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
Sunday, January 30, 2011
Sunday, January 23, 2011
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
http://earlyonset.blogspot.com/
Tuesday, January 18, 2011
Memory Care: Welcome to the Neighborhood
One of the hardest decisions a caregiver will ever have to make is when to seek professional care for a loved one. The next big decision is where to find that care and what options are available. The only way to decide which option is best for you is to tour the available facilities and get a feel for how well your loved one will fit into the environment.
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I remember taking those tours. It was pretty much like interviewing for a job I didn’t want. It was much easier to see what was wrong rather than what was right. Even places that had good recommendations didn’t fare well under my jaded examination.
When I found places I thought might be acceptable, I put Jim on a waiting list. In 1999, Sylvia G. Thompson Residential Center was considering a new concept in Alzheimer’s care based on small groups of residents in a homelike setting. I looked at the plans and put Jim on that waiting list too. It so happened that the timing wasn’t right for the proposed unit at Sylvia G. Thompson and their project would be on hold for another decade.
Thursday night I went to an open house for the Memory Care unit at Sylvia G. Thompson Residence Center and the finished product is stunning. An atrium, complete with a sky-lights in a high ceiling, is the centerpiece of the Memory Care wing. The indoor gardens have water features and an abundance of plants that include an orange tree, a pea bush, and lush greenery to give the area an outdoor feeling. The walking track eclipses the atrium and is designed to give a wandering resident plenty of room to stretch his or her legs.
Wicker furniture is arranged in a separate sun porch area. On the night of the open house the view from the large windows looked like a scene from a winter wonderland.
Between the gardens comfortable arm chairs await those who just want to sit and relax. Tables are set up with games—checkers, dominos, and a jigsaw puzzle. The four corners are staked out as separate neighborhoods. Five residents will have their homes in each neighborhood. These five neighbors will live in rooms surrounding their living area, kitchen and dining room. The table seats six because a caregiver will be assigned to each neighborhood and will eat with the residents.
We may not be able to find a home with all the features of Memory Care at Sylvia G. Thompson, but we can choose a home that meets our loved ones needs at the time. As the disease progresses, those needs may change. In our case, Jim was in the first home for less than a year. Then, we found a long-term care facility in our hometown which made it easier for me to see him each day. We decorated Jim’s room with NASCAR and Kansas City Chief’s posters and bedspreads to reflect his interests. Jim lived at the second home for a little over four years until his death in 2005.
Jim was in an Alzheimer’s unit at both facilities. Both of these units became his home and his neighborhood while he was living there. I remember one stay in the hospital, Jim told me he wanted to “go home.” Since Jim was mostly silent, I knew he was good and tired of being in an unfamiliar place. When he was dismissed I took him back to the Alzheimer’s unit. He was satisfied to be on familiar turf, and to be back in his own neighborhood.
Copyright © Jan. 2011, L. S. Fisher
http://earlyonset.blogspot.com/
Sunday, January 9, 2011
President Signs National Alzheimer’s Project Act
Alzheimer’s Advocates have cause to celebrate with the presidential endorsement of the National Alzheimer’s Project Act (NAPA). Why is this Act so important and why have advocates put so much effort into a national coordinated effort to staunch the Alzheimer’s tsunami headed our way?
Aging baby boomers. Age is the No. 1 risk factor of Alzheimer’s and statically speaking the aging baby boomers drastically increase those at risk for Alzheimer’s. For the next 19 years, Boomers turn 65 at the rate of 10,000 per day! By 2050 the care cost of Americans with Alzheimer’s will skyrocket from the current $172 billion to $1 trillion.
What is the purpose of NAPA? According to my 2010 Alzheimer’s Action Summit Advocate’s Guide, NAPA will—
• Launch a campaign within the federal government to overcome Alzheimer’s disease.
• Establish an inter-agency Advocacy Council to create a coordinated National Alzheimer’s Disease Plan
• Comprehensively address the federal government’s efforts on Alzheimer’s research, care, institutional services, and home- and community-based programs.
• Accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s disease.
• Decrease health disparities by ensuring ethnic and racial populations at higher risk for Alzheimer’s receive much-needed care and services
In a time when we worry about the national debt, finding effective treatment or a cure for Alzheimer’s disease is more important than ever. For each person with Alzheimer’s, Medicaid costs are 9 times higher and Medicare payments are 3 times higher.
I have been an advocate for more than a decade. I don’t suppose I would have ever bothered to put so much time, effort, money, and passion into such a cause if I hadn’t personally seen the destruction caused by dementia. When Jim was diagnosed with an Alzheimer’s type of dementia, it changed both our lives, and the lives of our extended family and network of friends. Living with dementia is something our minds cannot comprehend if we don’t have that personal involvement.
The thought of having a 50/50 chance of developing Alzheimer’s for those who live to be 85 should be cause for concern for anyone who hopes to live a long, healthy life. Other rarer types of dementia show up in much younger people. Jim was 49 when he developed corticobasal degeneration. Younger people develop frontotemporal dementia and can develop Alzheimer’s, especially the hereditary form.
Alzheimer’s should concern all of us. It’s not just a disease of the elderly that involves some forgetfulness. It’s not a joke for late-night TV. It is a devastating, fatal brain disorder that is financially and emotionally draining for the entire family. It is a time of ongoing loss and sadness and a disease I wouldn’t wish on my worst enemy.
NAPA means this country has finally recognized that Alzheimer’s needs aggressive action tempered by a comprehensive plan. Unless we use adequate resources to find a cure for Alzheimer’s, we face our future with trepidation.
The Alzheimer’s Association credits 300,000 advocates for passing NAPA. More than five million Americans have Alzheimer’s. Think how much more progress we could make if each person with Alzheimer’s had one family member who became an advocate. If that were the case, the tsunami would be millions of people concentrating their efforts on finding a cure for Alzheimer’s now, not at some unforeseeable time in the future.
Copyright Jan. 2011, L. S. Fisher
http://earlyonset.blogspot.com/
sources: www.alz.org
Alzheimer’s Action Summit 2010 “My Experience, Our Voice” Advocate’s Guide
Aging baby boomers. Age is the No. 1 risk factor of Alzheimer’s and statically speaking the aging baby boomers drastically increase those at risk for Alzheimer’s. For the next 19 years, Boomers turn 65 at the rate of 10,000 per day! By 2050 the care cost of Americans with Alzheimer’s will skyrocket from the current $172 billion to $1 trillion.
What is the purpose of NAPA? According to my 2010 Alzheimer’s Action Summit Advocate’s Guide, NAPA will—
• Launch a campaign within the federal government to overcome Alzheimer’s disease.
• Establish an inter-agency Advocacy Council to create a coordinated National Alzheimer’s Disease Plan
• Comprehensively address the federal government’s efforts on Alzheimer’s research, care, institutional services, and home- and community-based programs.
• Accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s disease.
• Decrease health disparities by ensuring ethnic and racial populations at higher risk for Alzheimer’s receive much-needed care and services
In a time when we worry about the national debt, finding effective treatment or a cure for Alzheimer’s disease is more important than ever. For each person with Alzheimer’s, Medicaid costs are 9 times higher and Medicare payments are 3 times higher.
I have been an advocate for more than a decade. I don’t suppose I would have ever bothered to put so much time, effort, money, and passion into such a cause if I hadn’t personally seen the destruction caused by dementia. When Jim was diagnosed with an Alzheimer’s type of dementia, it changed both our lives, and the lives of our extended family and network of friends. Living with dementia is something our minds cannot comprehend if we don’t have that personal involvement.
The thought of having a 50/50 chance of developing Alzheimer’s for those who live to be 85 should be cause for concern for anyone who hopes to live a long, healthy life. Other rarer types of dementia show up in much younger people. Jim was 49 when he developed corticobasal degeneration. Younger people develop frontotemporal dementia and can develop Alzheimer’s, especially the hereditary form.
Alzheimer’s should concern all of us. It’s not just a disease of the elderly that involves some forgetfulness. It’s not a joke for late-night TV. It is a devastating, fatal brain disorder that is financially and emotionally draining for the entire family. It is a time of ongoing loss and sadness and a disease I wouldn’t wish on my worst enemy.
NAPA means this country has finally recognized that Alzheimer’s needs aggressive action tempered by a comprehensive plan. Unless we use adequate resources to find a cure for Alzheimer’s, we face our future with trepidation.
The Alzheimer’s Association credits 300,000 advocates for passing NAPA. More than five million Americans have Alzheimer’s. Think how much more progress we could make if each person with Alzheimer’s had one family member who became an advocate. If that were the case, the tsunami would be millions of people concentrating their efforts on finding a cure for Alzheimer’s now, not at some unforeseeable time in the future.
Copyright Jan. 2011, L. S. Fisher
http://earlyonset.blogspot.com/
sources: www.alz.org
Alzheimer’s Action Summit 2010 “My Experience, Our Voice” Advocate’s Guide
Friday, December 31, 2010
Reflections, or Through the Looking Glass?
The year end and the New Year are like a two-sided mirror, and I stand in front of it. In one side I see my own reflection, to see the other side I have to step through the looking glass. The decision is mine, do I continue to look at a reflection of the familiar, or take a leap of faith and step through to a new world?
What’s on the other side? Maybe it is just more of the same, but it could be a strange new world where nothing is familiar. It could mean that someone raised the stakes when I wasn’t looking, or it could be a wondrous land unlike anything I’ve ever known. Either way, through the looking glass means excitement and adventure—the reflection is security and safety.
But does the mirror reflect only the familiar? I’m reminded of an exercise in my Train the Trainer: Building Creative Caregivers workbook. The "Mirror Exercise" is designed to sensitize participants to how hard it is for a person with dementia do perform simple tasks.
The Mirror Exercise (from Building Creative Caregivers):
• You need a hand mirror, pen and paper
• Hold the pen in one hand and the mirror in the other, reflecting side out slightly above your shoulder
• Locate your hand and pen in the mirror
• Looking only in the mirror, draw a house on the paper
• After you draw your picture write your name on the paper
Try the exercise and you learn that sometimes you are in unfamiliar territory even when you don’t take a chance. The reflection may not be as safe as stepping through the looking glass.
Life changes and evolves every day. Sometimes the changes are internal as we struggle with meeting our daily emotional needs. We face external changes as we wake up each day to find our world has changed. Sometimes the changes are upheavals—the test results came back positive, a loved one passes away, a home is destroyed by fire or tornado; while other changes are subtle—another gray hair, bad dreams, indigestion, gained another two pounds.
The only thing we can really count on is that today will not be exactly like yesterday or the same as tomorrow. We cannot stand still while everything moves around us. Instead, we are swept along life’s journey at breakneck speed.
So back to the original question—look at the reflection or step through the looking glass? Maybe it doesn’t make any difference. It depends on what we see in the reflection and whether we can look at it from a little different perspective to keep it interesting.
If I step through the looking glass, the world may change drastically—for better or worse. If my choice is through the looking glass, I must be sure the entire goal is not to find my way back. This choice doesn’t have to be made on New Year’s Day, it needs to be made when the time is right. I’ve stepped through the looking glass before, and when I can do it without regrets, I’ll step through it again. For now, I’m happy looking at the reflection in a different way. That’s enough excitement and adventure for me.
Copyright © December 2010 L. S. Fisher
http://earlyonset.blogspot.com
What’s on the other side? Maybe it is just more of the same, but it could be a strange new world where nothing is familiar. It could mean that someone raised the stakes when I wasn’t looking, or it could be a wondrous land unlike anything I’ve ever known. Either way, through the looking glass means excitement and adventure—the reflection is security and safety.
But does the mirror reflect only the familiar? I’m reminded of an exercise in my Train the Trainer: Building Creative Caregivers workbook. The "Mirror Exercise" is designed to sensitize participants to how hard it is for a person with dementia do perform simple tasks.
The Mirror Exercise (from Building Creative Caregivers):
• You need a hand mirror, pen and paper
• Hold the pen in one hand and the mirror in the other, reflecting side out slightly above your shoulder
• Locate your hand and pen in the mirror
• Looking only in the mirror, draw a house on the paper
• After you draw your picture write your name on the paper
Try the exercise and you learn that sometimes you are in unfamiliar territory even when you don’t take a chance. The reflection may not be as safe as stepping through the looking glass.
Life changes and evolves every day. Sometimes the changes are internal as we struggle with meeting our daily emotional needs. We face external changes as we wake up each day to find our world has changed. Sometimes the changes are upheavals—the test results came back positive, a loved one passes away, a home is destroyed by fire or tornado; while other changes are subtle—another gray hair, bad dreams, indigestion, gained another two pounds.
The only thing we can really count on is that today will not be exactly like yesterday or the same as tomorrow. We cannot stand still while everything moves around us. Instead, we are swept along life’s journey at breakneck speed.
So back to the original question—look at the reflection or step through the looking glass? Maybe it doesn’t make any difference. It depends on what we see in the reflection and whether we can look at it from a little different perspective to keep it interesting.
If I step through the looking glass, the world may change drastically—for better or worse. If my choice is through the looking glass, I must be sure the entire goal is not to find my way back. This choice doesn’t have to be made on New Year’s Day, it needs to be made when the time is right. I’ve stepped through the looking glass before, and when I can do it without regrets, I’ll step through it again. For now, I’m happy looking at the reflection in a different way. That’s enough excitement and adventure for me.
Copyright © December 2010 L. S. Fisher
http://earlyonset.blogspot.com
Sunday, December 26, 2010
The Day After Christmas
Ever thought about how the day after Christmas is so different from the night before our biggest holiday? Before is filled with anticipation, excitement, and preparation. The day after is clean up the mess time, work on leftovers, procrastinate about undecking the halls (sounds like a New Year’s Day project), and maybe a twinge of depression that the big day is over.
This year, the day after fell on Sunday, so the normal “day after” seems to me like it’s on overdrive. The house is quiet—holiday music seems so “yesterday” and I just couldn’t Face the Nation this morning. Why would anyone want to hear that squabbling on the day after Christmas?
Overnight, more snow fell—okay, we already had a white Christmas so I’m ready for it to stop. I decided to stay home instead of braving the slick roads to go to church this morning. Instead, I watched Joel Osteen on TV.
Joel’s message this morning, “Enjoy the Journey,” really hit home with me. The gist of his message was how we get too busy to enjoy the simple things in life. He talked about how we rush through life in anticipation of the big events and don’t have time to savor the small moments that make the memories. We need to squeeze time in our busy schedules to spend with family and loved ones, instead of zapping our energy with work and obligations.
I guess if a busy man like Joel Osteen can take time to savor the moment, it should be easy for me. When I examine my life, it seems to be mostly hectic, and too often hectic turns to frantic. I’ve just kept piling on obligations until they’ve taken on a life of their own. For the past week, I haven’t worried about all the things I should be doing, but have pretty much just shoved them aside. For once, my holiday has been respite from responsibilities.
Holidays were especially hard during the ten years of Jim’s dementia. Christmas activities pretty much confused him and he didn’t like the house being changed with decorations. When he was in the nursing home, he enjoyed the small Christmas tree I put in his room.
Each year is different in some way. If nothing else, the kids or grandkids are getting older. After our family get-together this year, my oldest grandson got behind the wheel of the family vehicle to drive them home. It doesn’t seem that long ago that we bought him Woody and Buzz Lightyear for Christmas.
While some really relate to the ho-ho-ho and jolly part of Christmas, others are filled with dread as they struggle to establish new traditions, or wonder how they will put on a happy face for everyone else. There’s a lot of internal and external pressure to be merry at Christmas. It’s expected.
As far as Christmas, I think I’ll just go with Joel Osteen’s idea to “Enjoy the Journey.” Each Christmas is different, but that doesn’t mean it is necessarily better or worse. The Christmases that may have seemed the most challenging at the time yield happy moments that turn into cherished memories. I can still see Jim wearing his Kansas City Chief’s shirt, mesmerized by the fiber optic tree. When I walked into his room, sometimes he would turn to me and his eyes would light up.
Life’s journey seems to be flying by and Christmas is a mile marker. Christmas is over, again. Now, it’s time to think about how to make the most of the 365 days of 2011. No one but me can put the “happy” in my New Year, but I might as well start with this day after Christmas. No time like the present to make a memory.
Copyright © December 2010 by L. S. Fisher
http://earlyonset.blogspot.com
This year, the day after fell on Sunday, so the normal “day after” seems to me like it’s on overdrive. The house is quiet—holiday music seems so “yesterday” and I just couldn’t Face the Nation this morning. Why would anyone want to hear that squabbling on the day after Christmas?
Overnight, more snow fell—okay, we already had a white Christmas so I’m ready for it to stop. I decided to stay home instead of braving the slick roads to go to church this morning. Instead, I watched Joel Osteen on TV.
Joel’s message this morning, “Enjoy the Journey,” really hit home with me. The gist of his message was how we get too busy to enjoy the simple things in life. He talked about how we rush through life in anticipation of the big events and don’t have time to savor the small moments that make the memories. We need to squeeze time in our busy schedules to spend with family and loved ones, instead of zapping our energy with work and obligations.
I guess if a busy man like Joel Osteen can take time to savor the moment, it should be easy for me. When I examine my life, it seems to be mostly hectic, and too often hectic turns to frantic. I’ve just kept piling on obligations until they’ve taken on a life of their own. For the past week, I haven’t worried about all the things I should be doing, but have pretty much just shoved them aside. For once, my holiday has been respite from responsibilities.
Holidays were especially hard during the ten years of Jim’s dementia. Christmas activities pretty much confused him and he didn’t like the house being changed with decorations. When he was in the nursing home, he enjoyed the small Christmas tree I put in his room.
Each year is different in some way. If nothing else, the kids or grandkids are getting older. After our family get-together this year, my oldest grandson got behind the wheel of the family vehicle to drive them home. It doesn’t seem that long ago that we bought him Woody and Buzz Lightyear for Christmas.
While some really relate to the ho-ho-ho and jolly part of Christmas, others are filled with dread as they struggle to establish new traditions, or wonder how they will put on a happy face for everyone else. There’s a lot of internal and external pressure to be merry at Christmas. It’s expected.
As far as Christmas, I think I’ll just go with Joel Osteen’s idea to “Enjoy the Journey.” Each Christmas is different, but that doesn’t mean it is necessarily better or worse. The Christmases that may have seemed the most challenging at the time yield happy moments that turn into cherished memories. I can still see Jim wearing his Kansas City Chief’s shirt, mesmerized by the fiber optic tree. When I walked into his room, sometimes he would turn to me and his eyes would light up.
Life’s journey seems to be flying by and Christmas is a mile marker. Christmas is over, again. Now, it’s time to think about how to make the most of the 365 days of 2011. No one but me can put the “happy” in my New Year, but I might as well start with this day after Christmas. No time like the present to make a memory.
Copyright © December 2010 by L. S. Fisher
http://earlyonset.blogspot.com
Monday, December 20, 2010
A Letter to the President: Sign the National Alzheimer’s Project Act
For the first time, I wrote a letter to the President of the United States! I asked him to sign the National Alzheimer’s Project Act (NAPA). It’s not that I never had anything to say to the President before, but no issue ever motivated me enough to actually write. Besides, you always know he isn’t going to read his letters anyway. I’m sure he isn’t too concerned about one person’s opinion, but if he gets a million emails sent to him, they will be a nudge in the right direction.
This Act has been in the works since 2007. During our legislative visits at the 2010 Alzheimer’s Advocacy Forum my granddaughter, my friend Cindy, and I talked to our representatives and senators to ask them to support NAPA. After 1,000 advocate meetings, 50,000 emails, 10,000 phone calls, and 110,000 signatures gathered during the Alzheimer’s Breakthrough Ride, both the Senate and House of Representatives passed the bill establishing NAPA.
NAPA will be a coordinated effort to use our resources on research for a cure and effective treatment, provide appropriate home, clinical, and institutional care for the 5.3 million persons with Alzheimer’s, improve community based programs, and support for families. In my opinion, NAPA is the most important legislative act for families who are struggling with an Alzheimer’s diagnosis.
After a series of tests, a doctor told my forty-nine-year-old husband that he had early-onset dementia.
“What would cause that?” I asked.
"Most likely Alzheimer’s,” the doctor said.
We didn’t know much about Alzheimer’s at the time, but I can tell you from personal experience that it is a devastating diagnosis. There are no words to describe the heartbreak of knowing your loved one has an incurable brain disease that will rob him of his abilities, personality, memories, and eventually his life.
By 2050, without a cure for Alzheimer’s, an estimated 16 million Americans can hear the same bleak diagnosis. Age is the No. 1 risk factor for Alzheimer’s and as the Baby Boomers age, more people will be at risk than ever. NAPA does not guarantee a cure, but it is definitely a step in the right direction. Alzheimer’s has never received the attention of diseases like AIDS or cancer. What good will it do to cure other diseases to find ourselves at a 50% chance of developing Alzheimer’s once we reach 85 years old? I don’t know about you, but I hope to be able to recognize my children, grandchildren, and great-grandchildren as long as I live.
Jim died in 2005 at fifty-nine years old after ten years with corticobasal degeneration, an Alzheimer’s type of dementia. Today would have been our 41st wedding anniversary had dementia not cut his life short.
I wrote my letter to the President because of Jim, and I’m sure your loved ones are worth the few minutes it takes to go to www.alz.org and send a letter to the President in support of NAPA.
Copyright © December 2010, L. S. Fisher
http://earlyonset.blogspot.com
This Act has been in the works since 2007. During our legislative visits at the 2010 Alzheimer’s Advocacy Forum my granddaughter, my friend Cindy, and I talked to our representatives and senators to ask them to support NAPA. After 1,000 advocate meetings, 50,000 emails, 10,000 phone calls, and 110,000 signatures gathered during the Alzheimer’s Breakthrough Ride, both the Senate and House of Representatives passed the bill establishing NAPA.
NAPA will be a coordinated effort to use our resources on research for a cure and effective treatment, provide appropriate home, clinical, and institutional care for the 5.3 million persons with Alzheimer’s, improve community based programs, and support for families. In my opinion, NAPA is the most important legislative act for families who are struggling with an Alzheimer’s diagnosis.
After a series of tests, a doctor told my forty-nine-year-old husband that he had early-onset dementia.
“What would cause that?” I asked.
"Most likely Alzheimer’s,” the doctor said.
We didn’t know much about Alzheimer’s at the time, but I can tell you from personal experience that it is a devastating diagnosis. There are no words to describe the heartbreak of knowing your loved one has an incurable brain disease that will rob him of his abilities, personality, memories, and eventually his life.
By 2050, without a cure for Alzheimer’s, an estimated 16 million Americans can hear the same bleak diagnosis. Age is the No. 1 risk factor for Alzheimer’s and as the Baby Boomers age, more people will be at risk than ever. NAPA does not guarantee a cure, but it is definitely a step in the right direction. Alzheimer’s has never received the attention of diseases like AIDS or cancer. What good will it do to cure other diseases to find ourselves at a 50% chance of developing Alzheimer’s once we reach 85 years old? I don’t know about you, but I hope to be able to recognize my children, grandchildren, and great-grandchildren as long as I live.
Jim died in 2005 at fifty-nine years old after ten years with corticobasal degeneration, an Alzheimer’s type of dementia. Today would have been our 41st wedding anniversary had dementia not cut his life short.
I wrote my letter to the President because of Jim, and I’m sure your loved ones are worth the few minutes it takes to go to www.alz.org and send a letter to the President in support of NAPA.
Copyright © December 2010, L. S. Fisher
http://earlyonset.blogspot.com
Tuesday, December 14, 2010
The Big Chill: Keeping Loved Ones Safe
Winter hasn’t officially begun and I’m already tired of the frigid weather. Single digits and thirty-mile-an-hour winds make me want to burrow in and not make an appearance until springtime.
I started out bundled up in my winter coat and wearing a hat on a mission to finish my Christmas shopping. After a few miserable trips from car to store, I purchased a heavy sweatshirt and put it on beneath my coat. I pulled the hood up and spent the rest of the day with hair that was crushed to my head in places while static lifted the rest of it in wisps high above my head. Not a good hair day!
Hair is not the biggest challenge on a cold, windy winter day. The danger lies in being exposed to the elements for any length of time—especially without protective clothing.
Winter is especially dangerous when a family member has Alzheimer’s. A person with Alzheimer’s may not remember to dress appropriately for the weather and a trip across the yard to check the mail could turn into a tragedy.
About 60% of those with Alzheimer’s wander. Wandering is especially dangerous in inclement weather when every minute counts. Snow can change the look of the terrain and familiar surroundings may become unrecognizable to someone with dementia. Slippery sidewalks and snow filled ditches become an obstacle course fraught with danger.
In the early stages, Jim walked our two big dogs every day. One day, a neighbor became concerned about Jim when she saw him trudging through a deep snow walking the dogs. He was wearing his winter coat, but had neglected to zip it up. She met him at the end of her drive and convinced him to turn around and head toward home.
After Jim began to wander, I tried different types of safeguards. I tried a device on the doorknobs that made them hard to open, but they didn’t slow Jim down when he decided to open the door. Eventually, I installed an alarm on the door so he couldn’t go outside undetected. I registered Jim with Safe Return which gave me some peace of mind.
When a person is lost, it is critical to find him within the first 24 hours to increase the chances of having a good outcome. In cold winter weather, like we have now, the safety zone is further reduced.
Cold weather is dangerous for everyone, but when reasoning is impaired it is important for family members to be vigilant. If your loved one must go outside, make sure he or she is dressed warmly and limit outdoor activities to short period of times. Do not let a person with dementia go outside alone in inclement weather especially if they have been known to get lost.
Winter officially begins next week so we have plenty of time to experience the big chill. Let’s keep our loved ones warm and safe throughout the cold days ahead.
Copyright © December 2010 L. S. Fisher
http://earlyonset.blogspot.com/
I started out bundled up in my winter coat and wearing a hat on a mission to finish my Christmas shopping. After a few miserable trips from car to store, I purchased a heavy sweatshirt and put it on beneath my coat. I pulled the hood up and spent the rest of the day with hair that was crushed to my head in places while static lifted the rest of it in wisps high above my head. Not a good hair day!
Hair is not the biggest challenge on a cold, windy winter day. The danger lies in being exposed to the elements for any length of time—especially without protective clothing.
Winter is especially dangerous when a family member has Alzheimer’s. A person with Alzheimer’s may not remember to dress appropriately for the weather and a trip across the yard to check the mail could turn into a tragedy.
About 60% of those with Alzheimer’s wander. Wandering is especially dangerous in inclement weather when every minute counts. Snow can change the look of the terrain and familiar surroundings may become unrecognizable to someone with dementia. Slippery sidewalks and snow filled ditches become an obstacle course fraught with danger.
In the early stages, Jim walked our two big dogs every day. One day, a neighbor became concerned about Jim when she saw him trudging through a deep snow walking the dogs. He was wearing his winter coat, but had neglected to zip it up. She met him at the end of her drive and convinced him to turn around and head toward home.
After Jim began to wander, I tried different types of safeguards. I tried a device on the doorknobs that made them hard to open, but they didn’t slow Jim down when he decided to open the door. Eventually, I installed an alarm on the door so he couldn’t go outside undetected. I registered Jim with Safe Return which gave me some peace of mind.
When a person is lost, it is critical to find him within the first 24 hours to increase the chances of having a good outcome. In cold winter weather, like we have now, the safety zone is further reduced.
Cold weather is dangerous for everyone, but when reasoning is impaired it is important for family members to be vigilant. If your loved one must go outside, make sure he or she is dressed warmly and limit outdoor activities to short period of times. Do not let a person with dementia go outside alone in inclement weather especially if they have been known to get lost.
Winter officially begins next week so we have plenty of time to experience the big chill. Let’s keep our loved ones warm and safe throughout the cold days ahead.
Copyright © December 2010 L. S. Fisher
http://earlyonset.blogspot.com/
Monday, December 6, 2010
Frontotemporal Dementia (FTD)
I found an Alzheimer’s Weekly in my inbox that gave me hope that scientists may be on track to find effective treatment for the rare type of dementia Jim had. While Jim was living, we didn’t know exactly what disease he had, only that it was an Alzheimer’s type of dementia. Early on, the neurologist suspected Jim might have Pick’s disease, or a disease that didn’t even have a name.
When the autopsy report came in, I sent it to the neurologist to find out exactly what disease Jim had. All I knew for sure after reading the report was that Jim had no evidence of Alzheimer’s. The neurologist called me back in a few minutes and gave me the name of a disease I had never heard of: corticobasal degeneration, sometimes called corticobasal ganglionic degeneration.
The 7th Annual International Conference on Frontotemporal Dementia focused on a disease that so rare it affects only about 20,000 people.
Frontotemporal Dementia Facts:
The FTD diseases include:
I’ve never understood why corticobasal degeneration was not included in the various Alzheimer’s type of dementia. Jim's diagnosis after the mental exam was “dementia of the Alzheimer’s type.” And corticobasal is definitely that.
One of the differences between FTD and Alzheimer’s is that FTD usually begins with behavior and communication problems, where Alzheimer’s begins with memory loss.
FTD Symptoms:
Copyright © December 2010 L. S. Fisher
http://earlyonset.blogspot.com/
To read more about frontotemporal dementia:
When the autopsy report came in, I sent it to the neurologist to find out exactly what disease Jim had. All I knew for sure after reading the report was that Jim had no evidence of Alzheimer’s. The neurologist called me back in a few minutes and gave me the name of a disease I had never heard of: corticobasal degeneration, sometimes called corticobasal ganglionic degeneration.
The 7th Annual International Conference on Frontotemporal Dementia focused on a disease that so rare it affects only about 20,000 people.
Frontotemporal Dementia Facts:
- Accounts for 2 – 10% of dementia
- The onset is usually between 40 and 65 years of age
- The expected lifespan is 5-10 years
- Can run in families
- Familial FTD is linked to the “tau” gene, chromosome 17
The FTD diseases include:
- Pick’s Disease
- Primary Progressive Aphasia
- Semantic Dementia
I’ve never understood why corticobasal degeneration was not included in the various Alzheimer’s type of dementia. Jim's diagnosis after the mental exam was “dementia of the Alzheimer’s type.” And corticobasal is definitely that.
One of the differences between FTD and Alzheimer’s is that FTD usually begins with behavior and communication problems, where Alzheimer’s begins with memory loss.
FTD Symptoms:
- Personality and behavior changes
- Lack of empathy and impaired social interactions
- Language difficulty
- Compulsive behavior and repetitive actions
- As the disease progresses—impaired motor skills, speech, and movement
People with FTD cannot stop or control their behavior—the frontal and temporal lobes are the first part of the brain to sustain damaged. Since FTD is typically a younger onset dementia it is often mistaken for a mental disease rather than a degenerative brain disorder. Out of control behavior, personality changes, and poor financial judgment are some of the symptoms that create strained relationships with loved ones. Caregivers are only human and although logically we know our loved one is not deliberately being difficult, sometimes feelings are hurt, or the caregiver feels unappreciated, unloved, and becomes depressed.
My experience is that it is best to take one day at a time—or even one hour at a time. I accepted Jim for the person he became, knowing that he would never again be the man he had been. It helps to know that some of the behavior can be controlled with medication and from time-to-time you see a fleeting glimpse of a familiar expression, or a genuine smile.
I always cherished the moments when I said, “I love you” and Jim replied, “I love you too”--especially, when he said it like he meant it.
Copyright © December 2010 L. S. Fisher
http://earlyonset.blogspot.com/
To read more about frontotemporal dementia:
Sunday, November 28, 2010
The Brighter the Light, the Deeper the Shadows
This morning Pastor Jim talked about how God’s light chases away the darkness, and as usual, his message gave me food for thought. In a flash of light, the phrase came to my mind—the brighter the light, the deeper the shadows.
Our lives are made up of bright light and dark shadows. Some mornings we awaken with joy in our hearts, confident the day will shine bright upon us. Other days begin with a sense of something out of kilter, and as we orient ourselves to meet the day, a shadow may envelop us in gloom.
People surrounded by the brightest lights often plummet to the deepest shadows. Do we expect more from those who live in the limelight? Stars who flame the brightest fall from the sky and become lost in the shadows. Often we are envious of famous people and believe they lead charmed lives. Often it isn’t until their deaths that we learn about their dark sides, the demons of drugs, insecurity, or physical abuse they hid behind their bright smiles. Could we have seen the pain in their eyes if only we had looked closer? Could we tell that Marilyn stood in the shadow of Norma Jean? Could we have known that satisfying the public’s insatiable curiosity about Princess Diana cast a shadow over her that contributed to her death?
When a loved one has Alzheimer’s, we may spend many days living in the shadow of the life we used to have. I recently talked to a woman whose husband has a type of dementia that drastically changed his personality. For more than sixty years, their days were filled with travel, love, and laughter. Now, he is making her life miserable. He accuses her of cheating on him, calls her obscene names, says he hates her (and always has), that he wants a divorce, and on and on. Her heart is broken. She doesn’t want to put him in a nursing home, and she worries about him constantly even during the time we spent drinking coffee at a local restaurant.
Now, his doctor is trying to control his rage with medication, but so far nothing has worked. “I still love him,” she said with tears in her eyes, “but I don’t like him anymore.” Her life has moved into deepest shadows. The bright light that shone upon them seems like a distant memory, a lifetime ago, extinguished and vanished from her world.
If we can only remember that during the darkest times of our lives, the brightest light shines on us. The light is always there. It just happens to be shining at our backs while all we see is the shadow in front of us. As we move forward, the shadow moves with us, and we think it will never go away. During the most troubled times, we may be afraid that the shadow is a black hole and one more step will cause us to tumble into the abyss. From time to time, we must turn around and look over our shoulder to see the bright light, still there, steadfast.
Without light, there are no shadows. Do you remember making shadow puppets when you were younger? You place your hand in front of a bright light and form your hand into a shape. Your hand displaces the light, making a fun shadow on the wall. If you make a solid fist, the light won’t shine through your hand—you must actively make it happen.
The only way a shadow remains solid is if we do nothing to allow light to shine through. The slivers of brilliant light blazing through the shadows reaffirms our faith that the deeper the shadows, the brighter the light.
Copyright © November 2010 L. S. Fisher
http://earlyonset.blogspot.com
Our lives are made up of bright light and dark shadows. Some mornings we awaken with joy in our hearts, confident the day will shine bright upon us. Other days begin with a sense of something out of kilter, and as we orient ourselves to meet the day, a shadow may envelop us in gloom.
People surrounded by the brightest lights often plummet to the deepest shadows. Do we expect more from those who live in the limelight? Stars who flame the brightest fall from the sky and become lost in the shadows. Often we are envious of famous people and believe they lead charmed lives. Often it isn’t until their deaths that we learn about their dark sides, the demons of drugs, insecurity, or physical abuse they hid behind their bright smiles. Could we have seen the pain in their eyes if only we had looked closer? Could we tell that Marilyn stood in the shadow of Norma Jean? Could we have known that satisfying the public’s insatiable curiosity about Princess Diana cast a shadow over her that contributed to her death?
When a loved one has Alzheimer’s, we may spend many days living in the shadow of the life we used to have. I recently talked to a woman whose husband has a type of dementia that drastically changed his personality. For more than sixty years, their days were filled with travel, love, and laughter. Now, he is making her life miserable. He accuses her of cheating on him, calls her obscene names, says he hates her (and always has), that he wants a divorce, and on and on. Her heart is broken. She doesn’t want to put him in a nursing home, and she worries about him constantly even during the time we spent drinking coffee at a local restaurant.
Now, his doctor is trying to control his rage with medication, but so far nothing has worked. “I still love him,” she said with tears in her eyes, “but I don’t like him anymore.” Her life has moved into deepest shadows. The bright light that shone upon them seems like a distant memory, a lifetime ago, extinguished and vanished from her world.
If we can only remember that during the darkest times of our lives, the brightest light shines on us. The light is always there. It just happens to be shining at our backs while all we see is the shadow in front of us. As we move forward, the shadow moves with us, and we think it will never go away. During the most troubled times, we may be afraid that the shadow is a black hole and one more step will cause us to tumble into the abyss. From time to time, we must turn around and look over our shoulder to see the bright light, still there, steadfast.
Without light, there are no shadows. Do you remember making shadow puppets when you were younger? You place your hand in front of a bright light and form your hand into a shape. Your hand displaces the light, making a fun shadow on the wall. If you make a solid fist, the light won’t shine through your hand—you must actively make it happen.
The only way a shadow remains solid is if we do nothing to allow light to shine through. The slivers of brilliant light blazing through the shadows reaffirms our faith that the deeper the shadows, the brighter the light.
Copyright © November 2010 L. S. Fisher
http://earlyonset.blogspot.com
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