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