Wednesday, November 25, 2015

Welcome to My World

Volunteer Pumpkin
Still dressed in my PJ’s and first cup of coffee in hand, I headed toward my downstairs office yesterday morning. Harold had already forewarned me that as soon as the weather was warm enough we would return to painting fence posts and rails. I was determined to get an early start on my blog.

I sat in front of my PC trying to decide if I dare jump into writing my blog post, or if I should tackle my To-Do list first. I balanced the options in my head. If I worked on my To-Do list, I would be jumping from task to task spinning my figurative wheels in an attempt to multitask my multitasks. Hours would fly past while I whittled down my list only to add more. The list has a life of its own and is never ending.

Blog—a firm decision. I should have done it Friday, and here it was Tuesday so I was already four days behind. My quandary helped me decide on the title: “Welcome to My World.”

I placed my fingers on the keyboard and noticed my nail polish was worn and chipped. I would have done them Monday before the Alzheimer’s Board meeting, but the power was out when it was time to get ready and still out when I should have been done. Just as I had thrown everything in the car to go to the other house to shower, the power came back on.

I typed the title, and my phone sounded an alarm. Ignore it, my left brain said. Better look at it, my right brain replied.

Curiosity won. Hair appointment: 10 a.m. What? Well, that’s just dandy. Here it is 9:30, and I have to be dressed and in town in thirty minutes.

I abandoned my first cup of coffee and ran up the stairs knowing I’d need to be dressed in record time. Short of breath, I rushed into Harold’s office to tell him the good news. I threw on clothes and a little makeup. No need fussing with my hair—that’s my hairdresser’s job. No need for earrings—they would just get in the way.

After getting my hair cut and styled, I made a quick trip to the grocery store. As I put the groceries in the car, I saw the box of sponsor T-shirts in the backseat. It was a perfect day to deliver them, but too warm to leave groceries in the car. Besides, it was time to get home and paint. At least my hair looked great until I put on the paint mask and pulled the elastic to the back of my head.

So, seriously, welcome to my world. But then again, I think it’s everyone’s world now. I don’t hold the patent on crazy, busy days. Looking back on my life, it seems it has always been that way. When my kids were little, days blurred into weeks, into months, and years until they weren’t little anymore. Then, Jim became more dependent on me to provide his essential care. I became immersed in caring for him and added volunteering for the Alzheimer’s Association to the To-Do list.

As if working, being a caregiver, and volunteer work wasn’t enough, I went back to college. How did I do it? I have no clue. I just took it a day at a time. Heck, sometimes it was minute to minute.

I wonder how any of us do it. Do we take on more than humanly possible, or are we just making the most of the time we have allotted to us? Are we doing the things we love, or are we fulfilling obligations and pushing aside what we really want to do?

The bottom line is that it’s all about balance. I don’t want to be the kind of person that blows off obligations, but I don’t want to be the kind of person that only has time for obligations. I don’t mind standing in the freezing cold to ring the bell for Salvation Army any more than sitting in the comfort of my home writing a press release for scholarships.

Variety is as important as balance. This is how I’ve chosen to live, so I’m sharing, not complaining. I’ve been blessed in so many ways and am thankful for the world I’ve been given. I appreciate life’s special surprises, like the imperfect, but determined, volunteer pumpkin that grew in our yard this year. With a smile, I welcome you to my world.

Copyright © November 2015 by L.S. Fisher

Saturday, November 14, 2015

November Is Alzheimer's Awareness Month

Linda Fisher and Janna Worsham at Coffee with Congress
The month of November is a month of pumpkins, fall d├ęcor, thanksgiving, and the onslaught of the Christmas season. It is also Alzheimer’s Awareness Month.

I recently attended a “Coffee with Congress” at Provision Living Center in Columbia. I consider this as a “kickoff” to Alzheimer’s Awareness month.

It probably should have been called Coffee with Congress(ional) staff. Newbies to advocacy often become irate when they think they are going to talk to a member of Congress and instead talk to a staff member. I’ve seen perfectly capable advocates waste an opportunity to wholeheartedly share their message. Staff members are focused on what you have to say and they will share the relevant information with their boss.

In this instance, we met with three staff members. I had a great visit with Janna Worsham with

Congresswoman Vicky Hartzler’s office, Sarah Barfield Graff with Senator Roy Blunt’s office, and Kyle Klemp with Senator Claire McCaskill’s office. We talked about funding for Alzheimer’s research and thanked them for their support.

We are proud of our Missouri group. Senator Blunt has requested $350 million additional funds for Alzheimer’s research. That was $50 million more than our ask. Senator McCaskill is the top ranking democrat on the special committee on aging. We saw her in action at the Alzheimer’s Public policy forum when she joined Chairman Susan Collins (R-Maine) to head a bipartisan hearing focusing on the financial, economic, and emotional challenges facing those with Alzheimer’s disease and their families.

In addition, I wanted to thank Congresswoman Vicky Hartzler for her unwavering support for Alzheimer’s research. One year when we brought a letter asking for a modest increase in Alzheimer’s research, she had already sent a request for $1 billion. She also uses Facebook, Twitter, and her newsletter to create her own storm of Alzheimer’s awareness. She and I connect on a personal level because we know the heartbreak of losing a loved one to dementia.

We also discussed the HOPE for Alzheimer’s Act and the asset the Act would be for families dealing with the disease. The Act is a common sense approach to providing Medicare coverage for comprehensive care planning services for newly diagnosed individuals and his or her caregiver, ensure that a diagnosis and care planning are included in medical records, and to require the Department of Health and Human Services to educate providers about the benefits.

As a caregiver, I kept track of Jim’s medical conditions—symptoms, diagnosis, tests run, side effects of prescription medications, and any information relative to his health. I took prints of the spreadsheet to every appointment. This kept him from being prescribed medications that he couldn’t take, duplication of tests, and helped me fill out all those darned forms. What happens to the people who don’t have someone to tell every specialist what others have done? The HOPE Act doesn’t have a “Score” which is an indication of what it would cost the government. Somehow, I think that instead of a cost to the government, it would save patients and the government by reducing duplication of services or writing prescriptions for medicine that has already created problems.

We heard caregiver stories including a care partner who was there with his lovely wife. He told of their problems with getting a diagnosis of early-onset Alzheimer’s. I shared some of my caregiving experiences. Several Greater Missouri Chapter staff and Board members were present to tell their stories and share their passion.

The meeting was informative, encouraging, and relevant. Those of us attending the Coffee with Congress left with a conviction to do everything within our power to end this horrible disease. We look forward to the day that Alzheimer’s becomes a manageable disorder, or better yet, is irradiated.


Copyright © November 2015 by L.S. Fisher


Sunday, November 1, 2015

Turn Back Time

Today we turned back our clocks one hour. My cell phone and computer both did it for me, but the dozen or so other clocks remain an hour ahead until they are changed.

I always remember which way to turn the clocks by “spring forward” for daylight saving time  and “fall back” to return to standard time. In one place I saw it referred to as “turn back time.”

Turning back time is completely appropriate for another reason than standard time on November 1. This is the day after Halloween and the religious holiday of “All Saints Day” or as it is celebrated in some countries, “Day of the Dead.”

Is there any better way to turn back time than to remember those who have already passed away? It’s strange that I’ve never thought of this day as the Day of the Dead and never knew much about that tradition. On this day, millions of people will make annual pilgrimages to cemeteries and churches. Graves will be decorated with offerings of sugar skulls, flowers, or favorite food and beverages and prayers are offered for the spiritual passing of loved ones.

Although I never celebrated the Day of the Dead, for some reason the past week has been an extreme time of reflection for me. On the drive back from my Alzheimer’s Board Meeting, I found myself reminiscing during the hour-long drive over and, again, on the way back.

Who would think something so simple as rolling dips in the road could bring back a vivid memory? Jim used to hit those dips fast enough that my stomach would feel funny. I drove past the house on Newland hill where we lived when our kids were little. I thought about them standing at the end of the driveway waiting for the school bus. I remembered Christmas, Halloween, and sitting around the dinner table. I remembered bits and pieces of the life we once had before time marched on.

I passed the turnoff to Arrow Rock and thought of the good times we spent there. Remembered the time Jim wandered off during the festival and it took my sister, her husband, and me some scary moments before we found him.

Even before I drove past the cancer hospital, the drive alone made me think of taking my co-worker and friend, Diane, to Columbia for her treatments. That’s a double or triple memory. Diane’s favorite holiday was Halloween and it was with great sadness that the cancer took her on that day.

It is not unusual for a cemetery to evoke memories of loved ones buried there. When I passed Hopewell, my thoughts turned to Frank and Dorothy that we rented from when we lived on Newland Hill. I thought of Aunt Addie who wasn’t my aunt at all, but a wonderful woman who made the best of life in a wheelchair.

I’ve spent most of my life living within seven miles of where I live now. It is no wonder that every curve, hill, and landmark makes me think of the people who have passed through my life, influencing me, making me the person I am today.

If we really turned back time today—not just for an hour, but could turn it back to a different time, it might not be the miracle that we would envision. Just think, one small change in our past would bring us to an entirely different destiny. We could drive ourselves insane with a thousand what ifs.

When a loved one dies, they take a part of us with them, but they also leave part of themselves behind. We are left with memories, and we are changed. Remembering good times is a way to appreciate the gift of  love. A productive, happy life is based on what we were, how we cherish what we are now, and the audacity to believe the future will be filled with hope, happiness, and adventure.       

Copyright © November 2015 by L.S. Fisher

Monday, October 26, 2015

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 and 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. She  teared up and told me that 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 who are 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

Wednesday, October 21, 2015

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.

Even 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 just 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 often 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 not ask 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 the expected 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

Tuesday, October 13, 2015

October Fun: Ghost Tour

My grandkids are always wanting me to tell them spooky stories. I have several to tell them 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 pretty 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

Monday, October 5, 2015

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 just 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 can spill 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 you must be flexible. Distraction is your friend. If your loved one is crying or in a really bad mood, maybe this calls for an ice cream cone—or playing fetch with the dog. 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

Monday, September 21, 2015

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’m 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 it 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