developing the disease.  

The war against Alzheimer’s begins with a battle called the Alzheimer’s Advocacy Forum. Our mission is to carry a strong message to our legislators to implement the National Alzheimer’s Project Act (NAPA) and co-sponsor the HOPE for Alzheimer’s Act. We are the faces and the stories of a heartbreaking disease that currently has no effective treatment or cure.

My sister Roberta and I traveled to Washington DC to join more than 700 advocates to speak with the VOICE of hope and reason. This was my twelfth consecutive trip, and you would think by now, I would just leave it to others. My reminder of why this is so important to me was reinforced by a side trip to the Veteran’s Cemetery on the way to the airport. I placed flowers in front of the columbarium to mark the seventh anniversary of Jim’s passing. I paused to reflect on the Alzheimer’s type of dementia that robbed Jim of not only his life, but also ten years leading up to his death.

Kathy and Sarah at Candlelight Rally 2012

Each year I see familiar faces, especially my good friends Kathy and Sarah, who have run the Alzheimer’s gauntlet from beginning to end. Then there are new faces of caregivers and people with Alzheimer’s who are reeling from the diagnosis and trying to cope with the drastic changes Alzheimer’s has made in their lives.

One of the early events each year is the candlelight rally. The event was scheduled to be at the Capitol Building, but weather forced it indoors. After stirring music and testimonials from former Congressman Moore and other advocates, we lit glow sticks and held them high in remembrance of our loved ones and to honor the caregivers and persons living with Alzheimer’s.

The roll call of the states was filled with exciting progress made in all fifty states. After a full day packed with research updates, advocacy training, and discussion of our federal priorities, we finished the day with the National Alzheimer’s Dinner where Meridith Viera served as Master of Ceremonies. The Profile in Dignity Award was presented to Pat Summitt, University of Tennessee Women’s Basketball Head Coach Emeritus, and her son Tyler. After a humorous film showing Pat motivating her team, she invited us to join a giant team to fight Alzheimer’s, and, of course, losing is not an option.

On Wednesday, we donned our purple sashes and armed with facts, figures, and personal stories, we headed out to storm Capitol Hill with our message. We asked for the resources to support NAPA. For the plan to be successful, we need a two-pronged approach. (1) The plan needs to include benchmarks that allow legislators to evaluate progress, and (2) resources of $100 million annually for Alzheimer’s research, education, and caregiver support.

In addition to NAPA, we asked for co-sponsors for the HOPE for Alzheimer’s Act. The Hope Act focuses on three key areas: diagnosis, care planning services, and medical record documentation.

I know from personal experience, the vital importance of these three areas. Because Jim was so young, it was hard to get a diagnosis. Once we knew he had dementia, care planning for him and support for me were key factors to consider. This Act allows the caregiver to discuss options with or without the person with dementia present. I kept record of Jim’s treatments, other medical conditions, and test results and provided the document to every specialist that treated him. For those who don’t have someone to do this, medical documentation would ensure the entire medical team was aware of all health issues.

After our visits, we entered the Capitol Building to see the House in action. As we went through security, the guard handed me my purple Alzheimer’s Association bag, and leaned close to whisper, “Thank you for doing such a good job.” As I smiled at him, I realized he knew the pain of having a loved one with Alzheimer’s.

Seven hundred Advocates made a commitment give a VOICE to Alzheimer’s research and care. In this war against Alzheimer’s, our VOICEs are indeed mightier than the sword.

Copyright © May 2012 L. S. Fisher

http://earlyonset.blogspot.com

Conversation with a Cab Driver

My sister and I rolled our suitcases down the sidewalk to the designated area to catch a cab to our hotel. We had come to DC to ask for resources to support NAPA (the National Alzheimer’s Project Act) and seek cosponsors for the HOPE (Health Outcomes, Planning and Education) for Alzheimer’s Act.

“What brings you to DC?” the cab driver asked after loading our luggage into the trunk. He spoke with an accent, which is the norm for Washington DC taxi drivers.

“We’re here for the Alzheimer’s Forum,” I replied.

“Is it for research?” he asked.

“We’ll hear about research,” I said, “but we are here as advocates.”

It seems that everywhere I go, I run into someone who has a personal experience with Alzheimer’s.

“My mother has Alzheimer’s,” he said. “Some days she seems okay, but other days she makes up things. She said that my sister and her husband got a divorce, and it wasn’t true.”

“That can happen,” I said. “People with Alzheimer’s get confused and think something is real when it isn’t. Sometimes they think someone is stealing from them.”

“Oh, yes,” he said. “My mother thinks that people are stealing from her.”

“Well,” I said, “she probably misplaces things and can’t remember where she put them so she thinks someone has stolen them. Of course, there is always the chance that someone could be stealing from her, so you want to make sure it isn’t true.”

“They don’t have a cure for Alzheimer’s, do they?” he asked.

“No, they sure don’t. That’s the reason we are here. We talk to our legislators about research funding.” Alzheimer’s deaths increased sixty-five percent while deaths from other major diseases declined.

Once again, advocates from across the United States were at our nation’s capitol trying to rally our senators and representatives to fund Alzheimer’s research.

 “My husband had an Alzheimer’s type of dementia,” I said. “It wasn’t Alzheimer’s but the Alzheimer’s Association helped me so much that I keep coming to DC each year.”

 The cabbie continued to ask questions about the disease affecting his seventy-seven-year-old mother. He told us his mother had come to the US from Somalia.  

“What is the difference between Alzheimer’s and dementia?” he asked

“You can think of dementia like an umbrella and beneath that umbrella are a lot of different diseases that cause dementia. Alzheimer’s is the main cause of dementia, but there are a lot of other diseases that can cause dementia, like Lewy Body disease, vascular dementia, or frontotemporal dementia.”

“Like an umbrella.” He nodded his understanding.

“Yes,” I said. “Dementia is a general term for people with memory loss and who have trouble performing daily activities. Different conditions cause dementia symptoms, including some that are reversible. That’s why it’s important to have a complete medical workup.”

It always concerns me that someone will assume his loved one’s memory loss is Alzheimer’s when it might be a condition that can be treated.

“The doctor said my mother has Alzheimer’s,” he said. “He said she didn’t have thyroid or a vitamin deficiency.”

“It’s good they checked those things out,” I said. We were pulling up to the hotel. “Be sure to contact your local Alzheimer’s Association chapter. They can help you cope with the changes ahead.”

We settled the tab and as I stepped from the cab, I told him, “I wish you the best with your mom.” He smiled and thanked me.

As I closed the door, my heart went out to the cab driver who had shared a slice of his life. His story is repeated  millions of time throughout this country and has a predictable ending, at least for now. Maybe someday I can share happier news with strangers I meet.

Copyright April 2012 by L. S. Fisher

http://earlyonset.blogspot.com

Midnight Thunder and Music

The April showers of a few nights ago morphed into a thunderstorm. The booming thunder awakened me from a deep sleep. There’s something about the sound of thunder that leaves me feeling vulnerable, and a little sad. I turned over to look at my clock and it was flashing on and off, off and on.

Since I didn’t have to work the next morning, I didn’t bother to set the clock and just went back to sleep. Thunder boomed closer, and as I tossed in the other direction, I heard music.

Music? Where could that be coming from? I thought it might be my cell since I had left it in my purse, but the music kept playing. I couldn’t hear the tune well enough to tell what it was, but I knew there was no reason music would be playing in the middle of the night.

The sound of music was replaced with rolling thunder. As I listened, the storm got louder and louder, rain pelted against the window, and I forgot about the music.

I used to be scared of storms, and Jim would hold me close when thunder came in the night. He was fearless and tried to convince me there was no reason to be afraid. That argument never gave me comfort when tornado watches turned to warnings.

The downside of spring is the storms that have passed through my life. Our journey through the land of dementia ended on April 18, 2005 when Jim left this world. Death rolled through our lives with the force of a tornado leaving an aftermath of eerie stillness behind.

You would think with the devastating tornadoes last year, I would still be afraid. It was only the noise and not fear that kept me awake during the storm Thursday night. As the storm faded into the night, I once again heard the faint sound of music.

Okay, it was obvious that I wasn’t going to sleep until I figured out where the music was coming from. I got up out of bed and wandered through the house, following the sound. In the hallway, I recognized the melody: “Winter Wonderland.” A few more steps, and I knew it was Brad Paisley singing. I crossed the room and walked to over to the docking station and turned off my iPod. I had to smile at a Christmas song competing with a spring thunderstorm.

On my way back to bed, I tried to reason how the iPod started up on its own. So maybe a jolt of electricity triggered the on button.

Or maybe, there wasn’t a logical explanation and it was a message. A reminder that storms pass, and music can chase away the most ominous moods.

Copyright© April 2012 by L. S. Fisher

http://earlyonset.blogspot.com  

Sitting on the Front Porch

It seems that every minute of the day fills me with an anxious feeling that I should be working on a project, or two, or three. Sometimes I feel like I’m juggling burning batons of responsibility and if I don’t keep tossing my hair is going to catch on fire.

This weekend was different. After all, it was a holiday weekend, and one of those rare opportunities when my entire family was under my roof. I figured emails, book orders, volunteer work, and that nagging little voice in my head that keeps saying, “you’re getting farther behind,” could just take a rest.

After breakfast of biscuits and gravy, we had an impromptu Easter egg hunt for the two youngest grandkids. Since they were dressed in their Easter outfits and ready for church, we hid the plastic eggs in the living room.

During services this morning, the pastor asked the questions, “How many doors have you gone through this morning?” I’ll have to admit, I’ve often thought of the symbolism of doors. Jim always likened death to closing one door and opening another. But physical doors—had I ever thought about that? How many doors do I go through in the course of a day?

This house that Jim and I built has a lot of doors. I pass through them time after time. It seems that as I get older, I’m passing through them even more often when I realize I’ve forgotten something in another room. In addition, this morning, I was almost to my car when I remembered my camera. I into the house, picked up the camera and passed through the same door to go outside.  

This afternoon, I spent about an hour working on an upcoming presentation. With the sun shining brightly outside, I turned off the netbook and made a pitcher of tea. I poured a glass and walked through the door to join my son, Eric, and daughter-in-law, Shawna, on the front porch.

“This is a perfect day,” I said. The thermometer showed nearly seventy degrees, and there wasn’t a cloud in the sky. We walked out into the yard to enjoy the warmth of the sunlight. Birds chirped, squirrels barked, and a crow cawed loudly before he flew across the yard in a straight line toward the woods. The phrase ran through my head, “as the crow flies.” We talk about that when we are trying to describe not how we would make the journey, but the distance without those normal boundaries. I noted that the crow actually flew in a straight line.

We meandered out onto the gravel road and started walking.

“You used to walk the dogs to the corner nearly every day,” Eric said.

“Yes, I did,” I said thinking about Bubba the huge, furry mixed-breed dog and Sherry the German shepherd. Both dogs died years ago. Bubba died from old age and Sherry died from grief a few months later.

After our walk, we sat on the front porch visiting and enjoying the peace and quiet.

Sunday was so unlike Easters of the past. When Jim’s parents were living, their house and yard overflowed with family. The little kids would be kept inside while the older kids and adults hid hundreds of eggs—plastic eggs, hard-boiled eggs, peeps, chocolate foil wrapped eggs. The kids would  rush outdoors with the biggest basket they could carry to gather Easter Goodies.

This Easter, we watched Katrina the cat chase a lizard. We sat and visited like the old days except that the ding of cell phones interrupted the conversations as friends near and far checked in via text messaging, email, and Facebook.

After a few relaxing hours spent on the front porch, I carried the holiday feeling throughout the evening. I didn’t turn on the netbook and answer the annoying email I ignored yesterday. I didn’t work on the spreadsheet, place any orders, worry about my committee lists or corporate sponsors, or my taxes for that matter.

A holiday should allow time to sit and contemplate the significance of how many doors I pass through in the course of a day. And on Easter Sunday, I enjoyed the gift of a perfect day when I indulged in the simple pleasure of sitting on the front porch with family.

Copyright April 2012 by L.S. Fisher

http://earlyonset.blogspot.com

Grant to DIAN for Early Onset Alzheimer’s Research

Alzheimer’s is a worldwide disease, and the Dominantly Inherited Alzheimer’s Network (DIAN) is focused on familial Alzheimer’s that typically affects people in their thirties, forties, or fifties. The Alzheimer’s Association awarded a $4.2 million research grant to study this form of young onset Alzheimer’s.

Studying hereditary Alzheimer’s can speed up discovery of effective treatments, or hopefully, prevention. Although inherited Alzheimer’s is rare, it is the only truly predictable form of the disease. When a parent has the genetic mutation that causes hereditary Alzheimer’s, children have a 50/50 chance of developing the disease. Genetic testing can determine whether a person will develop inherited Alzheimer's.

The Alzheimer’s grant will be used to conduct experimental drug therapies internationally. The participants will be those who are destined to develop Alzheimer’s, but do not exhibit symptoms. The hope is to develop therapies that prevent the disease from happening.

The eleven groups that make up the DIAN network are following 150 participants with familial Alzheimer’s. Researchers have discovered that measurable brain changes can appear as much as 20 years before symptoms. Randy Bateman, MD, and associate professor of Neurology at Washington University School of Medicine, St. Louis, Missouri, explained the importance of a network of research facilities. “No single research center has sufficient numbers of people with dominantly inherited Alzheimer’s to conduct a large enough study to generate meaningful data.”

I met Randy in Washington DC several years ago when he attended the Alzheimer’s Action Summit and joined our Missouri group of advocates to visit our senators. Randy was definitely an asset to our group. We had our own researcher to share first-hand knowledge about treatments coming down the pipeline.

Although the genetic form of Alzheimer’s affects only 1% of people with the disease, the ability to study this group before onset gives a sliver of hope to all people with Alzheimer’s. Anything that will speed up the time it takes for Alzheimer’s disease therapy to become available to the public is good news.

Life is truly heartbreaking for those families dealing with familial Alzheimer’s. Even the ones who escape the disease through genetic roulette may have a parent, aunts and uncles, cousins, or siblings who develop the disease. Sometimes the ones who do not develop the disease spend a lifetime caring for their relatives who do.

I recently received an email from  Jessica whose husband tested positive for familial Alzheimer’s. He has not yet developed the disease, but she is already worried about him and her children’s future. The emotional turmoil of that family is immeasurable.

My friend Karen took loving care of her husband Mike throughout his battle with inherited Alzheimer’s. He passed away in February, and now she is at loose ends. “I thought I was ready, but it really hit me hard,” she said. Yes, Karen, I know exactly how you feel. I don’t think we can ever be ready to let go. Caregiving becomes such a part of life that we adapt to the new reality and that becomes our way to put love into action.

Kudos to the Alzheimer’s Association for providing research dollars to study this heartbreaking disease. My sincere wish is that Randy and his cohorts will be able to use this research to find a way to prevent Jessica’s or Karen’s children from developing inherited Alzheimer’s.

Copyright © March 2012 L.S. Fisher

http://earlyonset.blogspot.com 

Not According to Plan

I looked forward to St. Patrick’s Day and expected a day of good old Irish fun. Saturday would be a time to kickback and make the most of being Irish for a day. After all, I only get to wear my green nail polish twice a year—Halloween and St. Patrick’s Day. I figure at that rate, the bottle will last until I’m at least 150.

My plans changed when Uncle Jimmy passed away. His funeral was Saturday in Versailles where my mother lives. While I was there, I planned to visit Mom and then drop by the nursing home to see my brother Donnie.

The day started out beautifully. I left home dressed in green, of course, and wearing sandals. Yes, sandals. Here winter isn’t even officially over, and I take off for the day in open toed shoes.

The luck of the Irish wasn’t riding in the car with me. The closer I got to Versailles, the darker the sky. Rumbles of thunder, and streaks of lightning were followed by a downpour. The wind picked up, driving the rain with the force of a robo wash. I pulled off to a side road while first rain, then hail, pelted my car.

The storm passed, as storms always do, and I drove on. The bittersweet nature of funerals is that although it is a sad occasion, it is also family time. Many hugs later, the services began, and I remembered happier days.

Uncle Jimmy was a family recording historian, just like his namesake, my husband Jim. Several years ago, they took over my living room for weeks while Uncle Jimmy used a projector to roll his old 8 mm film and Jim videotaped the old home movies. They laughed and narrated, telling stories about the people pictured on the grainy black and white film.

After the funeral, Mom and I visited Donnie who was not having a good day. The nurse injected his medication into the feeding tube, and he drifted off to sleep. My mom sat on the edge of his bed, tears streaming down her face.

As we walked down the hallway, I said, “Mom, I think you need to do something to take your mind off this for a while. Why don’t I take you to the boat?” My mom loves to go to the casino and it always cheers her up.

This time, she just shrugged and said without enthusiasm, “Oh, if you want to go.”

I told Mom to call Aunt Lebetta and ask her to go. “She needs cheering up too.” My cousin Bonnie had just been diagnosed with lung cancer and further tests showed tumors in her brain. After spending the morning at the hospital, Aunt Lebetta was inconsolable about the bad news that only seemed to get worse.

 Mom called. “She just doesn’t think she can go.”

“Tell her that you ‘old hairpins’ need to do something to get your minds off your problems,” I said. “Reta would expect me to do that.” My cousin Reta coined the nickname “old hairpins” for her two beloved aunts.

“Bonnie is hallucinating,” Aunt Lebetta said when she got in the car. Bonnie told them that her dad, Uncle Melvon, had come to see her and told her not to be afraid. Bonnie talked about seeing butterflies.

“You know what the butterflies are, don’t you?” my mom asked. “Melvon saw a butterfly come out of its cocoon once, and he said that is what death would be like—you come up out of your shell and fly away a beautiful butterfly.”

After a few hours at the casino, my mom and aunt showed me their winning tickets. Since they seem to play until all the money is gone, I confiscated their tickets. “I’ll give these to you when we get ready to walk out the door,” I said handing them each $20. “When this is gone, we’re leaving.” They walked out with smiles on their faces, worries pushed aside for a few moments.

Today, the message at church was about the tribulations of Job. Our minister told a story about a man who asked a good friend with terminal cancer, “How does it feel to know you’re dying?”

The friend answered with a question, “How does it feel to think you are not?”

Driving home from church, I thought about how unfair life can be. Nobody plans to have a terminal illness like Alzheimer’s or cancer. Life itself is terminal and just doesn’t go according to plan. No matter how Job-like life is, we can take comfort knowing that when the time comes we will rise up out of our ugly cocoons and emerge as beautiful butterflies.

Copyright © March 2012 by L.S. Fisher

http://earlyonset.blogspot.com

The High Cost of Alzheimer’s Disease

The latest Alzheimer’s Association Fact Sheet gives hard data about the high cost of living with Alzheimer’s disease. The Fact Sheet begins with the statement:  The graying of America means the bankrupting of America – and Alzheimer’s is a major reason why.

In 2012, caring for Alzheimer’s will cost $200 billion. Medicare and Medicaid take the brunt of these costs. Medicare bears the largest share, $104.5 billion, and Medicaid is in second place with $35.5 billion.

Those who have a loved one with an Alzheimer’s type of dementia know that although the government looks like the biggest loser on paper, families take a harder hit with both emotional and financial tolls.

More than 15 million caregivers provide 17 billion hours worth of unpaid caregiving. The monetary value of this caregiving is $210 billion—the emotional cost cannot be measured.

Alzheimer’s is not just an expensive disease; it is costly. The highest costs are not in dollars, but in broken relationships as families and caregivers adjust to a new reality.

As hard as it is to provide care for a loved one with Alzheimer’s, 60 percent of caregivers find emotional stress to be the hardest part of caregivng. A third of caregivers report being depressed. Alzheimer’s caregivers have increased health problems directly related to being a caregiver. Nationally, this translates into an additional $7.8 billion health care costs for the caregiver.

Have you hugged a caregiver today? Better yet, have you offered help, and meant it? I’m not talking about “If there’s anything I can do…” without following up to find out what you really can do to help. I’m referring to watching a loved one for a few hours to relieve the primary caregiver. Family members should work out a schedule so that each member can contribute to the wellbeing of both the caregiver and the person with dementia.

A woman I met a few years ago thought it was totally her dad’s responsibility to look after her mother. After all, he was the one who promised to care for her “in sickness and in health.” She stubbornly refused to help her dad. To be perfectly honest, I felt like shaking her, but instead I encouraged her to take on more responsibility for her mother’s care. She did finally help after her dad was hospitalized from the stress of caring for his wife.

I’ve seen families pull together for the good of the person with Alzheimer’s. It takes more than one person to provide 24-hour-a-day care. I was lucky that Jim’s family, my family, and our family were available and willing to help. I could not possibly have kept Jim home as long as I did without this family support.

Not all families work as a team, some are shattered by arguments over caregiving, or even whether their family member has dementia. Denial is common and it is hard to acknowledge that someone you love could have a disease that could erase memories.

  

No matter how drastically a person with dementia may change, they can still feel your love. As hard as being a caregiver is, and although it may seem a thankless job at times, your reward comes from knowing that you’ve done your very best. That is something that will stick with you long after your loved one is gone, and you can look back with no regrets.

Copyright © March 2012 by L.S. Fisher

www.earlyonset.blogspot.com

Memory Day – Capitol Here We Come

Wednesday was Memory Day and hundreds of advocates converged on the Missouri State Capitol. After being briefed on the issue we were to discuss with our legislators, we donned our purple Alzheimer’s Association “beauty queen” banners and set off to deliver packets.

My favorite part of Memory Day is meeting with other advocates who have become my friends over the years. Along with people that I expected to see, I noted a familiar face in the group surrounding Linda Newkirk, the executive director of the Mid-Missouri Chapter.

“Aren’t you in the wrong group?” I asked Evelyn a fellow Business Women of Missouri member.

“I’ve been involved in the walk for years,” she said as I gave her a hug. This wasn’t the first trip to Memory Day for either of us, but somehow this was the first time we had noticed each other.

Before heading out to our appointments, we helped honor some members of our state government who have moved our cause forward. First up was Lt. Govenor Peter Kinder who served as the chairman of the Missouri Alzheimer’s Plan Task Force. An executive summary of this plan was included in the packet for the legislators. This report crafted by the 19-member task force gives some of the highlights of the past year.

The Missouri Alzheimer’s chapters awarded Leadership of the Year Awards to Senator Kurt Schaefer and Representative Margo McNeill. Patti, Janie and I had to leave before the ceremony ended to be on time for our first appointment.

We had only one priority this year: increase the Alzheimer’s Service Grants to $300,000. In 2006, we received $539,000. This was reduced 25% in 2010, and this year’s budgeted amount is $150,000. These grant funds were used by the Missouri Chapters to provide respite care for families with loved ones living at home.

I can speak from experience about the importance of respite funding. The only financial help we qualified for was respite from our local chapter. Jim was too young to qualify for any of the senior services that are in place to help the elderly.

Most of the legislators were sympathetic to our request to reinstate Service Grants, but as one aide put it, “Tell us where the money is going to come from and we might consider it.” I’m sure they have groups knocking on their door every day asking for more funding, or at least to not have funding cut. It seems like senior services are often the first items to hit the chopping block.

I was more impressed with my representative, Calib Jones, who took time to sit and talk with us, although he was on his way to a committee meeting. After we explained the shortfall, he said, “I’m not on the budget committee, but I’ll certainly talk to someone who is.”

It would seem to be a logical choice to fund respite to help caregivers keep their loved ones at home longer. Sixty percent of Missourians placed in nursing homes depend on Medicaid to pay for their care. Isn’t it more logical to spend $2.45 per year for each of the 110,000 Missourians who have Alzheimer’s than it is to spend on the average more than $51,000 per person for nursing home care? With nursing home care calculated at roughly $140 per day, if 307 people delayed going into a nursing home for one week, the state would break even.

After a whirlwind of visits, we went outside and lined up on the steps for a photo op. The strong wind not only sent hair flying out of control, but nearly gusted some of the advocates right off the steps.

I was tired after the visits and my feet hurt. On the walk back to my hotel room, I thought about how necessary it is to get boots on the ground for such an important service. Hopefully, the economics of providing respite care make sense to the legislators, and when they vote on the budget they will remember purple banners and the advocates who came to visit on Memory Day 2012.

Copyright © March 2012 L. S. Fisher

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