There has to be a scientific explanation why time goes by faster as we grow older. Maybe we just gain momentum and pick up speed as we race through life.
Another year is almost gone, and we individually and collectively reflect on it. TV tributes abound for famous people who died this year: Michael, Farrah, Bea, Eunice, Ted, Walter, Soupy… Everyone that touches our lives becomes part of us. Sometimes we take celebrity deaths personally, but grief over a superstar is only a fraction of what we feel when something happens to loved ones in our inner circle.
When I was a primary caregiver, the days felt like they had too many waking hours and not nearly enough sleeping hours. Yet, I wanted to grab time and slow it down. Time was the enemy during Jim’s slow, steady decline into the land of dementia.
Like it or not, our world changes every day. My son told me a few nights ago that I should get a texting plan for my cell phone. I do something really weird with my cell phone—I talk on it. I believe a conspiracy is afoot to force me to get with the program. I haven’t had this much pressure since the kids were embarrassed about the dial telephone hanging on the kitchen wall.
My phone has been out since Christmas day, but I have my cell phone to keep me from feeling cut off from the world. I don’t have Internet because I’m on dialup. I can live without checking my email, commenting on Facebook, or even posting my blog. It’s an inconvenience, but I’m not losing any sleep over it.
Our changing world has made us dependent on the World Wide Web. How did people find destinations before GPS systems or Google Map? It is eerie to plug in an address and see images of your house on the screen. Well, they haven’t mapped out here in the boonies where I live, but my son’s house is not only pictured, you can see their mower kicking up grass clippings. You can become a little figure and walk through the neighborhood.
My granddaughter was playing with Goggle Map and found herself in Hawaii. “Can you find Fort DeRussy Chapel?” I asked. We walked through the surrounding neighborhood, and I saw a lot of familiar landmarks—including the Ilikai where Jim and I spent our honeymoon.
Maybe we should all just become virtual tourists. Think of how much stress, strain, time, and money we could save. I get emails daily about upcoming net meetings. People work from home, and come Monday, I’m going to be mighty jealous of them.
Embracing change and moving forward is the secret to a happy and productive life. We can’t live in the past, but the past lives in us.
We each produce, direct, and star in our own reality show. We faithfully tune in each day to experience the next installment. Life, like any good show builds on the previous episodes making the plot more intricate. Characters worm their way into our lives, and we love them just as they are. Once we accept their flaws, we find them endearing.
When we wrap up the past, we open endless possibilities for an unfolding future where adventure waits to happen. In life, we can’t fast forward through the bad parts or play the good times in slow motion. We should grasp each moment, and live it to the fullest.
I don’t know about you, but I’m looking forward to the New Year just as eagerly as ever. I hope your reality is filled with health, happiness, and love.
Sunday, December 27, 2009
Sunday, December 20, 2009
Sparkle Bright with Fairy Dust
If I hadn’t been so busy the week leading up to our family get-together, I would have been better prepared. I spent my day off this week writing articles about Alzheimer’s, so my “to-do” list turned into the “didn’t-get-done” list.Saturday, I woke up at 6:30 with the idea of getting an early start. My philosophy turned into what gets done is done, and what doesn’t just will not happen this year. While I jumpstarted myself with coffee, my daughter-in-law made biscuits and gravy for breakfast.
My granddaughter stayed with me while the rest of the family went to town. I wrapped presents behind closed doors and handed her gifts to place beneath the tree. I vacuumed and worked on laundry. My granddaughter helped me fold clothes, sort through paper plates, and bring up more decorations from the basement. “Grandma Linda, you sure have a lot of stuff down here,” she said. She read from labels on plastic storage boxes, “Here’s Thanksgiving, St. Patrick’s Day, and more Christmas.”
The day flew by, but when the rest of the family arrived everything was ready. My youngest granddaughter was Santa’s helper and distributed gifts. My four grandchildren range in age from 2 to 15, and have a variety of interests. The older two prefer doing their own shopping so it made more sense to give them pre-paid credit cards. Santa’s helper prefers Barbie dolls and princesses. My youngest grandson likes trucks and cars.
In the midst of tearing Christmas paper and prying gifts out of the packaging, shiny pieces of foil flew from the Peter Pan book and sprinkled the carpet. “Ooops! Glitter is all over the floor!” my niece said.
“That’s not glitter, that’s fairy dust,” I replied. “Cathy Rigby put it inside the book when she signed it.”
Cameras flashed as we captured moments—revving up Monster Trucks to jump Matchbox cars and assembling the Barbie TV Cooking Show set. It’s hard to believe that Barbie can cook in those high heels and wearing that mini skirt.
After we—I mean the kids—played with their toys for a while, everyone began to gather up paper, boxes, and debris scattered throughout the house. A heroic attempt was made to scoop up the fairy dust, but it was everywhere so I volunteered to vacuum later.
Considering the chaos yesterday, everything is remarkably back in order. I have a lot of leftovers, but microwaved biscuits and gravy hit the spot.
After church this morning, I switched on the fiber-optic tree, put my feet up and read the paper. I haven’t vacuumed yet, and fairy dust winks at me from the carpet. Yesterday my house was filled with love and laughter. Today is silent, peaceful, and a time to reflect on all the magic that has graced my life.
With family time behind me, Christmas seems to be over. The bright sparkle of fairy dust and the lighted tree remind me that Christmas isn’t just a “holiday season”—it’s a way of life.
Sunday, December 13, 2009
Alzheimer’s Support Group: HBO Screening
We watched Momentum in Science Part II at our last support group meeting. When a new person entered the room and introduced herself, she said, “My dad is in the film.” She didn’t know if he was in the segment we were going to watch. I sat close to her and ask her to let us know if he was in this segment. Toward the end, she said, “That’s my dad.”
I had watched the entire HBO Project before, but picked up more information from the second viewing. An interesting chapter in this part was the DeMoe family story. Six siblings are being studied to try to learn more about familial early-onset Alzheimer’s. Out of the six, only Karla does not have the gene that will cause the type of Alzheimer’s that ended their father’s life at age 58. My heart ached for the five with the disease, but the saddest person was Karla. She has taken on responsibility for her brothers and sisters and already misses them as they spiral into the Alzheimer’s abyss.
Researchers believe they can find more effective treatments and possibly an immunization. The immunization trial was put on hold after some of those studied developed encephalitis. Immunization showed promise. It did a marvelous job of removing plaque, one of the hallmarks of Alzheimer’s.
When we think about diseases that have been eradicated by immunization, it would seem this would be the best case scenario for Alzheimer’s. It would certainly mean a life-changing difference for families like the DeMoe’s who have a new generation with a 50/50 chance of developing Alzheimer’s.
Dementia is devastating for the entire family. Karla is as much a victim of Alzheimer’s as her siblings. She is more aware of their personality erosion than they are. Her siblings will make peace with the disease, but Karla has already begun to grieve their losses.
Each person with dementia is an individual whose life has been decimated. The effects of Alzheimer’s types of dementia explodes outward with the power of a bomb blast and attempts to destroy the lives of those closest to ground zero.
My life was forever changed with Jim’s dementia. And as heart wrenching as Jim’s disease was for me, I think about the DeMoes and my friend Karen Henley whose husband Mike has familial Alzheimer’s. Karen’s life has been forever changed by her husband’s illness, and she must carry a burden in her heart for the possibility that her children may not be safe from the same disease. How much lighter would her burden be if an immunization could protect her children?
During discussion following the screening, we talked about some of the people who had taken part in experimental treatments. The immunization study consisted of giving several small doses of the drug. One woman whose husband received the injections said, “People kept asking how he was and we would say he is holding.” Holding is about as good as it gets with Alzheimer’s. The couple was disappointed and angry when the treatment ended.
Jim was on an experimental drug. I asked my sons for their opinion before enrolling Jim in the Phase III trial. My youngest son said, “Dad would be the first person to want to try it.” Jim was on the drug several months, but it had too many side effects and was never approved.
“My dad has changed so much since the film was made,” our guest at support group said. “He is frailer now.” I knew what she meant. Over the ten years Jim had the disease, his physical appearance changed dramatically.
Families like the DeMoes and Henleys are in the minority. Most people do not know the reality of living with dementia until it strikes their family. Jim was the first and, thankfully so far, the only person in his family to develop the rare form of dementia he had.
According to the film, Alzheimer’s is the second most dreaded disease after cancer. More than five million Americans have Alzheimer’s and the number of cases is expected to double every twenty years. Researchers are exploring many promising avenues, and work diligently toward changing Alzheimer’s from a hopeless disease to a manageable one.
***
For information about drug trials or to become Alzheimer’s advocate visit www.alz.org.
I had watched the entire HBO Project before, but picked up more information from the second viewing. An interesting chapter in this part was the DeMoe family story. Six siblings are being studied to try to learn more about familial early-onset Alzheimer’s. Out of the six, only Karla does not have the gene that will cause the type of Alzheimer’s that ended their father’s life at age 58. My heart ached for the five with the disease, but the saddest person was Karla. She has taken on responsibility for her brothers and sisters and already misses them as they spiral into the Alzheimer’s abyss.
Researchers believe they can find more effective treatments and possibly an immunization. The immunization trial was put on hold after some of those studied developed encephalitis. Immunization showed promise. It did a marvelous job of removing plaque, one of the hallmarks of Alzheimer’s.
When we think about diseases that have been eradicated by immunization, it would seem this would be the best case scenario for Alzheimer’s. It would certainly mean a life-changing difference for families like the DeMoe’s who have a new generation with a 50/50 chance of developing Alzheimer’s.
Dementia is devastating for the entire family. Karla is as much a victim of Alzheimer’s as her siblings. She is more aware of their personality erosion than they are. Her siblings will make peace with the disease, but Karla has already begun to grieve their losses.
Each person with dementia is an individual whose life has been decimated. The effects of Alzheimer’s types of dementia explodes outward with the power of a bomb blast and attempts to destroy the lives of those closest to ground zero.
My life was forever changed with Jim’s dementia. And as heart wrenching as Jim’s disease was for me, I think about the DeMoes and my friend Karen Henley whose husband Mike has familial Alzheimer’s. Karen’s life has been forever changed by her husband’s illness, and she must carry a burden in her heart for the possibility that her children may not be safe from the same disease. How much lighter would her burden be if an immunization could protect her children?
During discussion following the screening, we talked about some of the people who had taken part in experimental treatments. The immunization study consisted of giving several small doses of the drug. One woman whose husband received the injections said, “People kept asking how he was and we would say he is holding.” Holding is about as good as it gets with Alzheimer’s. The couple was disappointed and angry when the treatment ended.
Jim was on an experimental drug. I asked my sons for their opinion before enrolling Jim in the Phase III trial. My youngest son said, “Dad would be the first person to want to try it.” Jim was on the drug several months, but it had too many side effects and was never approved.
“My dad has changed so much since the film was made,” our guest at support group said. “He is frailer now.” I knew what she meant. Over the ten years Jim had the disease, his physical appearance changed dramatically.
Families like the DeMoes and Henleys are in the minority. Most people do not know the reality of living with dementia until it strikes their family. Jim was the first and, thankfully so far, the only person in his family to develop the rare form of dementia he had.
According to the film, Alzheimer’s is the second most dreaded disease after cancer. More than five million Americans have Alzheimer’s and the number of cases is expected to double every twenty years. Researchers are exploring many promising avenues, and work diligently toward changing Alzheimer’s from a hopeless disease to a manageable one.
***
For information about drug trials or to become Alzheimer’s advocate visit www.alz.org.
Sunday, December 6, 2009
Widows Don't Wear Black
Tuesday was my first day at work after a week’s vacation. When I opened my mail, I saw an advertisement that Senator Jean Carnahan would be at Sedalia Book and Toy to sign The Tide Always Comes Back. I had met her during my annual pilgrimages to Washington DC for the Alzheimer’s Association.
On the drive to the bookstore, I scolded myself for giving in to temptation. Hadn’t I spent several hours cataloging more than 250 books in my home library the day before? Didn’t dozens of unread books sit on my shelves? No amount of mental chastisement kept me from being one of the first people in line to buy the former Missouri senator’s book.
Jean became an accidental senator when her husband was elected to that office posthumously. Taking office so soon after her husband’s death in a plane crash, Jean jumped into the challenge of representing her state and didn’t dwell on widowhood. In The Tide Always Comes Back she wrote: “Sure, I’ve checked those marital status boxes on printed forms, but I have never thought of myself as a widow in the traditional sense. For so long, society has identified widows as poor, sniveling souls unable to face the world.”
I read this passage to Brenda, a co-worker who was recently widowed. “I just filled out a form at the doctor’s office and wondered why they needed to know that I was a widow. I almost didn’t mark the box,” she said.
The average widow is fifty-five years old and remains a widow for fourteen years. Seven hundred thousand women are widowed each year. At one time widowhood was a way of life, but modern women do not wear black for a year and enter into a dignified state of mourning. The truth is most widows are back on the job shortly after the funeral. We see strong women reel, fall to their knees, and then bounce back at astonishing speed.
Many people read my blog and do not realize I am a widow. I interject stories about Jim and caregiving so that others may benefit from our experiences. When I think of widows, I remember Jim’s reaction after his Aunt Mary, and then his mother, were widowed. “I think widows are secret gadabouts,” he said. His theory was reinforced when my mother was widowed a few months later.
Not long ago, my mom and Aunt Labetta dropped by work to visit me. Aunt Labetta put her arms on our shoulders and said, “Here we are—three widows.” It’s strange to think of myself as a widow and it’s not easy to identify either of those two active, laughing women as widows. They travel, occasionally make a run to the casino, and play guitars together.
I don’t know any traditional widows. The widows I know are resilient and unafraid of life. Often, death of a loved one reinforces the importance of living life to the fullest. Marriage that lasts until “death do us part” leaves a sense of fulfillment.
The years Jim and I spent together will always be a major part of me. The give and take of marriage, the ups and downs, and Jim’s devastating dementia have shaped my personality and endowed me with a life’s mission. I do not write about Jim and the life of a caregiver due to unrelenting grief. Writing about life helps me heal and gives me hope that my future is full of adventure, excitement, accomplishment, and love.
The traditional widow is a stereotype. Like Senator Carnahan, I do not think of myself as a widow. I think of myself as a woman who was fortunate enough to have enjoyed enduring love, suffered great loss, and rebounded to a full rich life.
On the drive to the bookstore, I scolded myself for giving in to temptation. Hadn’t I spent several hours cataloging more than 250 books in my home library the day before? Didn’t dozens of unread books sit on my shelves? No amount of mental chastisement kept me from being one of the first people in line to buy the former Missouri senator’s book.
Jean became an accidental senator when her husband was elected to that office posthumously. Taking office so soon after her husband’s death in a plane crash, Jean jumped into the challenge of representing her state and didn’t dwell on widowhood. In The Tide Always Comes Back she wrote: “Sure, I’ve checked those marital status boxes on printed forms, but I have never thought of myself as a widow in the traditional sense. For so long, society has identified widows as poor, sniveling souls unable to face the world.”
I read this passage to Brenda, a co-worker who was recently widowed. “I just filled out a form at the doctor’s office and wondered why they needed to know that I was a widow. I almost didn’t mark the box,” she said.
The average widow is fifty-five years old and remains a widow for fourteen years. Seven hundred thousand women are widowed each year. At one time widowhood was a way of life, but modern women do not wear black for a year and enter into a dignified state of mourning. The truth is most widows are back on the job shortly after the funeral. We see strong women reel, fall to their knees, and then bounce back at astonishing speed.
Many people read my blog and do not realize I am a widow. I interject stories about Jim and caregiving so that others may benefit from our experiences. When I think of widows, I remember Jim’s reaction after his Aunt Mary, and then his mother, were widowed. “I think widows are secret gadabouts,” he said. His theory was reinforced when my mother was widowed a few months later.
Not long ago, my mom and Aunt Labetta dropped by work to visit me. Aunt Labetta put her arms on our shoulders and said, “Here we are—three widows.” It’s strange to think of myself as a widow and it’s not easy to identify either of those two active, laughing women as widows. They travel, occasionally make a run to the casino, and play guitars together.
I don’t know any traditional widows. The widows I know are resilient and unafraid of life. Often, death of a loved one reinforces the importance of living life to the fullest. Marriage that lasts until “death do us part” leaves a sense of fulfillment.
The years Jim and I spent together will always be a major part of me. The give and take of marriage, the ups and downs, and Jim’s devastating dementia have shaped my personality and endowed me with a life’s mission. I do not write about Jim and the life of a caregiver due to unrelenting grief. Writing about life helps me heal and gives me hope that my future is full of adventure, excitement, accomplishment, and love.
The traditional widow is a stereotype. Like Senator Carnahan, I do not think of myself as a widow. I think of myself as a woman who was fortunate enough to have enjoyed enduring love, suffered great loss, and rebounded to a full rich life.
Saturday, November 28, 2009
Let it Glow
Black Friday is theoretically the biggest shopping day of the year, but I did my share of helping the economy during my Branson trip. Friday, I slept late and spent the day leisurely dragging out my Christmas decorations. I usually start with my Old World Santas, but this year began with the nutcrackers instead. With careful arrangement, most of the nutcrackers fit on the shelf above my entertainment center.It was a beautiful day and ideal weather to string the lights on the back deck. Last year, the day of our family get-together, a friend and I wound the lights around the railing wearing gloves and heavy coats.
Once the tree was up and the fiber optic bear lit, it was time to relax with a spot of tea and flip the switch for the lights. I’m still a far cry from the Griswolds, but this as glowing as lights get around my house.
It’s not like me to decorate for Christmas this early, but for some reason, I was compelled to begin on Black Friday. I’ve enjoyed a leisurely vacation this week staying close to home. I worked on my manuscript, but didn’t push it too much and opted for some much needed downtime.
Several years ago, we de-stressed Christmas by changing our tradition. When we have our family gathering, each adult brings an inexpensive gift to exchange. I buy educational CDs for my grandchildren and a few small gifts.
When I was unloading the Christmas totes yesterday, it was bittersweet. I found the tiny Christmas tree I used to put in Jim’s room at the nursing home. I came across a framed snapshot I always set out during the holidays. It is a picture of Jim, me and our oldest grandson sitting on the living room floor in front of the Christmas tree. Jim is wearing his denim jacket, Vietnam Veteran’s cap, and dark sunglasses. The picture is not dated, but this outfit was his hallmark of early dementia.
One year, when I put photographs in a box to clear the shelves for decorations, Jim took them out of the box and set them back on the shelf. He didn’t want me to change things, he wanted familiar family pictures.
Pictures freeze a small moment in time. Can I remember what I was thinking at the moment the camera snapped? Maybe not, but the look we share is filled with love and happiness.
This will be my fifth Christmas without Jim. Christmas is probably the hardest holiday for people who have lost a loved one. From childhood we build high expectations of what Christmas should be and are disappointed when it doesn’t reach the level we anticipated. Once we understand that the greatest gifts are not wrapped in shiny paper and topped with bows, we are free to celebrate the real gifts in life.
This year, I look forward to the holiday season with an inner peace and joyfulness I haven’t felt for a long time. My joy has nothing to do with shopping, buying or receiving presents. It has to do with family and friends, to love and be loved.
A picture perfect Christmas needs snow and glistening trees. One Christmas refrain is, “Let it snow!” A heart perfect Christmas needs love and hope. When I flip the switch and the house is aglow with Christmas lights, my expectation is that the brightest glow will be in my heart and on my face.
Here’s to wishing your holiday refrain will be “Let it glow!”
Monday, November 23, 2009
Everything Changes
Last weekend evolved into a whirlwind of shows and shopping. A girls’ weekend—friends spending time together in Branson.
Visiting Branson and Silver Dollar City is a metamorphic experience for a native Missourian. Our little moth has changed into a glitzy butterfly, and the razzle-dazzle masks the charm of small town Branson. When I was a student at Hard Work U, Branson had a four way stop and two or three small country music theatres. Dick’s Five and Dime was there, but instead of being a tourist attraction, it was just a place where you could buy inexpensive items.
Silver Dollar City has changed from a small local attraction with a train ride, the Fire in the Hole and a few pickers and grinners to an extravaganza of professional shows, thrill rides, lights in every tree, bush, hollow, building, structure, and a five story Christmas tree—four million lights in all.
Branson is always bittersweet for me because Jim and I spent a lot of time there, especially when his dementia made our trips to Colorado much harder. Being a musician himself, Jim loved the music shows. His favorite performer was Tom Brumley and the highlight of each Branson trip. We had season passes to Silver Dollar City and enjoyed taking our grandson with us when he was little. I’ll never forget the weekend when he and Jim went into the restroom and I waited and worried about what was taking them so long. While I vigilantly guarded the door, they walked up behind me. They had exited on the other side of the building and my four-year-old grandson led his grandpa back to me.
I have more memories of Silver Dollar City and Branson than they have Christmas lights. This weekend, I added to those memories. The production of A Dickens’ Christmas Carol was performed by a talented troupe that would have done Broadway proud. As if that wasn’t enough, my friends and I experienced Cathy Rigby as Peter Pan. The show had so much magic that we all went home with pockets full of fairy dust and determination to never grow up.
Branson and Silver Dollar City have both become unrecognizable—different, but still hold the magic of a lifetime of memories. Where my dad used to fish is now a multi-million dollar shopping area known as The Landing. Streetscaping with gaslights, fountains, Christmas lights, old fashioned trolleys and street performers give it the look and feel of other upscale “old town” shopping centers scattered throughout the United States.
I’m sure a lot of tourists feel like they’ve taken a step back in time when they visit Branson. Sometimes I feel like I’ve leapt into the future and don’t really know this place at all. Branson is like a rock star with countless facelifts to deliberately remove the flaws and accidentally erase the character that made it unique.
The hills don’t look anything like they did forty years ago, but then neither do I. Everything changes. How we react to those changes determine whether we continue to enjoy life or groan about the “good ole days.” I don’t know about you, but I intend to find as much joy as I can while I pass through this world.
Branson is most definitely filled with entertainment choices and great places to eat. Even with my determination to be flexible, I’ll admit that slow moving traffic, elbow to elbow shopping, and trolling for a parking space is annoying. Spending time with friends and enjoying world class entertainment adds to my treasure trove of happy memories.
Visiting Branson and Silver Dollar City is a metamorphic experience for a native Missourian. Our little moth has changed into a glitzy butterfly, and the razzle-dazzle masks the charm of small town Branson. When I was a student at Hard Work U, Branson had a four way stop and two or three small country music theatres. Dick’s Five and Dime was there, but instead of being a tourist attraction, it was just a place where you could buy inexpensive items.
Silver Dollar City has changed from a small local attraction with a train ride, the Fire in the Hole and a few pickers and grinners to an extravaganza of professional shows, thrill rides, lights in every tree, bush, hollow, building, structure, and a five story Christmas tree—four million lights in all.
Branson is always bittersweet for me because Jim and I spent a lot of time there, especially when his dementia made our trips to Colorado much harder. Being a musician himself, Jim loved the music shows. His favorite performer was Tom Brumley and the highlight of each Branson trip. We had season passes to Silver Dollar City and enjoyed taking our grandson with us when he was little. I’ll never forget the weekend when he and Jim went into the restroom and I waited and worried about what was taking them so long. While I vigilantly guarded the door, they walked up behind me. They had exited on the other side of the building and my four-year-old grandson led his grandpa back to me.
I have more memories of Silver Dollar City and Branson than they have Christmas lights. This weekend, I added to those memories. The production of A Dickens’ Christmas Carol was performed by a talented troupe that would have done Broadway proud. As if that wasn’t enough, my friends and I experienced Cathy Rigby as Peter Pan. The show had so much magic that we all went home with pockets full of fairy dust and determination to never grow up.
Branson and Silver Dollar City have both become unrecognizable—different, but still hold the magic of a lifetime of memories. Where my dad used to fish is now a multi-million dollar shopping area known as The Landing. Streetscaping with gaslights, fountains, Christmas lights, old fashioned trolleys and street performers give it the look and feel of other upscale “old town” shopping centers scattered throughout the United States.
I’m sure a lot of tourists feel like they’ve taken a step back in time when they visit Branson. Sometimes I feel like I’ve leapt into the future and don’t really know this place at all. Branson is like a rock star with countless facelifts to deliberately remove the flaws and accidentally erase the character that made it unique.
The hills don’t look anything like they did forty years ago, but then neither do I. Everything changes. How we react to those changes determine whether we continue to enjoy life or groan about the “good ole days.” I don’t know about you, but I intend to find as much joy as I can while I pass through this world.
Branson is most definitely filled with entertainment choices and great places to eat. Even with my determination to be flexible, I’ll admit that slow moving traffic, elbow to elbow shopping, and trolling for a parking space is annoying. Spending time with friends and enjoying world class entertainment adds to my treasure trove of happy memories.
Friday, November 13, 2009
Hugs Are Better Than Drugs
In the past few weeks, I’ve had the opportunity to attend some outstanding Alzheimer’s training. I also read two good books about dementia.
In late October, I went to the Alzheimer’s Association Heart of America’s Train the Trainer, Building Creative Caregivers. Last Friday I went to the Mid-Missouri Chapter’s program on genetic studies. No matter how much I learn about Alzheimer’s, I pick up new information at each program I attend and from each book I read.
At the Building Creative Caregivers training session, I received a thick workbook. As I began to read through the details of all the modules, I came across reference to The Best Friends Approach to Alzheimer’s Care by Virginia Bell and David Troxel. The book goes hand in hand with the “Person First” module in the Train the Trainer manual.
I sat on my porch this afternoon reading the book. I found “An Alzheimer’s Disease Bill of Rights” to be a logical set of guidelines. In the detail, for “To be free from psychotropic drugs, if possible” I saw the statement: Hugs are usually better than drugs. I wholeheartedly agree with that statement.
The Best Friends Approach is written with professional caregivers in mind. It is a way to provide care based on meeting the psychological as well as physical needs of a person who has been diagnosed with dementia. Family caregivers know the history and preferences of their loved one, but when professionals treat everyone the same, they are denying our individual natures and preferences.
It is important to minister to the soul and spirit as well as the physical needs when a person faces the challenges of dementia. Bell and Troxel liken Alzheimer’s disease to a long trip in a foreign land where we can’t speak the language, know the customs, or understand how to use the phone.
When caring for a person with dementia we must concentrate on what they can do rather than what they cannot do. Can they still enjoy a walk? A drive? A cup of coffee where they can watch birds gather at a feeder? Jim was a musician and never lost his love of country music. He had a personal tape player with headphones. When the tape ended, Jim had to rely on someone else to turn the tape and play the other side. How easy would it be now to fill an IPod with someone’s favorite music?
At the Mid-Missouri program this week, one of the staff members asked me if I had read Still Alice. She told me she had just finished the book and thought it was excellent. I bought the book from Lisa Genova last March at the Alzheimer’s Association Public Policy Forum. I had heard a lot about the book, but when I realized Genova based the fictional story on her research of early onset Alzheimer’s rather than personal experience, I figured it was another glamorized story about Alzheimer’s with no basis on reality.
I read Still Alice in a few days. Genova makes Alice seem like a real person and you can feel Alice’s confusion and grief as the disease brings an end to her familiar life. The journey for Alice and her family are realistic. The conflicts between love and loss, selfishness and generosity, denial and acceptance have been experienced by millions of families when they realize their loved one cannot be cured.
Yes, the past few weeks have been filled with learning. Last night at support group, we showed “Momentum in Science Part I” from the HBO Alzheimer’s Project. Although I had watched the film before, I learned from it. It was interesting to see the relationship between brain disease and overall health.
Much has been learned about Alzheimer’s disease, but so much of it is still a mystery. As scientists seek effective treatment, we must provide the best care possible for those who have the disease now. With a best friends approach, we can provide person first care to improve quality of life whether a person lives at home or in a long-term care facility.
Hugs are indeed better than drugs and a lot less expensive.
In late October, I went to the Alzheimer’s Association Heart of America’s Train the Trainer, Building Creative Caregivers. Last Friday I went to the Mid-Missouri Chapter’s program on genetic studies. No matter how much I learn about Alzheimer’s, I pick up new information at each program I attend and from each book I read.
At the Building Creative Caregivers training session, I received a thick workbook. As I began to read through the details of all the modules, I came across reference to The Best Friends Approach to Alzheimer’s Care by Virginia Bell and David Troxel. The book goes hand in hand with the “Person First” module in the Train the Trainer manual.
I sat on my porch this afternoon reading the book. I found “An Alzheimer’s Disease Bill of Rights” to be a logical set of guidelines. In the detail, for “To be free from psychotropic drugs, if possible” I saw the statement: Hugs are usually better than drugs. I wholeheartedly agree with that statement.
The Best Friends Approach is written with professional caregivers in mind. It is a way to provide care based on meeting the psychological as well as physical needs of a person who has been diagnosed with dementia. Family caregivers know the history and preferences of their loved one, but when professionals treat everyone the same, they are denying our individual natures and preferences.
It is important to minister to the soul and spirit as well as the physical needs when a person faces the challenges of dementia. Bell and Troxel liken Alzheimer’s disease to a long trip in a foreign land where we can’t speak the language, know the customs, or understand how to use the phone.
When caring for a person with dementia we must concentrate on what they can do rather than what they cannot do. Can they still enjoy a walk? A drive? A cup of coffee where they can watch birds gather at a feeder? Jim was a musician and never lost his love of country music. He had a personal tape player with headphones. When the tape ended, Jim had to rely on someone else to turn the tape and play the other side. How easy would it be now to fill an IPod with someone’s favorite music?
At the Mid-Missouri program this week, one of the staff members asked me if I had read Still Alice. She told me she had just finished the book and thought it was excellent. I bought the book from Lisa Genova last March at the Alzheimer’s Association Public Policy Forum. I had heard a lot about the book, but when I realized Genova based the fictional story on her research of early onset Alzheimer’s rather than personal experience, I figured it was another glamorized story about Alzheimer’s with no basis on reality.
I read Still Alice in a few days. Genova makes Alice seem like a real person and you can feel Alice’s confusion and grief as the disease brings an end to her familiar life. The journey for Alice and her family are realistic. The conflicts between love and loss, selfishness and generosity, denial and acceptance have been experienced by millions of families when they realize their loved one cannot be cured.
Yes, the past few weeks have been filled with learning. Last night at support group, we showed “Momentum in Science Part I” from the HBO Alzheimer’s Project. Although I had watched the film before, I learned from it. It was interesting to see the relationship between brain disease and overall health.
Much has been learned about Alzheimer’s disease, but so much of it is still a mystery. As scientists seek effective treatment, we must provide the best care possible for those who have the disease now. With a best friends approach, we can provide person first care to improve quality of life whether a person lives at home or in a long-term care facility.
Hugs are indeed better than drugs and a lot less expensive.
Saturday, November 7, 2009
Turtles, Tunnels, and Denial
Turtles, our slow-natured friends, are the beneficiaries of a government sponsored windfall. Plans are afoot to provide a $3 million tunnel for Florida turtles to allow safe passage beneath the busy highway.
We wouldn’t want turtles to be hit by cars and become unwilling missiles. Does the so-called expert that says this happens think turtles are a top-secret weapon of mass destruction?
I will admit that living in rural Missouri, I’ve run over my share of turtles. I’ve seen others that met with a sad fate while simply trying to cross a country road or state highway.
I hate to hit a turtle. I’ve never seen one become a missile, but I’ve certainly heard the sickening “plop” as the shell crunches. It makes me feel bad to know I’ve unwittingly killed a living creature. Sometimes, I’m lucky and straddle the little slowpokes and spare their lives. Other times, we are both unlucky.
Jim created his own turtle/terrapin crossings. When he spotted one of the little fellows in the road, he stopped the car, got out, and carried the docile creature across the road. Hopefully, he saved as many lives as I took with my carelessness.
One day my son had hitched a ride home from school with one of his buddies. They saw a turtle in the road, and Eric told his friend that his dad helped them across the road so they wouldn’t get hit by a car. Eric’s friend was so inspired by the story, he pulled over and jumped out of his vehicle. As he reached for the turtle, instead of hiding in his shell, the turtle viciously snapped at the hand that was trying to save him. All turtles are not created equal in the humble department and the Good Samaritan has the scars to prove it.
Just think how long the crossing takes when the turtle stops and pulls in all appendages and sits there all snug inside his shell thinking he is safe. Instead of the shell providing a safe haven, it just means he is in harm’s way longer.
It’s easy for us to see that the turtle is in denial of the danger lurking around the next corner. We understand denial because it is an all too human emotion.
I heard a story of denial at lunch yesterday. A group of us attended a luncheon prior to an educational program about the genetic studies being done on Alzheimer’s disease. I sat next to a nurse who provides counseling for families dealing with Alzheimer’s. She mentioned her own denial when her mother first displayed symptoms of dementia. Logically, she knew her mother’s behavior couldn’t be explained away, but emotionally, she grasped at hope born from denial.
When you are in denial, you are inside the shell with the turtle. It makes the world feel safer, but it can put you and your loved one in harm’s way. While you are in denial, a family member with dementia may continue to drive when they shouldn’t. You may leave for a few hours and return to an empty house because your loved one has wandered. Your denial makes you a turtle in the middle of the road with a speeding car fast approaching.
Wouldn’t we like to keep our loved ones safe? I’m sure that if $3 million would keep our families safe, we would be willing to pay it if we had it. The key word is “if”. A certain faction of our society thinks no amount of money is too much to keep the world safe for small critters, but don’t worry about how the money is being taken away from our fellow humans. How much safer could the highway be made with $3 million? How many human lives could be saved with the money used to “protect” turtles?
The problem is turtles cannot be kept safe by a tunnel. Perhaps the turtles will be safe while they are in the tunnel, but the big dangerous world exists on both sides. No amount of taxpayer’s money will keep the turtles safe. No living creature lives in a vacuum and no tunnel could be big enough or long enough to protect life except for a fleeting moment.
We wouldn’t want turtles to be hit by cars and become unwilling missiles. Does the so-called expert that says this happens think turtles are a top-secret weapon of mass destruction?
I will admit that living in rural Missouri, I’ve run over my share of turtles. I’ve seen others that met with a sad fate while simply trying to cross a country road or state highway.
I hate to hit a turtle. I’ve never seen one become a missile, but I’ve certainly heard the sickening “plop” as the shell crunches. It makes me feel bad to know I’ve unwittingly killed a living creature. Sometimes, I’m lucky and straddle the little slowpokes and spare their lives. Other times, we are both unlucky.
Jim created his own turtle/terrapin crossings. When he spotted one of the little fellows in the road, he stopped the car, got out, and carried the docile creature across the road. Hopefully, he saved as many lives as I took with my carelessness.
One day my son had hitched a ride home from school with one of his buddies. They saw a turtle in the road, and Eric told his friend that his dad helped them across the road so they wouldn’t get hit by a car. Eric’s friend was so inspired by the story, he pulled over and jumped out of his vehicle. As he reached for the turtle, instead of hiding in his shell, the turtle viciously snapped at the hand that was trying to save him. All turtles are not created equal in the humble department and the Good Samaritan has the scars to prove it.
Just think how long the crossing takes when the turtle stops and pulls in all appendages and sits there all snug inside his shell thinking he is safe. Instead of the shell providing a safe haven, it just means he is in harm’s way longer.
It’s easy for us to see that the turtle is in denial of the danger lurking around the next corner. We understand denial because it is an all too human emotion.
I heard a story of denial at lunch yesterday. A group of us attended a luncheon prior to an educational program about the genetic studies being done on Alzheimer’s disease. I sat next to a nurse who provides counseling for families dealing with Alzheimer’s. She mentioned her own denial when her mother first displayed symptoms of dementia. Logically, she knew her mother’s behavior couldn’t be explained away, but emotionally, she grasped at hope born from denial.
When you are in denial, you are inside the shell with the turtle. It makes the world feel safer, but it can put you and your loved one in harm’s way. While you are in denial, a family member with dementia may continue to drive when they shouldn’t. You may leave for a few hours and return to an empty house because your loved one has wandered. Your denial makes you a turtle in the middle of the road with a speeding car fast approaching.
Wouldn’t we like to keep our loved ones safe? I’m sure that if $3 million would keep our families safe, we would be willing to pay it if we had it. The key word is “if”. A certain faction of our society thinks no amount of money is too much to keep the world safe for small critters, but don’t worry about how the money is being taken away from our fellow humans. How much safer could the highway be made with $3 million? How many human lives could be saved with the money used to “protect” turtles?
The problem is turtles cannot be kept safe by a tunnel. Perhaps the turtles will be safe while they are in the tunnel, but the big dangerous world exists on both sides. No amount of taxpayer’s money will keep the turtles safe. No living creature lives in a vacuum and no tunnel could be big enough or long enough to protect life except for a fleeting moment.
Saturday, October 31, 2009
Fall Back: An Extra Hour
Don’t you just wish they (whoever they are) would leave the time alone? Since I get up so early, I prefer standard time. Psychologically speaking the lighter the sky when I leave for work, the more awake I feel.
The best thing about the time change is the extra hour we have between Saturday night and Sunday morning. Have you ever thought about how much difference an hour can make? For some reason I can’t stop thinking about it. An hour can be the difference between life and death.
If I had not been in the exact place at the exact time I would not have met Jim on that summer Saturday in 1968. An hour would have changed my entire life and the lives of my children and grandchildren.
It’s easy to fritter away an hour here and an hour there. Most of the time an hour is insignificant but at other times it can come at a high price. When you miss a deadline by one measly hour, you can lose your job. If you don’t spend an hour studying for a test, you could fail a class. If a flight is delayed one hour, you can miss a connecting flight, which can cause you to miss an important meeting. An hour can be the difference between owning a home and seeing it reduced to smoldering ashes.
An hour can seem like an eternity if a loved one is missing, When Jim wandered off, minutes seemed like hours while we searched for him. The locale was different, but the heart-stopping fear was the same whether he was on our own road, lost in an airport, wandering around the mall, or lost in a crowd at Silver Dollar City. An hour can be the difference between a safe return and a tragic outcome.
Some surgeries only take an hour. I had an obstinate gallbladder removed in an hour. That hour meant living my life without painful attacks.
An hour can be for good or for evil. It can make a life changing difference or be of no consequence at all. When you think back over the last week, can you recall one single hour in detail? Can you think of an hour you would take back and erase if you could?
Those of us with fulltime jobs work 2080 hours per year. Our work day sometimes seems to be made up of slow moving hours. Of course we need to deduct vacation and holidays. When we are involved in a hobby or favorite activity, an hour speeds past on amazingly fleet feet.
Our lives are made up of hours. Those hours meld into weeks, months, years and become a lifetime. In the final hour, we learn the true meaninglessness of time.
We gain our hour tonight while most of us are in bed asleep. An extra hour can be the difference between being well rested or suffering sleep deprivation. It can be the difference between a dream and a nightmare.
But tonight, the time changes and we gain an hour. Have you thought about how to spend that precious extra hour? I don’t know what you plan to do with that bonus hour, but I plan to be sleeping. Soundly. Dreaming sweet dreams. Banking the hour for next spring when they (whoever they are) take it away and we lose an hour.
The best thing about the time change is the extra hour we have between Saturday night and Sunday morning. Have you ever thought about how much difference an hour can make? For some reason I can’t stop thinking about it. An hour can be the difference between life and death.
If I had not been in the exact place at the exact time I would not have met Jim on that summer Saturday in 1968. An hour would have changed my entire life and the lives of my children and grandchildren.
It’s easy to fritter away an hour here and an hour there. Most of the time an hour is insignificant but at other times it can come at a high price. When you miss a deadline by one measly hour, you can lose your job. If you don’t spend an hour studying for a test, you could fail a class. If a flight is delayed one hour, you can miss a connecting flight, which can cause you to miss an important meeting. An hour can be the difference between owning a home and seeing it reduced to smoldering ashes.
An hour can seem like an eternity if a loved one is missing, When Jim wandered off, minutes seemed like hours while we searched for him. The locale was different, but the heart-stopping fear was the same whether he was on our own road, lost in an airport, wandering around the mall, or lost in a crowd at Silver Dollar City. An hour can be the difference between a safe return and a tragic outcome.
Some surgeries only take an hour. I had an obstinate gallbladder removed in an hour. That hour meant living my life without painful attacks.
An hour can be for good or for evil. It can make a life changing difference or be of no consequence at all. When you think back over the last week, can you recall one single hour in detail? Can you think of an hour you would take back and erase if you could?
Those of us with fulltime jobs work 2080 hours per year. Our work day sometimes seems to be made up of slow moving hours. Of course we need to deduct vacation and holidays. When we are involved in a hobby or favorite activity, an hour speeds past on amazingly fleet feet.
Our lives are made up of hours. Those hours meld into weeks, months, years and become a lifetime. In the final hour, we learn the true meaninglessness of time.
We gain our hour tonight while most of us are in bed asleep. An extra hour can be the difference between being well rested or suffering sleep deprivation. It can be the difference between a dream and a nightmare.
But tonight, the time changes and we gain an hour. Have you thought about how to spend that precious extra hour? I don’t know what you plan to do with that bonus hour, but I plan to be sleeping. Soundly. Dreaming sweet dreams. Banking the hour for next spring when they (whoever they are) take it away and we lose an hour.
Sunday, October 25, 2009
In a Perfect World
I’ve been pushing myself a lot lately and can’t find enough hours in the day to get everything done. This morning I basked in a few rare hours of downtime and watched ice skating on TV. Ladies figure skating has long been my favorite sport, and I can’t help but be amazed at the discipline and talent that goes into each performance. Part of my admiration stems from an inability to even walk on ice. A few years ago my feet swooshed out from under me causing me to fall flat on my back and crack my head on a surface as hard as concrete.
Many years ago I talked Jim into taking me to St. Louis to see Stars on Ice. At the time, Jim was in the early stages and we were hopeful his problems were caused by something treatable like depression or a vitamin deficiency. The trip went smoothly except when Jim drove the wrong way on a one-way street. That could happen to anyone in the confusing downtown area of St. Louis.
We checked into a hotel overlooking the river area and within sight of the Arch. Our room was nice, but the bed had only two pillows, exactly Jim’s requirement. He called the front desk and said, “My wife doesn’t have a pillow.” It was obvious he had claimed both pillows and decided I didn’t have any.
The next year we went to Stars on Ice in Kansas City. As we approached Kemper Arena we were directed into a small parking lot tucked between tall buildings. We couldn’t see the arena because of the buildings crowding all sides of the lot but found it by following the crowd headed to the show.
The very air feels different at a live skating show. On TV it’s easy to be critical when the performance isn’t perfect. At a live performance, the amazing talent of professional skaters shines in a different light. A death spiral seems much scarier in person. The man spins at great speed, swinging his partner around and around, up and down, until you shut your eyes because it looks like he will surely slam her head into the ice. You see the “air” beneath the jumps and wonder how a human can develop such skill. Yes, to be at a live ice skating event, you realize that a great skater may not always skate perfectly.
We were still hyped from the show when we exited the building. We realized we had no idea where our car was parked. Jim had always had a great sense of direction and I depended on him. The January night was frigid and the crowd thinned as everyone hurried to their cars. My stomach hurt when I realized it was going to be up to me to figure out where we were parked.
“We need to go to the other side of the arena,” I told Jim. We walked around Kemper and saw a sidewalk headed toward some buildings. “It has to be down this way, don’t you think?”
“I have no idea,” Jim said. Boy, were we ever in trouble.
“I know it’s this way,” I said with more confidence than I felt. We walked toward the dimly lighted buildings. After a few blocks on the deserted sidewalk we veered down a dark alley. Our car was the only vehicle left in the lot.
It’s been years since I’ve watched a live skating show and found this morning’s televised skating performances disappointing. The skaters fell, popped jumps, or made two-footed landings.
Then, I thought about the pressure on skaters now. Skaters must execute perfect triple or quadruple jumps to be competitive. A champion skater cannot remain in a comfort zone, but must take risks. As a result, skaters make multiple mistakes or miscalculations. When I remember Scott Hamilton executing a perfect back flip, it is unimportant if he fell from time to time or popped a jump.
In a perfect world we wouldn’t falter or fall. But it isn’t a perfect world and we are only human. If we never stretch ourselves, we may not fail, but we won’t know the joy of living our dreams. We can stay in our comfort zone and settle for mediocrity, or take a risk and push ourselves to the limit.
Many years ago I talked Jim into taking me to St. Louis to see Stars on Ice. At the time, Jim was in the early stages and we were hopeful his problems were caused by something treatable like depression or a vitamin deficiency. The trip went smoothly except when Jim drove the wrong way on a one-way street. That could happen to anyone in the confusing downtown area of St. Louis.
We checked into a hotel overlooking the river area and within sight of the Arch. Our room was nice, but the bed had only two pillows, exactly Jim’s requirement. He called the front desk and said, “My wife doesn’t have a pillow.” It was obvious he had claimed both pillows and decided I didn’t have any.
The next year we went to Stars on Ice in Kansas City. As we approached Kemper Arena we were directed into a small parking lot tucked between tall buildings. We couldn’t see the arena because of the buildings crowding all sides of the lot but found it by following the crowd headed to the show.
The very air feels different at a live skating show. On TV it’s easy to be critical when the performance isn’t perfect. At a live performance, the amazing talent of professional skaters shines in a different light. A death spiral seems much scarier in person. The man spins at great speed, swinging his partner around and around, up and down, until you shut your eyes because it looks like he will surely slam her head into the ice. You see the “air” beneath the jumps and wonder how a human can develop such skill. Yes, to be at a live ice skating event, you realize that a great skater may not always skate perfectly.
We were still hyped from the show when we exited the building. We realized we had no idea where our car was parked. Jim had always had a great sense of direction and I depended on him. The January night was frigid and the crowd thinned as everyone hurried to their cars. My stomach hurt when I realized it was going to be up to me to figure out where we were parked.
“We need to go to the other side of the arena,” I told Jim. We walked around Kemper and saw a sidewalk headed toward some buildings. “It has to be down this way, don’t you think?”
“I have no idea,” Jim said. Boy, were we ever in trouble.
“I know it’s this way,” I said with more confidence than I felt. We walked toward the dimly lighted buildings. After a few blocks on the deserted sidewalk we veered down a dark alley. Our car was the only vehicle left in the lot.
It’s been years since I’ve watched a live skating show and found this morning’s televised skating performances disappointing. The skaters fell, popped jumps, or made two-footed landings.
Then, I thought about the pressure on skaters now. Skaters must execute perfect triple or quadruple jumps to be competitive. A champion skater cannot remain in a comfort zone, but must take risks. As a result, skaters make multiple mistakes or miscalculations. When I remember Scott Hamilton executing a perfect back flip, it is unimportant if he fell from time to time or popped a jump.
In a perfect world we wouldn’t falter or fall. But it isn’t a perfect world and we are only human. If we never stretch ourselves, we may not fail, but we won’t know the joy of living our dreams. We can stay in our comfort zone and settle for mediocrity, or take a risk and push ourselves to the limit.
Saturday, October 17, 2009
In Touch with the Season: Scary Reading
In celebration of the impending Halloween season, I decided to read something really scary, so I pulled out my prescription fact sheets. My insurance provider refers to the full page, single-spaced, ten-point font sheet as “Participant Counseling.”
The older I get, the more drugs I have added to my arsenal. My health insurance company strongly encourages annual health screenings. Because of this annual testing, it has been easy for my doctor to following my escalating numbers. I’ll admit that he has been cautious about prescribing the maintenance drugs for my accumulating conditions. The preferred line of action was to lose weight, but it seems like I lose the same five pounds over and over.
One of my prescriptions has side effects of dizziness, headache, nausea, gas, stomach upset/pain, diarrhea and constipation (not at the same time, I hope).Those are the minor side effects. My participant counseling sheet for my cholesterol drug has a large section under “caution” which tells me I might have muscle pain or muscle damage which could lead to kidney damage and “a very serious condition” rhabdocmyolysis. I don’t know what that is, but I betcha I don’t want it.
Another interesting part is when the sheet counsels me to not take the medication if I am allergic to any of the ingredients in the product. I am not a chemist and most of the “ingredients” don’t look like anything I’ve ever knowingly taken.
Lately I’ve noticed that television commercials for prescription drugs show active people playing tennis, bike riding, or participating in other activities that make me tired just to watch. The voice over extols the benefits of a prescription for about the first quarter of the commercial. For the remainder of the commercial, a predictable pattern has emerged. A rapid fire voice describes the side-effects and in a slower, soothing tone finishes up with “ask your physician if (fill in the blank) is right for you.” Did I hear something about “sudden death” in that quick disclaimer? It makes me wonder how important a prescription is if it’s supposed to make you happy, healthy and active, but “oh, by the way” it might cause stroke, cardiac arrest, or liver failure.
One night I was taking my medication and my six-year-old granddaughter asked “What do those pills do, Grandma Linda?”
I looked at the handful of pills and started pointing to each one. “This one is for my cholesterol, this one for high blood pressure, this is a vitamin, this is for my knee pain,” pointing to a half of a Tylenol PM, I said, “and this one is to help me sleep.”
“Oh, and look,” she said, “it is two colors—blue to help you get to sleep fast and white to help you stay asleep.”
Her comment shows which part of the commercial sticks with us the best. After all, I’m sure no drug company would advertise if we weren’t more impressed with the benefits of medication than we are with the downside.
With his dementia, Jim took a lot of medication. Through the trial-and-error to find the best drug regimen for him, I diligently read the side effects of everything he took. He was no longer capable of reading them, and I felt responsible for looking out for his wellbeing. Once I mentioned to the doctor that a new drug Jim was taking had a side effect of confusion. The doctor told me that all medicines have potential side effects. That doesn’t mean that everyone has them. He pointed out that no one would take prescription drugs if we worried too much about side effects.
It’s not just prescriptions that have unexpected side effects and warnings. All over-the-counter medication has them too. That night-time cold formula “so you can rest” medicine cautions you to quit taking it if you suffer from “sleeplessness.” On non-drowsy cold capsules, one of the first side effects mentioned is drowsiness. That certainly won’t help your job performance if you take it to help control your runny nose during the day.
One good thing about it, Halloween will soon be over and we will be moving into the Thanksgiving and Christmas season. There’s nothing scary about those holidays and my reading needs to reflect that. I’ll put away the prescription fact sheets and dig out some inspirational holiday reading instead. I’ll stick with the delightful and forget the frightful.
The older I get, the more drugs I have added to my arsenal. My health insurance company strongly encourages annual health screenings. Because of this annual testing, it has been easy for my doctor to following my escalating numbers. I’ll admit that he has been cautious about prescribing the maintenance drugs for my accumulating conditions. The preferred line of action was to lose weight, but it seems like I lose the same five pounds over and over.
One of my prescriptions has side effects of dizziness, headache, nausea, gas, stomach upset/pain, diarrhea and constipation (not at the same time, I hope).Those are the minor side effects. My participant counseling sheet for my cholesterol drug has a large section under “caution” which tells me I might have muscle pain or muscle damage which could lead to kidney damage and “a very serious condition” rhabdocmyolysis. I don’t know what that is, but I betcha I don’t want it.
Another interesting part is when the sheet counsels me to not take the medication if I am allergic to any of the ingredients in the product. I am not a chemist and most of the “ingredients” don’t look like anything I’ve ever knowingly taken.
Lately I’ve noticed that television commercials for prescription drugs show active people playing tennis, bike riding, or participating in other activities that make me tired just to watch. The voice over extols the benefits of a prescription for about the first quarter of the commercial. For the remainder of the commercial, a predictable pattern has emerged. A rapid fire voice describes the side-effects and in a slower, soothing tone finishes up with “ask your physician if (fill in the blank) is right for you.” Did I hear something about “sudden death” in that quick disclaimer? It makes me wonder how important a prescription is if it’s supposed to make you happy, healthy and active, but “oh, by the way” it might cause stroke, cardiac arrest, or liver failure.
One night I was taking my medication and my six-year-old granddaughter asked “What do those pills do, Grandma Linda?”
I looked at the handful of pills and started pointing to each one. “This one is for my cholesterol, this one for high blood pressure, this is a vitamin, this is for my knee pain,” pointing to a half of a Tylenol PM, I said, “and this one is to help me sleep.”
“Oh, and look,” she said, “it is two colors—blue to help you get to sleep fast and white to help you stay asleep.”
Her comment shows which part of the commercial sticks with us the best. After all, I’m sure no drug company would advertise if we weren’t more impressed with the benefits of medication than we are with the downside.
With his dementia, Jim took a lot of medication. Through the trial-and-error to find the best drug regimen for him, I diligently read the side effects of everything he took. He was no longer capable of reading them, and I felt responsible for looking out for his wellbeing. Once I mentioned to the doctor that a new drug Jim was taking had a side effect of confusion. The doctor told me that all medicines have potential side effects. That doesn’t mean that everyone has them. He pointed out that no one would take prescription drugs if we worried too much about side effects.
It’s not just prescriptions that have unexpected side effects and warnings. All over-the-counter medication has them too. That night-time cold formula “so you can rest” medicine cautions you to quit taking it if you suffer from “sleeplessness.” On non-drowsy cold capsules, one of the first side effects mentioned is drowsiness. That certainly won’t help your job performance if you take it to help control your runny nose during the day.
One good thing about it, Halloween will soon be over and we will be moving into the Thanksgiving and Christmas season. There’s nothing scary about those holidays and my reading needs to reflect that. I’ll put away the prescription fact sheets and dig out some inspirational holiday reading instead. I’ll stick with the delightful and forget the frightful.
Saturday, October 10, 2009
Auto Tool Kit: AAA and a Cell Phone
One of the first things I learned as a caregiver was that I had to take on new responsibilities. Jim was always the mechanic in the family, and until he developed dementia, I had never changed the oil or listened for strange noises cars make from time to time.
We usually drove old clunkers and never left home without Jim’s tool kit. One time our van broke down on a country road, and Jim fixed it with a piece of wire he snipped from a sagging fence. He had us up and running in no time. On another trip in the dead of winter our heater began to blow cold air and Jim fixed it with a piece of cardboard. Whatever happened, he analyzed the problem and had an immediate solution.
Jim began to lose his mechanical skills, and we purchased AAA roadside assistance. I missed Jim’s expert attention to our vehicles, but with AAA and a cell phone, I figured we had the tools to get by. Besides, the card was good for discounts on hotel rooms, air fares, and even at Hard Rock Café.
Eric, our oldest son, worked at a dealership and reminded me when I needed an oil change or tires rotated. When I had mechanical problems, my first call was to Eric, not AAA.
One time Eric was on vacation and my youngest son, Rob, met me at the nursing home to take Jim out to lunch. We had already loaded Jim into the van before we noticed a tire was flat.
Rob crawled under the van and struggled to release the itty-bitty spare from its holder. After changing the tire, he climbed back into the van covered with sweat and dirt.
I said, “I don’t know what I would have done if you hadn’t been with me.” Then after I thought for a minute, I added, “I guess I would have called Triple-A.”
“I just changed a tire in hundred degree weather and you have Triple-A?” Rob asked.
“Yeah, but I’ve never used it except for discounts,” I said. Since 1997 the card had not once been used it for its primary purpose.
My Oldsmobile Alero is getting a little age on it, but overall, it has been a reliable car. That’s why I was caught off guard Thursday night. It had been raining all day and in the back of my mind I was worried that my roads might be flooded. Still, I went to dinner at Country Kitchen with other members of our Alzheimer’s Support Group. After dinner, we popped open our umbrellas and headed for our cars. I was ready to go home where it was warm and dry.
I put my key in the ignition and turned it. Instead of the purr of my motor, I heard dead silence.
“My car won’t start,” I told David, a member of our group who was parked next to me. He looked under the hood and said the battery connections were good.
I looked at my watch and knew it was too late to call Eric. He gets up so early for work that he would be in bed by now.
“Do you have any kind of road hazard?” David asked. Funny, I hadn’t thought about that.
David shined a flashlight on my AAA card so I could dial the number. Within ten minutes, my car was started and back on the road.
Of course, the car wouldn’t start the next morning. I phoned a friend who came over and jump started the car for me.
Now that I have a new battery my car starts when I turn the key. That’s the way I like it. But if all else fails, I have my tool kit—a cell phone and AAA. Better yet, I have friends’ numbers programmed into my cell phone.
I can’t break the habit of calling family or friends for advice about all things mechanical, or to give me an occasional jump start. It’s still nice to know I have three Aces in the hole to use for discounts or in case my friends become wise to me and don’t answer their phones.
We usually drove old clunkers and never left home without Jim’s tool kit. One time our van broke down on a country road, and Jim fixed it with a piece of wire he snipped from a sagging fence. He had us up and running in no time. On another trip in the dead of winter our heater began to blow cold air and Jim fixed it with a piece of cardboard. Whatever happened, he analyzed the problem and had an immediate solution.
Jim began to lose his mechanical skills, and we purchased AAA roadside assistance. I missed Jim’s expert attention to our vehicles, but with AAA and a cell phone, I figured we had the tools to get by. Besides, the card was good for discounts on hotel rooms, air fares, and even at Hard Rock Café.
Eric, our oldest son, worked at a dealership and reminded me when I needed an oil change or tires rotated. When I had mechanical problems, my first call was to Eric, not AAA.
One time Eric was on vacation and my youngest son, Rob, met me at the nursing home to take Jim out to lunch. We had already loaded Jim into the van before we noticed a tire was flat.
Rob crawled under the van and struggled to release the itty-bitty spare from its holder. After changing the tire, he climbed back into the van covered with sweat and dirt.
I said, “I don’t know what I would have done if you hadn’t been with me.” Then after I thought for a minute, I added, “I guess I would have called Triple-A.”
“I just changed a tire in hundred degree weather and you have Triple-A?” Rob asked.
“Yeah, but I’ve never used it except for discounts,” I said. Since 1997 the card had not once been used it for its primary purpose.
My Oldsmobile Alero is getting a little age on it, but overall, it has been a reliable car. That’s why I was caught off guard Thursday night. It had been raining all day and in the back of my mind I was worried that my roads might be flooded. Still, I went to dinner at Country Kitchen with other members of our Alzheimer’s Support Group. After dinner, we popped open our umbrellas and headed for our cars. I was ready to go home where it was warm and dry.
I put my key in the ignition and turned it. Instead of the purr of my motor, I heard dead silence.
“My car won’t start,” I told David, a member of our group who was parked next to me. He looked under the hood and said the battery connections were good.
I looked at my watch and knew it was too late to call Eric. He gets up so early for work that he would be in bed by now.
“Do you have any kind of road hazard?” David asked. Funny, I hadn’t thought about that.
David shined a flashlight on my AAA card so I could dial the number. Within ten minutes, my car was started and back on the road.
Of course, the car wouldn’t start the next morning. I phoned a friend who came over and jump started the car for me.
Now that I have a new battery my car starts when I turn the key. That’s the way I like it. But if all else fails, I have my tool kit—a cell phone and AAA. Better yet, I have friends’ numbers programmed into my cell phone.
I can’t break the habit of calling family or friends for advice about all things mechanical, or to give me an occasional jump start. It’s still nice to know I have three Aces in the hole to use for discounts or in case my friends become wise to me and don’t answer their phones.
Friday, October 9, 2009
Alzheimer's: The Love and the Heartbreak
My friend, Karen Henley, sent me a link to an in-depth interview with her family and others. Karen's huband, Mike, has early onset Alzheimer's. His family cares for him at home. To read the articles and watch the awesome videos go to http://longisland.newsday.com/projects/alzheimers/
Monday, October 5, 2009
Autumn: Trick or Treat
How I feel about autumn reflects how I feel about life. When I think of autumn, I think of colorful leaves, pumpkin pie, apple turnovers, Halloween and Thanksgiving. At one time in my life I dreaded autumn’s dreary cold days and the miserable weather ahead.Autumn reminds me of trick-or-treat. Being an optimist, I remember the treats more than the tricks. I lived in the country where neighbors were few and far between so we went to town to trick-or treat. Each Halloween night it wasn't long before word on the street led us to the houses handing out homemade cookies or popcorn balls. We also learned which house to avoid. That would be where the cranky old man yelled at kids to “Get outta here before I start shootin’!”
One Halloween, Jim and I had the opportunity to play a trick on our boys. They walked up the road to my brother-in-law’s house to retrieve our dog who had strayed off looking for romance. The full moon provided their only light. Oh, yes, it was the perfect Halloween night. The wind pushed mysterious clouds across the sky and wispy shadows hinted of witches, bats, or werewolves. Jim and I hid in the bushes near the dirt road. Our two sons were talking to each other or they would have heard our giggles. When they got close, we jumped out screaming and yelling. They were only startled for a moment, and it didn’t seem quite as funny to them as it did to us.
Autumn is more than dressing up in costumes and eating candy until we are sick. Our unique inner clocks determine whether the autumn of our lives becomes trick or treat. To some people, retirement means they have lost the focus of their days and feelings of self worth. I look forward to it as a time to spread my wings and fly toward the fulfillment of youthful dreams put on hold for the greater part of my adulthood. I see the autumn of my life as an opportunity to spend time with my grandchildren, write the novel bouncing around in my head, and relax with a good book from time to time.
The autumn of life can be the perfect season to feel young again, a time to taste sweet wine and enjoy heady smells of spice, the scents of fall. Autumn is the time to join in fall festivities and rejoice at the end of harvest—years of hard work and sacrifice.
Chronic diseases like Alzheimer’s or cancer have an autumn in their duration. During the autumn of the disease, it is time to decide whether to spend your days dreading the cold winter ahead, or savor the kaleidoscope of burnt orange, warm golden hues, and cheerful yellows. Do you want to taste the crisp juicy apples of fresh harvest, or put them aside and rue the day they became bruised and shriven?
As we sit at the table of autumn fest, our mindset determines how much we savor the bounty on our plates. It isn’t so much life's physical tricks—aching backs, arthritic joints, a slow numbing of our minds—as it is attitude and ability to enjoy today for what it brings. When we feel the sun on our faces, it helps offset the cold wind blowing at our backs.
We cannot change the seasons, we can only change how we feel about them. Life should never be in a holding pattern waiting for a season to change. Living life in dread of the next season and what it may bring, can steal our joy. I believe that joy delayed is joy lost. The important thing is to embrace today and celebrate the festivals of the current season. It is our choice whether life is trick or treat.
Copyright © 2009
Monday, September 28, 2009
Put My House in Order
For the past week I’ve been trying to put my house in order for our annual family reunion. This year I’m the hostess for my seven siblings and their families. My busy life has turned home into the place where I sleep, and housekeeping has fallen by the wayside. While putting my house in order, I’ve sorted through years of paperwork and dug into hidey-holes. I’ve stayed up past my bedtime every night for a week while I sorted, dusted, tossed, or packed items in plastic storage tubs.
If I had been on a scavenger hunt, I would surely be a winner. I found the USB for the MP3 Player I recently replaced with an IPOD. It was still an ah-hah moment to discovered I had tucked it into an old camera case. In my Suzy Homemaker mode, dusting wasn’t good enough so I removed a cloth angel for a thorough cleaning and uncovered Jim’s long-lost dog tags on the hook behind it. Memories were tucked away in an old Christmas tin. I found tattered valentines from Jim and my eyes blurred when I read his “Love you always” signature.
This week has turned into a trail of discovery as I ferreted out long-forgotten secrets. I am not sure at what point in life I turned into a packrat. It wasn’t so bad when Jim was here to coerce me into tossing souvenirs and freebies from conventions and state fairs. On my own, I just tuck them away, and add to the clutter.
While I was frantically cleaning, my co-worker and friend, Brenda spent precious moments with her husband before he left his worldly home and passed to the next. Ray had battled cancer and knowing his time was limited, he worked at putting his house in order. He made his own arrangements and wrote his obituary. His family knew his wishes and fulfilled them precisely. Following Ray’s instructions, his ashes were placed into his Honeymooner’s cookie jar. You can almost hear Ray’s hearty laugh anticipating the look on unsuspecting faces when they see the “urn” he has chosen.
When friends or loved ones die, it makes us pause and contemplate our own mortality. I often say my kids are going to be really mad at me when they have to sort through my worldly possessions. Barring a horrific accident, I should have time to go through all those tubs filled with things I can’t part with yet. I certainly plan to get my house in order so my family doesn’t have to rummage through my belongings to separate treasures from junk.
Death also makes me question the order of my spiritual house which has become cluttered and needs a good dusting. Hopefully, when my time comes, my house will be in order from top to bottom and I won’t have to try to make it right at the last minute.
The best thing about a clean house is being able to relax without the mental nagging to get busy and finish. When that day comes, I can truthfully say, “I can rest now—my work here is done.” For now, I’m not even close.
copyright (c) 2009
Sunday, September 20, 2009
The Friendship Connection
When Whitney and her friend Mariah donned their balloon hat, it reminded me of how we are connected to our friends. Don the Balloon man’s hat-for-two gave the friends a different kind of connection at our Sedalia Memory Walk this year.Friendship connections have evolved since my friend Sharon and I wrote notes in study hall. To keep our words private, we wrote them backwards and held them up to a mirror to read them. Now people email, text, Twitter, or use Facebook. Many of us have cell phones with nationwide plans and think nothing of calling someone across country to chat for a few minutes.
Not too long ago, I was riding with my daughter-in-law and my grandkids were texting each other—and they were both in the backseat. Of course, one advantage of text messaging is that siblings can have a disagreement without getting the parents involved.
I finally caved to the pressure and opened a Facebook account. It is a good way to stay updated on what is going on in my friends’ lives. I’m sure all friends on Facebook are not necessarily friends in the true sense of the word. Many of these “friends” are only casual acquaintances. A person is not a friend unless we care about what happens to them, we keep their confidences, and we overlook their faults. We support our friends and celebrate their successes without a twinge of envy.
When we meet people, we feel an immediate connection with some but not others. Our friends aren’t necessarily mirror images of ourselves. Sometimes we are drawn to others because they have a trait or skill we lack but admire.
I have been blessed with many friends. My involvement in my business women’s group, writers’ guild, work, and the Alzheimer’s Association brings me into contact with a lot of talented people. A combined effort to support a cause forges a lot of other personal differences to create a bond.
The Memory Walk took months of planning, organization, leg work and fortitude. My sister-in-law, Ginger Dollinger, and team coordinator, Sheila Ream, logged countless hours of preparation. All this effort birthed a fun Memory Walk with music, balloons, face painting, raffles, prizes, and a cake walk.
Friends pitch in and help you when you need it. That’s what Connie Pope did when she saw we needed help at Memory Walk. Cindy stopped to visit while I signed books, casually bagged them and handed them out with a smile. Brenda called to let me know she couldn’t be at the walk because she felt she needed to stay with her gravely ill husband. Sheila gave me a comforting hug as we released our balloons at the end of the walk. These are just a few of the contacts I made with friends at one event.
My favorite part of Memory Walk is spending a few hours with family and friends—hugs, smiles, and a lifting of spirits as we connect with each other. Weeks, months, and years disappear when I greet a friend after a separation.
We don’t need a balloon hat to physically connect us to our friends. A real friendship connection is not diminished by miles and time. It has no boundaries or limits and lives deep within our hearts.
Monday, September 14, 2009
White Rabbit Syndrome: Always Late
My daddy used to have a saying, “A day late and a dollar short.” It was not a good thing to be the person he referred to when he pulled his brows down in a frown and uttered the words. He had many pet peeves and being late and not paying lawful debts were near the top of the list.I’m not sure what has happened to me over the years because I struggle with being on time. I wasn’t raised that way. I’ve self-diagnosed a bad case of White Rabbit Syndrome. People with this rare disorder rush all the time only to catch every red light in town, have to wait on the longest freight train in history, spend hours searching for car keys, or have to turn around and return home to turn off the coffee pot. Clocks and watches are not their friends.
The world has just now begun to recognize this disease, and a conspiracy is already afoot to release the White Rabbit Syndrome suffers’ names to email spammers. My evidence is the large number of “cheap luxury watch” offers I receive in my inbox each day.
Does anyone in his right mind buy a watch from an unsolicited email? They seem to be wising up to my lack of interest in their watches because now I can’t open an “Important Information” or “Important Request” without finding another watch offer.
I was explaining this to my son, Eric, a few nights ago as we chowed down on Long John Silver’s fish and chips.
“I get a lot of email from my website and blog,” I told him. “I hate to just delete mail from names I don’t recognize just to keep from looking at more watch offers.”
“Speaking of watches,” my daughter-in-law the nurse said, “did you ever get an offer for one with military time, and numbers with a second hand? At work I have to use military time, but I need a second hand too.”
“I bet I’ll be offered that kind of watch,” I said. “Oh, guess what I found? My old Timex! I think it was still ticking.”
I bit into a hushpuppy. “Do you remember how you kids used to want to go to Long John Silvers so you could get a pirate hat?”
“Yeah, I always liked to eat there when I was a kid,” Eric said.
I don’t remember feeling so rushed back then. I also remember getting to work before anyone else. I always seemed to get a lot of work done in the quiet hours before all those tardy last-minute-peel-into-the-parking-lot workers arrived. I scoffed at how they jumped out of their cars and raced for the time clock.
I was younger then, too. Another one of my dad’s sayings when one of us kids didn’t jump fast enough, “Grandma is slow, but she’s old.”
Funny how those words keep popping into my head lately. I’m a grandma, so maybe I’m entitled to slow down a bit. I don’t admit to being old though. If I were old, I’d just rest my case on my daddy’s words and White Rabbit Syndrome.
Instead of another watch offer, someone needs to offer me a time machine. If I could make time speed up, slow down, or move backwards at will, I might be on to something. Then, I could just go back and do “overs” as Jim always called it. Unfortunately, we don’t get the opportunity to do overs—time wasted is time gone. Just like my Timex, time keeps on ticking until it’s going, going, gone.
Saturday, September 5, 2009
If I make it through September!
My life has turned into a NASCAR speedway and sometimes I feel like I’m driving a tricycle. It leaves me in danger of being pancaked by the big boys.
I’m not sure how it got to be September already. What happened to summer? Please don’t tell me I Rip Van Winkled right past it. Considering my sleep deprivation, that doesn’t seem logical. Somehow I survived the summer without once shinnying into a swimsuit, visiting a beach, suffering heat stroke at Silver Dollar City (so much for season tickets!) or for that matter, turning lobster-red from a sunburn. What a waste of summer months, and uh-huh-oh summer nights.
I thought Halloween was supposed to be scary, but it doesn’t come close to the feeling I had in the pit of my stomach when I flipped the calendar page and saw all the scribble marks. Here I am on Labor Day weekend, laboring, trying to catch up to all the events that are now staring me in the face.
Today started with a radio program “Open Mike” where Chris and I talked about Alzheimer’s and our September 19 Memory Walk. Then, I stopped off at the office to use high speed Internet and my duo screens to send emails and media releases for two different organizations. After four hours, I made a small dent in my calendar to-do list.
I only have fourteen “events” written on my calendar, so shouldn’t that mean I have more free time than scheduled time? That might be true if they were events where I just had to show up, but it doesn’t work that way for those of us on the planning committee or in charge. Oh, and let’s not forget the 101 items that didn’t make the official calendar. That would be those things I intend to do if I have time.
One of the best things about hectic life is I never have time to be bored, or even think about being bored. My goal on Wellsphere is to take a thirty-minute stress break five times a week. That doesn’t seem like too lofty a goal until I actually went through the stress of trying to find a spare thirty minutes.
In the meantime, I’ll just keep peddling until I make it through September, and then, I can relax awhile. After all, I have two free weekends in October. Yes, if I make it through September, I’ll be fine.
I’m not sure how it got to be September already. What happened to summer? Please don’t tell me I Rip Van Winkled right past it. Considering my sleep deprivation, that doesn’t seem logical. Somehow I survived the summer without once shinnying into a swimsuit, visiting a beach, suffering heat stroke at Silver Dollar City (so much for season tickets!) or for that matter, turning lobster-red from a sunburn. What a waste of summer months, and uh-huh-oh summer nights.
I thought Halloween was supposed to be scary, but it doesn’t come close to the feeling I had in the pit of my stomach when I flipped the calendar page and saw all the scribble marks. Here I am on Labor Day weekend, laboring, trying to catch up to all the events that are now staring me in the face.
Today started with a radio program “Open Mike” where Chris and I talked about Alzheimer’s and our September 19 Memory Walk. Then, I stopped off at the office to use high speed Internet and my duo screens to send emails and media releases for two different organizations. After four hours, I made a small dent in my calendar to-do list.
I only have fourteen “events” written on my calendar, so shouldn’t that mean I have more free time than scheduled time? That might be true if they were events where I just had to show up, but it doesn’t work that way for those of us on the planning committee or in charge. Oh, and let’s not forget the 101 items that didn’t make the official calendar. That would be those things I intend to do if I have time.
One of the best things about hectic life is I never have time to be bored, or even think about being bored. My goal on Wellsphere is to take a thirty-minute stress break five times a week. That doesn’t seem like too lofty a goal until I actually went through the stress of trying to find a spare thirty minutes.
In the meantime, I’ll just keep peddling until I make it through September, and then, I can relax awhile. After all, I have two free weekends in October. Yes, if I make it through September, I’ll be fine.
Tuesday, September 1, 2009
Ted and Norma: Promises to Keep
On October 3, Ted Distler and his lovely wife, Norma, will celebrate 50 years of marriage. I admire Ted for his devotion to Norma and how he has held her hand and guided her through the quagmire of early-onset Alzheimer’s.Besides being a devoted husband, Ted honors Norma by being a tireless volunteer for the Alzheimer’s Association Mid-Missouri Chapter. We met in 1999 when Ted was at the helm of the Jefferson City Memory Walk and I coordinated the Sedalia Memory Walk. Ted was a formidable fundraiser, and I made a valiant effort to stay in the competition. Although we squared off like championship boxers, we were cheerleaders for each other as we joined forces for a common cause. Our ultimate goal was to help support families facing Alzheimer’s and a cure for their loved ones, and our loved ones. We knew our local Chapter was providing that support for Mid-Missouri families.
Ted and I met for coffee one day and worked on a story for Alzheimer’s Anthology of Unconditional Love. Norma and Ted’s story of unconditional love, courage, and devotion is posted on the Mid-Missouri Chapter’s website at http://www.alz.org/mid-missouri/in_my_community_17573.asp.
Congratulations, Ted and Norma! I wish you blessings and love with each step of your journey.
------
"Promises to Keep" published in Alzheimer's Anthology of Unconditional Love
Saturday, August 29, 2009
Vacation—Recharging Batteries
Colorado mountain pines whisper my name and beckon me to the quiet hush of a cool mountain morning. I always referred to vacation as a time to recharge my batteries, but it doesn’t have quite the same meaning it used to have.I fell in love with the mountains on our first camping trip in 1983. To humor Jim, I agreed to camp at the Moraine Park campgrounds in Rocky Mountain National Park. Everyone expected us to be home after a few days because, to put it mildly, I never considered camping to be a relaxing experience. Sleeping on a hard surface in extreme Missouri heat, while slapping mosquitoes, was not my idea of fun.
Jim was an accomplished camper from a lifetime of outdoors adventures. He loved the Colorado mountains and each year we set aside a week to get away from everyday stress and recharge our spiritual batteries.
Jim spoiled me on our vacations. On cool Colorado mornings, he would rise before the sun peeked over the mountains, build a campfire, and brew coffee. Jim would open the van door, and hand me a cup of coffee while I huddled under the heavy quilts in bed.
“Breakfast is almost ready, Princess,” Jim would say. The scent of bacon frying on the Coleman camp stove promised a tasty, hearty meal. “Get up sleepy, head, we are in the mountains!” Joy would shine on Jim’s face as we planned the day—an aerial tramway ride, hiking, and an early evening drive through the park to watch deer and elk.
In retrospect, I can measure the progression of Jim’s dementia by our trips to Colorado. By 1997, camping was beyond Jim’s capabilities and although we still drove to our beloved mountains, we stayed in a hotel. Then, the trips ended as Jim became more confused and eventually entered long-term care.
After Jim’s death in 2005, I made a bittersweet return to the mountains. Long’s Peak looked the same, but I noticed other changes. We used to walk around the Beaver Pond to watch ducks and fish in the clear water below. Now, a small trickle moves past a truncated ramp near the reclaimed meadow. A drive up the Big Thompson doesn’t seem as great without browsing the Glen Comfort store filled with exquisite Native American pottery and storytellers.
Now, instead of camping at Moraine Park, I find a hotel with high speed Internet. The batteries I recharge are in my Dell netbook, camera, and cell phone. Instead of getting away from it all, I take it all with me.
Maybe it’s my age, but I find some of the changes to be good. I can idealize past vacations through selective memory, but a lot is to be said for having a private bathroom, satellite TV, air conditioning or heat as needed and a comfortable bed. The cell phone and Internet keep me from getting behind on everything happening back home. Now, I can take hundreds of pictures on my camera and never have to buy a roll of film.
Yes, many things have changed, but vacation shouldn’t be an attempt to recapture the past. It should be a time for new experiences, to breathe the fresh air of today and appreciate the beauty of now. When I look at the majestic view from Trail Ridge Road or gaze at the reflection of the mountains in Bear Lake, I feel a small charge of electric current flow through my spiritual self. Can that be my batteries recharging?
Saturday, August 22, 2009
Not so Friendly Competition
This year at the fair, I controlled the energy bicycle. Dawn, one of my co-workers, gave me a quick demonstration when I took over for her.
“Flip on the fan first,” she said. “Anyone can get that going.” The idea was to peddle the bicycle to generate enough energy to light up a series of items. “I do the florescent light next, because it’s easy too.”
I gave it a try. I got the fan going and the florescent light flickered feebly. Then, the bike felt like it hit a brick wall—and I was done.
I felt like a Carney beckoning people to step up and show their skill. Most people could start the fan, a lamp, a teensy TV, and the florescent bulb, but when I switched on the 25 watt bulb, the game was over. Another loser! Five bulbs remained unlit.
My boss dropped by the Co-op Building and hopped on the bike to show what he could do. He pumped away without showing any exertion—ah, to have the energy of the young again. I flipped switches working my way from bottom to top. He began to breathe harder and with only two switches left he couldn’t budge the pedals.
About an hour later a teenager wanted to ride the bike. Her mom signed the permission slip, and she hopped on. She peddled, and I flipped switches. Her face turned red, but she kept on pumping. She stopped at the same level as my boss.
“You’re tied for first,” I told her. Her mom immediately signed a slip for herself and tied the daughter. Not to be outdone, Dad straddled the bike. He peddled until his face was beet red, but he slightly edged out his daughter and wife by making the last light burn brighter. I really hoped he wasn’t going to have a heart attack on my watch.
“You must be a competitive family,” I remarked to the mother at their not-so-friendly competition.
“Oh, yes, we definitely are!” she said.
“I understand,” I said. “I come from a competitive family too.”
Could that be an understatement? I thought Jim and I were going to come to blows a few times over cards. He and Aunt Nita were the most infuriating pitch players I ever saw in my life. Uncle Johnny and I couldn’t seem to beat them very often. They bid like lunatics. “I’ll bid eight, on my partner’s hand,” Jim would say. Then he would toss a small card out, but if I put a point on it, Aunt Nita would throw a bigger card on. The next thing you knew, she would dominate the round with all the big trumps.
When Jim developed dementia, he became confused about which cards to play. His mom helped him. He was competitive enough to bid. From the look on his mom’s face, I knew he was still bidding his partner’s hand. From experience, I knew it would work most of the time.
Jim was always competitive with his Uncle Vic and Uncle Orvie. They played checkers at a furious level. The bet was the checkerboard itself. The loser had to sign away his championship and give the board to the winner. Uncle Vic had possession of the checkerboard when he died unexpectedly. He left the checkerboard and the championship to Jim.
Jim and Uncle Orvie were Mario Karts aficionados. Uncle Orvie’s rheumatoid arthritis twisted his fingers into odd shapes. You would think Jim would have cut his uncle some slack due to his handicap. No way. Those two played game after game. “Let’s go for the best two out of three,” the loser would say. “Now let’s play for the championship—the best nine out of ten!” On and on they played. Each wanting to win the fierce, not-always-friendly competition.
In “You’re Going the Wrong Way” published in A Cup of Comfort for Families Touched by Alzheimer’s I describe my dismal Mario Kart experience. I not only couldn’t beat Jim, I couldn’t keep my kart on the track going in the correct direction.
“I don’t know how to play,” I would tell Jim after I lost another game. “Which buttons do I push?”
His aphasia had limited his communication skills and he couldn’t explain the game to me. “I have no idea,” he would say, using one of his stock phrases.
Right before he zipped Toad across the finish line, he would remind me, “You’re going the wrong way!”
He would tell me how to play if he could, I always reassured myself. Surely that was not the gleam of not-so-friendly competition in his eyes. Or was it?
“Flip on the fan first,” she said. “Anyone can get that going.” The idea was to peddle the bicycle to generate enough energy to light up a series of items. “I do the florescent light next, because it’s easy too.”
I gave it a try. I got the fan going and the florescent light flickered feebly. Then, the bike felt like it hit a brick wall—and I was done.
I felt like a Carney beckoning people to step up and show their skill. Most people could start the fan, a lamp, a teensy TV, and the florescent bulb, but when I switched on the 25 watt bulb, the game was over. Another loser! Five bulbs remained unlit.
My boss dropped by the Co-op Building and hopped on the bike to show what he could do. He pumped away without showing any exertion—ah, to have the energy of the young again. I flipped switches working my way from bottom to top. He began to breathe harder and with only two switches left he couldn’t budge the pedals.
About an hour later a teenager wanted to ride the bike. Her mom signed the permission slip, and she hopped on. She peddled, and I flipped switches. Her face turned red, but she kept on pumping. She stopped at the same level as my boss.
“You’re tied for first,” I told her. Her mom immediately signed a slip for herself and tied the daughter. Not to be outdone, Dad straddled the bike. He peddled until his face was beet red, but he slightly edged out his daughter and wife by making the last light burn brighter. I really hoped he wasn’t going to have a heart attack on my watch.
“You must be a competitive family,” I remarked to the mother at their not-so-friendly competition.
“Oh, yes, we definitely are!” she said.
“I understand,” I said. “I come from a competitive family too.”
Could that be an understatement? I thought Jim and I were going to come to blows a few times over cards. He and Aunt Nita were the most infuriating pitch players I ever saw in my life. Uncle Johnny and I couldn’t seem to beat them very often. They bid like lunatics. “I’ll bid eight, on my partner’s hand,” Jim would say. Then he would toss a small card out, but if I put a point on it, Aunt Nita would throw a bigger card on. The next thing you knew, she would dominate the round with all the big trumps.
When Jim developed dementia, he became confused about which cards to play. His mom helped him. He was competitive enough to bid. From the look on his mom’s face, I knew he was still bidding his partner’s hand. From experience, I knew it would work most of the time.
Jim was always competitive with his Uncle Vic and Uncle Orvie. They played checkers at a furious level. The bet was the checkerboard itself. The loser had to sign away his championship and give the board to the winner. Uncle Vic had possession of the checkerboard when he died unexpectedly. He left the checkerboard and the championship to Jim.
Jim and Uncle Orvie were Mario Karts aficionados. Uncle Orvie’s rheumatoid arthritis twisted his fingers into odd shapes. You would think Jim would have cut his uncle some slack due to his handicap. No way. Those two played game after game. “Let’s go for the best two out of three,” the loser would say. “Now let’s play for the championship—the best nine out of ten!” On and on they played. Each wanting to win the fierce, not-always-friendly competition.
In “You’re Going the Wrong Way” published in A Cup of Comfort for Families Touched by Alzheimer’s I describe my dismal Mario Kart experience. I not only couldn’t beat Jim, I couldn’t keep my kart on the track going in the correct direction.
“I don’t know how to play,” I would tell Jim after I lost another game. “Which buttons do I push?”
His aphasia had limited his communication skills and he couldn’t explain the game to me. “I have no idea,” he would say, using one of his stock phrases.
Right before he zipped Toad across the finish line, he would remind me, “You’re going the wrong way!”
He would tell me how to play if he could, I always reassured myself. Surely that was not the gleam of not-so-friendly competition in his eyes. Or was it?
Sunday, August 16, 2009
Country Living—Not Just for Farmers
The State Fair started Thursday with a parade and $1 night. By the time I got off work at 6:00, we had already heard that traffic was snarled and you couldn’t get close to the parade route. Without giving it a second thought, I headed north toward home avoiding the whole mess, fair and all.
Our fair always has a theme, and this year the theme is “Rural Lifestyles Showcase” with an emphasis on “Country Living—Not Just for Farmers.” I’m not sure which is really the theme, but it would seem that the Children’s Barnyard beat out the carnival for top billing this year.
The State Fair changes everything in Sedalia and puts a crimp in our rural lifestyle for the duration. Getting across town usually takes about fifteen minutes on a high traffic day, but during the fair, traffic jams up from one end of town to the other. We have two kinds of locals—those who spend a lot of time at the fair, and those who leave town.
I’ve lived in Sedalia since 1972, and I’ve seen a lot of fairs come and go. I have fond memories of Tammy Wynette singing to Jim, a lot of great concerts, free shows at the Bud tent, herding kids through the carnival, corndogs, ice cream and snow cones.
The last time Jim went to the fair, his dementia had advanced to the point he needed to be supervised. I had asked Jim if he wanted to go to the Clint Black concert with me and he emphatically declined my invitation. I made arrangements for my niece, Rhonda, to go with me instead. At the last minute, Jim changed his mind. When I couldn’t get a seat anywhere near ours, I bought two tickets and asked his sister, Ginger, to take him. It was quite an adventure for Ginger to try to keep up with Jim. She had to be pretty quick to pay for the water he pulled out of the barrels in front of the vendor carts. After a busy afternoon and evening at the concert, we walked to the parking lot together. Rhonda and I pulled out, while Ginger and Jim sat in his Nissan truck. I figured they would be along soon. When they finally got home, Ginger told me she turned the lights on, but each time she let go of the knob, they went off. Jim laughed at her, but couldn’t tell her how to get them to stay on. They sat in the lot until Ginger finally figured it out.
Yes, I have fond memories of the fair, but I also remember sunburns, blistered feet, sick kids, lightening and wind storms, and suffocating heat. A few years ago, I took my grandkids to the fair and if they hadn’t helped me find the car, I might still be wandering around the parking lot looking for it. Last year, I found my car after the Air Supply concert, but in the unlit parking lot, I drove around looking for a way out that didn’t involve a deep ditch. I finally followed another car out of the lot that seemed to know where the one driveway was. It almost makes me think I shouldn’t be attending the fair without supervision, at least after dark.
I plan on working a few hours at the Rural Electric Co-op Building this year. That will probably be my one and only time at the country showcase. Other than that, I plan on avoiding town until the fair is over and our rural lifestyle returns.
Our fair always has a theme, and this year the theme is “Rural Lifestyles Showcase” with an emphasis on “Country Living—Not Just for Farmers.” I’m not sure which is really the theme, but it would seem that the Children’s Barnyard beat out the carnival for top billing this year.
The State Fair changes everything in Sedalia and puts a crimp in our rural lifestyle for the duration. Getting across town usually takes about fifteen minutes on a high traffic day, but during the fair, traffic jams up from one end of town to the other. We have two kinds of locals—those who spend a lot of time at the fair, and those who leave town.
I’ve lived in Sedalia since 1972, and I’ve seen a lot of fairs come and go. I have fond memories of Tammy Wynette singing to Jim, a lot of great concerts, free shows at the Bud tent, herding kids through the carnival, corndogs, ice cream and snow cones.
The last time Jim went to the fair, his dementia had advanced to the point he needed to be supervised. I had asked Jim if he wanted to go to the Clint Black concert with me and he emphatically declined my invitation. I made arrangements for my niece, Rhonda, to go with me instead. At the last minute, Jim changed his mind. When I couldn’t get a seat anywhere near ours, I bought two tickets and asked his sister, Ginger, to take him. It was quite an adventure for Ginger to try to keep up with Jim. She had to be pretty quick to pay for the water he pulled out of the barrels in front of the vendor carts. After a busy afternoon and evening at the concert, we walked to the parking lot together. Rhonda and I pulled out, while Ginger and Jim sat in his Nissan truck. I figured they would be along soon. When they finally got home, Ginger told me she turned the lights on, but each time she let go of the knob, they went off. Jim laughed at her, but couldn’t tell her how to get them to stay on. They sat in the lot until Ginger finally figured it out.
Yes, I have fond memories of the fair, but I also remember sunburns, blistered feet, sick kids, lightening and wind storms, and suffocating heat. A few years ago, I took my grandkids to the fair and if they hadn’t helped me find the car, I might still be wandering around the parking lot looking for it. Last year, I found my car after the Air Supply concert, but in the unlit parking lot, I drove around looking for a way out that didn’t involve a deep ditch. I finally followed another car out of the lot that seemed to know where the one driveway was. It almost makes me think I shouldn’t be attending the fair without supervision, at least after dark.
I plan on working a few hours at the Rural Electric Co-op Building this year. That will probably be my one and only time at the country showcase. Other than that, I plan on avoiding town until the fair is over and our rural lifestyle returns.
Saturday, August 8, 2009
Hurry Up Patience!
On this hot August Saturday morning, I grabbed a cup of coffee and hopped onto the Internet to check email before making my weekly blog post. “Hopped” may be too bold a word to describe dial-up in a high-speed world. My computer looks like the one on the right in the commercial—the one that has loaded a sliver of data while the one on the left displays a complete picture.
My first introduction to a computer was in 1980 when I was hired to enter customer information on an IBM System 34. I typed data onto a screen, pressed enter, and waited a half minute or so for the information to be added to the file and display the next input screen. It all seemed pretty fast compared to the handwritten sheets we filled out in the subscription department of Full Cry magazine.
My home dial-up has become a virtual turtle in comparison to the high-speed Internet at work. To make matters more inequitable, this week our IT department installed a new Dell computer with two gigantic side-by-side screens. Now I can open up a dozen programs and slide displays around until I can see them all. It makes me feel like an interior decorator. Does my calendar look better here, or here? Oh, heck, I’ll just slide it on across to a different screen.
On my dial-up, I find myself gritting my teeth while I wait for a graphic laden website to load. I remind myself that patience is a virtue, but why can’t it just hurry up?
I’m torn between wanting speediness and longing for a more relaxed lifestyle. This Saturday morning is so different from the days I spent, lying in bed drinking coffee with Jim, waking up slowly and not being rushed to do anything. The two of us would fix breakfast and sit at our kitchen table laughing and making plans.
Of course, as dementia changed the entire fabric of our lives, mornings sometimes started with Jim pouring water into the pot without a carafe to catch the coffee. Or I might wake up and find him missing, jump in the car and drive down the road looking for him. Relaxation changed to stress, and I discovered that for a person without patience, I learned to accept our life’s changes remarkably well. The Serenity Prayer became more than a plaque on my wall.
I was never able to revert to my days of leisurely plans and now have a mental To-Do list that nags me constantly. Sometimes, I have to re-enforce my memory with a written list, an electronic reminder, and sticky notes plastered to everything. I need beeps, bells, and visual aids to keep me moving forward. All I need to figure out now is how to multitask multitasking.
I became a blogger on Wellsphere this week and Wellsphere encourages members to set goals and share those goals with like-minded people. So far, I haven’t set any. My goals are planted in my head and can keep me awake at night with small encouragement. Doesn’t a goal of a more laid-back lifestyle seem counterintuitive?
My brother-in-law, Terry, calls people who are constantly on the go “busybodies.” I find his meaning to be more fitting that the traditional definition of the word. I’ve become a busybody, and don’t have time to be patient. Heaven help me, I have a high-speed mind in a dial-up body!
****
Check out my Profile and Blog on Wellsphere! http://www.wellsphere.com/l-s-fisher-profile/143451
My first introduction to a computer was in 1980 when I was hired to enter customer information on an IBM System 34. I typed data onto a screen, pressed enter, and waited a half minute or so for the information to be added to the file and display the next input screen. It all seemed pretty fast compared to the handwritten sheets we filled out in the subscription department of Full Cry magazine.
My home dial-up has become a virtual turtle in comparison to the high-speed Internet at work. To make matters more inequitable, this week our IT department installed a new Dell computer with two gigantic side-by-side screens. Now I can open up a dozen programs and slide displays around until I can see them all. It makes me feel like an interior decorator. Does my calendar look better here, or here? Oh, heck, I’ll just slide it on across to a different screen.
On my dial-up, I find myself gritting my teeth while I wait for a graphic laden website to load. I remind myself that patience is a virtue, but why can’t it just hurry up?
I’m torn between wanting speediness and longing for a more relaxed lifestyle. This Saturday morning is so different from the days I spent, lying in bed drinking coffee with Jim, waking up slowly and not being rushed to do anything. The two of us would fix breakfast and sit at our kitchen table laughing and making plans.
Of course, as dementia changed the entire fabric of our lives, mornings sometimes started with Jim pouring water into the pot without a carafe to catch the coffee. Or I might wake up and find him missing, jump in the car and drive down the road looking for him. Relaxation changed to stress, and I discovered that for a person without patience, I learned to accept our life’s changes remarkably well. The Serenity Prayer became more than a plaque on my wall.
I was never able to revert to my days of leisurely plans and now have a mental To-Do list that nags me constantly. Sometimes, I have to re-enforce my memory with a written list, an electronic reminder, and sticky notes plastered to everything. I need beeps, bells, and visual aids to keep me moving forward. All I need to figure out now is how to multitask multitasking.
I became a blogger on Wellsphere this week and Wellsphere encourages members to set goals and share those goals with like-minded people. So far, I haven’t set any. My goals are planted in my head and can keep me awake at night with small encouragement. Doesn’t a goal of a more laid-back lifestyle seem counterintuitive?
My brother-in-law, Terry, calls people who are constantly on the go “busybodies.” I find his meaning to be more fitting that the traditional definition of the word. I’ve become a busybody, and don’t have time to be patient. Heaven help me, I have a high-speed mind in a dial-up body!
****
Check out my Profile and Blog on Wellsphere! http://www.wellsphere.com/l-s-fisher-profile/143451
Monday, August 3, 2009
Compassionate Allowances
On July 29, the Social Security Administration held a hearing on the need for Compassionate Allowances for individuals with younger-onset Alzheimer’s. Harry Johns, president and CEO of the Alzheimer’s Association, was among the experts who testified for a need to streamline the application process for Social Security Disability. By including younger-onset Alzheimer’s and related disorders on the list, the waiting period for benefits will be greatly reduced. In his testimony, Johns said, “Through the Compassionate Allowances process, Social Security can avoid the extra costs to the agency of numerous appeals and families can avoid the financial and emotional toll of going through a long decision process.”
I was interested in the testimony about primary progressive aphasia. Although many people are aware of Alzheimer’s, including early onset, they are not aware of the lesser known related disorders. When I read the testimony of Darby Morhardt, LCSW, in support of primary progressive aphasia, I was surprised to find that Frontotemporal Dementia (FTD) was placed on the Compassionate Allowances list in 2008, but not Alzheimer’s disease and related disorders.
Considering the difficulty of diagnosing which particular type of dementia a younger person may have, I don’t understand how FTD can be on the list and not Alzheimer’s and related disorders. Placing FTD on the list was a proper move, but that addition in itself speaks to recognition of the devastating financial and healthcare problems caused by dementia when individuals are too young to qualify for regular social security.
If younger-onset Alzheimer’s and the lesser known related disorders are added to the list of Compassionate Allowances, it would speed up the social security process for this group who falls between the cracks.
When Jim was diagnosed with dementia of the Alzheimer’s type, his attorney told us it could hurt his social security disability claim. We had gone through countless appeals for disability based on Jim’s loss of motion and constant pain in his neck and shoulder. We were in the final appeals process when Jim began to lose his ability to communicate. His aphasia made it impossible for him to present a coherent testimony at his own disability hearing. Our attorney asked us to wait in the hallway while he presented the successful appeal to the judge. We had been in the appeals process so long that Jim received back pay and retroactive Medicare.
The very nature of dementia impedes the disability process. Jim was one of the lucky ones. Not lucky in receiving his social security in a timely manner. He was lucky because I had a job with health insurance.
What happens to those with younger-onset dementia who get stalled in the process because they cannot speak for themselves? How does a family survive when a person with Alzheimer’s cannot work and requires constant care?
Too many times a person with younger-onset dementia loses his job before diagnosis. Often a loss of employment means the end of health insurance. Without a job and the inability to get a new job, it is impossible to afford COBRA. It can easily take two years to get a diagnosis of early-onset dementia and even longer to receive a favorable disability determination.
When a person of any age is diagnosed with Alzheimer’s or related dementia, it places the entire family under emotional stress and financial strain. To include younger-onset Alzheimer's type of dementia on the Compassionate Allowances list would relieve families of one of the frustrating worries following diagnosis.
----
Source: http://www.alz.org/
I was interested in the testimony about primary progressive aphasia. Although many people are aware of Alzheimer’s, including early onset, they are not aware of the lesser known related disorders. When I read the testimony of Darby Morhardt, LCSW, in support of primary progressive aphasia, I was surprised to find that Frontotemporal Dementia (FTD) was placed on the Compassionate Allowances list in 2008, but not Alzheimer’s disease and related disorders.
Considering the difficulty of diagnosing which particular type of dementia a younger person may have, I don’t understand how FTD can be on the list and not Alzheimer’s and related disorders. Placing FTD on the list was a proper move, but that addition in itself speaks to recognition of the devastating financial and healthcare problems caused by dementia when individuals are too young to qualify for regular social security.
If younger-onset Alzheimer’s and the lesser known related disorders are added to the list of Compassionate Allowances, it would speed up the social security process for this group who falls between the cracks.
When Jim was diagnosed with dementia of the Alzheimer’s type, his attorney told us it could hurt his social security disability claim. We had gone through countless appeals for disability based on Jim’s loss of motion and constant pain in his neck and shoulder. We were in the final appeals process when Jim began to lose his ability to communicate. His aphasia made it impossible for him to present a coherent testimony at his own disability hearing. Our attorney asked us to wait in the hallway while he presented the successful appeal to the judge. We had been in the appeals process so long that Jim received back pay and retroactive Medicare.
The very nature of dementia impedes the disability process. Jim was one of the lucky ones. Not lucky in receiving his social security in a timely manner. He was lucky because I had a job with health insurance.
What happens to those with younger-onset dementia who get stalled in the process because they cannot speak for themselves? How does a family survive when a person with Alzheimer’s cannot work and requires constant care?
Too many times a person with younger-onset dementia loses his job before diagnosis. Often a loss of employment means the end of health insurance. Without a job and the inability to get a new job, it is impossible to afford COBRA. It can easily take two years to get a diagnosis of early-onset dementia and even longer to receive a favorable disability determination.
When a person of any age is diagnosed with Alzheimer’s or related dementia, it places the entire family under emotional stress and financial strain. To include younger-onset Alzheimer's type of dementia on the Compassionate Allowances list would relieve families of one of the frustrating worries following diagnosis.
----
Source: http://www.alz.org/
Saturday, July 25, 2009
Living Words: Therapeutic Writing for Early-Stage Dementia
Lauren Holland, a student at Wofford College, came across my Writing as Therapy blog post and sent an email two weeks ago about the Living Words program. I answered her email and casually goggled Wofford College to see where it was located. My Goggle search informed me that Wofford is in Spartanburg, SC.
That information made me smile because that’s where my good friend, Ralph Winn, lives. I met Ralph at the 2000 Alzheimer’s Association Public Policy Forum in Washington, DC. Ralph and I, both board members at our local associations, were attending the forum with our respective executive directors. We hit it off at the executive directors’ reception. “Oh, you are a board member, too,” Ralph said with a charming southern accent that immediately made me realize he was indeed a southern gentleman. “I guess we are crashing this party,” he said. Ralph figured he might be distinguished as the oldest participant at the meeting, but he was determined to be an advocate for his lovely wife who had Alzheimer’s.
The next morning I was free to explore Washington, DC, while my executive director was in a meeting. I called the front desk and asked to be connected to Ralph’s room to ask him to go with me. He wasn’t in his room, so I decided he might be people watching. Sure enough, I found him sitting in a big comfy chair in the lobby. That day we toured the Smithsonian and our friendship was born.
Today, I received a second email from Lauren in Spartanburg, SC. This time Lauren mentioned their website and I decided to visit the site to learn more about the Living Words program. This therapeutic writing workshop is for individuals with dementia and a caregiver or friend who accompanies them. I read blog entries, sample stories, program descriptions, and followed a link to a newspaper article about a father and daughter reconnecting because of the program.
I know from personal experience that writing is cathartic and have always recommended it as a way to cope with stress and grief. I knew from the stories submitted by Tracy Mobley and Charles Schneider to Alzheimer’s Anthology of Unconditional Love that writing helped my friends with dementia. Tracy tells me that writing helps her express herself better than speaking. Writing gives her more time to think about what she wants to say. Writing is not easy for her, but it is well worth the effort.
The Living Words website chronicles the writing program in sufficient detail to allow the implementation of this program in other communities. The website serves as a template for support groups, facilities, or other organizations to help families touched by Alzheimer’s benefit from writing.
Participants are not pushed into writing, but gently nudged into exploring their memories or stretching themselves to creatively answer writing prompts. Workshops are conducted with humor and encourage camaraderie between caregivers and their loved ones with dementia as they share their ideas, thoughts, and reminiscences with each other. Living Words is a concept with the potential to use the therapeutic benefits of writing to improve quality of life for families living with Alzheimer’s.
Visit Living Words website at www.livingwordsprogram.com and see if you can be inspired to offer a similar program in your community.
That information made me smile because that’s where my good friend, Ralph Winn, lives. I met Ralph at the 2000 Alzheimer’s Association Public Policy Forum in Washington, DC. Ralph and I, both board members at our local associations, were attending the forum with our respective executive directors. We hit it off at the executive directors’ reception. “Oh, you are a board member, too,” Ralph said with a charming southern accent that immediately made me realize he was indeed a southern gentleman. “I guess we are crashing this party,” he said. Ralph figured he might be distinguished as the oldest participant at the meeting, but he was determined to be an advocate for his lovely wife who had Alzheimer’s.
The next morning I was free to explore Washington, DC, while my executive director was in a meeting. I called the front desk and asked to be connected to Ralph’s room to ask him to go with me. He wasn’t in his room, so I decided he might be people watching. Sure enough, I found him sitting in a big comfy chair in the lobby. That day we toured the Smithsonian and our friendship was born.
Today, I received a second email from Lauren in Spartanburg, SC. This time Lauren mentioned their website and I decided to visit the site to learn more about the Living Words program. This therapeutic writing workshop is for individuals with dementia and a caregiver or friend who accompanies them. I read blog entries, sample stories, program descriptions, and followed a link to a newspaper article about a father and daughter reconnecting because of the program.
I know from personal experience that writing is cathartic and have always recommended it as a way to cope with stress and grief. I knew from the stories submitted by Tracy Mobley and Charles Schneider to Alzheimer’s Anthology of Unconditional Love that writing helped my friends with dementia. Tracy tells me that writing helps her express herself better than speaking. Writing gives her more time to think about what she wants to say. Writing is not easy for her, but it is well worth the effort.
The Living Words website chronicles the writing program in sufficient detail to allow the implementation of this program in other communities. The website serves as a template for support groups, facilities, or other organizations to help families touched by Alzheimer’s benefit from writing.
Participants are not pushed into writing, but gently nudged into exploring their memories or stretching themselves to creatively answer writing prompts. Workshops are conducted with humor and encourage camaraderie between caregivers and their loved ones with dementia as they share their ideas, thoughts, and reminiscences with each other. Living Words is a concept with the potential to use the therapeutic benefits of writing to improve quality of life for families living with Alzheimer’s.
Visit Living Words website at www.livingwordsprogram.com and see if you can be inspired to offer a similar program in your community.
Saturday, July 18, 2009
Life is Good
I found myself in a funk—tired, rundown, and overdrawn on vitality. To regain my normal optimistic outlook on life, I decided to take a mini-vacation with nary a single plan to clutter up my do-nothingness. Usually the idea of taking three days off work in the middle of a Missouri July means chilling out under the air conditioner.
Wednesday, I went to Kansas City and wore one of my “Life is Good” T-shirts for luck. I ventured into Dick’s Sporting Goods to see what kind of mid-summer bargains they might have. I practically glowed with optimism when I found my favorite T-shirts on sale and snapped up four “Life is Good” long-sleeved T-shirts. Well, I figured I couldn’t wear them until fall, but knew I’d get my money’s worth then.
When I was in Boston last year I visited the original Life is Good store. That’s where I heard the Bert and John Jacobs’ story. These two guys made their start by selling T-shirts out of the back of a van. With a creative idea and a vanload of optimism, their achievements must have exceeded their wildest optimistic dreams.
Sometimes in my life, it’s been hard for me to remain optimistic, but it is in my nature to look for the good in life. That is part of what helped me make it through the ten years of Jim’s dementia. I sought out the good times, the quiet times, the loving times. I found that by cherishing those small moments of joy, I could make it through the bad times.
As we travel the river of life, we hit snags, whirlpools try to suck us downward, and sometimes we wind up high and dry on a sand bar. When we navigate through dangerous rapids we find ourselves in mortal danger as we cling to life.
We can recognize the dangers of a river, but often don’t recognize the risk of stress. Warning signs are everywhere—high blood pressure, chronic fatigue, depression. We need to find a calm, quiet place and mentally regroup. We all need respite from the pressures of life. If we don’t take time for ourselves, our inner optimism will die from lack of use.
My mini-vacation became respite from work and hot weather. A friend and I had a backyard barbeque Thursday evening and as we relaxed in lawn chairs a cool breeze sprung up. Who would have thought we would have 70 degree weather on a mid-July evening?
Today, I awoke to 60 degree weather and guess what? I broke out one of my Life is Good shirts. I removed the tag and realized that my shirt is named “Acoustic Jake.”
I still find joy in life’s small treasures. I find comfort in reading inspirational books like Joel Osteen’s Your Best Life Now and Become a Better You. This morning, my uplifting reading came from a tag off my Life is Good shirt. These words surround the logo on the tag: “Do what you like. Like what you do. Optimism can take you anywhere.”
Life is good.
http://www.lifeisgood.com/
http://www.joelosteen.com/
Wednesday, I went to Kansas City and wore one of my “Life is Good” T-shirts for luck. I ventured into Dick’s Sporting Goods to see what kind of mid-summer bargains they might have. I practically glowed with optimism when I found my favorite T-shirts on sale and snapped up four “Life is Good” long-sleeved T-shirts. Well, I figured I couldn’t wear them until fall, but knew I’d get my money’s worth then.
When I was in Boston last year I visited the original Life is Good store. That’s where I heard the Bert and John Jacobs’ story. These two guys made their start by selling T-shirts out of the back of a van. With a creative idea and a vanload of optimism, their achievements must have exceeded their wildest optimistic dreams.
Sometimes in my life, it’s been hard for me to remain optimistic, but it is in my nature to look for the good in life. That is part of what helped me make it through the ten years of Jim’s dementia. I sought out the good times, the quiet times, the loving times. I found that by cherishing those small moments of joy, I could make it through the bad times.
As we travel the river of life, we hit snags, whirlpools try to suck us downward, and sometimes we wind up high and dry on a sand bar. When we navigate through dangerous rapids we find ourselves in mortal danger as we cling to life.
We can recognize the dangers of a river, but often don’t recognize the risk of stress. Warning signs are everywhere—high blood pressure, chronic fatigue, depression. We need to find a calm, quiet place and mentally regroup. We all need respite from the pressures of life. If we don’t take time for ourselves, our inner optimism will die from lack of use.
My mini-vacation became respite from work and hot weather. A friend and I had a backyard barbeque Thursday evening and as we relaxed in lawn chairs a cool breeze sprung up. Who would have thought we would have 70 degree weather on a mid-July evening?
Today, I awoke to 60 degree weather and guess what? I broke out one of my Life is Good shirts. I removed the tag and realized that my shirt is named “Acoustic Jake.”
I still find joy in life’s small treasures. I find comfort in reading inspirational books like Joel Osteen’s Your Best Life Now and Become a Better You. This morning, my uplifting reading came from a tag off my Life is Good shirt. These words surround the logo on the tag: “Do what you like. Like what you do. Optimism can take you anywhere.”
Life is good.
http://www.lifeisgood.com/
http://www.joelosteen.com/
Sunday, July 12, 2009
Thinking with My Heart
This week I received email newsletters from two trusted sources, Alzheimer’s Weekly and the Alzheimer’s Association, about a Swedish/Finnish study. The crux of the study was a marriage, so to speak, between dementia and committed relationships. I perked up when the researchers concluded that widows (like me!) were three times as likely to develop dementia as married women. I read new studies the same way I read a horoscope—I pick out the parts I like and bah-humbug the rest.
The researchers say that social involvement will help offset the dementia risk of living alone. That’s good news for me since I am by nature a social being. I have been an Alzheimer’s Association volunteer and advocate for the past fourteen years. I’m an officer in a local business women’s group. Talk about an active club! We move from one project to the next, and have monthly meetings, weekly friendship luncheons, and several great conferences each year. Last, but certainly not least, I’m president of the Columbia Chapter of the Missouri Writers’ Guild. Oh, and did I mention I work full-time as office manager at a rural electric cooperative? So, I think I have “social” covered.
When the Alzheimer’s Association first unveiled their Maintain Your Brain program, I had mixed emotions. My friend, Diane and I were delegates at an assembly meeting in Chicago when we first heard about the program. Diane’s husband had recently died from early onset dementia, and she was concerned that people would begin to think that dementia was brought on by unhealthy habits. I had to agree with her.
Yes, we all want to do things to keep our minds healthy, but what about people like Jim? He read, played the guitar, knew the lyrics to hundreds of songs, and he was only forty-nine years old. He certainly was not at risk for dementia.
After I learned more about the program, I liked the common sense idea behind the science. Maintain Your Brain can be condensed into a few basic categories: stay mentally, socially, and physically active, and while you’re at it, eat brain healthy food. How to develop these simple, but effective, brain healthy habits can be found on the Alzheimer’s Association website at http://www.alz.org/we_can_help_brain_health_maintain_your_brain.asp.
Heart and brain health are connected in many ways. So think with your heart, but before you sign up for e-harmony.com consider other factors that can reduce your risk of dementia. A good rule to keep in mind is that if it’s good for your heart it’s good for your brain.
The researchers say that social involvement will help offset the dementia risk of living alone. That’s good news for me since I am by nature a social being. I have been an Alzheimer’s Association volunteer and advocate for the past fourteen years. I’m an officer in a local business women’s group. Talk about an active club! We move from one project to the next, and have monthly meetings, weekly friendship luncheons, and several great conferences each year. Last, but certainly not least, I’m president of the Columbia Chapter of the Missouri Writers’ Guild. Oh, and did I mention I work full-time as office manager at a rural electric cooperative? So, I think I have “social” covered.
When the Alzheimer’s Association first unveiled their Maintain Your Brain program, I had mixed emotions. My friend, Diane and I were delegates at an assembly meeting in Chicago when we first heard about the program. Diane’s husband had recently died from early onset dementia, and she was concerned that people would begin to think that dementia was brought on by unhealthy habits. I had to agree with her.
Yes, we all want to do things to keep our minds healthy, but what about people like Jim? He read, played the guitar, knew the lyrics to hundreds of songs, and he was only forty-nine years old. He certainly was not at risk for dementia.
After I learned more about the program, I liked the common sense idea behind the science. Maintain Your Brain can be condensed into a few basic categories: stay mentally, socially, and physically active, and while you’re at it, eat brain healthy food. How to develop these simple, but effective, brain healthy habits can be found on the Alzheimer’s Association website at http://www.alz.org/we_can_help_brain_health_maintain_your_brain.asp.
Heart and brain health are connected in many ways. So think with your heart, but before you sign up for e-harmony.com consider other factors that can reduce your risk of dementia. A good rule to keep in mind is that if it’s good for your heart it’s good for your brain.
Saturday, July 4, 2009
Music Therapy Stimulates Memories
Music stimulates our memories and unveils feelings we thought we had forgotten. Have you ever noticed how a song can bring back a flood of emotions? A familiar melody can take us back in time, and although our physical appearance might shriek middle-age, our emotional age is the era of the song.If you don’t think music can transform you internally, pay attention to the songs that give you happy feet. Even if your body isn’t up to the dance moves of your youth, your heart hears the music and your feet want to dance.
Throughout the years of our marriage, Jim played his guitar nearly every morning. He called it his therapy. At work I often listen to KDRO radio, a local station that plays country music and almost every song makes me think of Jim. One of the saddest things about dementia was when Jim began to have trouble playing his guitar. One day he asked me to tune his guitar. Jim, the man with perfect pitch, wanted tone-deaf me to attempt something I had never done in my life. I knew his request was beyond my abilities, but I called his brother and he took care of it.
Music has been a family tradition in my mom’s family. I grew up thinking that all normal families played guitars and sang. On Saturday nights my mom and her brothers, neighbors, and friends sat on wooden kitchen chairs and played music for hours. On those Saturdays at Grandma and Grandpa Whittle’s house, my Aunt Venetia always sang my grandma’s favorite gospel songs.
My mom, Aunt Labetta, Jimmy (my brother), cousin Reta, and Gene Branch play music at the nursing home one Saturday a month. Recently, I dropped by Good Shepherd Nursing Home in Versailles to listen to the music. I wound my way through the halls to the dining room where they were set up on the stage. Several residents tapped their toes and sang along with the songs they knew. At the front of the room, my Aunt Venetia sat dozing in her wheelchair while my cousin Jan attended to her.
My mom and Aunt Labetta, as always, dedicated a special song to their sister-in-law. Aunt Venetia is in the late stages of Alzheimer’s, yet she perks up when she hears the music she’s loved her entire life.
When Jim was in the nursing home, his favorite channel was GAC. His eyes were glued to the set when his favorite entertainers performed. His foot would tap in time to the music that he once effortlessly played.
With the special bond music has to our memories, it is no wonder that eyes sparkle at certain songs. Sometimes the sparkle is caused by unshed tears, but often it’s just memories dancing in our brains that bring life to our eyes.
Sunday, June 28, 2009
Home Videos: I Cried Until I Laughed
Yesterday, I decided to sort some of our old home videos. Jim was the cameraman and captured every vacation and important event on tape. Sometimes, I would get irritated with him for turning our lives into reality TV. Usually, I preferred to unpack while he played the tapes for the family.
While Jim was in the nursing home, I couldn’t bear to watch any of the tapes. By then, he had lost his ability to carry on a conversation. He was my best friend and I missed how we shared our deepest thoughts and feelings, our hopes and fears. After aphasia stole his conversation skills, he became more and more silent and spoke only a few words in repetitious phrases.
Jim had meticulously labeled each tape with his initials, JDF, and when, where, or what the tape contained. I picked up a tape labeled: Colorado 1988 and popped it into the VCR/DVD player. My screen was filled with majestic mountain scenery, deer, elk, and coyotes as Jim taped one of our animal watch evenings in the Rocky Mountain National Park.
Jim taped our campfire breakfast the next morning, and to keep him from running the video camera while driving the curvy mountain roads, I taped our drive through the park. Jim, as usual, narrated. I turned the camera on Jim and he began to talk about our plans for the day. “We’re having the time of our lives,” he said.
Tears welled up as I watched Jim on the video and was reminded of the man he was before we knew anything about dementia. He spoke in his quick-witted manner, relaxed, and happy in his beloved Colorado. The mountains worked their magic on him giving him an inner happiness and peace that he didn’t have in our normal world. I was beginning to think that watching these films was depressing and a really bad idea.
“We are going to the Big Horn Meadow,” Jim said. “I’m going to feed the chipmunks.” Jim was pretty good to follow all the rules and regulations in the park, but he had always fed the chipmunks.
“Why not? It’s only a $25 fine—per offence,” I said.
“We can afford $25,” he answered.
Jim’s bantering from more than twenty years ago chased away my tears, and I found myself laughing out loud. Somehow in my memories, I had forgotten Jim’s great sense of humor.
During one of our hikes, Jim had the camera, and he said, “I’ve dropped back to film because Linda doesn’t like for me to film her from behind. Ooops,” he said as the camera caught my rear view. He swung the camera aside and then back, “Ooops. And ooops.”
As we drove up Fall River Road next to a sheer drop off, Jim teasingly asked me if I wanted him to get closer to my side of the road so I could get a better picture. “Oh, no,” I said, “I’m fine.”
When the tape came to an end, I popped in a couple of tapes marked “Idaho” to see what they were. At least that’s what I told myself. One of them was a trip Jim took to Idaho without me. Jim shot footage of his cousin Joe in Idaho and in the next segment the camera zoomed in for a close-up of a McDonald’s sign. “Hey, honey, guess where I am! This is the only McDonald’s I ever liked to eat at.”
“Estes Park!” I said from my seat on the couch where I still held the remote in my hands.
“Estes Park!” he said…as if I wouldn’t immediately know.
There’s no danger that I will ever forget Jim as long as I’m breathing, but memories are limited. Most of the moments caught on film were buried so deep within my brain I would probably have never retrieved them. Watching the tapes are a way of reminding me of the wondrous moments I’ve lived, even if nostalgia makes me cry until happy memories make me laugh.
While Jim was in the nursing home, I couldn’t bear to watch any of the tapes. By then, he had lost his ability to carry on a conversation. He was my best friend and I missed how we shared our deepest thoughts and feelings, our hopes and fears. After aphasia stole his conversation skills, he became more and more silent and spoke only a few words in repetitious phrases.
Jim had meticulously labeled each tape with his initials, JDF, and when, where, or what the tape contained. I picked up a tape labeled: Colorado 1988 and popped it into the VCR/DVD player. My screen was filled with majestic mountain scenery, deer, elk, and coyotes as Jim taped one of our animal watch evenings in the Rocky Mountain National Park.
Jim taped our campfire breakfast the next morning, and to keep him from running the video camera while driving the curvy mountain roads, I taped our drive through the park. Jim, as usual, narrated. I turned the camera on Jim and he began to talk about our plans for the day. “We’re having the time of our lives,” he said.
Tears welled up as I watched Jim on the video and was reminded of the man he was before we knew anything about dementia. He spoke in his quick-witted manner, relaxed, and happy in his beloved Colorado. The mountains worked their magic on him giving him an inner happiness and peace that he didn’t have in our normal world. I was beginning to think that watching these films was depressing and a really bad idea.
“We are going to the Big Horn Meadow,” Jim said. “I’m going to feed the chipmunks.” Jim was pretty good to follow all the rules and regulations in the park, but he had always fed the chipmunks.
“Why not? It’s only a $25 fine—per offence,” I said.
“We can afford $25,” he answered.
Jim’s bantering from more than twenty years ago chased away my tears, and I found myself laughing out loud. Somehow in my memories, I had forgotten Jim’s great sense of humor.
During one of our hikes, Jim had the camera, and he said, “I’ve dropped back to film because Linda doesn’t like for me to film her from behind. Ooops,” he said as the camera caught my rear view. He swung the camera aside and then back, “Ooops. And ooops.”
As we drove up Fall River Road next to a sheer drop off, Jim teasingly asked me if I wanted him to get closer to my side of the road so I could get a better picture. “Oh, no,” I said, “I’m fine.”
When the tape came to an end, I popped in a couple of tapes marked “Idaho” to see what they were. At least that’s what I told myself. One of them was a trip Jim took to Idaho without me. Jim shot footage of his cousin Joe in Idaho and in the next segment the camera zoomed in for a close-up of a McDonald’s sign. “Hey, honey, guess where I am! This is the only McDonald’s I ever liked to eat at.”
“Estes Park!” I said from my seat on the couch where I still held the remote in my hands.
“Estes Park!” he said…as if I wouldn’t immediately know.
There’s no danger that I will ever forget Jim as long as I’m breathing, but memories are limited. Most of the moments caught on film were buried so deep within my brain I would probably have never retrieved them. Watching the tapes are a way of reminding me of the wondrous moments I’ve lived, even if nostalgia makes me cry until happy memories make me laugh.
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