I turned the calendar this morning and found it hard to believe it is already August. Before this month is over, kids will be back in school, and we’ll all be wondering what happened to the summer and all the plans we made in the springtime.
When I was in elementary school, it seemed to me that summer lasted for a long time. The first day of school some kids had changed so much over the vacation we might not recognize them at first glance.
Now that we are adults, we don’t usually see drastic changes over three months’ time. It’s hard to notice a few more “laugh lines” or that the sun is glinting off more gray hair than the last time we saw someone. And unless you are in the educational field, you most likely see your co-workers nearly every day and don’t have much occasion to be shocked by a change that happened while you weren’t looking.
August is State Fair month. It is usually extremely hot or stormy. What is it about the State Fair that brings out the worst in the weather? Is it because all us wimps are used to air conditioning and suddenly find ourselves in the great outdoors—walking around on hot pavement—without any shade. What’s not to love about that?
It seems like time goes by faster than it ever did. Not only is summer almost gone, but with surprising speed we’ll be into 2011. Here we are ten years into the twenty-first century and I still sometimes want to put “19” in front of the year.
August was once a time of birthday celebrations. Jim would have been 65 years old later this month. He lost the battle with dementia more than five years ago—and never made it to his 60th birthday.
At one time, in my youth, I’m sure I thought anyone in his or her 60s was ancient. Now, it doesn’t seem old at all. I have three older siblings who are in their 60s, and I’m getting pretty darn close to it myself. I have a little time left, but as fast as time goes by, we’re going to have to call the fire department before anyone lights the candles.
Growing older is like anything else—there is good and bad. On the plus side, I think we older people don’t worry so much about what others think of us. We still like to look good, but we would rather have a few wrinkles than have a surgeon pull our faces into a plastic mask. Some of us wear our gray hairdos proudly, or else we just cover the gray with whatever dye suits our fancy. See a man with a bald spot and you’ll often see one that shaves it all off as if he had it planned all along. Another plus side to getting older—our eyesight begins to fail us and (guess what!) that makes everyone look better. We can’t see the flaws like we once could.
On the downside, we find we can’t always ignore some of the things we used to. Last night when I woke up with a heavy feeling in my chest, I debated whether it was from all the acidy tomatoes I had eaten, or whether I needed to call 911 to get emergency medical help. I look at myself in the mirror and think, I may not feel too old, but I am for sure old enough to have to consider a heart attack as something not too far out of the realm of possibilities.
Another down side—you may only pack on a pound or two a year, but we know what that means. The more candles on the cake, the more likely we are to be packing extra pounds around the old midsection. That in turn causes health problems—diabetes, high cholesterol and triglycerides, high blood pressure, and on and on and on. We wind up with problems in body parts that we didn’t even know we had. Thank goodness for Google and all the health networks available with all the symptoms, side effects, and health alerts that any aging computer savvy middle-age-going-on-senior might have.
Here it is already August—and the next thing you know it will be autumn. Probably in the next week or so Halloween decorations will be in the stores. Time passes by, we flip the calendars and wonder what happened to summer. It used to seem like it lasted so long and now it just flashes by with the speed of life.
Copyright © August 2010 L.S. Fisher
http://earlyonset@hotmail.com
Monday, August 2, 2010
Sunday, July 25, 2010
Something to Look Forward To
Life is more fun and exciting when we move through it with anticipation. It is easy to get into a rut or a funk when all you have to look forward to is drudgery.Jim was always the traveler in the family, and he was happiest when we had an upcoming trip. He would plan for months and pack weeks in advance. “I have to have something to look forward to,” he would always say.
Later, to make it through the caregiver years, I took Jim’s advice. I’ve kept up the habit of marking my calendar months in advance when I have an upcoming event or trip.
It doesn’t take a major event to give my spirits a makeover—I’ve learned to find joy in unexpected places. I spent last week in Minneapolis for a benefits conference which is held in three or four different locations throughout the year. Minneapolis isn’t the most popular location, but it is the one that worked out for my schedule. To sweeten the deal, my co-worker and I went online and found tickets to “A Streetcar Named Desire” at the Guthrie Theatre.
With the extensive traveling I’ve done throughout my lifetime, I had not once been in Minnesota. As the plane came in for a landing, the thing that caught my eye was all the lakes. It looked like every housing development was clustered around its own lake.
Our hotel was at the city center and Brenda, my co-worker, and I pulled our suitcases toward the exit with full confidence we could catch a taxi to the hotel. All the taxis were on the other side of the street behind a barricade. I had never seen a setup like that before. We found a policeman and asked him how to cross the street. If that doesn’t make you feel like a country cousin, nothing will. He called it “poor design” and we had to go back inside the building, down a level, cross under the street and then up a level to come out on the other side.
On the way to the hotel, Brenda asked the taxi driver where the Mall of America was located. “It’s the other side of the airport,” he told us. “It will cost you about $80 for a taxi from your hotel.”
How can you go to Minneapolis and not visit the iconic Mall of America? Isn’t that sort of un-American? Not to be deterred, we checked with the concierge, knowing that downtown hotels would not want to lose customers because it cost so much to get to the huge tourist attraction across town. Sure enough, he told us we could exit the hotel turn the corner, go two blocks and take the light rail to the Mall of America for $1.75. Much, much better than $80.
The best way to get to the Guthrie Theatre where the Tennessee Williams’ play was showing was on the light rail. We rode the street car known as Hiawatha to watch a “Street Car Named Desire.” The theatre was only two blocks from a Transit Station, and when the play let out at 10:45 p.m. we walked to the station. The trains passing by in the other direction were jammed with Twins fans who had boarded at Target Stadium. Before long, we hopped on and rode back to the hotel. Round trip equals $1, experience priceless.
We kept noticing a lot of young ladies wearing tiaras and beauty queen sashes. They were in town for the Queen of the Lakes competition and the Aquatennial Torchlight Parade. Before the parade, hundreds of runners participated in a 5k run. All this took place within a half-block of our hotel. I don’t recall ever seeing so many people run and the parade turned out to be the parade that never ended. Long after we were back in the hotel room we could still hear the pa-rum-pa-rum-pum of the high school bands.
As a bonus, the conference turned out to be one of the best I had ever attended. Interesting speakers updated us on all things benefit related.
While riding the light rail, we noticed all the people climbing on board with their suitcases to go to the airport. The train stopped at two different terminals, but a chart showed that we would get off at Lindberg to fly on Delta. Okay, we could take a taxi for $40, or ride the train for $1.75. It wasn’t a tough decision at all.
All in all, it was a great little break from everyday work. Having something to look forward to helps me wake up in the mornings and want to get out of bed. Having a good time and not breaking the bank, is a plus. Still, as much as I enjoyed it, a week was long enough and I woke up with a singing heart this morning because I’m at my favorite place—home.
copyright (c) July 2010 L.S. Fisher
http://earlyonset.blogspot.com
Monday, July 19, 2010
Comparing Apples to Pears
The Alzheimer’s Association sent a newsletter this week that says “pear” shaped women are at higher risk of developing Alzheimer’s than “apple” shaped women. This is the first health bulletin I recall that gives apple-shaped women, who carry excess weight around their waists, an advantage over pear-shaped ladies, who carry their weight on their hips and thighs.
I know most women would prefer to be slim and trim, but that becomes harder as we grow older. In fact, a recent obesity report says that slightly more than one-third of Americans are obese. Obesity in my home state of Missouri is 29.3 % and we weigh in at No. 12 in the state rankings.
If you don’t consider yourself to be obese, but merely overweight, you should check the guidelines. BMI (body mass index) is used to determine whether an adult is merely overweight or obese. If your index is in the 25-29.9 range, you are overweight. Anything over the magic 29.9 indicates obesity. If you don’t know your BMI, you can find free BMI calculators on the Web. One thing is obvious when I look at mine—I just need to be a couple of inches taller. Who would have ever thought my goal in life would be to have a BMI that falls into the “overweight” category.
I’ve been honest enough to rank myself with the apple shapes for many years. The extra weight around my middle makes it hard for me to tie my shoes and dang near impossible for me to polish my toenails. That is a major problem during the sandal-days of summer. The only thing I can say is that once I huff and puff until I get it done, the super-duper nail polish I buy stays in place for several weeks.
Finding my way around polishing my toenails doesn’t make me any healthier. Apple shapes have a greater risk of cardiovascular disease. The recommendation for both pear-shaped and apple-shaped women is, of course, to lose weight. Higher risks for any obesity-linked disease have to do with the type of fat stored in our bodies. Women who carry their weight on their behinds, hips and thighs store the kind of fat that increases their risk of Alzheimer’s. Cognitive tests show a relationship between the amount of fat and forgetfulness.
I have high cholesterol and triglycerides. My apple shape puts me at a higher risk for heart attack, diabetes, high blood pressure, and stroke. Holy cow, that should be enough to get me on a serious diet. It is easier to think of dieting right after my cholesterol and fat rich breakfast of bacon and eggs. I have been a bad, bad apple-shaped woman this morning. I don’t make a habit of eating such a breakfast, but there’s something about a Saturday morning that makes it irresistible. I’m usually in such a rush that I’m lucky to eat an English muffin or bagel. Skimping on breakfast goes against my upbringing.
I was raised to believe that a day should start with a good breakfast. Health and nutrition guides tout the importance of breakfast based on student test scores and adult productivity in the workplace. Any diet aficionado will tell you to eat your calories earlier in the day. I’m pretty sure most diets don’t recommend the kind of breakfast I ate this morning, but the general idea of taking time for breakfast is there.
The bottom line is that to reduce Alzheimer’s risk, pear-shaped women should lose weight. Don’t we all know that exercise and losing weight is part of a healthy lifestyle? I have a gym membership and, at least most of the time, opt for low calorie, no-sugar, omega rich foods, I lose probably fifty pounds a year, but it’s the same five pounds over and over.
Genetics determine our body shape, and we just need to do the best we can with our inheritance from our foremothers. Living a long life isn’t the only goal we have as intelligent human beings. We are stewards of our bodies and want to live happy, healthy, independent lives.
copyright July 2010 L. S. Fisher
http://earlyonset.blogspot.com
I know most women would prefer to be slim and trim, but that becomes harder as we grow older. In fact, a recent obesity report says that slightly more than one-third of Americans are obese. Obesity in my home state of Missouri is 29.3 % and we weigh in at No. 12 in the state rankings.
If you don’t consider yourself to be obese, but merely overweight, you should check the guidelines. BMI (body mass index) is used to determine whether an adult is merely overweight or obese. If your index is in the 25-29.9 range, you are overweight. Anything over the magic 29.9 indicates obesity. If you don’t know your BMI, you can find free BMI calculators on the Web. One thing is obvious when I look at mine—I just need to be a couple of inches taller. Who would have ever thought my goal in life would be to have a BMI that falls into the “overweight” category.
I’ve been honest enough to rank myself with the apple shapes for many years. The extra weight around my middle makes it hard for me to tie my shoes and dang near impossible for me to polish my toenails. That is a major problem during the sandal-days of summer. The only thing I can say is that once I huff and puff until I get it done, the super-duper nail polish I buy stays in place for several weeks.
Finding my way around polishing my toenails doesn’t make me any healthier. Apple shapes have a greater risk of cardiovascular disease. The recommendation for both pear-shaped and apple-shaped women is, of course, to lose weight. Higher risks for any obesity-linked disease have to do with the type of fat stored in our bodies. Women who carry their weight on their behinds, hips and thighs store the kind of fat that increases their risk of Alzheimer’s. Cognitive tests show a relationship between the amount of fat and forgetfulness.
I have high cholesterol and triglycerides. My apple shape puts me at a higher risk for heart attack, diabetes, high blood pressure, and stroke. Holy cow, that should be enough to get me on a serious diet. It is easier to think of dieting right after my cholesterol and fat rich breakfast of bacon and eggs. I have been a bad, bad apple-shaped woman this morning. I don’t make a habit of eating such a breakfast, but there’s something about a Saturday morning that makes it irresistible. I’m usually in such a rush that I’m lucky to eat an English muffin or bagel. Skimping on breakfast goes against my upbringing.
I was raised to believe that a day should start with a good breakfast. Health and nutrition guides tout the importance of breakfast based on student test scores and adult productivity in the workplace. Any diet aficionado will tell you to eat your calories earlier in the day. I’m pretty sure most diets don’t recommend the kind of breakfast I ate this morning, but the general idea of taking time for breakfast is there.
The bottom line is that to reduce Alzheimer’s risk, pear-shaped women should lose weight. Don’t we all know that exercise and losing weight is part of a healthy lifestyle? I have a gym membership and, at least most of the time, opt for low calorie, no-sugar, omega rich foods, I lose probably fifty pounds a year, but it’s the same five pounds over and over.
Genetics determine our body shape, and we just need to do the best we can with our inheritance from our foremothers. Living a long life isn’t the only goal we have as intelligent human beings. We are stewards of our bodies and want to live happy, healthy, independent lives.
copyright July 2010 L. S. Fisher
http://earlyonset.blogspot.com
Sunday, July 11, 2010
States Plan for Alzheimer’s
Alzheimer’s Advocates throughout the United States have worked with their home states to develop a plan to prepare for the silver tsunami made up of aging baby boomers. So far twelve states have completed their plans. Another eighteen states, including Missouri, are developing plans.
In addition to the expected elected officials and aging professionals, the nineteen member Missouri Task Force includes a person with memory loss and a caregiver. Community Forums were held throughout the state to address the challenges of families facing Alzheimer’s disease.
The 110,000 Missourians who have Alzheimer’s disease are cared for by 180,000 unpaid caregivers who provide 156 million hours of unpaid care. Most caregivers want to care for their loved one at home as long as possible. With the necessary support and services in place, this army of dedicated unpaid caregivers can save the state $1.7 billion.
The Missouri Community Forums helped the Task Force pinpoint the areas that needed attention. The concerns family members voiced at the Alzheimer’s Association Mid-Missouri Chapter’s forum were:
1. Access to early and accurate diagnosis by doctors and health care professionals.
2. Availability of affordable home health and respite care to keep loved ones at home longer.
3. Investment from the state of Missouri for Alzheimer’s research.
This short list of goals is reasonable, and any caregiver can attest to their validity. Early diagnosis is important. If dementia-like symptoms are caused by a treatable condition, it is important to take proper measures to address the underlying problem. If the diagnosis is Alzheimer’s, a proper treatment regimen can be started when it does the most good. Early diagnosis helps the family plan for the future.
Affordable home health and respite are basic needs when a loved one is cared for in the home. One person cannot be awake and alert twenty-four hours a day, seven days a week. Providing care for a person with Alzheimer’s is a huge undertaking! Not only do states need a plan, individuals need one to prevent burnout and illness. A care plan designed to provide relief for the primary caregiver with home health support and occasional respite care will keep people in the comfort of their own homes longer.
The state of Missouri annually spends $100 million in Medicaid for dementia long term care. By investing in Alzheimer’s Service Grants to support families caring for their loved ones at home, the state could save millions in Medicaid dollars.
The Missouri Alzheimer’s State Plan will be delivered to the governor in November as part of Alzheimer’s Awareness Month. It is a fiscal responsibility of our elected officials to tap into this valuable resource of dedicated caregivers.
Copyright © July 2010, L. S. Fisher
http://earlyonset.blogspot.com
To see which states have plans:
http://www.alz.org/national/documents/StatePlanMap.pdf
In addition to the expected elected officials and aging professionals, the nineteen member Missouri Task Force includes a person with memory loss and a caregiver. Community Forums were held throughout the state to address the challenges of families facing Alzheimer’s disease.
The 110,000 Missourians who have Alzheimer’s disease are cared for by 180,000 unpaid caregivers who provide 156 million hours of unpaid care. Most caregivers want to care for their loved one at home as long as possible. With the necessary support and services in place, this army of dedicated unpaid caregivers can save the state $1.7 billion.
The Missouri Community Forums helped the Task Force pinpoint the areas that needed attention. The concerns family members voiced at the Alzheimer’s Association Mid-Missouri Chapter’s forum were:
1. Access to early and accurate diagnosis by doctors and health care professionals.
2. Availability of affordable home health and respite care to keep loved ones at home longer.
3. Investment from the state of Missouri for Alzheimer’s research.
This short list of goals is reasonable, and any caregiver can attest to their validity. Early diagnosis is important. If dementia-like symptoms are caused by a treatable condition, it is important to take proper measures to address the underlying problem. If the diagnosis is Alzheimer’s, a proper treatment regimen can be started when it does the most good. Early diagnosis helps the family plan for the future.
Affordable home health and respite are basic needs when a loved one is cared for in the home. One person cannot be awake and alert twenty-four hours a day, seven days a week. Providing care for a person with Alzheimer’s is a huge undertaking! Not only do states need a plan, individuals need one to prevent burnout and illness. A care plan designed to provide relief for the primary caregiver with home health support and occasional respite care will keep people in the comfort of their own homes longer.
The state of Missouri annually spends $100 million in Medicaid for dementia long term care. By investing in Alzheimer’s Service Grants to support families caring for their loved ones at home, the state could save millions in Medicaid dollars.
The Missouri Alzheimer’s State Plan will be delivered to the governor in November as part of Alzheimer’s Awareness Month. It is a fiscal responsibility of our elected officials to tap into this valuable resource of dedicated caregivers.
Copyright © July 2010, L. S. Fisher
http://earlyonset.blogspot.com
To see which states have plans:
http://www.alz.org/national/documents/StatePlanMap.pdf
Monday, July 5, 2010
What Do You Like Best About Independence Day?
Ask most people their favorite part of Independence Day, and their automatic response would be “The fireworks.” What’s not to love about exploding patterns of brilliant color and the thunderous booms of deluxe pyrotechnical wonders?
The fireworks displays are not my favorite part of the holiday, perhaps because as a Vietnam Veteran, Jim had serious problems dealing with the warlike sounds. Have you ever thought about how hard it is to make it through the 4th of July without being exposed to fireworks? It’s really unavoidable.
As dementia began to affect his reasoning, Jim regressed to the time of war and the posttraumatic stress that went with it. He called me at work one day. “Those boys! Those mean boys!” I couldn’t get him to tell me what had happened. I was afraid he had hit one of them with the car. I came home to see what had upset him so much, and he finally stopped shaking long enough to tell me the neighbor boys had set off some firecrackers as he drove by.
So after years of avoiding fireworks, I’ve watched the fireworks display at Truman Lake for the past two years. J.B. and Wanda have their house festively decorated and the food is fantastic. The breeze and cooler temperatures this year were perfect for sitting on the back patio visiting with them and my son and daughter-in-law.
More important than the fireworks and food is spending time with friends and family. My sixteen-year-old grandson lit the fireworks in the yard. Between choosing and lighting the fireworks, he checked his cell phone for text messages. My twelve-year-old granddaughter and I made arrangements to go see the latest vampire movie. My grandchildren are growing up so fast that I chide myself for being so involved in work and writing projects that I don’t spend enough time with them.
While I was at the lake, my youngest son and his family drove to my house to watch fireworks at Julie’s backyard celebration. It doesn’t seem that long ago that when Rob and Julie’s brother wanted to go, Julie always asked, “Can I go with?”
After an evening spent with friends, Rob and his family planned to leave early for their Colorado vacation. They were asleep by the time I got home, but my seven-year-old granddaughter met me at the door with a hug. She always sleeps with me, and had told her mom and dad she was waiting up for “Grandma Linda.” I tucked her in and she was fast asleep by the time I was ready for bed.
The next morning, she cuddled up next to me while I drank my coffee and opened the “Why?” book. I read the questions, and she read the answers. While she read about molecules, my youngest grandson brought his play golf game into the living room to practice his swing. You would have thought he made a hole in one when he hit the ball over his dad’s head and into the space between the couch and wall. Then he found a handheld bowling game and wanted his dad to make it work.
“The batteries must be dead,” Rob said. Pretty soon, the game was up and running.
“You must have figured it out,” I said. Rob told me he hadn’t figured it out at all. I guess you can’t expect a grownup to compete with an almost three-year-old.
Spending time with family was always Jim’s favorite activity. If he had never had dementia, I bet he would have tolerated, perhaps enjoyed, watching the brilliant aerial kaleidoscopes while surrounded by loved ones. It is for certain he would have been a proud dad and grandpa if he could see his family now. Jim would have savored every moment and have recognized the thunderous sounds to be a national celebration of independence and known that he had done his part to keep America free.
copyright (c) July 2010 L.S. Fisher
http://earlyonset.blogspot.com
The fireworks displays are not my favorite part of the holiday, perhaps because as a Vietnam Veteran, Jim had serious problems dealing with the warlike sounds. Have you ever thought about how hard it is to make it through the 4th of July without being exposed to fireworks? It’s really unavoidable.
As dementia began to affect his reasoning, Jim regressed to the time of war and the posttraumatic stress that went with it. He called me at work one day. “Those boys! Those mean boys!” I couldn’t get him to tell me what had happened. I was afraid he had hit one of them with the car. I came home to see what had upset him so much, and he finally stopped shaking long enough to tell me the neighbor boys had set off some firecrackers as he drove by.
So after years of avoiding fireworks, I’ve watched the fireworks display at Truman Lake for the past two years. J.B. and Wanda have their house festively decorated and the food is fantastic. The breeze and cooler temperatures this year were perfect for sitting on the back patio visiting with them and my son and daughter-in-law.
More important than the fireworks and food is spending time with friends and family. My sixteen-year-old grandson lit the fireworks in the yard. Between choosing and lighting the fireworks, he checked his cell phone for text messages. My twelve-year-old granddaughter and I made arrangements to go see the latest vampire movie. My grandchildren are growing up so fast that I chide myself for being so involved in work and writing projects that I don’t spend enough time with them.
While I was at the lake, my youngest son and his family drove to my house to watch fireworks at Julie’s backyard celebration. It doesn’t seem that long ago that when Rob and Julie’s brother wanted to go, Julie always asked, “Can I go with?”
After an evening spent with friends, Rob and his family planned to leave early for their Colorado vacation. They were asleep by the time I got home, but my seven-year-old granddaughter met me at the door with a hug. She always sleeps with me, and had told her mom and dad she was waiting up for “Grandma Linda.” I tucked her in and she was fast asleep by the time I was ready for bed.
The next morning, she cuddled up next to me while I drank my coffee and opened the “Why?” book. I read the questions, and she read the answers. While she read about molecules, my youngest grandson brought his play golf game into the living room to practice his swing. You would have thought he made a hole in one when he hit the ball over his dad’s head and into the space between the couch and wall. Then he found a handheld bowling game and wanted his dad to make it work.
“The batteries must be dead,” Rob said. Pretty soon, the game was up and running.
“You must have figured it out,” I said. Rob told me he hadn’t figured it out at all. I guess you can’t expect a grownup to compete with an almost three-year-old.
Spending time with family was always Jim’s favorite activity. If he had never had dementia, I bet he would have tolerated, perhaps enjoyed, watching the brilliant aerial kaleidoscopes while surrounded by loved ones. It is for certain he would have been a proud dad and grandpa if he could see his family now. Jim would have savored every moment and have recognized the thunderous sounds to be a national celebration of independence and known that he had done his part to keep America free.
copyright (c) July 2010 L.S. Fisher
http://earlyonset.blogspot.com
Saturday, June 26, 2010
Eye to Eye Communication
All eyes were on fathers last Sunday as we celebrated Fathers Day. During Sunday worship which naturally focused on fathers, our pastor talked about what a great father his son is to Lake. When Lake misbehaves, his dad gets on eye level to talk to him. That eye-to-eye contact is key to dealing with inappropriate behavior.
Communication is a problem in any relationship, and can become a major challenge when your loved one has dementia. To keep the lines of communication open, you can develop a strategy to focus on the feelings and not the words.
Jim sometimes said just the opposite of what he meant. If he said, “It’s cold in here!” and he was sweating, I knew he meant “hot.” As the disease progressed, and aphasia silenced Jim, I learned to read his body language and facial expressions to communicate with him. If he cried, I didn’t assume he was sad, I knew he might be hurting.
Some strategies to help keep the lines of communication open with your loved one:
One night at the nursing home, I observed a perfect example of how a visitor helped calm a resident by validating his concerns.
The resident, Frank, fidgeted and his brow was wrinkled with worry. He wore his heavy winter coat and paced the hallway. “I need to find a way out of here,” he said. “I have to tend to my cows and put the horses up.”
A man who was leaving after a visit with another resident passed Frank in the hallway and apparently knew what worried Frank and made him restless in the evenings. He stopped and made eye contact with Frank, and patted Frank on the arm as he spoke, “Frank, I’m going to go by your house and feed your cattle and put the horses in the barn.”
Frank turned and headed back to his room. Relief made his walk lighter. “Whew!” he said, “I’m sure glad that is taken care of.”
Just like the father who used eye level communication to get his point across, you show respect by giving the conversation your full attention. You are not talking down to your loved one, but have opened up a line of communication that goes beyond words.
Copyright(c) June 2010 L.S. Fisher
http://earlyonset.blogspot.com
Thursday, June 24, 2010
Alzheimer's Reading Room: What is it like being an Alzheimer's caregiver? Unconditional Love
I submitted an article to Alzheimer's Reading Room about my caregiving experience. The Reading Room is an excellent source of information about Alzheimer's and includes everything from research information to personal stories like mine. Kudos to Bob DeMarco for maintaining and constantly updating this excellent site!
Alzheimer's Reading Room: What is it like being an Alzheimer's caregiver? Unconditional Love
Alzheimer's Reading Room: What is it like being an Alzheimer's caregiver? Unconditional Love
Monday, June 21, 2010
ICARA Global Phase III Study
ICARA (Investigational Clinical Amyloid Research in Alzheimer’s) is conducting a global study on a drug called bapineuzumab which may slow the progression of Alzheimer’s. Trials will be conducted in more than 20 countries, including the United States.
Unlike many studies which exclude those with early onset Alzheimer’s, eligibility for the Bapi study starts at age 50. An online prescreening questionnaire is available to help you determine if you, or your family member, meet the other requirements for the study.
Whether you enter into a drug study has a lot to do with your personality. They are not for everyone. It may be ideal for you if you are the type of person who understands the study drug may not help you, and could cause undetermined side effects.
When Jim was in the early stages of Alzheimer’s we made the decision to enter him in a Phase III drug study. My sons helped me make the decision, because Jim had trouble communicating and I wasn’t sure that he understood the possibilities or the downside. They both agreed that since all the drugs available only treated symptoms, their dad would not want to bypass a chance to participate. As the primary caregiver I felt it was my responsibility to vet how a drug study works.
The upside to a drug study is you have the support of a medical team, laboratory services and testing without any cost. For those who are struggling with the costs of testing or expensive treatments, this is a big incentive.
Through the drug study Jim participated in, we found a neurologist who was considered the top in his field. Jim was given thorough exams, an MRI, and other tests without any charge to us or our insurance company. Jim developed side effects—mostly stomach distress—and had to discontinue the study. We kept the same neurologist who monitored Jim throughout the progression of his dementia. Even after Jim’s death, the neurologist read the brain autopsy report to let me know that Jim had corticobasal degeneration and not Alzheimer’s.
Many people participate in drug trials not particularly for their own benefit, but to be a part of the investigative process to help people who have not yet developed the disease. Effective treatment for Alzheimer’s is the key to preventing a national crisis as the baby boomers age.
The study drug, bapineuzumab, is not a cure for Alzheimer’s, but slowing the progression of the disease can ease the emotional and financial burden of Alzheimer’s. What are some of the benefits from slowing the progression of Alzheimer’s?
• People would remain in the mild stages longer.
• People with dementia could remain in their home longer before requiring long term care.
• Fewer people would be in the severe stages.
In the early stages, our greatest hope was to stop whatever was affecting Jim’s cognitive ability. As we worked through eliminating other treatable disorders, we often said, “If he doesn’t get any worse, we can deal with this.” Jim had changed, but he could still play his guitar, enjoy his grandchildren, and could have continued on with a productive, happy life.
When the world was faced with an AIDS crisis, research made it possible for some people to live with HIV and never develop AIDS. Why is it beyond the realm of possibility that a drug may someday be available to slow the progression of Alzheimer’s so that our loved ones would never move into the late stages of Alzheimer’s? This drug does not promise to be a cure, but it is a step in the right direction.
Call 1-888-770-6366 or visit www.icarastudy.com for more information about the ICARA study.
copyright(c)June 2010 L.S. Fisher
http://earlyonset.blogspot.com
Unlike many studies which exclude those with early onset Alzheimer’s, eligibility for the Bapi study starts at age 50. An online prescreening questionnaire is available to help you determine if you, or your family member, meet the other requirements for the study.
Whether you enter into a drug study has a lot to do with your personality. They are not for everyone. It may be ideal for you if you are the type of person who understands the study drug may not help you, and could cause undetermined side effects.
When Jim was in the early stages of Alzheimer’s we made the decision to enter him in a Phase III drug study. My sons helped me make the decision, because Jim had trouble communicating and I wasn’t sure that he understood the possibilities or the downside. They both agreed that since all the drugs available only treated symptoms, their dad would not want to bypass a chance to participate. As the primary caregiver I felt it was my responsibility to vet how a drug study works.
The upside to a drug study is you have the support of a medical team, laboratory services and testing without any cost. For those who are struggling with the costs of testing or expensive treatments, this is a big incentive.
Through the drug study Jim participated in, we found a neurologist who was considered the top in his field. Jim was given thorough exams, an MRI, and other tests without any charge to us or our insurance company. Jim developed side effects—mostly stomach distress—and had to discontinue the study. We kept the same neurologist who monitored Jim throughout the progression of his dementia. Even after Jim’s death, the neurologist read the brain autopsy report to let me know that Jim had corticobasal degeneration and not Alzheimer’s.
Many people participate in drug trials not particularly for their own benefit, but to be a part of the investigative process to help people who have not yet developed the disease. Effective treatment for Alzheimer’s is the key to preventing a national crisis as the baby boomers age.
The study drug, bapineuzumab, is not a cure for Alzheimer’s, but slowing the progression of the disease can ease the emotional and financial burden of Alzheimer’s. What are some of the benefits from slowing the progression of Alzheimer’s?
• People would remain in the mild stages longer.
• People with dementia could remain in their home longer before requiring long term care.
• Fewer people would be in the severe stages.
In the early stages, our greatest hope was to stop whatever was affecting Jim’s cognitive ability. As we worked through eliminating other treatable disorders, we often said, “If he doesn’t get any worse, we can deal with this.” Jim had changed, but he could still play his guitar, enjoy his grandchildren, and could have continued on with a productive, happy life.
When the world was faced with an AIDS crisis, research made it possible for some people to live with HIV and never develop AIDS. Why is it beyond the realm of possibility that a drug may someday be available to slow the progression of Alzheimer’s so that our loved ones would never move into the late stages of Alzheimer’s? This drug does not promise to be a cure, but it is a step in the right direction.
Call 1-888-770-6366 or visit www.icarastudy.com for more information about the ICARA study.
copyright(c)June 2010 L.S. Fisher
http://earlyonset.blogspot.com
Saturday, June 12, 2010
Let’s Cream Alzheimer’s
It’s hard to believe that our “Let’s Cream Alzheimer’s” Ice Cream Social and Balderdash Championship is only a week away. We don’t expect to make a lot of money at the social; in fact, we are relying on free will donations. What we hope to do is raise awareness of Alzheimer’s and our Memory Walk, and have fun, of course.The ice cream social is a new idea and a learning experience for us and has been somewhat of a challenge because our Memory Walk committee is so small. We will be depending a lot on our friends at Fairview, relatives, and the youth group at church. Never having had a social before, we aren’t sure how much ice cream we’ll need. We don’t know if people will show up. Will we have enough Balderdash players?
The problem with a disease like Alzheimer’s is caregivers are often too tied down taking care of their loved ones to participate in fundraisers. A caregiver can be worn slick from having to make a lot of hard decisions. Those that have been through the gamut of caring for and losing a loved one to Alzheimer’s often want to put the past behind them. I can’t blame them for trying to get their lives back on an even keel.
Alzheimer’s is not a glamorous disease, and often one that people try to hide from the world. The person with dementia does not want to be treated like a child, and families may be embarrassed by their loved one’s behavior.
Too often caregivers don’t realize how much they can benefit from Alzheimer’s Association employees and volunteers. A speaker at one of our support group meetings helped me deal with Jim’s quirkiness. The speaker said to gauge behavior by asking yourself, “So what?” If the problem isn’t endangering anyone, “So what?”
His practical advice helped me through some sticky situations. One day Jim’s mom called to tell me he was out in the yard naked and wouldn’t come inside. She couldn’t get him to put his clothes back on. She was so distressed.
“I’ll be right home,” I assured her. “He probably had a reason for taking his clothes off. He’s either too hot, or he’s had an accident.”
“But he’s out in the yard without any clothes on.”
“Don’t worry about it,” I said. We lived in the country on a gravel road without much traffic. “So what if someone comes by? If they don’t want to see a naked man, they can keep their eyes on the road. After all, he’s is our yard.”
Recently, I saw a letter on a health Website written by a woman whose husband had Alzheimer’s. She was so embarrassed by her husband’s behavior that she didn’t want to take him out in public. She felt like people were staring at them. My comment was, “Jim didn’t notice people staring, and I got to the point where I didn’t care.”
We continued to go places that Jim enjoyed and didn’t worry about what others might think. I always considered Penny Braun, former executive director of the Mid-Missouri Chapter, to be my mentor about Alzheimer’s. Penny always said, “Ice cream solves a lot of problems.”
Following the advice of a wise lady, I took Jim to Dairy Queen almost daily.
A few days ago, I was looking for a specific picture of Jim. Digging through the boxes of pictures I don’t have in albums yet, I came across pictures of Jim in all stages of the disease. It tugged at my heart to see him in the early stages when he wore his cowboy hat, boots, and 501 Levis. He and his brother sat on the patio playing guitars together. I remember that day—Jim was having trouble finding the right chords to play. Jim, the master guitarist missing a simple chord change and forgetting the lyrics to songs he had sung for years.
Yes, those days are behind me now, but I believe those of us who have finished our journeys should help those who are still traveling. I hope we “cream” Alzheimer’s in my lifetime. All I know is that we can’t give up on finding a cure.
If some of us don’t step out of our comfort zone and put effort into bringing Alzheimer’s to the forefront, millions of Americans will always struggle with the daily challenges of caregiving and the heartache of a cruel and debilitating disease. We need to put the research spotlight on the challenge to end Alzheimer’s.
“Let’s Cream Alzheimer’s” is a good way to join a mission statement and a fun event. So if you are in Sedalia on June 19, join us 7 PM at the Celebration Center while we “cream” Alzheimer’s. It’s a time to relax and enjoy. The hardest decision you will need to make is “two scoops, or one?”
Copyright (c) June 2010 L. S. Fisher
http://earlyonset.blogspot.com/
http://boomerobics.blogspot.com/
Sunday, June 6, 2010
Remembering Furry Friends
Between Memorial Day and writing two stories about pets to submit to Chicken Soup for the Soul, I’ve found myself thinking a lot about special pets our family has had over the years. This was further reinforced by seeing two families giving away pets in Wal-Mart’s parking lot today.
I couldn’t help but think about the time we did that. Lacy was a stray dog came to live at our house. She promptly delivered a litter of puppies and then got hit by a car. We had six puppies to hand feed. I named one little long-haired puppy Ragamuffin, and figured I might as well get used to her because I didn’t think we could give her away. Today, I was trying to remember the names of all the puppies, and was a little surprised that I couldn’t. I remembered the long-haired male was Jiffy. Two little puppies looked so much alike we named them Eppie and Popo. I’m blank on the other names.
I remember when we took them to the parking lot a family came over and their little boy started manhandling the puppies. I cringed inside and worried about the puppy when the boy walked off clutching him around his middle.
Ragamuffin was shortened to Muffin, a name that suited the loving sweet-natured dog. She was a member of our household for several years until she disappeared one Thanksgiving Day. I was heartbroken and swore I would never let myself get that close to a dog again.
Jim and I were lying in bed reading on a cold February night when Eric announced he had adopted a puppy at the pound and had named him Tuffy. Jim was really upset with him and said, “Take that dog back!” Eric showed the puppy to his dad, but Jim said, “I’m not holding it!”
Eric picked up the dog and was gone for a while. When he came back, Jim said, “What did you do with the puppy.”
“I dumped him,” Eric said.
Jim jumped out of bed and started getting dressed. “We have to go find him! He’ll freeze to death!”
“I’ll go get him,” Eric said. “He’s out in the garage.”
“You go get him right now,” Jim said, “and bring him here.”
Well, Jim held “Tuffy” and decided his name had to be Bubba. Along with renaming the dog, he staked a claim as owner. Eventually, Eric gave him the dog.
When Jim went on vacation to visit his family in Idaho, he called every night checking on us, but mostly checking on Bubba. His cousin told me, “I could understand Jim being homesick for you and the kids, but he’s coming home early because he misses his dog!”
Jim and Bubba were inseparable. Even after Jim was in the nursing home, I could mention Bubba and a sparkle lit up Jim’s eyes. “I took Bubba to the vet today,” I told Jim one night at the while I fed him. Jim had become silent, but his eyes shifted away from the TV and toward me. “You know what the vet told me? He said Bubba needed to go on a diet.” Jim smiled slightly. The vet had been telling us for years that Bubba was too fat. Well, he did weigh 90 pounds, but he was really big boned and had ten pounds of fur we had sheared off in the summertime.
“You know what I told him?” I asked Jim. He gave me a look that showed he was really listening to the story. After all, I was talking about Bubba, his best furry friend. “I told the vet ‘Bubba is twelve years old. He is fat, has always been fat, and always will be fat. I’m not about to put him on a diet now!’” Jim laughed. Yep, that was the way it was with Bubba. He had never gone hungry and there was no need to try it in his old age.
Bubba died while Jim was in the nursing home. I talked about Bubba from time to time and never indicated that he was gone. In Jim’s heart, his dog Bubba was always happy enough to wag his whole body, just like always.
It is hard to lose a pet, and sometimes you don’t think you ever want to go through the heartbreak again. But when you don’t take that chance, you miss out on so much. Jim thought he didn’t want another dog, but dementia couldn’t erase the spot in his heart reserved for Bubba.
Copyright © June 2010 L. S. Fisher
http://earlyonset.blogspot.com/
I couldn’t help but think about the time we did that. Lacy was a stray dog came to live at our house. She promptly delivered a litter of puppies and then got hit by a car. We had six puppies to hand feed. I named one little long-haired puppy Ragamuffin, and figured I might as well get used to her because I didn’t think we could give her away. Today, I was trying to remember the names of all the puppies, and was a little surprised that I couldn’t. I remembered the long-haired male was Jiffy. Two little puppies looked so much alike we named them Eppie and Popo. I’m blank on the other names.
I remember when we took them to the parking lot a family came over and their little boy started manhandling the puppies. I cringed inside and worried about the puppy when the boy walked off clutching him around his middle.
Ragamuffin was shortened to Muffin, a name that suited the loving sweet-natured dog. She was a member of our household for several years until she disappeared one Thanksgiving Day. I was heartbroken and swore I would never let myself get that close to a dog again.
Jim and I were lying in bed reading on a cold February night when Eric announced he had adopted a puppy at the pound and had named him Tuffy. Jim was really upset with him and said, “Take that dog back!” Eric showed the puppy to his dad, but Jim said, “I’m not holding it!”
Eric picked up the dog and was gone for a while. When he came back, Jim said, “What did you do with the puppy.”
“I dumped him,” Eric said.
Jim jumped out of bed and started getting dressed. “We have to go find him! He’ll freeze to death!”
“I’ll go get him,” Eric said. “He’s out in the garage.”
“You go get him right now,” Jim said, “and bring him here.”
Well, Jim held “Tuffy” and decided his name had to be Bubba. Along with renaming the dog, he staked a claim as owner. Eventually, Eric gave him the dog.
When Jim went on vacation to visit his family in Idaho, he called every night checking on us, but mostly checking on Bubba. His cousin told me, “I could understand Jim being homesick for you and the kids, but he’s coming home early because he misses his dog!”
Jim and Bubba were inseparable. Even after Jim was in the nursing home, I could mention Bubba and a sparkle lit up Jim’s eyes. “I took Bubba to the vet today,” I told Jim one night at the while I fed him. Jim had become silent, but his eyes shifted away from the TV and toward me. “You know what the vet told me? He said Bubba needed to go on a diet.” Jim smiled slightly. The vet had been telling us for years that Bubba was too fat. Well, he did weigh 90 pounds, but he was really big boned and had ten pounds of fur we had sheared off in the summertime.
“You know what I told him?” I asked Jim. He gave me a look that showed he was really listening to the story. After all, I was talking about Bubba, his best furry friend. “I told the vet ‘Bubba is twelve years old. He is fat, has always been fat, and always will be fat. I’m not about to put him on a diet now!’” Jim laughed. Yep, that was the way it was with Bubba. He had never gone hungry and there was no need to try it in his old age.
Bubba died while Jim was in the nursing home. I talked about Bubba from time to time and never indicated that he was gone. In Jim’s heart, his dog Bubba was always happy enough to wag his whole body, just like always.
It is hard to lose a pet, and sometimes you don’t think you ever want to go through the heartbreak again. But when you don’t take that chance, you miss out on so much. Jim thought he didn’t want another dog, but dementia couldn’t erase the spot in his heart reserved for Bubba.
Copyright © June 2010 L. S. Fisher
http://earlyonset.blogspot.com/
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