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Sunday, January 30, 2011

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

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.

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.

The common areas are decorated with photography by Faith Bemiss, a local artist. Her beautiful photographs serve practical function by helping residents find their rooms. A resident might live in the pelican room—a small framed photograph of pelicans is beside the door and a larger pelican picture decorates the room. Each of the twenty rooms has a different photographical theme.

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