Tuesday, September 28, 2010

Doctors Age Just Like Everyone Else

Recently, my three-year-old grandson crammed a crayon up his nose and a specialist had to extract it. When my son told me about the incident, I said, “Kind of reminds me of the time I lost the pencil eraser in my ear.”

“Was that you? I thought it was one of your brothers,” he said.

I recall that experience vividly, considering I was only a second grader. My ear itched, and I used the eraser end of my pencil to scratch it. I noticed the eraser had fallen out of the pencil and looked all around my desk for it. When I couldn’t find it, I just assumed it had rolled out of sight.

A week or so later, I developed a terrible earache. Mom took me to our family doctor in Stover. Dr. Hoffa sat me on a table and pointed a bright light at my ear.

“Wow, that light is shining right through your ears and onto the wall,” he said.

I might have been only seven, but that didn’t seem right to me. “No it isn’t,” I said. I did roll my eyes around trying to see if the light really was shining through.

The doctor stuck some high-tech instrument into my ear, tweezers, I’m pretty sure. Then, he showed me the little pink eraser off my yellow No. 2 pencil. “You knew that light wouldn’t shine through because the hole was plugged up with this.” he said.

“I wondered what happened to my eraser,” I said.

“Why didn’t you tell me you had an eraser in your ear?” my mom asked.

“I didn’t know it was there!” I said.

The doctor gave me a sucker and sent me on my way. Dr. Hoffa was the only doctor I saw until I married and moved away. He eventually retired and developed Alzheimer’s before his death.

When Jim and I were newlyweds, our family doctor was Dr. Kirby who retired many years ago.

When a family doctor retires, patients scramble to find another doctor. It’s discouraging when you make call after call to hear, “We aren’t taking new patients.” You keep asking yourself questions: Will I have to resort to finding a specialist for each medical problem I have? How will I find a good cold and flu specialist? Is the emergency room going to be my primary physician?

A 2008 University of Missouri (MU) study predicts a 44,000 shortfall of family doctors by 2025. Jack Colwill, professor emeritus of family and community medicine at MU School of Medicine, attributes the shortage to retiring baby boomer doctors being replaced by younger doctors who specialize rather than go into general practice.

Given how difficult it has always been to find a family doctor, this is not a huge surprise to many of us. We have become a more mobile society and if we aren’t moving from place to place, our doctors are. Either way, it’s up to us to find a doctor that fits our needs.

Rural areas will be particularly hard hit. Programs are in place to encourage medical students to become general practitioners in rural areas. MU has programs to place students in rural hospitals for their residencies and pre-admits students each year from rural areas. The students admitted under these programs are more likely to practice family medicine in a rural setting.

Family doctors know who you are when they see you. Your family doctor knows your family history, as well as your medical history. When Jim began to develop dementia, our family doctor knew Jim’s forgetfulness was not normal for him.

There may not be too many old-fashioned general practitioners like Dr. Hoffa, but as long as kids have No. 2 pencils, we need family doctors.

Copyright © September 2010, L. S. Fisher
http://earlyonset.blogspot.com

Monday, September 20, 2010

The Dance and Memory Walk

The Sedalia Memory Walk was Saturday and the sea of purple shirts showed our community support for loved ones with Alzheimer’s. Our Memory Walk was fun with a cake walk, Don the Balloon Man, refreshments, door prizes, raffle items, and dance routines by the young ladies from Center Stage Academy. Smiles and hugs made the rounds as we connected with others who had walked a mile in similar shoes, helping lighten each other’s load for the journeys we shared.

“Do you remember me?” a lady asked. “I worked at Four Seasons Living Center when Jim was there.” Jim was at Four Seasons four years and although her face looked familiar, I couldn’t come up with her name. “I’m Pat,” she said. “My husband wound up in the same room Jim had in the Alzheimer’s unit.”

“I remember you were having problems with your husband. I’m sorry to hear he had Alzheimer’s.”

“Yeah,” Pat said, “one day the staff found him standing on top of the sink.”

I had to laugh about that one. “Well, Jim did a lot of things, but he never did that!”

“You know, you just have to remember the funny things that happened,” she said. I agreed. It is much better to remember the times we smiled than to think about the distressing times.

Just before we began the walk, our master of ceremonies, Terry Kelley, sang “The Dance,” and I walked up to take a picture of him. The song was so touching, I gave Terry a hug. The tears started flowing because the words of that song are so true for me and for millions of caregivers.

My cousin Reta had taken a picture too, and she pulled me into a big bear hug. Connie Pope from Fair View hugged me too and said, “Are you all right.”

I think through the boo-hooing I let her know I was. “It’s that song,” I said.

Connie said, “Look around, Linda. See all these people here today? They wouldn’t be here if it hadn’t been for you and Jim. You are the one that started this whole thing.” I may have started it, but Fair View has been at every Memory Walk since the first one I coordinated in 1999.

The teams were introduced, then Memory Walk Coordinator Sheila Ream and I carried the Memory Walk banner and led our walkers down Memory Lane toward the fairgrounds. Sheila handed off the banner to her son Phillip who has helped us throughout the year. As we rounded the corner and saw the long line of walkers behind us, Phillip said, “I’ve looked forward to this all year.”

While the prizes were being announced, we handed out purple and white balloons for the balloon release. We used a marker to write our loved one’s names on the balloons. I put Jim’s name in a heart and wrote “To heaven with love.” I tied the balloon onto a basket handle, and while I signed a book, Jim’s balloon broke away and raced toward the sky.

That afternoon, after a leisurely soak in the bathtub, I put on PJs and settled in for the rest of the day. I got to spend the evening with my two youngest grandkids. My three-year-old grandson played with his race cars, and shouted, “Start your engines!” Before when he played, he called his driver Josh, after a relative he has seen race, but after the Memory Walk, he said the driver was Jim.

As our grandson played with his cars, I couldn’t help but think how much Jim enjoyed his grandkids. Jim never got to meet the three-year-old that often talks about “Grandpa Jim” and even pictures his grandpa as the tiny driver in his racing game.

Jim and I parented two wonderful sons. Our four fantastic grandchildren bring so much joy to my life. When I look at my sons and my grandkids, I know it is best that I never knew the heartbreak early onset dementia would bring to our family. I’ve been blessed with love, and the pain diminishes when compared to the dance that forever lives in my memories.

Copyright © September 2010 L. S. Fisher
http://earlyonset.blogspot.com/

Sunday, September 12, 2010

Alzheimer’s Awareness - The Color Purple

I’ve always had a love affair with the color purple which worked well when I discovered it was the Alzheimer’s color. We are gearing up for Memory Walk so I’ve gotten into the spirit by painting my fingernails and toenails purple. Not just any purple—Xtreme Wear Deep Purple.

I dressed for church today in my “Walk to End Alzheimer’s” shirt and topped, or bottomed, it all off with my brand new purple high-heeled Crocs I bought at the Crocs Outlet in Branson.

It so happened that the air conditioning was broken so we shopped in heat more Xtreme than my nail polish. Perhaps, my brain was overheated when I fell in love with the purple shoes, or so my granddaughter seemed to think. She said the shoes were a little weird, but Crocs are comfortable shoes with cushiony padding underfoot that's a lot like walking around with a Memory Foam pillow tied to the bottom of your feet.

At church this morning during the “greet those around you” moment, the lady sitting behind me said she loved my shirt. On the way out the door, another lady admired my shoes.

“My granddaughter thought they were a little strange,” I admitted.

“They are such a fun color!” she said. I had to agree—but then they are purple slippers so gotta love ’em, right?

“They're comfortable too,” I added.

Getting into the purple zone is more than wearing the appropriate clothing and accessories. It is a time to fundraise and get out the word about the Memory Walk. On Labor Day, Jim’s Team raised $1,150 at our traffic stop.

Saturday some of us stood in front of Walmart handing out “Save the Date” cards and forget-me-not seed packets with the tiny sheets of paper stapled to it with walk information and contact numbers. We had a collection bucket available for donations, but our main purpose was to create awareness about the Alzheimer’s Memory Walk.

The Walk Committee has a busy week ahead. We plan to gather door prizes and last minute items. We will make a lot of last minute preparations so that everything goes smoothly on Saturday, September 18.

I’m trying not to panic because my books haven’t come in. Part of my sponsorship is signing and distributing Early Onset Blog: The Friendship Connection. The turnaround is usually a few days on book orders, but as of the last time I checked they were still “in production.”

A lot of work and planning goes into the Memory Walk and that cuts down on the chances of things going too wrong. Rain or shine, I know one thing for certain—a lot of people will be up early Saturday morning and head to the Fairgrounds for Memory Walk. Purple will be the color of the day when we grab up the banner and walk to end Alzheimer’s.

Copyright © Sept. 2010 L. S. Fisher
http://earlyonset.blogspot.com

Sunday, September 5, 2010

Labor Day: Happy to Be Busy

My mom and I recently entered a restaurant and while we stood behind the “Please Wait to Be Seated” sign, the hostess walked rapidly toward us, not letting her unusual gait slow her down. She approached us with a large, friendly smile that made her face glow.

“Two?” she asked. “How are you, today?” She struggled with the sentence.

“Fine,” I replied, “and how are you?”

“Busy!” she said, with that big smile that made you realize she wanted it that way. She was definitely busy, and as we ate our lunch, we watched her lead a steady stream of hungry people to their tables. She had found her niche. A job she was good at and took pride in doing well. It is encouraging to see people working despite an obvious handicap.

Many of us work because we have to, or as a woman I used to work with always said, “I’ve developed this really bad habit—I like to eat.”

With the Labor Day holiday, I couldn’t help but think about the 500,000 people with early onset dementia and how hard going to work each day can be for them. As dementia progresses, it erodes their self confidence as they struggle through the workday. Even getting to work can be a challenge once confusion sets in.

Unlike our hostess who had a lifetime to adapt to her challenges, people with early onset dementia find themselves in the frustrating position of losing skills that may have taken them to the top of their field. They may have skills and talents that identify their very personhood.

Jim dropped out of high school when he was fifteen years old. I once asked him how that was possible and he explained that his family followed the crops to find work. “We moved to a different state and I never enrolled in school again.”

Jim was a high school dropout, but he was an intelligent person. Later he would get his GED, but his forte was working with his hands. Jim never needed instructions to take apart and repair anything mechanical. Early in the disease when Jim was home alone while I worked, I never knew what he was going to try to “fix” during the day. One night I came home to find our VCR was completely taken apart and scattered all over the living room floor.

People with early onset dementia sometimes hide the diagnosis from their coworkers and bosses to remain in the workforce until the disease progresses to the point they cannot continue. Alzheimer’s is a slow process and depending on the proper regimen, it is not always necessary for a person to quit work immediately. It depends on the job and how accommodating the employer is. Perhaps a job can be simplified, or a person can be shifted to a less demanding position.

Each family struggles with what is best for the person with dementia. He may stubbornly refuse to admit he cannot do his job safely. I talked to a woman whose husband was a heavy equipment operator. He was the boss of his family business and was still working although his dementia was advanced. His son worked with him and knew that Dad was jeopardizing their business reputation and endangering both their lives on a daily basis.

Losing a long-term job can be emotionally and financially devastating for a family. When a loved one has dementia, the caregiver may have to quit work too. Early onset dementia takes a toll on every member of the family.

During the Labor Day celebration, take time to pause and think about all the people unemployed because of Alzheimer’s—those with the disease and those who care for them. It might make Tuesday morning seem a little brighter if you are fortunate enough to have a job. When someone asks how you are, you might reply “busy” and smile about it.

Copyright © September 2010 L. S. Fisher
http://earlyonset.blogspot.com