Once In a Lifetime

On Sunday, I was working at the Sedalia Business Women’s Chicken Dinner when I saw an elderly lady sitting all alone at a table. Unlike everyone else, she did not have a plate of chicken and trimmings in front of her.

She had a lost look, and instinctively I knew she had dementia. Concerned that she had wandered in and didn’t have a ticket, I walked over to her and asked, “Are you hungry for chicken?” I had already decided that if she didn’t have a ticket, I’d buy her lunch.

She smiled at me, tilted her hand back and forth, and murmured some indiscernible words. I smiled at her and walked to the ticket table.

“Do you know who that lady is?” I asked.

“No, but I think she has Alzheimer’s. Her husband is fixing her plate.”

I milled around, refilling drinks, cleaning trays and tables. Eventually, a lady walked up to me, read my nametag and asked, “Are you the Linda Fisher I saw in the paper that’s involved with the Alzheimer’s Association.” I told her I was. With tears in her eyes, she told me her husband had Alzheimer’s, and she had always wanted to meet me.

Later, another woman introduced herself to me to let me know a mutual friend had steered her toward my blog. Her husband, only in his sixties, had Alzheimer’s.

Eventually, I worked my way back to the table where the lady sat with her husband eating her chicken dinner. She spotted me and reached out to give me a hug. “I love you,” she said as she kissed me on the cheek. I hugged her back. When the hug ended, she kissed my hand.

Her husband smiled and said, “She thinks everyone is the Pope.”

I introduced myself and told him my husband had passed away at fifty-nine from dementia.

“Then, you understand what we are going through,” he said.

“Yes, I do,” I said. We chatted for a while about caregivers. He had just hired a new one. He was dismayed with the lack of help and support he had found. He told me he didn’t have a computer, I took his name and phone number to pass on to the Alzheimer’s Association.

It doesn’t matter where we are or what we are doing, the chances are good we will run into someone who has a personal connection with Alzheimer’s—people filled with questions and looking for answers. Caregivers muddle through the disease doing the best they can based on trial and error.

Unfortunately, when I look into the face of someone with Alzheimer’s or the faces of caregivers, I don’t have all the answers to their questions. All I can really do is offer hugs or hug back when I’m being hugged. Offer support and caring. Listen. Accept human flaws. Know that the worst response is indifference.

I’m thankful that these people shared their personal stories, and thankful for the opportunity to share a hug with a lovely lady who happens to have Alzheimer’s. I’m grateful for a glimpse into her life—learn she was once a teacher, know she has a life beyond the scope of the disease, and grateful she has a husband who fixes her plate and looks out for her well-being.

Alzheimer’s disease is as unpredictable as life itself. Each day is a new adventure and a new experience. Yesterday, I met a lovely lady named Alice, and just like in Lisa Genova’s book, she is still Alice. Thanks to her, a chicken dinner turned into a once in a lifetime experience of being mistaken for the Pope, and to share a few unforgettable moments with a loving, good-hearted woman named Alice.   

Copyright © October 2015 by L.S. Fisher

http://earlyonset.blogspot

One Big Fat Fib We All Tell

I was at Walmart yesterday and the lady checking my groceries asked, “How are you?”

“Fine,” I answered, “And how are you?”

Thank goodness, neither of us answered the question with great thought as to how things were really going. What if she had launched into a story about her husband’s cousin’s wife’s surgery with complete gory details while the person in line behind me tried to run over me with his cart?

About 99.9 percent of the time, if I ask how someone is, they reply, “Fine.” I noticed that Jim retained this “polite” conversational tool when his dementia was so advanced he could barely speak. If someone said, “How are you?” he would answer, “Fine.” He wasn’t able to verbalize just how awful his diagnosis was even if he’d wanted to share his state of being.

During the dark days when I was his caregiver, I never once answered a stranger’s polite inquiry with the truth. It was always the stock, and expected, answer.

Occasionally, you will get a more personal question, “How are you holding up,” from someone that knows the circumstances of your life. In that case, we might answer something like, “Things have been better.” Even with that hint of a problem, you might still go on your un-merry way to avoid sharing your problems.

I just saw a Wisdom Quote on Facebook that said, “The worst part about being strong is that no one ever asks if you’re okay. It is true that when someone is caring for a loved one with a serious illness, often people only ask about the person with the health problem. They don’t stop to consider that often the caregiver is exhausted physically and drained emotionally.

Most of us don’t like to be whiners. Plain and simple. Yet, there are those among us who love to whine. I do know certain people that I’ve learned the hard way to avoid the simple “How are you” question. These are the people who suffer the woe-is-me attitude if they have a hangnail. They will go on and on and on and on…then, when they have to “run” they throw off a casual “How are you” and walk away without waiting for an answer.

Even honest people tell this little white lie. I guess if you’re having a really bad day, it’s better than bursting into tears in the middle of the grocery store. No one wants to have a complete meltdown in public. Well, almost no one. Once again, there are those who try to get sympathy, or maybe a handout, from strangers.

It isn’t easy to avoid the pleasantries either. One day at a checkout, the young woman asked, “How are you?” I replied “Fine” as I tried to get the card to swipe. “I’m fine too,” she said. “Thanks for asking.” It sounded a whole lot like a rebuke to me for not continuing a pointless exchange. Or did she simply hear what she expected?

I plan to continue with social pleasantries, even when it’s a big fat fib—at least with strangers. With whiners, I might just say “hello” and avoid eye contact.

Copyright © October 2015 by L.S. Fisher

http://earlyonset.blogspot.com

October Fun: Ghost Tour

My grandkids are always wanting me to tell them spooky stories. I have several to choose from about my younger days when Jim and I managed to live in some scary places and had strange experiences galore.

It only stood to reason that when my mom, sisters, and I planned a girls’ mini-vacation at  Hannibal, a ghost tour would be on the agenda. In all my extensive travels, I had never visited the town that served as Mark Twain’s inspiration for Tom Sawyer.

We arrived in Hannibal at a good time to take a trolley tour to get the lay of the land. While we were waiting, a “Ghost Tour” sign caught our attention. We strolled inside and signed up for a tour at 7:00 p.m.

During the day, we rode the riverboat and still squeezed in a little shopping. My sisters and I bought vintage hats to wear on the ghost tour.

Our ghost tour guides, Ken and Lisa, asked whether we were more interested in history or ghosts. Our preference was both, so we heard about Hannibal’s rich history and haunted tales. During the tour, we stopped in front of several bed and breakfasts, an old church, and the Rockcliffe Mansion. Ken and Lisa had lived in the mansion and told us chilling stories of their adventures. Doors slamming and footsteps on the stairs would be enough to make me hide my head beneath the covers.

The mansion’s history is unusual. In its time it was the biggest and most opulent mansion in Missouri. Lumber baron John J. Cruikshank chose a spot already occupied by a mansion. He moved the offending house next door and eventually his daughter lived there. After Cruikshank died, his widow moved from Rockcliffe to her daughter’s home leaving nearly all her belongings behind. 

All that's left of the maps.

Rockcliffe  remained abandoned for 43 years, its windows broken out, and the rite-of-passage for teenagers was to go into the house to the third floor and rip off a piece of the map in the children’s room. I’m sure it was considered a sign of bravery to accomplish this route without freaking out. Although, the mansion’s ghosts are considered to be friendly, Casper-type ghosts, I decided that I wouldn’t want to spend the night there.

Our tour ended with a trip to the cemetery, spooky to be sure. Although I’d visited a cemetery on a previous ghost tour, it was not like this one. The other cemetery was in the middle of Boston and well-lighted. This cemetery was on the edge of town, no lights, and although it had been cleaned up, it was still an old, old cemetery with toppled stones around the fringes. We were furnished with divining rods and tiny two-inch flashlights. I wouldn’t touch the rods after we were instructed how to get yes and no answers because it reminded me of a Ouija board pointer. I’ve had some hair-raising experiences with Ouija boards and didn’t want to be calling up any spirits without Ghost Busters on speed dial.

The next day, after visiting the museum and Twain’s boyhood home, we toured Rockcliffe.  You’ve heard about pictures that have eyes that follow you no matter where you are. Well, there’s one of John Cruikshank that does that. I’m not ashamed to say that’s just a little bit creepy. After seeing the bedrooms, I’m sure I would not have had a restful night had we chosen to stay there. Old clothes, hats, and shoes in the closet made me think the lady of the manor might return to change her clothing.

To finish our journey, we drove into Illinois looking for Burbridge Cemetery where several of our ancestors are buried. We got lost. We finally asked a local and he directed us to it. My sister consulted her genealogy book and we found several graves listed in the book. We took photos and headed for home.

It is always fun to spend time with family. It’s something most of us put aside for the busy, mundane things we do in life. Sometimes, it helps to take a step back and think about how after we’re gone, a stone may be the only visible reminder of our time on earth. Someday, that stone may be part of a ghost tour and a tourist with a divining rod may be asking us yes and no questions. Wouldn’t it be so much fun to groan loudly and say, “Get your big fat foot off my head!”

Copyright © October 2015 by L.S. Fisher

http://earlyonset.blogspot.com

So You Had a Bad Day

Last week during the full-blood-super-moon eclipse, I discovered that I wasn’t my normal self. I woke up at 10:30 a.m. after an extraordinarily long night of nightmare infested slumber. To say I got up on the wrong side of the bed is an understatement—it was more like I got up on the wrong side of the house. Cranky, headachy, and on the verge of tears, it’s no wonder my husband retreated to his office for the day. His main goal of the day was to steer clear of the crazy woman in the kitchen.

There was no explanation for the way I felt. It just was, and it wasn’t going away. It all boiled down to simply having a bad day.

What causes us to have a bad day? Most of the time, it is because of external problems beyond our control that make us nervous or unhappy. Too often, we let the behavior of others ruin an otherwise good day. Someone makes a hurtful or disparaging remark that sinks its ugly roots into our self-esteem and the worry of its validity gnaws at our self-worth. Some bad days, like the one I had, are internal. An unsettling night that spilled over into the daylight.

Anyone can have a bad day, but people with dementia have more than their share. When you take into account their daily wrestling match with confusion and the other symptoms Alzheimer’s causes, it helps you understand how bad days can be plentiful.

The unfortunate nature of a bad day is that it can be contagious. When the person with dementia has a bad day, the caregiver has a bad day too.

So what the heck can you do about that? It’s hard enough to deal with yourself, much less someone else, when emotions are out of whack, common sense is on vacation, and patience abandoned ship. It’s time to give yourself a time-out.

Do something you really love to do, even if you can spare only a few minutes. Some suggestions: a half-hour comedy (I can’t possibly stay depressed watching the Golden Girls), read a magazine or a chapter in a good book, go for a walk, call your mom or a good friend, or bake cookies.

After your time-out, take a few deep breaths, and if you baked cookies, now would be a good time to have some with a glass of milk. Now you are ready to stay calm—the number one method for handling your loved one’s bad day. Hopefully, you’ve regained your ability to be patient, because you will need an abundance of it.

A good rule to remember is that what worked yesterday may not work today, so be flexible. Distraction is your friend. If your loved one is crying, or in a really bad mood, you may want to scoop up an ice cream cone. One thing that always worked with Jim was taking a drive. He loved getting in the car and heading down the road. An even better trip for him was when we stopped by DQ for a milkshake.

When a person with dementia has a bad day, it shows in his behavior. Though easier said than done, your best response is to address the emotion rather than the behavior.

There is no one cause for a bad day and there isn’t one solution. I think my bad day was the result of a bad night and, of course, the full moon. Probably the real reason is that I’m human with human emotions. So, I had a bad day. It wasn’t the first, and rest assured, it won’t be the last.

Copyright © October 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Family Matters

Jimmy, Tommy, Mitchell, Roberta, Linda, Mom, Terri

On a cold February night, just as we were going to bed, I casually mentioned to Harold that this was my year to host our family get-together. We used to gather on Thanksgiving at my mom and dad’s house.

After Dad died, and Mom sold the house to my brother Mitchell, we converged on them for several years until we made a change with tradition. We decided to pass the hosting around by going from oldest to youngest and decided to meet in September when the weather was better.

“When were you going to tell me this?” he asked.

“Oh, about August,” I replied. Harold is the planner. I, on the other hand, am a seat-of-the-pants type person.

Well, he wasn’t having any of that. After a barrage of questions about logistics, I finally suggested we have the event at the park so we wouldn’t have to find tables, chairs, etc. that he was worrying about seven months ahead of time.

By March, we had rented the shelter at the park and worked on a list of things to do. In addition to the place, the host family provides the meat, drinks, and table service.

The reunion was Sunday, and we couldn’t have asked for better weather. We were up at 6:00 a.m., and Harold was in drill-sergeant mode. Before I could get a cup of coffee, he was slicing up the pork loin we’d cooked the day before, and one of the huge hams he had bought for the occasion.

By the time we got the first ham in the roaster oven it was full. Harold was still fretting that we weren’t going to have enough meat. “That’s plenty,” I said. After all, Stacey was bringing two turkey breasts.

“This isn’t like the Fisher reunion,” I said. The Fisher reunion is for anyone with the last name, but this reunion is for our immediate family, children, grandchildren, and great-grandchildren. “We usually have about thirty people, not a hundred.”

He finally settled on cooking an additional three-pound ham, just in case. Then we fixed gallons and gallons of tea. Thank goodness, Rob came by with his pickup to help us load everything into his truck and our Tahoe.

On the way to town, I began to feel the excitement. Until then, I’d been too busy. I love spending time with my family, and don’t see them as often as I should.

Both my sons were there and my two youngest grandchildren. My two oldest grandkids work on weekends, but Whitney would be coming by on her lunch hour.

Rob set up a PC to play a CD made from a video of a Capps family Thanksgiving from the early 1990’s. Mom was taking a turkey out of the oven, and my husband Jim was running the video camera.

After everyone found the right shelter, we decided to go ahead and start eating. My brother Mitchell had not arrived, but was on his way.  Tommy asked a short blessing. “Wow, that must be the shortest blessing you’ve ever done,” I said.

“He’s still going on the videotape,” someone said. Sure enough, the CD was still rolling and Tommy was still asking the blessing. In all fairness, we used to update everyone on our family, and he had the largest family.

We visited and took photos of the brothers, sisters, and our mom. Marshall wasn’t able to come this year and our brother Donnie passed away Thanksgiving eve in 2012.

The time just flew by, and before it seemed possible, people were leaving. It had been a beautiful day to spend with people I love. Of all things in life, family matters the most.

Copyright © September 2015 by L.S. Fisher

http://earlyonset.blogspot

On the Inside

Our Walk to End Alzheimer’s was Saturday. Nearly a full year of preparation all came together for a flawless event. The one thing you can’t really control is the weather, but it cooperated in a big way. The day was gorgeous, and for once, I didn’t have butterflies worrying about whether it was going to rain…or be so hot that someone could have heatstroke.

Before the Walk, we determined the eldest walker (Uncle Johnny) and the youngest, Bella Howard, a sweet baby wearing a Fairview shirt. The best individual fundraiser, Jessica Snell, was announced. Trophies were awarded to Sylvia G. Thompson for best fundraising and largest team.

Jessie from the Greater Missouri Chapter surprised me with an award. She pulled out a photo collage that immediately brought back memories. She asked me to say a few words.

“They caught me off guard,” I said. Then, I became so choked up, I had to pause before I could continue. Normally, when I speak, I prepare myself mentally to keep the emotions on the inside. After a brief pause, I was able to thank the wonderful walkers and teams that have supported our efforts throughout the years. Then, I told everyone how important the Walk was to me personally and how it helped me through the tough times. It gave me a focus and a way to feel good about helping put an end to this awful disease.

The extra bonus for the day was that the weather was also perfect for the other two outdoor events I planned to attend. At three o’clock, my great-niece was married in the same locale where we held the walk—the Highway Gardens on the Fairgrounds.

Larry Cooper

The final event to end my day was to watch “Changed By Grace” perform at the Sedalia Rockin’ for Jesus show. Besides the spiritual implications of the evening, two of the band members happen to be my nephews Mike Munsterman and Larry Cooper.  

Mike Munsterman

I thoroughly enjoyed their uplifting performance and their testimonies. 

A song that really made me think about life was one  Larry wrote, “On the Inside.” The song is about how we work to have all the material possessions, but then fall into the trap of devoting our lives to gaining even more worldly goods. Looking successful on the outside does not necessarily make a person happy or feel good about how he got to that point in life. In the song, Larry shares the importance of living life in such a way that a person feels good on the inside.   

Mike, too, has found a way to feel good on the inside. He has put his life back together after losing his wife Krystal. He has made a positive impact on the homeless through Krystal’s Dream. Mike has traveled far and wide to provide shoes and socks to those who have fallen on hard times. Through his mission, he has taken a tragedy that could have broken him, and turned it into action to help others.

To feel good on the inside you have to find that sweet spot in your soul where love, peace, and spirituality come to life. The important times in our lives are the heart moments spent doing what we love and being with those we love.

Is there anything better than living life in such a manner that it really does make us feel good on the inside? Sometimes we just need to put aside the negative thoughts and pressures that daily life brings and focus on the positive, happy times that make us smile.    

Copyright © September 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Don’t Let the Rain Dampen Your Spirits

In “The Rainy Day” Henry Wadsworth Longfellow said, “Into each life some rain must fall.”  At times we pray for rain, the refreshing life-essential drops that come from the heavens to end droughts. Other times, when we have an important outdoor activity we don’t want it to rain. We wonder why it can’t hold off for just a while longer. Is that too much to ask?

Labor Day is our day for our big Walk to End Alzheimer’s fundraiser for Jim’s team. This was our 17^th year to do the “traffic stop.” It seems the day is usually unbearably hot, and this year looked to be more of the same. Then, the forecast called for heat and a chance of rain.

“Will you still do the stop if it rains, or will you reschedule,” my niece asked the day before.

“We can’t reschedule it. If it rains, we’ll stand in the rain. If we have a thunderstorm, we’ll wait it out in our cars,” I said. In all the previous years, we only had one rainy day. It was a blessing in disguise because the intermittent, gentle showers made for a cooler day.

As we began setting up our signs, a few gentle drops fell. Not bad, I thought. Suppose to last only a short while and move out. Soon, the rain began falling a little harder, and eventually, those of us who brought umbrellas stood beneath them. Only Shelly and Chris didn’t have umbrellas. Chris was wearing a raincoat, but Shelly just stood alongside the road with her collection can without protection against the rain that stalled over our heads.

I glanced down the street and saw a lady coming out of her house carrying a smiley-face umbrella. She talked to Shelly for a few minutes and handed her the umbrella. This woman had lived in the house for eleven years and noticed us every year and admired our tenacity to continue through the hot days in the past. She gave Shelly a donation and insisted she take the umbrella. The woman told Shelly that her sister was only in her fifties and had been diagnosed with early-onset Alzheimer’s.

The relentless rain fell on our “parade” until the last half hour. Water was running down the ditches, and the umbrellas didn’t keep the rain from soaking us. I didn’t mind the wet shirt and capris nearly as much as sloshing around with wet socks and shoes. Hey, it was still better than one-hundred degree heat. We didn’t let the rain dampen our spirits.  

In his poem, Longfellow isn’t speaking of physical rain. He is speaking of the dark times when we cling to the past and “days are dark and dreary.” It makes me think of a conversation I had with a caregiver recently. She was battling depression and felt overwhelmed taking care of her husband who has Alzheimer’s. Yet, while we talked, I could tell she had the courage and indomitable spirit to keep on keeping on.

We all deal with our own personal rainy days. Sometimes they are gentle showers, and we can just shrug them off. We can even soldier through those steady downpours without much ado. Then there are those times when the wind is gusting, the thunder is booming, and a torrential downpour flash floods all over our last ray of optimism.

Before you let rainy, turbulent times dampen your spirits, remember the sun is still above those pesky clouds. Sunshine after a rain is glorious; rays beam down like the word of God, and the rainbow promises better days to come.

Copyright © September 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Just Like the Good Old Days

A couple of days ago, Harold popped a big bowl of popcorn and we settled in front of the T.V. to watch the old episodes of Castle recorded on our DVR. I pushed the “on” button, and nothing happened. After pushing on/off/select numerous times, the most I could get on the T.V. was “no signal.”

Harold tried to reset the satellite receiver without success, so it was time to call DISH. After a half hour of trying this, selecting that, and retrying to acquire a signal, a heavily accented voice said they would be mailing us a new receiver.

After some tough negotiations, Harold convinced them they needed to send a repair person to come out and set up the new receiver. They will be here Tuesday. So without any other kind of reception, we are without a T.V.

Being without a T.V. isn’t so bad. It reminded me of the good old days when we didn’t watch T.V. in the summer because all programs were reruns. So what did we do without all the extensive programming on T.V.? Well, we read books and spent time outside. Thank goodness, I had a book on my Kindle to read, and I had gone a little overboard at Books-A-Million when I was in Branson.

The spending time outside has worked well. Friday, I spent the day with my mom and sister. We visited, ate at Country Kitchen. I didn’t miss T.V. at all. The real acid test was Saturday. As it turned out, my major complaint with Saturday was that there wasn’t enough time to take a break. We were up early and fixed a big breakfast—different from our routine of coffee and bagel in front of the T.V.  After a day of mowing, yard work, and going to town, the day was over, and I hadn’t gotten a single thing marked off my personal task list. Determined to at least get one thing checked off, I worked until nearly midnight. T.V.? What’s that?

This morning, I dragged myself out of bed for early church services. I wore one of my purple Alzheimer’s shirts and picked up a copy of Broken Road: Navigating the Alzheimer’s Labyrinth to give to Pastor Jim for being the inspiration for some of my blog posts.

As I walked into the sanctuary, they had me choose a rock. “You’ll need it during the service,” was the explanation. I was hopeful we weren’t going to “stone” anyone for his or her transgressions.

I go to contemporary services at the Celebration Center. We have a band and the lyrics to our songs are displayed on a screen.  One of our pastors, Nick, brought a message about the traditional Methodist Hymnal and the “rules” for singing the songs. The rules included learning the tunes, singing them exactly as they are written, everyone should sing (take up your cross and bear it, if necessary), sing lustfully (not as half-dead or asleep), yet modestly without destroying the harmony, keep time and sing with the leading voices, and most of all sing spiritually.

Hymnals have the traditional hymns that we sang back in the “good old days.” After the message from 1 Samuel about a stone he called Ebenezer, we sang a traditional hymn, “Come, Thou Fount of Every Blessing.”  The women sang the melody and the men repeated a line. It was really quite beautiful, and I think John Wesley would have been proud.

One of the lines in the song is, “Here I raise my Ebenezer.” As we sang the song, we came forward in the same manner as communion and placed our rocks on the altar. It was a touching moment that made me feel like I’d taken a step back to another, simpler time.

Maybe the “good old days” weren’t always good, but something about them tugs at the heart. It’s the place of our memories and the roots of our traditions. Those were days when we were young and full of hope.

Taking a step back for a few days is a welcome relief. Soon, very soon, I’ll be ready to return to watching my favorite programs, but for now—I’m doing just fine without T.V.

Copyright © August 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Like a Bridge Over Troubled Waters

Rob popped in another video to dub. Christmas, 1991. Jim and his brother Billy began to sing “Bridge Over Troubled Waters” in their close harmony. My heart stopped to hear his voice, see him on the somewhat grainy film—standing straight, playing his classic Fender guitar.

Watching our home videos made me laugh and made me cry. Jim narrated as he filmed everything around him for “posterity.” No event was too small or insignificant. He chose who he was making the video for and encouraged everyone to say “hi” to that person. One tape was for his brother Bob, “and Barbara, too,” he added when he remembered he hadn’t mentioned her. A Thanksgiving tape at my mom’s house was specifically for my brother Jimmy who was in the Navy in California.

“Did Dad ever send these videos to the people he made them for?” Rob asked me.

“No. That’s why we still have them,” I said. One time after he became confused, Jim made an audiotape for his cousin Leroy. His mom saw him walk out to the mailbox and raise the flag. Curious, she went out to see what he was mailing. Inside the mailbox was a cassette tape with “for Leroy” written on it. No postage. No wrapping. No address.

Jim’s personality and humor uplifted the videos to an experience. Most of Jim’s family loved the camera. His uncles and cousins would ham it up in standup comedian mode. Uncle Jewel described his many personalities and mashed his face flat in one video. Jim interviewed his cousin Buddy about the lady ranger bawling him out over not coming to a complete stop at the campground’s exit. “Don’t they have stop signs in Missouri?” Jim asked.

The highlights of the old home videos are family gatherings. Houses and yards overflowed with family. Guitars, fiddles, microphones, and amplifiers were dragged out for impromptu family concerts. Everyone had their “special” songs to sing and requests rang out from the audience for their favorites.

I loved being able to see and hear Jim tell his corny jokes, tall tales, but most of all, I loved to hear him sing. I watched the tapes of him singing through blurred eyes. He and his brother Billy sang several songs, and the song “Bridge Over Troubled Waters” was almost prophetic. It told of comfort, friends, dreams, and having that person to hold you up when times are rough. More important it told the kind of man Jim was. He was always on my side. He was my husband, my friend, my bridge. He encouraged me to shine.

In addition to stealing Jim’s musical talent, dementia stole his voice. It seems like a small miracle to hear his voice after all the years of silence. When the darkness of dementia fell he was no longer able to dry my tears, or be my bridge. I had to find my own way back into the light.

It was almost twenty years ago when we learned the hard truth of dementia. We made the most of the time we had until the journey ended April 18, 2005 when Jim was 59 years old. Thursday, August 27, would have been Jim’s 70^th birthday. It would have been a day of celebration, but now it is a time of remembrance. And gratitude for the adventures we shared.

Jim is gone from our world, but his essence lives on the videotapes and in his children and grandchildren. Last week when Whitney pulled out her ukulele, her mother said, “Your Grandpa Jim could have taught you so much.” Just like her grandpa, she is collecting different instruments to play. When I see Whitney’s short videos online, it makes me think that her Grandpa Jim would have been capturing every moment he could for “posterity.”

Music and family were the great loves of Jim’s life. We are fortunate to have those magical memories stored in our hearts and on the old videotapes.

Copyright © August 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Walk the Walk, Talk the Talk

Jessica Snell, Sedalia Walk to End Alzheimer’s co-chair, and I were at the radio station Tuesday morning to talk about the Walk to End Alzheimer’s. We were armed with the names of our sponsors and teams, goals, and statistics. It’s always a pleasure to be on the air with Doug, and even better to record the program for broadcast the next day. When you are on the air live, you just have to go with it, but when the program is recorded and your tongue gets tangled, you get “overs.” We all need overs from time to time.

I’ve been involved with the Walk since 1998 and during that time, I’ve seen a lot of changes. The first year, I raised $400 and Jim and I walked with a handful of people. For the next five years, I was the coordinator, or Walk chair, of our local Memory Walk. At that time, our logo was the word “Alzheimer’s” with the “H” being two people, leaning. The Alzheimer’s Association was well known as “Someone to lean on.” The Walk began to draw hundreds of walkers.

For the next five years, Shelley Spinner coordinated our Walk and I backed off the committee to make sure everyone saw her as the leader of the group. She did a great job of keeping the Walk exciting and fresh. I was able to concentrate on being captain of Jim’s Team. Following her, Lisa Hayworth led the Walk committee for two years. Lisa had no experience or help. At that time, my sister-in-law Ginger and I went back on the committee, and we’ve remained on it since then helping Sheila Ream.

Some things change and others remain the same. The Alzheimer’s Association changed the logo to the current one and “Memory Walk” to Walk to End Alzheimer’s. Some of the format has changed. The Promise ceremony has been added and it encompasses the different ways that Alzheimer’s affects us. Our local chapter has changed names from Mid-Missouri to Greater Missouri, merged with the Southwest Chapter, and became a national chapter. What does this all mean? We still have chapter offices where they were located previously and the Alzheimer’s Association still provides the personal service that helped me throughout the years when dementia ruled our lives.

Another change I’ve seen over the years is how people have become more knowledgeable about the disease. When I first approached area businesses in 1999 for corporate sponsorship, no one seemed to know much about Alzheimer’s. Now, everyone seems to know a few basics. A lot of credit goes to the Alzheimer’s Association for raising public awareness.

The Walk is about people. It is a time to show care and concern for those with the disease and their loved ones. It is a time when everyone puts aside their differences and embraces the opportunity to support their friends, neighbors, and relatives who are dealing with Alzheimer’s. We have teams with different names, but in essence, we are all one team. Competition is fierce, but friendly. I celebrate the teams that raise more than our team.

When I was coordinating the Sedalia Walk, I became friends with Ted Distler who coordinated the Jefferson City Walk. We “trash talked” each other all the time about which town was going to raise more money. In truth, it was all in competitive fun, and we supported each other at fundraisers. Ted would drive to Sedalia for our Dance to Remember, and I’d drive to Jefferson City for their Chicken Dinner. We had the same connection to the disease and the same passion for doing what we could to help other care partners and persons with dementia.

What people don’t understand is Walk to End Alzheimer’s is a fun event. Yes, it is sobering at times when you hear the stories of the participants, and the flower ceremony is touching, but knowing that you are doing your part is heart lifting. Smiles, laughter, and love are the order of the day. You don’t want to miss it or you’ll have to wait another year. From babies in strollers to seniors in wheelchairs, we lend support and lean on each other to end Alzheimer’s.

Copyright © August 2015 by L.S. Fisher

http://earlyonset.blogspot