When Jim was first diagnosed with dementia of the Alzheimer’s type, I knew nothing about the disease. One day shortly after Jim’s diagnosis, I watched an HBO special on Early Onset Alzheimer’s. The show followed a brother and sister with the genetic form of Alzheimer’s. The sister was in the end stages, and the brother was beginning to need help dressing himself. I remember the gnawing feeling in the pit of my stomach when his wife fastened his belt. As the sister lay dying, the younger generation, a boy and girl in their teens, talked about their fifty-fifty chance of developing early onset Alzheimer’s. That show was a crash course on the relentless disease and how it affects the entire family.
With families of 5.3 million Americans traveling the Alzheimer’s journey, HBO has developed a documentary called “The Alzheimer’s Project.” HBO opened their airways to non-subscribers to make this program available to the general public. Anyone with Internet access can watch the programs on the Alzheimer’s Association website at http://www.alz.org/.
Many reviews have been written about “The Alzheimer’s Project” and this is not going to be one of them. I’m only going to talk about my reaction to the series.
I did well on Part I, “The Memory Loss Tapes,” until the death scene. Too many things about that scene brought back the emotional tumult of Jim’s death. As I watched the family’s faces, I remembered the inner struggle to face the reality of our journey’s end.
My first reaction was HBO should not have shown that scene. My friend, Ted, whose wife is in the final stages of the disease called me to make sure I knew about the series. He said, “They are telling it like it is.” I had to admit he was correct.
I imagine not everyone at HBO was in agreement about showing the death scene. I had the same internal struggle about including the final story in Alzheimer’s Anthology of Unconditional Love. I was afraid “The Aftermath” would be too depressing, but something compelled me to share Jim’s death and my reaction. Caregivers and people with Alzheimer’s have enough to deal with to make it through the day-in-day-out struggle with dementia. Did I want to let them know that the death of their loved one is the final insult? That was the moment I realized that no matter how much I had done, the disease won.
Part II, “Grandpa Do You Know Who I Am” shows how young people see the disease. I think about how my grandchildren never knew what Jim was like before dementia. Their image, like some of the children in the film, is of a different person whose brain has been destroyed by disease.
The “Caregivers” is helpful with its real live experiences, and we plan on showing this film at our support group. Knowledge is power and the more we know about the disease, the better caregivers we are. Jim had aphasia early in the disease and wasn’t able to tell me what he was thinking or how he felt. I was blessed by becoming friends with people with Alzheimer’s who retained their communication skills. I learned so much about how a person with Alzheimer’s feels from my friends with the disease. I truly appreciate their insights, fears, and hopes.
“Momentum in Science,” both parts, assures me that progress is being made toward diagnosing and understanding Alzheimer’s affect on the brain. One of the researchers featured in the film, Randy Bateman, MD, from Washington University, accompanied our Missouri Delegation on legislative visits at the Public Policy Forum in 2008. I was impressed with his down-to-earth manner.
The early HBO series helped me understand Alzheimer’s, but the Alzheimer’s Project has a much wider scope with its marriage of personal stories and the hope of scientific breakthrough. Unless science moves forward and finds a cure for Alzheimer’s and related dementias, death is the conclusion of the disease. I look forward to the day when we have Alzheimer's survivors walk a victory lap at Memory Walk. Until then, the only survivors of Alzheimer’s are the caregivers and families.
Sunday, May 31, 2009
Saturday, May 23, 2009
Honor our Everyday Heroes
Memorial Day is a time to pause and think about heroes and to honor those who have died in our nation’s wars. At least, that was the original purpose.
It stands to reason that we would use the day to also honor other loved ones. My Grandma Whittle called the holiday “Decoration Day.” She and Grandpa loaded up a picnic lunch and went to Big Rock Cemetery to decorate graves.
After Jim and I married, we made our annual pilgrimage to the cemeteries where our loved ones were buried. Sometimes it was a strain on our budget to buy the flowers to decorate the graves, but it brought a sense of peace as we continued the traditions of our youth.
Our first stop was always Mt. Carmel. From there we went to Big Rock Cemetery, stopped at Stover Cemetery, and then drove back to Sedalia to decorate graves at Crown Hill. We made a complete circle and headed home with a heart full of memories.
When Jim first developed dementia, I drove our usual route while Jim placed the flowers on the graves. When Jim went in the nursing home, I went alone. Decorating graves without him was not an experience I cared to repeat.
Memorial Day 2005 was the first time I participated in the ceremony at the Missouri Veterans Cemetery at Higginsville. I haven’t missed a year since Jim’s death.
I was a little bummed about a conflict this year. My granddaughter is graduating kindergarten Sunday. My youngest son’s family lives in the Lake of the Ozarks area, the opposite direction from the cemetery. I told my older son, Eric, that I was going to the graduation. “I’ll miss the Memorial Day ceremony,” I told him.
I was disappointed, but I know Jim would have never chosen a ceremony for the dead over one for the living. He often wondered aloud what good it did to make someone a hero after they died. Jim always said, “Dying doesn’t automatically make you a hero.” Instead, he would tell our sons when they were small, “You are my hero.”
Jim never considered himself to be a hero. He was tightlipped when it came to Vietnam, and I never knew Jim had received an Army Commendation Medal until he could no longer tell me why he received the award. The commendation was nowhere to be found, and the Army couldn’t produce it when I asked.
“Why would you miss the ceremony when the graduation is Sunday and Memorial Day is Monday?” Eric asked.
“I don’t know why I thought Memorial Day was Sunday,” I said. “After all, it’s always been Monday.”
On Memorial Day, I’ll drive to Higginsville cemetery to place flowers in front of Jim’s niche. I’ll be there with my sister-in-law, Ginger, and with other families to think about and honor our loved ones. When we pause to honor our fallen heroes, we should honor our everyday heroes too. We all know people who face life’s challenges with bravery.
I think about how Jim told our sons they were his heroes, and how prophetic his words would become. They truly became his heroes when they cared for him with love and respect as he faded away.
For most people, decorating graves is an afterthought as they travel home from a weekend at the lake. Others spend the weekend shopping at Memorial Day sales or pigging out at backyard barbecues.
I always thought it ironic that Memorial Day has become a party weekend, not a somber occasion to remember the dead. Maybe it makes more sense to use Memorial Day as a time to celebrate life and honor the living as well as our fallen heroes. After all, we are surrounded by everyday heroes who deserve recognition for facing life with courage.
It stands to reason that we would use the day to also honor other loved ones. My Grandma Whittle called the holiday “Decoration Day.” She and Grandpa loaded up a picnic lunch and went to Big Rock Cemetery to decorate graves.
After Jim and I married, we made our annual pilgrimage to the cemeteries where our loved ones were buried. Sometimes it was a strain on our budget to buy the flowers to decorate the graves, but it brought a sense of peace as we continued the traditions of our youth.
Our first stop was always Mt. Carmel. From there we went to Big Rock Cemetery, stopped at Stover Cemetery, and then drove back to Sedalia to decorate graves at Crown Hill. We made a complete circle and headed home with a heart full of memories.
When Jim first developed dementia, I drove our usual route while Jim placed the flowers on the graves. When Jim went in the nursing home, I went alone. Decorating graves without him was not an experience I cared to repeat.
Memorial Day 2005 was the first time I participated in the ceremony at the Missouri Veterans Cemetery at Higginsville. I haven’t missed a year since Jim’s death.
I was a little bummed about a conflict this year. My granddaughter is graduating kindergarten Sunday. My youngest son’s family lives in the Lake of the Ozarks area, the opposite direction from the cemetery. I told my older son, Eric, that I was going to the graduation. “I’ll miss the Memorial Day ceremony,” I told him.
I was disappointed, but I know Jim would have never chosen a ceremony for the dead over one for the living. He often wondered aloud what good it did to make someone a hero after they died. Jim always said, “Dying doesn’t automatically make you a hero.” Instead, he would tell our sons when they were small, “You are my hero.”
Jim never considered himself to be a hero. He was tightlipped when it came to Vietnam, and I never knew Jim had received an Army Commendation Medal until he could no longer tell me why he received the award. The commendation was nowhere to be found, and the Army couldn’t produce it when I asked.
“Why would you miss the ceremony when the graduation is Sunday and Memorial Day is Monday?” Eric asked.
“I don’t know why I thought Memorial Day was Sunday,” I said. “After all, it’s always been Monday.”
On Memorial Day, I’ll drive to Higginsville cemetery to place flowers in front of Jim’s niche. I’ll be there with my sister-in-law, Ginger, and with other families to think about and honor our loved ones. When we pause to honor our fallen heroes, we should honor our everyday heroes too. We all know people who face life’s challenges with bravery.
I think about how Jim told our sons they were his heroes, and how prophetic his words would become. They truly became his heroes when they cared for him with love and respect as he faded away.
For most people, decorating graves is an afterthought as they travel home from a weekend at the lake. Others spend the weekend shopping at Memorial Day sales or pigging out at backyard barbecues.
I always thought it ironic that Memorial Day has become a party weekend, not a somber occasion to remember the dead. Maybe it makes more sense to use Memorial Day as a time to celebrate life and honor the living as well as our fallen heroes. After all, we are surrounded by everyday heroes who deserve recognition for facing life with courage.
Saturday, May 16, 2009
Lessons Learned from Scott the Piano Guy
I was flipping through the channels recently and saw a PBS broadcast featuring Scott the Piano Guy. I don’t own or play a piano, but something told me this wasn’t an ordinary show, so I decided to watch it.
Scott begins his lessons by asking his studio audience, “Do any of you want to be a classic pianist?” No one raised a hand. When he asked, “Would any of you like to come home from work and play a favorite tune on the piano?” all hands reached high.
The Piano Guy has a unique method of teaching the piano, and believes anyone can learn to play in days or weeks, rather than years of lessons. He is the first to admit he is not the best piano player. He begins by demonstrating that it makes no difference which fingers you use to play the chords. The funny thing about the piano, it sounds the same regardless of which fingers you use.
Scott demonstrates how to find the mysterious (to those of us who do not play) middle C. He holds his hands out to touch both ends of the piano and falls forward onto the keys. “When I center myself at the piano,” he says, “my nose hits middle C.” Mystery solved.
Scott is entertaining, but he gave me much more to think about than playing the piano. First, when you tackle a problem, you need to decide on your goal. Do you want to spend years playing scales on the keyboard, or just play the darn thing? Do you want to be perfect, or will you cut yourself some slack?
Second, when you have a job to do, you can meticulously follow all the rules. Or, you can be like Scott the Piano Guy and do it your way and write new rules.
I think every caregiver can gain wisdom from Scott the Piano Guy. What is your caregiving goal? I will venture a guess that it is to take the best care you can of your loved one. You don’t care about being the world’s best caregiver, or plan on being a professional. Let’s face it, when you become a caregiver, you can’t spend years practicing before you know what you are doing. You learn to be quick, think on your feet and be creative.
As a caregiver, you can’t possibly know all the rules, much less follow them. You will find yourself making them up as you progress from day-to-day. Besides when your loved one has dementia, you find out that what worked yesterday may work today but not tomorrow.
Scott the Piano Guy is successful because he is innovative. I can’t think of a better attribute for successful caregivers. When people with dementia can no longer come to your world, you need to go to theirs.
If you learn to reassure your loved one and have a positive outlook, it helps both of you through a tough situation. You can be the best caregiver for your loved one without being the world’s best caregiver.
Be kind to yourself and have a little fun. Rather than argue over what the rules say must be done at a particular time, go for a walk and pick a few flowers. Remember, it’s not the finesse and technique that matters, it’s the results. If you make the best of each day and seek out moments of joy, everyone is happier.
Scott begins his lessons by asking his studio audience, “Do any of you want to be a classic pianist?” No one raised a hand. When he asked, “Would any of you like to come home from work and play a favorite tune on the piano?” all hands reached high.
The Piano Guy has a unique method of teaching the piano, and believes anyone can learn to play in days or weeks, rather than years of lessons. He is the first to admit he is not the best piano player. He begins by demonstrating that it makes no difference which fingers you use to play the chords. The funny thing about the piano, it sounds the same regardless of which fingers you use.
Scott demonstrates how to find the mysterious (to those of us who do not play) middle C. He holds his hands out to touch both ends of the piano and falls forward onto the keys. “When I center myself at the piano,” he says, “my nose hits middle C.” Mystery solved.
Scott is entertaining, but he gave me much more to think about than playing the piano. First, when you tackle a problem, you need to decide on your goal. Do you want to spend years playing scales on the keyboard, or just play the darn thing? Do you want to be perfect, or will you cut yourself some slack?
Second, when you have a job to do, you can meticulously follow all the rules. Or, you can be like Scott the Piano Guy and do it your way and write new rules.
I think every caregiver can gain wisdom from Scott the Piano Guy. What is your caregiving goal? I will venture a guess that it is to take the best care you can of your loved one. You don’t care about being the world’s best caregiver, or plan on being a professional. Let’s face it, when you become a caregiver, you can’t spend years practicing before you know what you are doing. You learn to be quick, think on your feet and be creative.
As a caregiver, you can’t possibly know all the rules, much less follow them. You will find yourself making them up as you progress from day-to-day. Besides when your loved one has dementia, you find out that what worked yesterday may work today but not tomorrow.
Scott the Piano Guy is successful because he is innovative. I can’t think of a better attribute for successful caregivers. When people with dementia can no longer come to your world, you need to go to theirs.
If you learn to reassure your loved one and have a positive outlook, it helps both of you through a tough situation. You can be the best caregiver for your loved one without being the world’s best caregiver.
Be kind to yourself and have a little fun. Rather than argue over what the rules say must be done at a particular time, go for a walk and pick a few flowers. Remember, it’s not the finesse and technique that matters, it’s the results. If you make the best of each day and seek out moments of joy, everyone is happier.
Friday, May 8, 2009
When Pigs Fly: Swine Flu Immunization
One of the advantages of getting older is I don’t panic as easily as I did when I was younger. I think it’s a combination of slower reaction time and the reality that I just don’t have as much to lose anymore.
All this media frenzy over the swine flu reminds me of what I consider its culpability in my own brush with death. The ambiguous “its” can refer to swine flu and/or the media.
I was a lot younger in 1976 and so were my children. Eric was 6 and Rob was only four. Swine flu had reared its ugly head, and to protect us from harm, a massive immunization program was implemented. We were warned that since we had no immunity to this deadly virus, all able bodied Americans should be immunized. It sounded almost like our patriotic duty to do so. At the least, it seemed like our parental duty to protect our children.
Jim and I had a disagreement over the immunization.
“I’ll take my chances with the flu,” Jim said. “It sounds like scare tactics to me. Somebody is going to make a whole lot of money out of this.”
“Well, I’m getting the shot. I’d feel just awful if I caught the flu and gave it to the kids,” I argued. I played the guilt card, and asked, “You won’t even do this for the safety of our kids?”
“It’s just a bunch of hogwash,” he said.
My motherly instincts overrode Jim’s common sense, not to mention my own. I should have known that if you drove up in a car, stuck your arm out the window and had someone shoot an untested vaccination in your arm, it couldn’t be good. But I did it. I can’t remember just where the location of the drive-thru shot took place, but I think it might have been a bank.
I was all right for a few days after the immunization for swine flu and I figured life would return to normal. I slept better for a few nights smug in the knowledge that I had done all I could to protect Rob and Eric.
About a week later, I began to develop some rather strange symptoms. I was fatigued and overcome with a general malaise. I barely made it through the day. My arms and legs seemed heavy, my head pounded behind my eyes, and my body ached. I wanted to sleep all the time. I was sure I would shake the mysterious ailment in a few days.
Days passed. Each day I struggled just to function. Then, a few weeks passed. We didn’t have health insurance, and I figured my vague complaints wouldn’t help my doctor figure out what was wrong with me. I remember being so despondent that I held a bottle of pills in my hand and considered taking them all. Instead, I just took a double dose and slept some more.
After six weeks, I began to feel slightly stronger each day and within a couple of months, the mysterious illness vanished without a trace.
I never connected my health issues to the swine flu vaccination, until the dangers of mass immunization began to make headlines. More people died from the immunization than from the swine flu.
I recently read an article in the paper that the swine flu, or the politically correct H1N1 virus, may not be as bad as originally feared. The comforting word was that next fall an immunization may be available for it.
Well, I'll be immunized for swine flu when pigs fly! I’d rather take my chances with the flu. Something tells me I might have a whole lot of immunity.
All this media frenzy over the swine flu reminds me of what I consider its culpability in my own brush with death. The ambiguous “its” can refer to swine flu and/or the media.
I was a lot younger in 1976 and so were my children. Eric was 6 and Rob was only four. Swine flu had reared its ugly head, and to protect us from harm, a massive immunization program was implemented. We were warned that since we had no immunity to this deadly virus, all able bodied Americans should be immunized. It sounded almost like our patriotic duty to do so. At the least, it seemed like our parental duty to protect our children.
Jim and I had a disagreement over the immunization.
“I’ll take my chances with the flu,” Jim said. “It sounds like scare tactics to me. Somebody is going to make a whole lot of money out of this.”
“Well, I’m getting the shot. I’d feel just awful if I caught the flu and gave it to the kids,” I argued. I played the guilt card, and asked, “You won’t even do this for the safety of our kids?”
“It’s just a bunch of hogwash,” he said.
My motherly instincts overrode Jim’s common sense, not to mention my own. I should have known that if you drove up in a car, stuck your arm out the window and had someone shoot an untested vaccination in your arm, it couldn’t be good. But I did it. I can’t remember just where the location of the drive-thru shot took place, but I think it might have been a bank.
I was all right for a few days after the immunization for swine flu and I figured life would return to normal. I slept better for a few nights smug in the knowledge that I had done all I could to protect Rob and Eric.
About a week later, I began to develop some rather strange symptoms. I was fatigued and overcome with a general malaise. I barely made it through the day. My arms and legs seemed heavy, my head pounded behind my eyes, and my body ached. I wanted to sleep all the time. I was sure I would shake the mysterious ailment in a few days.
Days passed. Each day I struggled just to function. Then, a few weeks passed. We didn’t have health insurance, and I figured my vague complaints wouldn’t help my doctor figure out what was wrong with me. I remember being so despondent that I held a bottle of pills in my hand and considered taking them all. Instead, I just took a double dose and slept some more.
After six weeks, I began to feel slightly stronger each day and within a couple of months, the mysterious illness vanished without a trace.
I never connected my health issues to the swine flu vaccination, until the dangers of mass immunization began to make headlines. More people died from the immunization than from the swine flu.
I recently read an article in the paper that the swine flu, or the politically correct H1N1 virus, may not be as bad as originally feared. The comforting word was that next fall an immunization may be available for it.
Well, I'll be immunized for swine flu when pigs fly! I’d rather take my chances with the flu. Something tells me I might have a whole lot of immunity.
Saturday, May 2, 2009
The Over-Fifty Diagnostic Test
My family doctor, bless his heart, is looking out for my overall health and decided I should have a colonoscopy. Geeze, it certainly sounded like a lot of fun, but somehow I had dodged the experience for more than fifty years. I had just reminded him I needed my annual mammogram and although that is pretty much having your breasts pancaked, it is not unbearable. To be perfectly honest, I had never heard anyone say anything good about a colonoscopy.
I knew I was in trouble when the Miralax concoction filled my pitcher. Holy smokes, how was I supposed to drink that much liquid in two and a half hours? When I make something I really like, sun tea, for example, I usually throw about half of it out after three days.
The five o’clock hour arrived and I faced off with the first eight ounces. I drank it in about five minutes. I charted a schedule on my junior legal pad at fifteen minute intervals and planned to be done before American Idol. I began to think that contrary to popular opinion, the prep really wasn’t worse than the test.
I congratulated myself on not having to drink the gallon of gunk they tried to give Jim when he was in the hospital between nursing homes. H e had been kicked out of one home and after nearly a month in “regenerations” we had found another home for him. The hospital decided to investigate his rectal bleeding before discharging him. They assigned Eric and me the task of getting the gallon of liquid down him. After a few swallows, Jim gagged, clamped his mouth shut, and refused to drink it.
“It isn’t going to happen,” Eric said. He tracked down the doctor and told him Jim would not drink the nasty stuff.
“We’ll have to force it down him then,” the doctor said. “He needs this test.”
No way were we going to allow that! Jim’s life was difficult enough without someone dumping liquids down him. I knew he would vomit and possibly choke on it. Against the hospitals’ recommendations, we signed a waiver to skip the test.
I thought about Jim and drank my second glass as easily as the first. By the time I finished the third glass, my stomach sloshed and felt bloated. I began to feel queasy. I decided to call my daughter-in-law, Shawna, who is a student nurse. Eric answered the phone.
“Ask Shawna what happens if I throw up,” I said.
After consulting with her, he told me, “That’s not good. Try to keep it down.”
My stomach had other plans. I called back later. “Part of it came back up.”
“Do you want us to bring you more Miralax?” he asked.
“No!” I began to look with each glass with dread.
“Then quit being a kid. Suck it up and deal with it. Shawna says it would be better to drink it a little slower and get it all down.” Even through my queasiness, I had to smile at Eric’s “suck it up” lecture. How many times have I heard that from him?
I threw up again, but managed to drink the rest of it. Now, I worried all night that I hadn’t gotten enough of the solution down. According to Dr. Google, I would have to begin all over again if I didn’t follow directions exactly.
I made it to bed around midnight and was up at 4:00 to get into the hospital on time. Ginger took me to the hospital and reported in as my designated driver.
The nurses were very nice and covered me with warm blankets. They inserted an IV lock and soon after, I exchanged good mornings with the doctor.
“How are you today?” he asked.
“Well, I’d rather be fishing and I don’t even fish,” I replied.
Soon they started the drug, and I began to feel lightheaded. I shut my eyes for a few seconds and then opened them again. I could see a monitor. I watched as the doctor used a shiny loop to snare a small polyp. I was so fascinated with what they were doing, the time passed quickly.
The nurse gave me a cup of coffee and some ice water to see if I could keep it down. Anesthetic of any kind usually makes me violently ill. The coffee made me queasy, but I decided it was because hospital coffee is usually on the nasty side. I had been alert throughout the procedure and thought they must not have given me much.
I was starving after a day on liquids. “Let’s go get breakfast,” I said to Ginger.
At the restaurant, I ordered biscuits and gravy. Before the food came, I rushed to the restroom to upchuck. Luckily I was alone so I didn’t create a swine flu panic.
I boxed up my breakfast and Ginger drove me home. I spent the day sleeping and vomiting. I went to bed at nine o’clock and felt normal the next morning.
The prep really was worse than the test. In fact, the test was a piece of cake compared to the aftereffects of the anesthetic.
I knew I was in trouble when the Miralax concoction filled my pitcher. Holy smokes, how was I supposed to drink that much liquid in two and a half hours? When I make something I really like, sun tea, for example, I usually throw about half of it out after three days.
The five o’clock hour arrived and I faced off with the first eight ounces. I drank it in about five minutes. I charted a schedule on my junior legal pad at fifteen minute intervals and planned to be done before American Idol. I began to think that contrary to popular opinion, the prep really wasn’t worse than the test.
I congratulated myself on not having to drink the gallon of gunk they tried to give Jim when he was in the hospital between nursing homes. H e had been kicked out of one home and after nearly a month in “regenerations” we had found another home for him. The hospital decided to investigate his rectal bleeding before discharging him. They assigned Eric and me the task of getting the gallon of liquid down him. After a few swallows, Jim gagged, clamped his mouth shut, and refused to drink it.
“It isn’t going to happen,” Eric said. He tracked down the doctor and told him Jim would not drink the nasty stuff.
“We’ll have to force it down him then,” the doctor said. “He needs this test.”
No way were we going to allow that! Jim’s life was difficult enough without someone dumping liquids down him. I knew he would vomit and possibly choke on it. Against the hospitals’ recommendations, we signed a waiver to skip the test.
I thought about Jim and drank my second glass as easily as the first. By the time I finished the third glass, my stomach sloshed and felt bloated. I began to feel queasy. I decided to call my daughter-in-law, Shawna, who is a student nurse. Eric answered the phone.
“Ask Shawna what happens if I throw up,” I said.
After consulting with her, he told me, “That’s not good. Try to keep it down.”
My stomach had other plans. I called back later. “Part of it came back up.”
“Do you want us to bring you more Miralax?” he asked.
“No!” I began to look with each glass with dread.
“Then quit being a kid. Suck it up and deal with it. Shawna says it would be better to drink it a little slower and get it all down.” Even through my queasiness, I had to smile at Eric’s “suck it up” lecture. How many times have I heard that from him?
I threw up again, but managed to drink the rest of it. Now, I worried all night that I hadn’t gotten enough of the solution down. According to Dr. Google, I would have to begin all over again if I didn’t follow directions exactly.
I made it to bed around midnight and was up at 4:00 to get into the hospital on time. Ginger took me to the hospital and reported in as my designated driver.
The nurses were very nice and covered me with warm blankets. They inserted an IV lock and soon after, I exchanged good mornings with the doctor.
“How are you today?” he asked.
“Well, I’d rather be fishing and I don’t even fish,” I replied.
Soon they started the drug, and I began to feel lightheaded. I shut my eyes for a few seconds and then opened them again. I could see a monitor. I watched as the doctor used a shiny loop to snare a small polyp. I was so fascinated with what they were doing, the time passed quickly.
The nurse gave me a cup of coffee and some ice water to see if I could keep it down. Anesthetic of any kind usually makes me violently ill. The coffee made me queasy, but I decided it was because hospital coffee is usually on the nasty side. I had been alert throughout the procedure and thought they must not have given me much.
I was starving after a day on liquids. “Let’s go get breakfast,” I said to Ginger.
At the restaurant, I ordered biscuits and gravy. Before the food came, I rushed to the restroom to upchuck. Luckily I was alone so I didn’t create a swine flu panic.
I boxed up my breakfast and Ginger drove me home. I spent the day sleeping and vomiting. I went to bed at nine o’clock and felt normal the next morning.
The prep really was worse than the test. In fact, the test was a piece of cake compared to the aftereffects of the anesthetic.
Monday, April 27, 2009
Stand Up and Be Counted
Last weekend I attended my second annual BPW State Conference. It was a busy and productive time. I thought I might be expelled from BPW for standing up for my strong—perhaps pigheaded—beliefs.
I learned from the best the importance of being true to myself. Sometimes Jim exasperated me with his determination to stand up for his “principals”. I tried to get him to lighten up and admit that in a democracy, the majority ruled. No way! When he knew something was right, he defended his position. When I tried to reason with him, he merely declared, “That’s against my principals.”
My problem with BPW had nothing to do with our state or local organizations. I am proud of my local Business and Professional Women’s Club. They are great women to work with and, boy, are we ever a busy group! We hold fundraisers, activities and award scholarships. The ladies in our local are my friends and I care about them.
Even Jim with his principals, would have said, “If it ain’t broke, don’t fix it.” Unfortunately, BPW/USA is broken. My Jim-like round of stubbornness began when BPW/USA came up with a plan to charge a license fee for the BPW name.
Our national organization has made some bad business decisions and is on the brink of bankruptcy. They lost nearly $200,000 on the national conference last year and then lost touch with the very women they were created to serve. After months of pleas for more money from our incredibly shrinking organization, BPW/USA finally realized the members couldn’t bail them out of their mess.
I’ll spare you the details, but now BPW members are voting on a merger between BPW/USA and BPW Foundation. This is the same foundation that recently gave BPW/USA $500,000, but suspended scholarships for 2009-2010. Needless to say, that didn’t set well with a lot of members.
The merger plan got worse. BPW/USA trademarked all their programs and the use of the BPW logo and even the letters “BPW”. This trademark was approved in January 2009. Why would they do such a thing? To protect the trademark, they said. In reality, it was to charge an annual license fee of $40 per person to any woman who wanted to remain a “BPW” member and continue the proud tradition of our foremothers.
What if we didn’t want to pay the hostage fee to use our own name? BPW/USA’s response was to advise us to check with our Secretary of State to take the necessary steps to change state and local names. The Missouri Federation of Business and Professional Women’s Clubs, Inc. was chartered in 1938. Our legal council advised us that this is our name and we don’t have to change it.
BPW was born ninety years ago in St. Louis by a group of women who stood up for their rights and to promote equality and fairness for women in the workplace. These forward-looking women were not afraid to stand up for their sisters and themselves.
Our Missouri women have led the charge for the past ninety years. This weekend, we stood up for the organization we love and for the opportunity to revitalize and reorganize our group.
After we discussed the proposed resolution to disassociate our Missouri Federation from BPW/USA, we were asked to stand if we supported the resolution. The room was filled with my BPW sisters who stood up for what was right.
I believe BPW/USA underestimated the caliber of women who make up their membership. It wasn’t just the newer members who stood up, but long-term members who have been involved in the organization for decades. Women with integrity, courage, and principals stood up to be counted.
___________________________
For information about the BPW Merger visit http://bpwgrassroots.blogspot.com
I learned from the best the importance of being true to myself. Sometimes Jim exasperated me with his determination to stand up for his “principals”. I tried to get him to lighten up and admit that in a democracy, the majority ruled. No way! When he knew something was right, he defended his position. When I tried to reason with him, he merely declared, “That’s against my principals.”
My problem with BPW had nothing to do with our state or local organizations. I am proud of my local Business and Professional Women’s Club. They are great women to work with and, boy, are we ever a busy group! We hold fundraisers, activities and award scholarships. The ladies in our local are my friends and I care about them.
Even Jim with his principals, would have said, “If it ain’t broke, don’t fix it.” Unfortunately, BPW/USA is broken. My Jim-like round of stubbornness began when BPW/USA came up with a plan to charge a license fee for the BPW name.
Our national organization has made some bad business decisions and is on the brink of bankruptcy. They lost nearly $200,000 on the national conference last year and then lost touch with the very women they were created to serve. After months of pleas for more money from our incredibly shrinking organization, BPW/USA finally realized the members couldn’t bail them out of their mess.
I’ll spare you the details, but now BPW members are voting on a merger between BPW/USA and BPW Foundation. This is the same foundation that recently gave BPW/USA $500,000, but suspended scholarships for 2009-2010. Needless to say, that didn’t set well with a lot of members.
The merger plan got worse. BPW/USA trademarked all their programs and the use of the BPW logo and even the letters “BPW”. This trademark was approved in January 2009. Why would they do such a thing? To protect the trademark, they said. In reality, it was to charge an annual license fee of $40 per person to any woman who wanted to remain a “BPW” member and continue the proud tradition of our foremothers.
What if we didn’t want to pay the hostage fee to use our own name? BPW/USA’s response was to advise us to check with our Secretary of State to take the necessary steps to change state and local names. The Missouri Federation of Business and Professional Women’s Clubs, Inc. was chartered in 1938. Our legal council advised us that this is our name and we don’t have to change it.
BPW was born ninety years ago in St. Louis by a group of women who stood up for their rights and to promote equality and fairness for women in the workplace. These forward-looking women were not afraid to stand up for their sisters and themselves.
Our Missouri women have led the charge for the past ninety years. This weekend, we stood up for the organization we love and for the opportunity to revitalize and reorganize our group.
After we discussed the proposed resolution to disassociate our Missouri Federation from BPW/USA, we were asked to stand if we supported the resolution. The room was filled with my BPW sisters who stood up for what was right.
I believe BPW/USA underestimated the caliber of women who make up their membership. It wasn’t just the newer members who stood up, but long-term members who have been involved in the organization for decades. Women with integrity, courage, and principals stood up to be counted.
___________________________
For information about the BPW Merger visit http://bpwgrassroots.blogspot.com
Sunday, April 19, 2009
Memories of a Rocky Mountain Morning
My alarm awakened me Saturday morning at the unreasonable hour of 6:00 a.m. I attempted to clear the fog from my brain to figure out why the darn thing was disturbing my sleep. I shut off the alarm and settled back on my Memory Foam pillow to listen to the radio while I contemplated the rude awakening.
After a few minutes, I remembered I needed to be at work by 7:30. While I tried to convince myself to jump out of bed, the DJ played Vince Gill’s song, “Rest High on That Mountain.”
What a fitting song for the fourth anniversary of Jim’s death. The epithet on Jim’s niche at the Veteran’s Cemetery is “Rest High on That Mountain.”
The anniversary had been bearing on my mind for the entire week. I thought about it on Monday the 13th, which seemed much like a Friday the 13th. I was at home that day, but instead of relaxing, I spent the day working on various projects. Tuesday was a hectic workday with deadlines to complete before noon on Wednesday. I ran into problems, but managed to finish my reports before Brenda and I left for the accountant’s meeting in Kansas City. By the time I got back into the office Friday, I was mentally and physically exhausted.
On this gloomy Saturday morning, all I wanted to do was sleep, but the Vince Gill song brought back a flood of emotions. In my memories, I see Jim sitting on the rock ledge overlooking the Big Horn Meadows in the Rocky Mountain National Park. Jim plays his guitar and sings a song about Colorado while I videotape him. Tourist and chipmunks watch in hushed silence. One brave chipmunk runs up Jim’s arm and perches on his shoulder.
The Rocky Mountains soothed Jim’s soul. He liked nothing better than making coffee on a camp stove in Moraine Park. He kicked back in a lawn chair, sipped coffee by the campfire and waited for the sun to peek through the mountains.
Jim didn’t need an alarm clock to wake him in the mornings. He was never a sleepyhead like me.
I remember Jim telling me “Rest High on That Mountain” was written as a tribute to Vince Gill’s brother who died too young after a lingering illness. The song spoke to Jim’s heart. Our minds play tricks on us, but I can’t help but think that Jim told me about the history of the song on one of the many Saturday mornings we sat propped up on our pillows while we drank our first cup of coffee.
One of the things I loved most about our life together were the quiet mornings when we had our “together” time to engage in contemplative conversations. At that time, Jim never suspected he would someday have a disease that would steal these moments from his memory.
As I lay in bed, I didn't think about that day four years ago, but instead remembered our ordinary lives fifteen years ago. When the song finished, I walked into the kitchen to start a pot of coffee. I opened the blinds to see a gentle rain falling. The redbuds are bloomed and tiny flowers peek through the grass. It looks like a Colorado morning.
“Rest High on That Mountain” seems to be a message from Jim. He always said that death was closing one door and opening another. I believe he wants me to know that although his death is heartbreaking for his family it is not the end; it is a continuance of life for all of us.
After a few minutes, I remembered I needed to be at work by 7:30. While I tried to convince myself to jump out of bed, the DJ played Vince Gill’s song, “Rest High on That Mountain.”
What a fitting song for the fourth anniversary of Jim’s death. The epithet on Jim’s niche at the Veteran’s Cemetery is “Rest High on That Mountain.”
The anniversary had been bearing on my mind for the entire week. I thought about it on Monday the 13th, which seemed much like a Friday the 13th. I was at home that day, but instead of relaxing, I spent the day working on various projects. Tuesday was a hectic workday with deadlines to complete before noon on Wednesday. I ran into problems, but managed to finish my reports before Brenda and I left for the accountant’s meeting in Kansas City. By the time I got back into the office Friday, I was mentally and physically exhausted.
On this gloomy Saturday morning, all I wanted to do was sleep, but the Vince Gill song brought back a flood of emotions. In my memories, I see Jim sitting on the rock ledge overlooking the Big Horn Meadows in the Rocky Mountain National Park. Jim plays his guitar and sings a song about Colorado while I videotape him. Tourist and chipmunks watch in hushed silence. One brave chipmunk runs up Jim’s arm and perches on his shoulder.
The Rocky Mountains soothed Jim’s soul. He liked nothing better than making coffee on a camp stove in Moraine Park. He kicked back in a lawn chair, sipped coffee by the campfire and waited for the sun to peek through the mountains.
Jim didn’t need an alarm clock to wake him in the mornings. He was never a sleepyhead like me.
I remember Jim telling me “Rest High on That Mountain” was written as a tribute to Vince Gill’s brother who died too young after a lingering illness. The song spoke to Jim’s heart. Our minds play tricks on us, but I can’t help but think that Jim told me about the history of the song on one of the many Saturday mornings we sat propped up on our pillows while we drank our first cup of coffee.
One of the things I loved most about our life together were the quiet mornings when we had our “together” time to engage in contemplative conversations. At that time, Jim never suspected he would someday have a disease that would steal these moments from his memory.
As I lay in bed, I didn't think about that day four years ago, but instead remembered our ordinary lives fifteen years ago. When the song finished, I walked into the kitchen to start a pot of coffee. I opened the blinds to see a gentle rain falling. The redbuds are bloomed and tiny flowers peek through the grass. It looks like a Colorado morning.
“Rest High on That Mountain” seems to be a message from Jim. He always said that death was closing one door and opening another. I believe he wants me to know that although his death is heartbreaking for his family it is not the end; it is a continuance of life for all of us.
Saturday, April 11, 2009
Teddy Bear Smiles and Not So Sweet Dreams
Like many other children, my granddaughter has a favorite stuffed animal she wants to hug while she sleeps. Her bedtime companion is Finney, a Build-a-Bear puppy born in Branson. From the time she warmed his “heart” in her hands, Finney has been her nighttime companion.
Last weekend at bedtime, her question was “Where’s Finney?”
Her mom, Stacey, told her, “He’s in the car with Daddy.”
“But Daddy is at the races!” my granddaughter said. “Finney is alone in the car. I feel so bad!” She buried her face in my lap.
We spent several minutes reassuring her that Finney would be OK. My granddaughter insisted, “He’s afraid of the dark!”
Stacey handed her a big Teddy bear. “You can sleep with this bear until Daddy gets home.”
“Why don’t you hug him?” I asked her. “He hardly ever gets hugs.” The snuggly brown bear had a big sewn-on smile and an orange ribbon around his neck.
My granddaughter hugged him tight. When she held him out to look at him, she said, “Oh, Grandma Linda, his smile is bigger now. Look! He’s so happy!”
I finished a few things before going into my bedroom. She was fast asleep on my bed with the bear hugged to her heart.
With such a pleasant evening, I expected a good night’s sleep. Instead, that was the first night of a week-long series of bad dreams. Night after night, I dreamed about packing for a trip. Nothing seemed to go right in the dreams: the van showed up to take me to the airport before I had my suitcases packed, I couldn’t find my passport, my purse was missing. The scenarios changed but the disturbing dreams continued all week.
Last night, I slept restfully without any bad dreams. I awakened to discover my arms wrapped around the Teddy bear—his nose to my nose. Daylight flowed through the windows, and I could easily see his smiling face.
Not quite ready to wake up, I closed my eyes for a few seconds and thought about the weekend ahead. Easter weekend will be a celebration of Easter egg hunts and services at the Mathewson Center. But the best part of the weekend is my sons and their families plan to join me for Easter services. With our hectic lives, it seems we are seldom together.
With my eyes still closed, I thought about other Easters—the time Jim and his brother-in-law, Dennis, caught a stringer of fish; hiding Easter eggs too well and helping the kids find them; huge family meals at my mother-in-law’s house, dressing the kids up in their Easter outfits, and a rush of other memories about Easters past.
I opened my eyes and smiled at the Teddy bear I still held in my arms. He smiled back, of course, with his sewn-on happy face. Maybe my granddaughter was right—his smile seemed a bit bigger than it had been. Well, at the thought of the weekend ahead, I know mine certainly was.
Last weekend at bedtime, her question was “Where’s Finney?”
Her mom, Stacey, told her, “He’s in the car with Daddy.”
“But Daddy is at the races!” my granddaughter said. “Finney is alone in the car. I feel so bad!” She buried her face in my lap.
We spent several minutes reassuring her that Finney would be OK. My granddaughter insisted, “He’s afraid of the dark!”
Stacey handed her a big Teddy bear. “You can sleep with this bear until Daddy gets home.”
“Why don’t you hug him?” I asked her. “He hardly ever gets hugs.” The snuggly brown bear had a big sewn-on smile and an orange ribbon around his neck.
My granddaughter hugged him tight. When she held him out to look at him, she said, “Oh, Grandma Linda, his smile is bigger now. Look! He’s so happy!”
I finished a few things before going into my bedroom. She was fast asleep on my bed with the bear hugged to her heart.
With such a pleasant evening, I expected a good night’s sleep. Instead, that was the first night of a week-long series of bad dreams. Night after night, I dreamed about packing for a trip. Nothing seemed to go right in the dreams: the van showed up to take me to the airport before I had my suitcases packed, I couldn’t find my passport, my purse was missing. The scenarios changed but the disturbing dreams continued all week.
Last night, I slept restfully without any bad dreams. I awakened to discover my arms wrapped around the Teddy bear—his nose to my nose. Daylight flowed through the windows, and I could easily see his smiling face.
Not quite ready to wake up, I closed my eyes for a few seconds and thought about the weekend ahead. Easter weekend will be a celebration of Easter egg hunts and services at the Mathewson Center. But the best part of the weekend is my sons and their families plan to join me for Easter services. With our hectic lives, it seems we are seldom together.
With my eyes still closed, I thought about other Easters—the time Jim and his brother-in-law, Dennis, caught a stringer of fish; hiding Easter eggs too well and helping the kids find them; huge family meals at my mother-in-law’s house, dressing the kids up in their Easter outfits, and a rush of other memories about Easters past.
I opened my eyes and smiled at the Teddy bear I still held in my arms. He smiled back, of course, with his sewn-on happy face. Maybe my granddaughter was right—his smile seemed a bit bigger than it had been. Well, at the thought of the weekend ahead, I know mine certainly was.
Saturday, April 4, 2009
Clown Noses, Laughter and Tears
I heard rumors that the speaker at our Business and Professional Women’s meeting, Vickie Weaver, had asked for clown noses for each person in attendance. My first reaction was a mental rolling of eyes and words raced through my brain that I won’t put in writing.
I’ve always enjoyed humor and having fun, but usually avoid acting silly. Clown noses sounded pretty ridiculous.
Vickie presented the first part of her program on “The Art of Laughter” touting the therapeutic benefits of laughter. We’ve all heard about life threatening diseases being cured after a person watched several days of slapstick comedy.
The dreaded moment arrived and clown noses were distributed. We opened plastic wrappers and plunked the red sponge noses over our real noses. Immediately, cell phones were removed from purses to take advantage of this photo op. I seriously hope there are not pictures of me on You Tube wearing a red sponge-Bob nose.
I’m pretty sure our honored guests for the evening—a table of men, the chicken fryers from last fall’s fundraiser—thought we had lost our minds. A couple of them tentatively put on their noses, but they didn’t jump up like the rest of us to learn a variety of laughs.
My favorite was the one that ended with throwing our hands in the air and shouting “Wheeeeeeeeeeeee!” Other favorites were the “hand shake” and the “thumbs up” laugh.
I laughed so hard my sides hurt and the muscles on the back part of my head began to ache. I’m sure the good endorphins helped us through the serious topic that dominated our business meeting. We discussed the imminent demise of the 90 year old BPW organization that we all know and love. Our group is determination to continue with our local’s good work even if it requires a name change. Our BPW local supports community programs year round and annually awards scholarships.
Vickie’s timing was perfect to remind us of the importance of not just a smile or chuckle, but a real full body laugh. It is impossible to take yourself too seriously while you wear a clown nose. Clown noses and laughter put troubles into perspective.
After a blustery, cold Thursday, Friday morning was bright with the slight chill of a Colorado summer day, the kind of morning that always makes me miss Jim. It was my day off and I had time to think about personal pressing issues. My broken dryer topped the list. My sister-in-law, Ginger, had already dried two loads of clothes for me. Now, I needed to figure out how to get the dryer repaired or replaced.
As I poured my first cup of coffee, a moment of utter sadness over life’s losses brought tears to my eyes. As I fixed my coffee, I thought about how much Jim loved a cup of coffee. He drank his coffee black. He wanted it steaming hot so he used a thick cup and drank a half-cup at a time. After his cup of coffee he would have fixed the dryer and it wouldn’t have been my problem.
I’m not usually one to weep over what “should-a-could-a” been so I brushed aside the tears to answer the phone. A friend told me he was on the way over to look at my dryer. My spirits lifted, and while I drank my first cup of coffee, I enjoyed the lovely spring day. I began to hum—life can be fun regardless of those pesky day-to-day problems.
I pulled my clown nose out of my purse. Should I just pop the nose on and practice my “Wheeeee!” laugh? Nah! No sense in being silly.
I’ve always enjoyed humor and having fun, but usually avoid acting silly. Clown noses sounded pretty ridiculous.
Vickie presented the first part of her program on “The Art of Laughter” touting the therapeutic benefits of laughter. We’ve all heard about life threatening diseases being cured after a person watched several days of slapstick comedy.
The dreaded moment arrived and clown noses were distributed. We opened plastic wrappers and plunked the red sponge noses over our real noses. Immediately, cell phones were removed from purses to take advantage of this photo op. I seriously hope there are not pictures of me on You Tube wearing a red sponge-Bob nose.
I’m pretty sure our honored guests for the evening—a table of men, the chicken fryers from last fall’s fundraiser—thought we had lost our minds. A couple of them tentatively put on their noses, but they didn’t jump up like the rest of us to learn a variety of laughs.
My favorite was the one that ended with throwing our hands in the air and shouting “Wheeeeeeeeeeeee!” Other favorites were the “hand shake” and the “thumbs up” laugh.
I laughed so hard my sides hurt and the muscles on the back part of my head began to ache. I’m sure the good endorphins helped us through the serious topic that dominated our business meeting. We discussed the imminent demise of the 90 year old BPW organization that we all know and love. Our group is determination to continue with our local’s good work even if it requires a name change. Our BPW local supports community programs year round and annually awards scholarships.
Vickie’s timing was perfect to remind us of the importance of not just a smile or chuckle, but a real full body laugh. It is impossible to take yourself too seriously while you wear a clown nose. Clown noses and laughter put troubles into perspective.
After a blustery, cold Thursday, Friday morning was bright with the slight chill of a Colorado summer day, the kind of morning that always makes me miss Jim. It was my day off and I had time to think about personal pressing issues. My broken dryer topped the list. My sister-in-law, Ginger, had already dried two loads of clothes for me. Now, I needed to figure out how to get the dryer repaired or replaced.
As I poured my first cup of coffee, a moment of utter sadness over life’s losses brought tears to my eyes. As I fixed my coffee, I thought about how much Jim loved a cup of coffee. He drank his coffee black. He wanted it steaming hot so he used a thick cup and drank a half-cup at a time. After his cup of coffee he would have fixed the dryer and it wouldn’t have been my problem.
I’m not usually one to weep over what “should-a-could-a” been so I brushed aside the tears to answer the phone. A friend told me he was on the way over to look at my dryer. My spirits lifted, and while I drank my first cup of coffee, I enjoyed the lovely spring day. I began to hum—life can be fun regardless of those pesky day-to-day problems.
I pulled my clown nose out of my purse. Should I just pop the nose on and practice my “Wheeeee!” laugh? Nah! No sense in being silly.
Saturday, March 28, 2009
Purple Passion for Alzheimer’s at the Public Policy Forum
When Jim and I became engaged April 5, 1969, our colors were purple and yellow. Jim would tell me, “I love you with a purple passion,” and then he would add, “with a yellow racing stripe.” You have to realize that in 1969 racing stripes were really cool.
Purple is the signature color of the Alzheimer’s Association. I really don’t know why they chose purple, but the color can still be associated with passion.
My sister, Roberta, and I arrived in Washington DC a few days before the Alzheimer’s Association Public Policy Forum. We visited historic landmarks and attended services in the National Cathedral on Sunday morning. Cherry blossoms verged on blooming, and we couldn’t have asked for better weather.
Through past experience, I’ve found the most essential item for DC is comfortable shoes. Even with comfortable shoes, we managed to return each night with weary legs and aching feet. Everything in Washington DC is bigger than life—including the distance between buildings and monuments.
We joined more than five hundred advocates to bring passion to Capitol Hill. Twenty-four delegates from Missouri experienced the Alzheimer’s Association’s 21st Annual Forum. Four advocates in our group have been diagnosed with early or younger onset Alzheimer’s.
Mike Splaine, Alzheimer’s Association Advocacy guru, said because the Alzheimer’s crisis is gradual it is in danger of being overlooked. He said we needed passion and intensity to bring about change and take steps to make Alzheimer’s disease a national priority.
Maria Shriver, first lady of California, wasn’t satisfied to merely attend the forum—she wanted to experience the forum. She made her first appearance at the candlelight vigil Monday evening. After speakers passionately talked about their journeys, we lit our candles of remembrance and hope for a future without Alzheimer’s.
On Tuesday, Maria introduced a preview of an upcoming four-part HBO special about Alzheimer’s. The heartbreaking message ended with the word HOPELESS truncated to read HOPE.
Our group of 500 stormed Capitol Hill with purple sashes making us stand out from the crowd. We visited our respective senators and representatives to speak with one voice.
Our legislative “ask” was streamlined this year to three issues. Research was at the top of the list. We asked for an additional $250 million this year and another $250 million in 2010 to reach our illusive $1 billion goal. The annual total cost of Alzheimer’s is $148 billion. If $1 billion in research funding could reduce the annual cost by a small percentage it would be a wise investment.
Secondly, we asked for an Alzheimer’s Solutions Project Office. This office would be charged with leading a national effort to reengineer dementia care delivery.
We also asked for a phase out of the social security two-year waiting period for Medicare. Expensive diagnostic tests are sometimes delayed due to the waiting period. Early drug intervention may also be postponed past the time when it does the most good.
The “2009 Alzheimer’s Disease Facts and Figures” highlights the prevalence of the disease. Alzheimer’s is a family disease, and every 70 seconds another family begins this journey. Seventy percent of the 5.3 million Americans with Alzheimer’s are cared for by 9.9 million unpaid caregivers.
Alzheimer’s Statistics can be alarming, but personal stories are the heart beat behind the numbers. When a legislator looks into a caregiver’s sad eyes or into the confused gaze of a person with dementia, we become more than a number. We humanize the emotional and physical drain of a degenerative and fatal brain disease.
Jim was in a nursing home when I made my first trip to Washington DC. His dementia often made me feel helpless and hopeless. The trips helped rejuvenate my spirit and gave me purpose. I am friends with many amazing people that advocacy brought into my life. Being an advocate is personally rewarding and I believe it is important for those with Alzheimer’s and their families.
This was my ninth trip to Washington DC as an advocate. Jim died in 2005, but I continue to make the trip in his memory. Each year, when I prepare for the Public Policy Forum, I take my purple passion and pack comfortable shoes.
Purple is the signature color of the Alzheimer’s Association. I really don’t know why they chose purple, but the color can still be associated with passion.
My sister, Roberta, and I arrived in Washington DC a few days before the Alzheimer’s Association Public Policy Forum. We visited historic landmarks and attended services in the National Cathedral on Sunday morning. Cherry blossoms verged on blooming, and we couldn’t have asked for better weather.
Through past experience, I’ve found the most essential item for DC is comfortable shoes. Even with comfortable shoes, we managed to return each night with weary legs and aching feet. Everything in Washington DC is bigger than life—including the distance between buildings and monuments.
We joined more than five hundred advocates to bring passion to Capitol Hill. Twenty-four delegates from Missouri experienced the Alzheimer’s Association’s 21st Annual Forum. Four advocates in our group have been diagnosed with early or younger onset Alzheimer’s.
Mike Splaine, Alzheimer’s Association Advocacy guru, said because the Alzheimer’s crisis is gradual it is in danger of being overlooked. He said we needed passion and intensity to bring about change and take steps to make Alzheimer’s disease a national priority.
Maria Shriver, first lady of California, wasn’t satisfied to merely attend the forum—she wanted to experience the forum. She made her first appearance at the candlelight vigil Monday evening. After speakers passionately talked about their journeys, we lit our candles of remembrance and hope for a future without Alzheimer’s.
On Tuesday, Maria introduced a preview of an upcoming four-part HBO special about Alzheimer’s. The heartbreaking message ended with the word HOPELESS truncated to read HOPE.
Our group of 500 stormed Capitol Hill with purple sashes making us stand out from the crowd. We visited our respective senators and representatives to speak with one voice.
Our legislative “ask” was streamlined this year to three issues. Research was at the top of the list. We asked for an additional $250 million this year and another $250 million in 2010 to reach our illusive $1 billion goal. The annual total cost of Alzheimer’s is $148 billion. If $1 billion in research funding could reduce the annual cost by a small percentage it would be a wise investment.
Secondly, we asked for an Alzheimer’s Solutions Project Office. This office would be charged with leading a national effort to reengineer dementia care delivery.
We also asked for a phase out of the social security two-year waiting period for Medicare. Expensive diagnostic tests are sometimes delayed due to the waiting period. Early drug intervention may also be postponed past the time when it does the most good.
The “2009 Alzheimer’s Disease Facts and Figures” highlights the prevalence of the disease. Alzheimer’s is a family disease, and every 70 seconds another family begins this journey. Seventy percent of the 5.3 million Americans with Alzheimer’s are cared for by 9.9 million unpaid caregivers.
Alzheimer’s Statistics can be alarming, but personal stories are the heart beat behind the numbers. When a legislator looks into a caregiver’s sad eyes or into the confused gaze of a person with dementia, we become more than a number. We humanize the emotional and physical drain of a degenerative and fatal brain disease.
Jim was in a nursing home when I made my first trip to Washington DC. His dementia often made me feel helpless and hopeless. The trips helped rejuvenate my spirit and gave me purpose. I am friends with many amazing people that advocacy brought into my life. Being an advocate is personally rewarding and I believe it is important for those with Alzheimer’s and their families.
This was my ninth trip to Washington DC as an advocate. Jim died in 2005, but I continue to make the trip in his memory. Each year, when I prepare for the Public Policy Forum, I take my purple passion and pack comfortable shoes.
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