Do you believe in ghosts? Recently, I answered a survey about ghosts in the affirmative: “Yes, I believe in ghosts.” More than 70% of the people answering the survey said the same thing. Enough strange things have happened in my life that I don’t scoff at the idea. Jim always explained weird things by saying, “It’s just harmless poltergeist.”
September 30 was one of those days when strange things happened to me. It was the anniversary of my dad’s death, and he died on the anniversary of his dad. As I left the gym, my thoughts turned to a friend of mine who had died in 2005 and how a Rod Stewart song makes me think of him. I always seem to hear the song on his birthday and the anniversary of his death. I just realized the date had passed and I hadn’t heard it this year. I turned left on 65 Highway a few minutes later and the song came on the radio. That’s creepy, I thought.
I drove home and walked into my house to discover a plastic bag in front of my coffee pot. Oh, Ginger must have left something for me. Curious, I picked up the neatly folded bag and looked inside. It was my cat’s medicine which is normally on top of the refrigerator in a basket. I called Ginger, “Did you put Katrina’s medicine on my counter?”
“No, I haven’t been in your house today.”
I felt prickles on the back of my neck. “I don’t know how it got there,” I said, “but this is weird.” I walked through the rest of the house and didn’t see anything else disturbed.
I called my son, “Were you in my house today?”
“No, why?” I told him my story about finding the cat’s medicine on the counter where it hadn’t been when I checked my coffee pot just before I left for work.
“Could Katrina have knocked it off the refrigerator?”
He knows how Katrina climbs and although she once managed to break one of my light fixtures, even she couldn’t have gotten something off the refrigerator and folded it neatly on the counter across the room.
“Oh, Mom, you probably took the medicine down and got interrupted.”
About that time, a loud knock startled me. It was Ginger. She and I checked all the doors and they were all still locked, with deadbolts in place.
“I know I didn’t get that medicine down!” I said. “This is creeping me out. Why would someone come in my house and put Katrina’s medicine on the counter?”
Ginger said, “This is creeping me out too!”
“Well, it wasn’t Jim,” I said. Jim always reminded me to give the dogs their medicine. “I didn’t find Katrina until after he died. And it wasn’t my Dad because he didn’t like cats.”
So how did the medicine get on the counter? The logical explanation is, I did it, but don’t remember doing it. Does this mean I have short term memory loss?
Which is truly scarier—short term memory loss or poltergeist? ...Does anyone have a phone number for Ghost Busters?
Saturday, October 4, 2008
Saturday, September 27, 2008
Early Onset Dementia: Write Your Story
Did some event happen that made you realize your life was irrevocably changed? What is your story of that moment?
Each morning of my life, I have awakened with confidence that life will plug along on an even keel. Without warning, a few simple questions changed the course of my family’s lives.
Jim and I were at our local Nissan dealer to co-sign a loan for our son. The dealer, Kevin, asked Jim his social security number and after a few moments, Jim said, “I can’t remember it.” Jim knew his social security number well because it had been his service number for three years in the U.S. Army. It surpised me that Jim couldn't recall the number, but it didn't concern me because I have glitches with numbers all the time. I gave Kevin Jim’s social security number.
Then, Kevin asked Jim his birth date. Jim said, “I guess I don’t know that either.”
That was when we began our journey. A family in the United States begins that journey every 71 seconds. The Alzheimer’s Association estimates that more than 500,000 people in the U.S. have dementia that began before age 65, or early onset dementia.
For several months, I have worked on the Early Onset Project. My objective is to collect stories to create awareness of early onset dementia. I need approximately thirty-five true stories to complete the book. My plan is to have three sections: In Their Own Words (people with dementia), Care Partner Stories (for primary caregivers) and Family, Friends, and Professional’s Stories.
Although I extended the deadline to October 31, I do not have enough submissions. I know it’s hard to take time to write a story, but consider how much your slice-of-life story can benefit other people who have just begun the Alzheimer's journey.
Writing life stories is therapeutic for the author. It is amazing how committing your challenges to paper can begin emotional healing. I knew this instinctively, but research supports the beneficial effects of therapeutic writing. Dr. James Pennebaker’s studies have shown positive emotional and physical benefits for people who wrote about traumatic experiences for fifteen minutes, four to seven consecutive days. The participants were instructed to write their emotional reaction to the traumatic event without regard to grammar or spelling. This writing can be kept completely personal and never shared with anyone. Most participants found that by the end of the study period their writing had developed into a story.
Try it and you will be amazed at how easy it is to write a slice-of-life story and how cathartic the process will be. If you want to contribute the story to the Early Onset Project, email it to earlyonset(at)hotmail.com.
Watch for a publication date announcement for: Writing as Therapy: Rocks and Pebbles by L. S. Fisher.
Each morning of my life, I have awakened with confidence that life will plug along on an even keel. Without warning, a few simple questions changed the course of my family’s lives.
Jim and I were at our local Nissan dealer to co-sign a loan for our son. The dealer, Kevin, asked Jim his social security number and after a few moments, Jim said, “I can’t remember it.” Jim knew his social security number well because it had been his service number for three years in the U.S. Army. It surpised me that Jim couldn't recall the number, but it didn't concern me because I have glitches with numbers all the time. I gave Kevin Jim’s social security number.
Then, Kevin asked Jim his birth date. Jim said, “I guess I don’t know that either.”
That was when we began our journey. A family in the United States begins that journey every 71 seconds. The Alzheimer’s Association estimates that more than 500,000 people in the U.S. have dementia that began before age 65, or early onset dementia.
For several months, I have worked on the Early Onset Project. My objective is to collect stories to create awareness of early onset dementia. I need approximately thirty-five true stories to complete the book. My plan is to have three sections: In Their Own Words (people with dementia), Care Partner Stories (for primary caregivers) and Family, Friends, and Professional’s Stories.
Although I extended the deadline to October 31, I do not have enough submissions. I know it’s hard to take time to write a story, but consider how much your slice-of-life story can benefit other people who have just begun the Alzheimer's journey.
Writing life stories is therapeutic for the author. It is amazing how committing your challenges to paper can begin emotional healing. I knew this instinctively, but research supports the beneficial effects of therapeutic writing. Dr. James Pennebaker’s studies have shown positive emotional and physical benefits for people who wrote about traumatic experiences for fifteen minutes, four to seven consecutive days. The participants were instructed to write their emotional reaction to the traumatic event without regard to grammar or spelling. This writing can be kept completely personal and never shared with anyone. Most participants found that by the end of the study period their writing had developed into a story.
Try it and you will be amazed at how easy it is to write a slice-of-life story and how cathartic the process will be. If you want to contribute the story to the Early Onset Project, email it to earlyonset(at)hotmail.com.
Watch for a publication date announcement for: Writing as Therapy: Rocks and Pebbles by L. S. Fisher.
Monday, September 22, 2008
I Will Remember You, Will You Remember Me?
Sometimes you are better off when you don’t get what you wish for. We had wished for our Memory Walk to be last weekend, but settled for this weekend instead. What a difference a week makes! Last Saturday I was flooded in, but Memory Walk day couldn’t have been more perfect if the request had gone straight from our lips to God’s ears.
It’s been a busy weekend. We began on Thursday evening with Bank Day. Besides collecting team money, we put together goody bags and handed out tee-shirts. Friday, I introduced our new coordinator, Lisa, to the fine art of schmoozing. This is a long-standing tradition with our Sedalia Memory Walk. We visit our corporate sponsors bearing gifts. It shows our appreciation and reminds everyone of the upcoming event.
Friday was a good day. Lisa and I solved our last two remaining problems: (1) ice and water and (2) balloons for our balloon release. When Wal-Mart gave us a gift card, we solved Problem #1 and knew we could buy water and ice the next morning. Problem #2 was balloons for our balloon release. I knew from past experience that inflating the balloons, tying them off, and hauling them around is not a job for sissies. Balloons and Tunes quoted Lisa fifty cents a balloon. For $25 we bought fifty white and purple balloons ready for flight.
Saturday morning, festive music played in the background, and Don the balloon man made magical animal figures and hats for children of all ages ranging from a few months to 96 years. We served breakfast snacks with coffee and plenty of iced down beverages. Center Stage Dance Academy performed three delightful dances that lived up to the slogan on their shirts: “Dance Like Everyone is Watching.”
We began our walk to “I Like to Move It” from Madagascar and finished our mile to “Chariots of Fire.” After the Walk, we gave away door prizes and awarded the two traveling trophies to Fairview. Lisa handed out balloons and with a purple marker, we wrote names of the loved ones we wanted to honor.
“Whose name would you like on your balloon?” I asked Connie from Fairview Nursing Home. Jim’s Team and Fairview have been long-time friendly rivals for the trophies. As a former coordinator, I truly appreciate their commitment to Memory Walk.
“Put Jim’s name on it,” she said. I wrote his name and drew a heart around it.
The music keyed up and fifty balloons soared to “I Will Remember You, Will You Remember Me?” Some of the balloons flew toward the heavens and some caught in the upper branches of a stately tree.
“Those are the ones who are still with us,” my Aunt Labetta said. Before the song was finished, most of the balloons slipped on through the tree and disappeared into the bluest sky possible. Tears flowed for our loved ones lost to the disease. We will always remember them with love, even when they don’t remember us.
It’s been a busy weekend. We began on Thursday evening with Bank Day. Besides collecting team money, we put together goody bags and handed out tee-shirts. Friday, I introduced our new coordinator, Lisa, to the fine art of schmoozing. This is a long-standing tradition with our Sedalia Memory Walk. We visit our corporate sponsors bearing gifts. It shows our appreciation and reminds everyone of the upcoming event.
Friday was a good day. Lisa and I solved our last two remaining problems: (1) ice and water and (2) balloons for our balloon release. When Wal-Mart gave us a gift card, we solved Problem #1 and knew we could buy water and ice the next morning. Problem #2 was balloons for our balloon release. I knew from past experience that inflating the balloons, tying them off, and hauling them around is not a job for sissies. Balloons and Tunes quoted Lisa fifty cents a balloon. For $25 we bought fifty white and purple balloons ready for flight.
Saturday morning, festive music played in the background, and Don the balloon man made magical animal figures and hats for children of all ages ranging from a few months to 96 years. We served breakfast snacks with coffee and plenty of iced down beverages. Center Stage Dance Academy performed three delightful dances that lived up to the slogan on their shirts: “Dance Like Everyone is Watching.”
We began our walk to “I Like to Move It” from Madagascar and finished our mile to “Chariots of Fire.” After the Walk, we gave away door prizes and awarded the two traveling trophies to Fairview. Lisa handed out balloons and with a purple marker, we wrote names of the loved ones we wanted to honor.
“Whose name would you like on your balloon?” I asked Connie from Fairview Nursing Home. Jim’s Team and Fairview have been long-time friendly rivals for the trophies. As a former coordinator, I truly appreciate their commitment to Memory Walk.
“Put Jim’s name on it,” she said. I wrote his name and drew a heart around it.
The music keyed up and fifty balloons soared to “I Will Remember You, Will You Remember Me?” Some of the balloons flew toward the heavens and some caught in the upper branches of a stately tree.
“Those are the ones who are still with us,” my Aunt Labetta said. Before the song was finished, most of the balloons slipped on through the tree and disappeared into the bluest sky possible. Tears flowed for our loved ones lost to the disease. We will always remember them with love, even when they don’t remember us.
Saturday, September 13, 2008
The Days are Getting Shorter!
Today, slate skies are gushing rain onto Mid-Missouri. Ike is pushing inward and brings more of the same for next few days. The NOAH weather station on my weather alert radio spews out county after county with flash flood and tornado warnings. The days are getting shorter, and not just because autumn is nigh.
My days seem shorter because I’ve got more to do than time to do it. When I look around at other people, I see the same scenario played over and over. Life is hectic and the days aren’t long enough.
I work four ten-hour days each week. My “Day Off” To-Do List is jam packed with items. Some days, I barely scratch the surface. Weekends fly by and my list gets longer yet. My calendar for this month has events for every weekend—sometimes for Friday night, Saturday, and Sunday. This is a month with two family reunions, Memory Walk, writing, speaking engagements, radio/TV interviews, the BPW Chicken Dinner, writers’ guild, support group, fundraising for three different groups, and more. Whew! No wonder the days seem too short.
The dreary weather depresses me and makes me anxious. Our Memory Walk is next weekend and I pray for sunny skies. So much needs to be done before the walk and the morning of the walk. I have nightmares about downpours and no walkers. We will not cancel the walk for rain, but rain changes the entire dynamics of the event.
I may grouse about the constant rain, but I’m not complaining about the short days. The big advantage is that while the days are too short, they are full and fulfilling. Would I trade my short busy days for long leisurely ones? No, BUT I might be willing to swap some of them. A little down time seems like a dream come true. I would like to read a book, watch TV, and eat chocolate bonbons. I would be especially interested in a week on a tropical island—without a hurricane.
My days seem shorter because I’ve got more to do than time to do it. When I look around at other people, I see the same scenario played over and over. Life is hectic and the days aren’t long enough.
I work four ten-hour days each week. My “Day Off” To-Do List is jam packed with items. Some days, I barely scratch the surface. Weekends fly by and my list gets longer yet. My calendar for this month has events for every weekend—sometimes for Friday night, Saturday, and Sunday. This is a month with two family reunions, Memory Walk, writing, speaking engagements, radio/TV interviews, the BPW Chicken Dinner, writers’ guild, support group, fundraising for three different groups, and more. Whew! No wonder the days seem too short.
The dreary weather depresses me and makes me anxious. Our Memory Walk is next weekend and I pray for sunny skies. So much needs to be done before the walk and the morning of the walk. I have nightmares about downpours and no walkers. We will not cancel the walk for rain, but rain changes the entire dynamics of the event.
I may grouse about the constant rain, but I’m not complaining about the short days. The big advantage is that while the days are too short, they are full and fulfilling. Would I trade my short busy days for long leisurely ones? No, BUT I might be willing to swap some of them. A little down time seems like a dream come true. I would like to read a book, watch TV, and eat chocolate bonbons. I would be especially interested in a week on a tropical island—without a hurricane.
Saturday, September 6, 2008
Identity Theft
My phone rang at twenty minutes after midnight earlier this week. Of course, I was sound asleep so it took a few rings before my brain could interpret the sound and direct my hand to pick up the receiver. When I realized it was the phone, my first thought was Oh, my God, someone has died.
Instead of my mother, the normal bearer of sad tidings, I heard a recorded voice say, “This is Excel Bank, and we are notifying you that your debit card has been suspended. To speak to a representative about this matter …” OK. I’ve been awakened out of a sound sleep and I think someone has stolen my identity and ransacked my checking account. Then the practical side of my brain reminds me that my friend Arlene at Excel Bank would never call me in the middle of the night, so I hung up the phone.
The next day, the big news story is about the deluge of calls to everyone in Sedalia with an 826 prefix. Some of the people who received the calls were not, and had never been, Excel Bank customers. The scam artists even called the sheriff at his home and the Sedalia Police Department. Had I followed the directions, I would have been instructed to key in my account and pin number.
Ten years ago, I might have been tricked into giving someone sensitive information over the phone or on the Internet, but now I’ve learned to ignore urgent email requests about problems with various accounts—Amazon, E-Bay, bank, etc. I never click on “You Won! You are our 1,000,000th Customer” or “You won the Canadian lottery!”
When Jim and I first used the ATM, I could never remember the assigned number so he always had to key it in. Several years later, when he was in the early stages of dementia, Jim couldn’t consistently remember the secret number. One day I was at work and a teller at the bank called.
“There’s a man at the drive-up window who says he’s your husband. He tried to get money out of your account at the ATM, but couldn’t remember the pin number.”
“Did he want $30?” I asked. Jim always withdrew exactly $30 and that amount would be verification of his identity as far as I was concerned.
“Yes, he did. We had him send in his driver’s license, and then couldn’t decide if it was really him.”
“Oh, it’s Jim. Go ahead and give him the money.” The teller thought someone had stolen Jim’s identity. In reality, Jim was losing his identity to dementia—one memory, one skill, at a time.
Our identities are our most important possession because it is a mirror of our inner selves and values. When someone steals an identity, they have already demonstrated a flawed character. I don’t want to be bilked out of my hard earned money by a thief. Still, I would much rather lose dollars than my identity.
Instead of my mother, the normal bearer of sad tidings, I heard a recorded voice say, “This is Excel Bank, and we are notifying you that your debit card has been suspended. To speak to a representative about this matter …” OK. I’ve been awakened out of a sound sleep and I think someone has stolen my identity and ransacked my checking account. Then the practical side of my brain reminds me that my friend Arlene at Excel Bank would never call me in the middle of the night, so I hung up the phone.
The next day, the big news story is about the deluge of calls to everyone in Sedalia with an 826 prefix. Some of the people who received the calls were not, and had never been, Excel Bank customers. The scam artists even called the sheriff at his home and the Sedalia Police Department. Had I followed the directions, I would have been instructed to key in my account and pin number.
Ten years ago, I might have been tricked into giving someone sensitive information over the phone or on the Internet, but now I’ve learned to ignore urgent email requests about problems with various accounts—Amazon, E-Bay, bank, etc. I never click on “You Won! You are our 1,000,000th Customer” or “You won the Canadian lottery!”
When Jim and I first used the ATM, I could never remember the assigned number so he always had to key it in. Several years later, when he was in the early stages of dementia, Jim couldn’t consistently remember the secret number. One day I was at work and a teller at the bank called.
“There’s a man at the drive-up window who says he’s your husband. He tried to get money out of your account at the ATM, but couldn’t remember the pin number.”
“Did he want $30?” I asked. Jim always withdrew exactly $30 and that amount would be verification of his identity as far as I was concerned.
“Yes, he did. We had him send in his driver’s license, and then couldn’t decide if it was really him.”
“Oh, it’s Jim. Go ahead and give him the money.” The teller thought someone had stolen Jim’s identity. In reality, Jim was losing his identity to dementia—one memory, one skill, at a time.
Our identities are our most important possession because it is a mirror of our inner selves and values. When someone steals an identity, they have already demonstrated a flawed character. I don’t want to be bilked out of my hard earned money by a thief. Still, I would much rather lose dollars than my identity.
Saturday, August 30, 2008
Labor Day Weekend
Labor Day weekend has traditionally been one of my busiest weekends. Is that a paradox? I would think the purpose of the holiday is so people like me who have worked the greater part of our lives could relax, picnic, and basically rest on our laurels.
This is family reunion weekend for Jim’s family, my family now. We meet at the biggest shelter at Liberty Park. When I first attended the family reunion, the Fishers played music and sang. People wandered in from all other shelters in the park to listen to the music.
Sometimes we’ve huddled in our coats, and I remember my father-in-law, Bill, building a fire in the fireplace to ward off the chill. We’ve been there in rain, thunder storms, suffocating heat, and once in awhile, absolutely perfect weather.
Jim’s mom, Virginia, used to bake dozens of her delicious light rolls and cook a big pot of beans. We all look forward to Dinah’s chicken and noodles and Ginger’s potato salad. Along with pies, cookies, and brownies, we’ve had birthday and anniversary cakes.
Jim always looked forward to the reunion. We were usually at the park by 9:00 a.m. so he could set up microphones and amplifiers. The last time he went to the reunion, I picked him up at the nursing home. It was not a good day and not a good idea. He became upset and remained that way for days.
The older you get the more bittersweet family reunions become. It’s great to see family you haven’t seen since the last time, but you can’t help but feel sad about the ones who will never be at the Liberty Park reunion again. A new generation has taken over and those of us who have held to the tradition see our grandchildren play on the swings, slides, and merry-go-rounds. Once it was our children. Life goes on and laughter rings out as we celebrate the bond of family.
I wonder if when the younger generation plays music tomorrow I will hear echoes of other reunions. If I think of how Uncle Charles always called me his “sweetie.” Will I hear the ring of horseshoes clanking on the post, and Jim’s laughter as he shares a joke with Uncle Orvie?
When we pack up our Crockpots and pass around goodbye hugs, we are already looking forward to next year, seeing old acquaintances, and greeting new family members. After all, why are we in the labor force, if not for family? So maybe the illogical way to spend the day is in seclusion totally relaxed.
However you spend your Labor Day, I hope it is worthy of a weekend that celebrates a full and productive life. Part of life is work, but the all consuming part of life is family and being with the people you love.
This is family reunion weekend for Jim’s family, my family now. We meet at the biggest shelter at Liberty Park. When I first attended the family reunion, the Fishers played music and sang. People wandered in from all other shelters in the park to listen to the music.
Sometimes we’ve huddled in our coats, and I remember my father-in-law, Bill, building a fire in the fireplace to ward off the chill. We’ve been there in rain, thunder storms, suffocating heat, and once in awhile, absolutely perfect weather.
Jim’s mom, Virginia, used to bake dozens of her delicious light rolls and cook a big pot of beans. We all look forward to Dinah’s chicken and noodles and Ginger’s potato salad. Along with pies, cookies, and brownies, we’ve had birthday and anniversary cakes.
Jim always looked forward to the reunion. We were usually at the park by 9:00 a.m. so he could set up microphones and amplifiers. The last time he went to the reunion, I picked him up at the nursing home. It was not a good day and not a good idea. He became upset and remained that way for days.
The older you get the more bittersweet family reunions become. It’s great to see family you haven’t seen since the last time, but you can’t help but feel sad about the ones who will never be at the Liberty Park reunion again. A new generation has taken over and those of us who have held to the tradition see our grandchildren play on the swings, slides, and merry-go-rounds. Once it was our children. Life goes on and laughter rings out as we celebrate the bond of family.
I wonder if when the younger generation plays music tomorrow I will hear echoes of other reunions. If I think of how Uncle Charles always called me his “sweetie.” Will I hear the ring of horseshoes clanking on the post, and Jim’s laughter as he shares a joke with Uncle Orvie?
When we pack up our Crockpots and pass around goodbye hugs, we are already looking forward to next year, seeing old acquaintances, and greeting new family members. After all, why are we in the labor force, if not for family? So maybe the illogical way to spend the day is in seclusion totally relaxed.
However you spend your Labor Day, I hope it is worthy of a weekend that celebrates a full and productive life. Part of life is work, but the all consuming part of life is family and being with the people you love.
Sunday, August 24, 2008
Open Mike – Live Radio
Linda Newkirk, the executive director at the Alzheimer’s Association Mid-Missouri Chapter, joined me on KDRO, a local radio station, for a program called Open Mike. We talked about Alzheimer’s disease and our local Memory Walk.
I don’t know how many people are awake at 8:00 a.m. on a Saturday to listen, but it is a popular program. It gave us a golden opportunity to talk about the September 20 Sedalia Memory Walk and to let people know about the Chapter’s services.
I call myself the Alzheimer’s Association Poster Child. I’ve benefited from my acquaintance with the great staff at the Mid-Missouri Chapter since my initial contact when Jim first developed symptoms. The Alzheimer’s Association symbol used to be two people leaning into the “H” of the word Alzheimer’s. The slogan was “Someone to stand by you.” The logo has now changed to a stylistic symbol of a brain and a beaker, which represents the Alzheimer’s Association dual mission to support people living with the disease (and their caregivers) and research to find a cure for Alzheimer’s disease. The symbol has changed, like so many things do, but the heart beat of the organization is the same.
What qualifies me to be a poster child? My first contact with the Mid-Missouri Chapter was through a call to the 24 hour/7 day a week HELP line and, yes, I was connected automatically to my own chapter. I read every word of the literature they sent me and the Chapter newsletter. The only financial help I received for respite care was from the Alzheimer’s Association. They were the only ones who didn’t say Jim was too young to qualify. I registered Jim with Safe Return when he began to wander off. I attended educational programs that helped me develop caregiver strategies and learn more about dementia. Support Group was invaluable to me, and I can’t imagine why everyone doesn’t gather strength from others who know exactly what they are going through. I became an advocate and talked to my legislators on Memory Day and at the Public Policy Forum in Washington DC. I learned even more about the dedication of everyone involved at the Mid-Missouri Chapter during my six years as a Board Member. I developed friendships with staff, board members, other caregivers, and amazing people living with Alzheimer’s.
Jim and I participated in the 1998 Memory Walk with five other people and one dog. I followed that up with five years of being the Coordinator of the Sedalia Memory Walk. Our walk grew to embrace the entire community. As fulfilling as that experience was, I turned it over to Shelley who did a terrific job for the next four years. This year we have a new inexperienced coordinator and she is struggling. So, when they asked me to go on Open Mike, I was happy to talk about our Memory Walk. It was my baby, and I want it to continue to grow strong and healthy.
On the radio, Linda Newkirk and I talked about how Alzheimer’s affects entire families and how Memory Walk allows individuals to make a difference. Saturday, September 20, Sedalia will be on the MOVE to end Alzheimer’s.
Each September, Jim’s Team honors his memory at the Sedalia Memory Walk. This is our time to give back to the organization with “the compassion to care, the leadership to conquer.”
_______________________________________
The Sedalia Memory Walk is September 20, at the Highway Gardens on the Missouri State Fairgrounds. Registration begins at 8:30 and the one-mile stroll begins at 10:00. You can register at www.alz.org/Mid-Missouri or email me at lfisher@lsfisher.com.
Do you know when and where the Memory Walk closest to you takes place? You can go to www.alz.org, to search by state for your local Chapter’s Memory Walk schedule. Lace up your walking shoes and support the 5.2 million Americans with Alzheimer’s.
I don’t know how many people are awake at 8:00 a.m. on a Saturday to listen, but it is a popular program. It gave us a golden opportunity to talk about the September 20 Sedalia Memory Walk and to let people know about the Chapter’s services.
I call myself the Alzheimer’s Association Poster Child. I’ve benefited from my acquaintance with the great staff at the Mid-Missouri Chapter since my initial contact when Jim first developed symptoms. The Alzheimer’s Association symbol used to be two people leaning into the “H” of the word Alzheimer’s. The slogan was “Someone to stand by you.” The logo has now changed to a stylistic symbol of a brain and a beaker, which represents the Alzheimer’s Association dual mission to support people living with the disease (and their caregivers) and research to find a cure for Alzheimer’s disease. The symbol has changed, like so many things do, but the heart beat of the organization is the same.
What qualifies me to be a poster child? My first contact with the Mid-Missouri Chapter was through a call to the 24 hour/7 day a week HELP line and, yes, I was connected automatically to my own chapter. I read every word of the literature they sent me and the Chapter newsletter. The only financial help I received for respite care was from the Alzheimer’s Association. They were the only ones who didn’t say Jim was too young to qualify. I registered Jim with Safe Return when he began to wander off. I attended educational programs that helped me develop caregiver strategies and learn more about dementia. Support Group was invaluable to me, and I can’t imagine why everyone doesn’t gather strength from others who know exactly what they are going through. I became an advocate and talked to my legislators on Memory Day and at the Public Policy Forum in Washington DC. I learned even more about the dedication of everyone involved at the Mid-Missouri Chapter during my six years as a Board Member. I developed friendships with staff, board members, other caregivers, and amazing people living with Alzheimer’s.
Jim and I participated in the 1998 Memory Walk with five other people and one dog. I followed that up with five years of being the Coordinator of the Sedalia Memory Walk. Our walk grew to embrace the entire community. As fulfilling as that experience was, I turned it over to Shelley who did a terrific job for the next four years. This year we have a new inexperienced coordinator and she is struggling. So, when they asked me to go on Open Mike, I was happy to talk about our Memory Walk. It was my baby, and I want it to continue to grow strong and healthy.
On the radio, Linda Newkirk and I talked about how Alzheimer’s affects entire families and how Memory Walk allows individuals to make a difference. Saturday, September 20, Sedalia will be on the MOVE to end Alzheimer’s.
Each September, Jim’s Team honors his memory at the Sedalia Memory Walk. This is our time to give back to the organization with “the compassion to care, the leadership to conquer.”
_______________________________________
The Sedalia Memory Walk is September 20, at the Highway Gardens on the Missouri State Fairgrounds. Registration begins at 8:30 and the one-mile stroll begins at 10:00. You can register at www.alz.org/Mid-Missouri or email me at lfisher@lsfisher.com.
Do you know when and where the Memory Walk closest to you takes place? You can go to www.alz.org, to search by state for your local Chapter’s Memory Walk schedule. Lace up your walking shoes and support the 5.2 million Americans with Alzheimer’s.
Sunday, August 17, 2008
Life is Worth Living
I’m still on a bit of a high three days after the Alzheimer's Association OK/Ark Chapter’s educational symposium at Fort Smith. I was thrilled to finally meet Cheryl, Bob, and Jordan after months of emails setting up my two presentations.
Ft. Smith is a town that welcomes visitors with open hearts. Mayor Baker proclaimed August 14 “Linda Fisher Day” and presented me with the “Key to the Frontier.” The town motto is “Life is worth living in Ft. Smith!”
The day’s program began with “Writing as Therapy: Rocks and Pebbles” at the first general session. After a few opening remarks, I managed to knock over my glass of water and watch as my notes blurred into a soggy mess. It didn’t make any difference because I’m such a believer in the therapeutic benefits of writing that the notes are primarily to keep me on schedule.
I gave the keynote, “Alzheimer’s Can Happen at Any Age,” following the awards presentations. It may have not been an accident that all the breakables had been removed from the podium area prior to my presentation.
The Alzheimer’s Association offered a variety of programs to give family and professional caregivers skills and encouragement to continue with their important missions. Dr. Ed McMahon’s session on “Non-Pharmacologic Interventions” gave examples of how thinking outside the box can benefit people with dementia. Sandy Warmack and Jean Cosgrove facilitated a work shop called “It’s all the Rage.” Earplugs and rolled up construction paper helped us understand the limitations of a person with Alzheimer’s. Several other concurrent sessions were offered, but these were the ones I attended.
The educational symposium energized the participants and motivated them to be the best caregivers they can be. The positive feedback I received made me realize how important it is to share my years of caregiving experience with others who are beginning this journey.
No matter how much it may seem that way, life is never all bad. Moments of joy penetrate our saddest moments. It may be a smile, a touch, or a look that says “I remember” too. Sometimes I am amazed that I walked into the long dark tunnel through the land of dementia and emerged on the other side alive, happy, and optimistic. Most important, life is still worth living in Ft. Smith and in your hometown.
Ft. Smith is a town that welcomes visitors with open hearts. Mayor Baker proclaimed August 14 “Linda Fisher Day” and presented me with the “Key to the Frontier.” The town motto is “Life is worth living in Ft. Smith!”
The day’s program began with “Writing as Therapy: Rocks and Pebbles” at the first general session. After a few opening remarks, I managed to knock over my glass of water and watch as my notes blurred into a soggy mess. It didn’t make any difference because I’m such a believer in the therapeutic benefits of writing that the notes are primarily to keep me on schedule.
I gave the keynote, “Alzheimer’s Can Happen at Any Age,” following the awards presentations. It may have not been an accident that all the breakables had been removed from the podium area prior to my presentation.
The Alzheimer’s Association offered a variety of programs to give family and professional caregivers skills and encouragement to continue with their important missions. Dr. Ed McMahon’s session on “Non-Pharmacologic Interventions” gave examples of how thinking outside the box can benefit people with dementia. Sandy Warmack and Jean Cosgrove facilitated a work shop called “It’s all the Rage.” Earplugs and rolled up construction paper helped us understand the limitations of a person with Alzheimer’s. Several other concurrent sessions were offered, but these were the ones I attended.
The educational symposium energized the participants and motivated them to be the best caregivers they can be. The positive feedback I received made me realize how important it is to share my years of caregiving experience with others who are beginning this journey.
No matter how much it may seem that way, life is never all bad. Moments of joy penetrate our saddest moments. It may be a smile, a touch, or a look that says “I remember” too. Sometimes I am amazed that I walked into the long dark tunnel through the land of dementia and emerged on the other side alive, happy, and optimistic. Most important, life is still worth living in Ft. Smith and in your hometown.
Saturday, August 9, 2008
Double Booked
Some people think I’m insane when they see my calendar. Others just think I don’t realize each day has only 24 hours. Sometimes, I find myself double booked. Last Monday night I had two meetings at the same exact time, across town from each other. Just cancel one? Oh, heavens, no! I went to my BPW board meeting first, and then to the other, longer Memory Walk planning meeting.
Thursday night, I had a dinner meeting, on the opening day of the State Fair. After the meeting adjourned, three of us went to the fair and caught the end of the Air Supply concert. Who says you can’t do it all?
Friday was my day off, but my plans for the day: work a few hours, eat grilled hamburgers at the going-away lunch for our summer employee, and make my 1:15 appointment at W-K Chevrolet to get my oil changed. And then, what the heck, I might as well go to Brian’s Gym for a workout. Not a problem. Except, I got sick Thursday night. I’ll spare you the gross details, but I was violently ill. Kind of reminded me of the time I had food poisoning. That time, Jim hauled me into to the emergency room. After waiting two hours and no doctor in sight, I decided if I was going to die, I would much rather die at home in my own bathroom than the hospital’s public restroom.
I spent Friday totally wiped out. I slept, drank a little water, ate a few bites of bread, slept, called and cancelled everything, slept, and slept. By evening, I felt better so I stayed awake for a few hours, and then went to bed and slept through the night. When my alarm went off this morning—yes, I know it’s Saturday but I had a conference to attend—thankfully, I had slept off my illness. Late this afternoon on the way home, I stopped by work and finished the reports I planned on doing yesterday.
Have I always been like this? No! I became possessed after ten years of being a caregiver. All primary caregivers of loved ones with Alzheimer’s know about the 36 Hour Day. As crazy as my calendar is, it is still calm compared to that of a caregiver.
I’m not sure what happened to the person I once was, but I think she evaporated into a puff of smoke. What happened to the days when I couldn’t find enough to do? What happened to curling up with a book on a rainy day? What happened to my own personal concerts with Jim singing and playing his Fender guitar?
Early onset dementia changed everything. I’m not the person I used to be, and I will never be that person again. I will never take life or love for granted.
Double booked? So what? At least I’m not triple booked. Often.
Thursday night, I had a dinner meeting, on the opening day of the State Fair. After the meeting adjourned, three of us went to the fair and caught the end of the Air Supply concert. Who says you can’t do it all?
Friday was my day off, but my plans for the day: work a few hours, eat grilled hamburgers at the going-away lunch for our summer employee, and make my 1:15 appointment at W-K Chevrolet to get my oil changed. And then, what the heck, I might as well go to Brian’s Gym for a workout. Not a problem. Except, I got sick Thursday night. I’ll spare you the gross details, but I was violently ill. Kind of reminded me of the time I had food poisoning. That time, Jim hauled me into to the emergency room. After waiting two hours and no doctor in sight, I decided if I was going to die, I would much rather die at home in my own bathroom than the hospital’s public restroom.
I spent Friday totally wiped out. I slept, drank a little water, ate a few bites of bread, slept, called and cancelled everything, slept, and slept. By evening, I felt better so I stayed awake for a few hours, and then went to bed and slept through the night. When my alarm went off this morning—yes, I know it’s Saturday but I had a conference to attend—thankfully, I had slept off my illness. Late this afternoon on the way home, I stopped by work and finished the reports I planned on doing yesterday.
Have I always been like this? No! I became possessed after ten years of being a caregiver. All primary caregivers of loved ones with Alzheimer’s know about the 36 Hour Day. As crazy as my calendar is, it is still calm compared to that of a caregiver.
I’m not sure what happened to the person I once was, but I think she evaporated into a puff of smoke. What happened to the days when I couldn’t find enough to do? What happened to curling up with a book on a rainy day? What happened to my own personal concerts with Jim singing and playing his Fender guitar?
Early onset dementia changed everything. I’m not the person I used to be, and I will never be that person again. I will never take life or love for granted.
Double booked? So what? At least I’m not triple booked. Often.
Saturday, August 2, 2008
News from ICAD: Elderspeak Increases Resistance to Care
Researchers are not only trying to find a cure for Alzheimer’s, they want to improve quality of life and improve the standard of care for people with dementia. The results of an ongoing study released at the 2008 Alzheimer’s Association International Conference on Alzheimer’s Disease (ICAD) involves communication. Researchers used “Elderspeak” to define a communication method similar to a parent using baby-talk phrases such as, “Sweetie pie, it’s time for us to get up now” or “That’s a no-no!” This study validates what we caregivers knew all along: Our loved ones with dementia are adults and need to be treated with respect.
During the study, resistance to care was measured in relationship to dementia care unit staff’s communication with the residents. The communication styles were broken down into normal talk, elderspeak, and silence. The study shows that it is significantly more effective to talk to residents in normal conversation than elderspeak. Silence was neutral.
Jim developed aphasia early in his disease and we learned to cope with his diminishing grasp of spoken and written communication. In effect, my unscientific study spanned ten years. I never used baby talk, but it was perfectly acceptable for me to call Jim by endearments because I always had. In fact, one time when I addressed him as “Jim” in front of our kids, they both giggled because they had NEVER heard either one of us call the other by name. Yet, I know that once Jim was in the nursing home, he had to cringe when staff called him by an intimate endearment reserved for use by people who loved him.
When a person’s spoken language is limited, and they are ordered to do something in an unkind tone, or treated like a child, they will react in the only way they can—by resisting. This resistance is looked upon as “behavior” and reflects upon the resident rather than the staff.
Some states require dementia specific training with communication as one of the elements. The results of this study should be reason enough for long term care facilities to go above and beyond any state laws in improving communication between staff and residents. When a resident resists care, it is stressful for staff and increases the time required to complete a task.
Using respectful communication methods is a win-win situation whether your loved one is at home or in long term care. Proper training allows staff to perform at an efficient level, and residents will be more cooperative. Family caregivers can benefit from the knowledge that their communication style can greatly impact their caregiving success.
Source: Respectful Adult Communications Improves Quality of Care in Alzheimer’s at http://www.alz.org/. The study conducted by Kristine N. Williams, RN, PhD, and the University of Kansas School of Nursing was funded by the National Institute of Health.
During the study, resistance to care was measured in relationship to dementia care unit staff’s communication with the residents. The communication styles were broken down into normal talk, elderspeak, and silence. The study shows that it is significantly more effective to talk to residents in normal conversation than elderspeak. Silence was neutral.
Jim developed aphasia early in his disease and we learned to cope with his diminishing grasp of spoken and written communication. In effect, my unscientific study spanned ten years. I never used baby talk, but it was perfectly acceptable for me to call Jim by endearments because I always had. In fact, one time when I addressed him as “Jim” in front of our kids, they both giggled because they had NEVER heard either one of us call the other by name. Yet, I know that once Jim was in the nursing home, he had to cringe when staff called him by an intimate endearment reserved for use by people who loved him.
When a person’s spoken language is limited, and they are ordered to do something in an unkind tone, or treated like a child, they will react in the only way they can—by resisting. This resistance is looked upon as “behavior” and reflects upon the resident rather than the staff.
Some states require dementia specific training with communication as one of the elements. The results of this study should be reason enough for long term care facilities to go above and beyond any state laws in improving communication between staff and residents. When a resident resists care, it is stressful for staff and increases the time required to complete a task.
Using respectful communication methods is a win-win situation whether your loved one is at home or in long term care. Proper training allows staff to perform at an efficient level, and residents will be more cooperative. Family caregivers can benefit from the knowledge that their communication style can greatly impact their caregiving success.
Source: Respectful Adult Communications Improves Quality of Care in Alzheimer’s at http://www.alz.org/. The study conducted by Kristine N. Williams, RN, PhD, and the University of Kansas School of Nursing was funded by the National Institute of Health.
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