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.
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