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Sunday, December 27, 2009

Wrap It Up

There has to be a scientific explanation why time goes by faster as we grow older. Maybe we just gain momentum and pick up speed as we race through life.

Another year is almost gone, and we individually and collectively reflect on it. TV tributes abound for famous people who died this year: Michael, Farrah, Bea, Eunice, Ted, Walter, Soupy… Everyone that touches our lives becomes part of us. Sometimes we take celebrity deaths personally, but grief over a superstar is only a fraction of what we feel when something happens to loved ones in our inner circle.

When I was a primary caregiver, the days felt like they had too many waking hours and not nearly enough sleeping hours. Yet, I wanted to grab time and slow it down. Time was the enemy during Jim’s slow, steady decline into the land of dementia.

Like it or not, our world changes every day. My son told me a few nights ago that I should get a texting plan for my cell phone. I do something really weird with my cell phone—I talk on it. I believe a conspiracy is afoot to force me to get with the program. I haven’t had this much pressure since the kids were embarrassed about the dial telephone hanging on the kitchen wall.

My phone has been out since Christmas day, but I have my cell phone to keep me from feeling cut off from the world. I don’t have Internet because I’m on dialup. I can live without checking my email, commenting on Facebook, or even posting my blog. It’s an inconvenience, but I’m not losing any sleep over it.

Our changing world has made us dependent on the World Wide Web. How did people find destinations before GPS systems or Google Map? It is eerie to plug in an address and see images of your house on the screen. Well, they haven’t mapped out here in the boonies where I live, but my son’s house is not only pictured, you can see their mower kicking up grass clippings. You can become a little figure and walk through the neighborhood.

My granddaughter was playing with Goggle Map and found herself in Hawaii. “Can you find Fort DeRussy Chapel?” I asked. We walked through the surrounding neighborhood, and I saw a lot of familiar landmarks—including the Ilikai where Jim and I spent our honeymoon.

Maybe we should all just become virtual tourists. Think of how much stress, strain, time, and money we could save. I get emails daily about upcoming net meetings. People work from home, and come Monday, I’m going to be mighty jealous of them.

Embracing change and moving forward is the secret to a happy and productive life. We can’t live in the past, but the past lives in us.

We each produce, direct, and star in our own reality show. We faithfully tune in each day to experience the next installment. Life, like any good show builds on the previous episodes making the plot more intricate. Characters worm their way into our lives, and we love them just as they are. Once we accept their flaws, we find them endearing.

When we wrap up the past, we open endless possibilities for an unfolding future where adventure waits to happen. In life, we can’t fast forward through the bad parts or play the good times in slow motion. We should grasp each moment, and live it to the fullest.

I don’t know about you, but I’m looking forward to the New Year just as eagerly as ever. I hope your reality is filled with health, happiness, and love.

Sunday, December 20, 2009

Sparkle Bright with Fairy Dust

If I hadn’t been so busy the week leading up to our family get-together, I would have been better prepared. I spent my day off this week writing articles about Alzheimer’s, so my “to-do” list turned into the “didn’t-get-done” list.

Saturday, I woke up at 6:30 with the idea of getting an early start. My philosophy turned into what gets done is done, and what doesn’t just will not happen this year. While I jumpstarted myself with coffee, my daughter-in-law made biscuits and gravy for breakfast.

My granddaughter stayed with me while the rest of the family went to town. I wrapped presents behind closed doors and handed her gifts to place beneath the tree. I vacuumed and worked on laundry. My granddaughter helped me fold clothes, sort through paper plates, and bring up more decorations from the basement. “Grandma Linda, you sure have a lot of stuff down here,” she said. She read from labels on plastic storage boxes, “Here’s Thanksgiving, St. Patrick’s Day, and more Christmas.”

The day flew by, but when the rest of the family arrived everything was ready. My youngest granddaughter was Santa’s helper and distributed gifts. My four grandchildren range in age from 2 to 15, and have a variety of interests. The older two prefer doing their own shopping so it made more sense to give them pre-paid credit cards. Santa’s helper prefers Barbie dolls and princesses. My youngest grandson likes trucks and cars.

In the midst of tearing Christmas paper and prying gifts out of the packaging, shiny pieces of foil flew from the Peter Pan book and sprinkled the carpet. “Ooops! Glitter is all over the floor!” my niece said.

“That’s not glitter, that’s fairy dust,” I replied. “Cathy Rigby put it inside the book when she signed it.”

Cameras flashed as we captured moments—revving up Monster Trucks to jump Matchbox cars and assembling the Barbie TV Cooking Show set. It’s hard to believe that Barbie can cook in those high heels and wearing that mini skirt.

After we—I mean the kids—played with their toys for a while, everyone began to gather up paper, boxes, and debris scattered throughout the house. A heroic attempt was made to scoop up the fairy dust, but it was everywhere so I volunteered to vacuum later.

Considering the chaos yesterday, everything is remarkably back in order. I have a lot of leftovers, but microwaved biscuits and gravy hit the spot.

After church this morning, I switched on the fiber-optic tree, put my feet up and read the paper. I haven’t vacuumed yet, and fairy dust winks at me from the carpet. Yesterday my house was filled with love and laughter. Today is silent, peaceful, and a time to reflect on all the magic that has graced my life.

With family time behind me, Christmas seems to be over. The bright sparkle of fairy dust and the lighted tree remind me that Christmas isn’t just a “holiday season”—it’s a way of life.

Sunday, December 13, 2009

Alzheimer’s Support Group: HBO Screening

We watched Momentum in Science Part II at our last support group meeting. When a new person entered the room and introduced herself, she said, “My dad is in the film.” She didn’t know if he was in the segment we were going to watch. I sat close to her and ask her to let us know if he was in this segment. Toward the end, she said, “That’s my dad.”

I had watched the entire HBO Project before, but picked up more information from the second viewing. An interesting chapter in this part was the DeMoe family story. Six siblings are being studied to try to learn more about familial early-onset Alzheimer’s. Out of the six, only Karla does not have the gene that will cause the type of Alzheimer’s that ended their father’s life at age 58. My heart ached for the five with the disease, but the saddest person was Karla. She has taken on responsibility for her brothers and sisters and already misses them as they spiral into the Alzheimer’s abyss.

Researchers believe they can find more effective treatments and possibly an immunization. The immunization trial was put on hold after some of those studied developed encephalitis. Immunization showed promise. It did a marvelous job of removing plaque, one of the hallmarks of Alzheimer’s.

When we think about diseases that have been eradicated by immunization, it would seem this would be the best case scenario for Alzheimer’s. It would certainly mean a life-changing difference for families like the DeMoe’s who have a new generation with a 50/50 chance of developing Alzheimer’s.

Dementia is devastating for the entire family. Karla is as much a victim of Alzheimer’s as her siblings. She is more aware of their personality erosion than they are. Her siblings will make peace with the disease, but Karla has already begun to grieve their losses.

Each person with dementia is an individual whose life has been decimated. The effects of Alzheimer’s types of dementia explodes outward with the power of a bomb blast and attempts to destroy the lives of those closest to ground zero.

My life was forever changed with Jim’s dementia. And as heart wrenching as Jim’s disease was for me, I think about the DeMoes and my friend Karen Henley whose husband Mike has familial Alzheimer’s. Karen’s life has been forever changed by her husband’s illness, and she must carry a burden in her heart for the possibility that her children may not be safe from the same disease. How much lighter would her burden be if an immunization could protect her children?

During discussion following the screening, we talked about some of the people who had taken part in experimental treatments. The immunization study consisted of giving several small doses of the drug. One woman whose husband received the injections said, “People kept asking how he was and we would say he is holding.” Holding is about as good as it gets with Alzheimer’s. The couple was disappointed and angry when the treatment ended.

Jim was on an experimental drug. I asked my sons for their opinion before enrolling Jim in the Phase III trial. My youngest son said, “Dad would be the first person to want to try it.” Jim was on the drug several months, but it had too many side effects and was never approved.

“My dad has changed so much since the film was made,” our guest at support group said. “He is frailer now.” I knew what she meant. Over the ten years Jim had the disease, his physical appearance changed dramatically.

Families like the DeMoes and Henleys are in the minority. Most people do not know the reality of living with dementia until it strikes their family. Jim was the first and, thankfully so far, the only person in his family to develop the rare form of dementia he had.

According to the film, Alzheimer’s is the second most dreaded disease after cancer. More than five million Americans have Alzheimer’s and the number of cases is expected to double every twenty years. Researchers are exploring many promising avenues, and work diligently toward changing Alzheimer’s from a hopeless disease to a manageable one.

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For information about drug trials or to become Alzheimer’s advocate visit www.alz.org.

Sunday, December 6, 2009

Widows Don't Wear Black

Tuesday was my first day at work after a week’s vacation. When I opened my mail, I saw an advertisement that Senator Jean Carnahan would be at Sedalia Book and Toy to sign The Tide Always Comes Back. I had met her during my annual pilgrimages to Washington DC for the Alzheimer’s Association.

On the drive to the bookstore, I scolded myself for giving in to temptation. Hadn’t I spent several hours cataloging more than 250 books in my home library the day before? Didn’t dozens of unread books sit on my shelves? No amount of mental chastisement kept me from being one of the first people in line to buy the former Missouri senator’s book.

Jean became an accidental senator when her husband was elected to that office posthumously. Taking office so soon after her husband’s death in a plane crash, Jean jumped into the challenge of representing her state and didn’t dwell on widowhood. In The Tide Always Comes Back she wrote: “Sure, I’ve checked those marital status boxes on printed forms, but I have never thought of myself as a widow in the traditional sense. For so long, society has identified widows as poor, sniveling souls unable to face the world.”

I read this passage to Brenda, a co-worker who was recently widowed. “I just filled out a form at the doctor’s office and wondered why they needed to know that I was a widow. I almost didn’t mark the box,” she said.

The average widow is fifty-five years old and remains a widow for fourteen years. Seven hundred thousand women are widowed each year. At one time widowhood was a way of life, but modern women do not wear black for a year and enter into a dignified state of mourning. The truth is most widows are back on the job shortly after the funeral. We see strong women reel, fall to their knees, and then bounce back at astonishing speed.

Many people read my blog and do not realize I am a widow. I interject stories about Jim and caregiving so that others may benefit from our experiences. When I think of widows, I remember Jim’s reaction after his Aunt Mary, and then his mother, were widowed. “I think widows are secret gadabouts,” he said. His theory was reinforced when my mother was widowed a few months later.

Not long ago, my mom and Aunt Labetta dropped by work to visit me. Aunt Labetta put her arms on our shoulders and said, “Here we are—three widows.” It’s strange to think of myself as a widow and it’s not easy to identify either of those two active, laughing women as widows. They travel, occasionally make a run to the casino, and play guitars together.

I don’t know any traditional widows. The widows I know are resilient and unafraid of life. Often, death of a loved one reinforces the importance of living life to the fullest. Marriage that lasts until “death do us part” leaves a sense of fulfillment.

The years Jim and I spent together will always be a major part of me. The give and take of marriage, the ups and downs, and Jim’s devastating dementia have shaped my personality and endowed me with a life’s mission. I do not write about Jim and the life of a caregiver due to unrelenting grief. Writing about life helps me heal and gives me hope that my future is full of adventure, excitement, accomplishment, and love.

The traditional widow is a stereotype. Like Senator Carnahan, I do not think of myself as a widow. I think of myself as a woman who was fortunate enough to have enjoyed enduring love, suffered great loss, and rebounded to a full rich life.