Presentations

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

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

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

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/

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:

  •  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 Frontotemporal Family of diseases affects behavior and causes problems with language. Jim developed dementia at 49 years old and died at 59. His personality changed and his behavior became childlike at time. One of Jim’s first symptoms was problems with language—spoken and written. Jim could write letters and sometimes even have the correct letters in a word, but they might be jumbled. I had him write a grocery list for me once and he wrote “taper powels.” He later looked at the list and said, “Why did I write it like that?” He spoke in familiar phrases for a long time and was almost totally silent the last two years of his life.

The FTD diseases include:
  • Pick’s Disease
  • Primary Progressive Aphasia
  • Semantic Dementia
Some doctors propose adding other diseases to the FTD classification and call the group Pick’s Complex. The diseases that may soon be included in FTD beneath the umbrella of Pick’s Complex are corticobasal degeneration and progressive supranuclear palsy.

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
Corticobasal degeneration is considered a movement disorder. Late in the disease, Jim kept falling and used a device that looked much like a giant baby walker to keep him in an upright position. He also had what is known as “alien limb” and didn’t seem to know what to do with his right arm. He clinched his right hand so hard for so long that he developed a pressure sore and had to have his little finger amputated.

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: