Monday, January 22, 2018

Sweet Memories

The first thing I saw on my phone this morning was a video in my “memories.” That simply means that I had posted the video in the past. The video of Jim and his brother Billy singing “Bridge Over Troubled Waters” was posted in 2015.

When these memories pop up, you are given an option to share. I hadn’t even gotten out of bed this morning when I shared the video. At night, I turn the sound off on my phone so I didn’t listen to the video before I shared it. Besides, I had to get up and around to have breakfast and go to line dancing exercise class.

After a good workout this morning at line dancing, I chatted with a few of my friends as I made my way to my car. I took my phone out of my purse to check for text messages. I was expecting a list of items to get at Walmart since we tend to make every trip to town count.

While I had my phone in hand, I decided to listen to the video. Soon Jim’s voice filled my heart as memories flooded back. I thought about all the jam sessions. I smiled at the memory of the house bursting with company and the sound of guitars and harmony. Happy memories and sad longings flitted through my mind. Happy won out as the video finished. I was glad to have this reminder of our younger days, before we knew our future held the unimaginable.

I fastened my seatbelt and headed to Walmart. I called Harold on my hands-free phone to see if we needed anything besides milk and eggs. Somehow, I knew there had to be other items to add to the list.

After he thought for a few minutes, Harold started naming off item after item. “I’m driving and you know how my memory is,” I said. “I’ll forget half of what you told me.”

“Just go down every aisle and that will remind you.” Thank goodness, he couldn’t see me roll my eyes. I avoid all the aisles I can.  As soon as I parked my car, I found an old sales receipt and started listing everything I could remember.

I picked up the eggs and was headed for the dairy section, when a Walmart employee paused in unpacking a box to say, “Excuse me. May I ask you a question.”

“Sure,” I said. I pushed my cart out of the way of the other shoppers.

“Is your last name Fisher?”

“Yes, it is.”

She smiled. “I took care of your husband!” She went on to ask me what I was doing now, and I told her I was remarried and retired.

“Jim was one of the first people I took care of at the nursing home,” she said. “You know, I still remember how you were there every evening to feed him.”

I told her I was working on a memoir about Jim. “I turned on a tape recorder on my way home each night and talked about how things went.” She and I said our goodbyes. “I’m really glad you told me who you were,” I said.

As I headed to the checkout, I couldn’t help but smile as I thought about all the people who touched our lives. Jim passed away more than twelve years ago, and people stop me from time to time to let me know they still remember him.

It is understandable that Jim’s indelible memory will forever be in his family’s minds and hearts, but amazing how many others his life touched. In the end, instead of erasing Jim, dementia ensured he would never be forgotten.

Copyright © January 2018 by L.S. Fisher


Monday, January 15, 2018

The Best We Can

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than two hours later, I went back to sleep. The phone woke me up around 8:00. I talked to my mom for a few minutes and went back to sleep for another hour.

From there on, my day started in a hole. I still didn’t feel rested and the snow overnight made it an easy decision to cut line-dancing class. The bad thing is that after the holiday weight gain and total lack of exercise, I really needed it.

I have a love/hate relationship with sleep. I usually sleep well about every other night. Maybe “well” is an exaggeration and “better” would be more accurate. As I lay awake, I can’t help but think about all the studies connecting poor sleep to increased risk of Alzheimer’s disease.

Recently, I read about an Alzheimer’s sleep study that showed interrupted sleep can have immediate consequences. Even one night of sleep disturbance can increase the levels of amyloid in the brain. Tau levels change after several nights of disturbance. This is bad news for my fellow insomniacs and me.

Even with these protein changes, the study does not conclude that sleeping well will decrease your chances of developing Alzheimer’s, but a good night’s sleep improves overall health.

Back to the early morning phone call… My mom called to tell me that my sister-in-law’s father had passed away from Alzheimer’s disease. Her dad was in the same nursing home with my brother so I saw him from time-to-time before my brother passed away. The thing I always remember about him was the big smile.

Maybe the smiles made it a little easier for the family, but it didn’t eliminate the heartbreak of losing shared memories, companionship, or sharing ideas and experiences. The disease takes a toll on an entire family.

I once started reading a best-selling Alzheimer’s book by a woman who scoffed at people who were saddened or depressed when a loved one was diagnosed with Alzheimer’s. Her attitude that it wasn’t a big deal set my teeth on edge.

Another super-wealthy caregiver advised not putting a loved one in a nursing home. Keeping a loved one at home is much easier when you can hire a team to provide 24/7 care.

I could see where in-home care would be an attractive option, but not practical for most of us. Most of us can’t manage without the support of family, friends, and professionals. Alzheimer’s is the most expensive disease in America and can last for a decade or more.

When the journey ends, we can take comfort in knowing we did the best we could with the resources available to us. I believe the most valuable gifts we have to offer are time and unconditional love.

Love doesn’t end at the nursing home door or, for that matter, death’s door.

Copyright © January 2018 by L.S. Fisher

Monday, January 8, 2018

Back in the Groove

For the past two months, my excuse for hibernating is “so busy with the holidays, you know.” So what if I’m busy binge re-reading my Tony Hillerman Leaphorn and Chee books. 

There isn’t a better reason for sticking close to home than hearing everyone you know has the flu, or some other mysterious virus. I’ve limited my social interaction to avoid giving or receiving unwanted gifts of disease.

Now, the New Year is here and the “holidays, you know” are so last year. Last weekend was busy from start to finish. By today, I was totally exhausted. It didn’t help that I got four hours sleep for two days in a row followed by one thirteen-hour night to make a healthy seven-hour a night average.

I blame my four-hour nights on years of caregiving. Jim never seemed to need more than four hours of sleep, so that meant if I wanted to keep track of him, I couldn’t sleep while he was up wandering around. In the story “Gone in the Night” I re-live every caregiver’s nightmare of waking up alone in bed, alone in the house, and thinking I might be alone in the world.

Excerpt from Indelible:

Although I had a sense of urgency, I drove cautiously because I didn’t want to hit him with the car. I had no idea how long he’d been gone, and the farther I traveled without seeing him, the more I panicked.

I reached the crossroads and without hesitation, turned left, choosing Jim’s normal route. I pressed onward, fear and worry jockeying for position in my mind. I rounded the next corner, headlights slicing through the darkness. There he was! The tension drained from my body, replaced with elation and relief.

Jim was fully dressed wearing jacket, jeans, his “Vietnam Veteran and Proud of It” cap, and his sunglasses. He seemed to be unaware of the car and continued his measured tortoise pace, cane grasped in his left hand. I pulled over and stopped behind him, climbed out of the car, speed walking to catch up with him. I reached out and wrapped my fingers around his bicep, and he stopped as if he had applied his brakes.

To be honest, when Jim first went into the nursing home, I didn’t think I’d be able to sleep alone in the house. It turned out that I was so exhausted that it took me months to catch up on my rest. Once I did, though, I was back to my four-hour sleep nights. I still struggle to get anything like a normal night’s sleep. It concerns me because I know chronic lack of sleep is a health hazard.

I need to get back in the groove. I took down the three Christmas trees and removed ornaments from the two trees that are lit year round. I need to finish taking down and putting away my huge collection of nutcrackers. For the first days of January, the twelve days of Christmas hadn’t finished, but that excuse won’t work now. “Maybe I’ll just leave everything up and won’t have to decorate next year,” I told Harold.

“You would have to dust them,” he pointed out. He knows how much I detest dusting whatnots.

“Guess I’d rather put them away than dust them,” I said.

I’ve grown fond of putting off until tomorrow that which I do not want to do today. Getting back into the groove isn’t all that easy. I think I’ll start…tomorrow.

Copyright © January 2018 by L.S. Fisher


Sunday, December 31, 2017

Cold is for the Bold

As 2017 winds down, winter has barely started, and I’m ready for spring.

With the cold weather and sub-zero wind chills lately, I’ve had to psych myself up every time I head out the door to walk the dog. When my husband asked, “What do you want for Christmas?” the only thing I could think of was an N-Ferno hood like he bought for himself last year.

Now, I dress as if I’m going on a polar expedition every time I walk out the door. As with everything, it seems, there is an upside and downside to the new hood. The cold doesn’t make my face hurt anymore, but my glasses fog up and I have to remove them. As nearsighted as I am, that means I can’t see much. Still, the hood makes me feel like a Ninja warrior battling the cold.

The best defense against the cold is layering. I bought a pair of fleece-lined sweatpants, but they didn’t stop the cold until I wore my Cuddle Duds beneath them.

This New Year’s Eve, not only our bodies are layered against the cold, our souls and hearts are layered to shield us from hurt and disappointments. In order to overcome the challenges we face on a daily basis, we have to pile on layers of accomplishment. To defeat sadness, we need to find joy. To defend ourselves against the darkness, we need to seek out light.

As we reflect on the dying year, we can focus on the bad or sad times, or we can laser our thoughts on the good times. The same could be said for the past years. A lifetime of years.

For some reason this morning, I found myself dwelling on my failures and missteps. As I thought about the times I made stupid mistakes, I found myself sinking into a place I didn’t want to be. Then, I went on with my day—breakfast, laundry, walking the dog—those little daily obligations that are there to be done again and again. There’s nothing permanent to be gained or lost.

As I worked on Jim’s memoir Indelible, I found myself laughing and crying as I relived that period of my life. The thing is that life is cyclical. Maybe, roller coaster might be a better description. High highs, low lows, sudden drops, heart-stopping curves, and the moment of quiet and relief when one ride ends and before the next one begins.

Tomorrow begins a new year. I’ve never been much of one for making resolutions because I never saw a resolution that I couldn’t break within a few days. Instead, I’m looking at more of an overview.

Over the past several months, I’ve been paring down my outside obligations. This is a real effort on my part to free up more of my time to tend to matters important to me.

One thing for sure, 2018 is going to have a cold, cold start. So tomorrow when I don my Ninja hood, I’ll battle the cold and face the new year with boldness and optimism. After all, the hood keeps the wind from hurting my face, and spring will be only 77 days away.

Copyright © December 2017 by L.S. Fisher


Sunday, December 24, 2017

Christmas at the Home

I saw a post this morning, “Please, if you have loved ones in a nursing home try to spend some time with them.” This reminder made me think of the five Christmas holidays Jim spent in a nursing home.

One of the disturbing trends I noticed at the nursing home was the lack of family support, especially in the special care unit. Excuses ranged from “he doesn’t know me” to “I can’t stand to see her that way.”

The family who never visited missed the smiles and bright eyes when a loved one walked through the door. When I visited Jim, some of the other residents felt that I was there to see them too. I greeted them by name, commented on how pretty someone’s dress was, or offered to get the attention of an aide when they pleaded, “Will you help me?”

“They won’t let me help you, but I can get someone who will,” I told them.

Christmas time seemed a particularly lonesome time at the nursing home while families celebrated at home. I was looking through some of my Christmas memories in Indelible (memoir in progress). Here are some of the Christmas memories:

Home for Christmas:

Around Christmas time, we drove around town after dark to see the lights. The state school had an outstanding display with Christmas scenes set up in small buildings. Christmas music played on loudspeakers throughout the drive. Eric, Shawna, and the grandkids enjoyed riding through the light display too.

I brought Jim home for Whitney’s birthday party and our annual Christmas Eve get-together. After our Christmas Eve celebration, we drove Jim through the Christmas lights before returning him to the nursing home.

On Christmas day, I picked him up to have dinner at his mom’s house. We made it through our first Christmas with Jim living in a nursing home by making it as close as possible to our normal celebration.

Home for another Christmas:

I brought Jim home and helped him out of the van and down the walkway. He took his usual seat on the reclining section of the couch.

Rob and Colby were playing video games on the TV. Before long, he yelled, “Hey!” and jumped up and started going toward them.

“I wonder if he wants to play,” I said. At one time, Jim loved video games, and he played Mario Karts long after he was in the nursing home.

Rob ejected the game they were playing, and inserted Mario Karts into the Play Station. “Here, Dad,” he said as he handed Jim a control. Jim didn’t seem to remember how to use it, so Rob passed the other control to Colby and helped his dad maneuver the one he held.

After a few races, Jim remembered how to run the car around the track, but the master of the game was not competitive.

Christmas at the Home:

I wanted to bring Jim home for Christmas Eve, but it was snowing, so I decided it wasn’t a good idea. Christmas Day, I brought Jim a bowl of the chili Rob made for Christmas Eve. He ate the chili and the ham that came on his plate.

While Jim was in the nursing home, the staff and I did everything we could to make the holiday special. They decorated for Christmas and provided Christmas cards that they taped to the doors. I brought a tree and decorated his room.

The staff drew names and gave Christmas presents to the residents. Jim was wearing his gift, a Dale Earnhardt, Jr. shirt.

I had planned to take down his Christmas tree, but the box was still in the car where I had forgotten it. The rain pelted against Jim’s windows, and I dreaded going back outside. As I spooned his food, I talked to him. “Well, I’m not going back out in that crap to get the box for the Christmas tree.” Jim’s eyes moved toward the tree. “I guess you’ll get to enjoy it one more day.”

We spent fifteen minutes together Christmas Day 1969 before Jim returned to Vietnam and I flew home. From then until Jim passed away, we were together every Christmas Day. I cherish the memories of our Christmases regardless of the setting.  

Copyright © December 2017 by L.S. Fisher


Friday, December 15, 2017

Kathy Siggins Stamps Out Alzheimer’s

I went to my local post office this week and bought a sheet of Alzheimer’s semipostal stamps. I couldn’t help but brag, “My friend, Kathy Siggins, is the one who got the approval for this stamp. She worked eighteen years to make it happen!”

Often, we claim people as friends when they do something extraordinary—something that makes a mark in history. In this case, I wasn’t exaggerating. I met Sarah Harris, Jane Adams, and Kathy Siggins at the first Alzheimer’s forum I went to in 2001. We forged a lasting and special friendship of the heart. 

And guess what? Kathy was already working on the Alzheimer’s semipostal stamp, and was still working on it at the 2017 forum.

Well, frankly, I didn’t even know what a semipostal stamp was, or why we wanted, much less needed, an Alzheimer’s stamp. Since then, thanks to my friend Kathy, I’ve learned quite a bit about them.

Getting a semipostal stamp approved isn’t easy. As you’ve heard said before…it takes an Act of Congress. The Semipostal Authorization Act grants the U.S. Postal Service authority to sell fundraising stamps to further causes that are in the national interest. They will issue five semipostal stamps over the next ten years, with the Alzheimer’s stamp being the first discretionary semipostal stamp. The second stamp, already approved, is another cause near-and-dear to me: Post Traumatic Stress Disorder semipostal stamp.

Why are these stamps important? Prior semipostal stamps have raised millions of dollars. Congress mandated the first semipostal stamp in history for Breast Cancer Research  which raised $86.7 million and a Save Vanishing Species Semipostal stamp that raised $4.3 million.

The Alzheimer’s stamp costs sixty cents. The additional cost of the stamp will go toward Alzheimer’s research. As Congressman Elijah Cummings said at the dedication, this is a “big deal.”

Kathy Siggins has been busy lately. The stamp was released on November 30 and she was a special guest at the official dedication of the stamp. The Congressman recognized Kathy for her work. “You turned your pain into a passion and to a purpose.” He said it would affect generations yet unborn. He went on to say, “Your name may never appear on the front page of the Washington Post. You may not even make the local gazette… By the way, you may never be famous, but there will be people who will benefit from what you did.”

The Congressman said Kathy was as an example of how “one person who instead of standing on the sidelines of life having a pity party” used her energy to make life better for somebody else.

I’ve followed Kathy’s various events online: award presentations, television interview, dedication parties, and celebrations. She takes it all in stride. Kathy has worked toward this day for so long, I’m sure she is filled with exhilaration.
The stamp, thanks to the unwavering efforts of Kathy Siggins, will be on sale for two years. Buy early and often! Let this be the only stamp you buy in the next two years.
Kathy and Sarah (back), Linda and Jane (front) 

Yes, Kathy, you are our Alzheimer’s hero. Speaking for Sarah, Jane, and myself, we
salute you, our sister of the heart, and heap our gratitude and love on you for being the special person you are.

The US Postal Service dedication ceremony:


Copyright © December 2017 by L.S. Fisher


Slaying Dragons

An old story that came to my mind this morning: a man asked his friend with a terminal disease, “How does it feel to know you are dying?” The friend responded, “How do you feel to think you are not?”

How you cope with terminal disease depends on how you feel about battling dragons. You can meet the dragon head on, or you can turn tail and run. Fight or flight. It depends on the kind of person you are.

Alzheimer’s is a big, ugly fire-breathing dragon of a disease. It is a terminal disease that can take a decade or more to reach its ultimate conclusion. That’s entirely too long to be in “dying” mode.

As if having a terminal disease isn’t enough of a problem, people often have more than one potentially fatal condition. Heart disease, diabetes, kidney disease, cancer…the list goes on and on. While you are battling the big dragon, smaller potentially dangerous dragons are coming at you from every side.

In real life, you battle diseases as if you were fighting those mythical dragons, that is, one at a time. Otherwise, it is overwhelming.

When Jim developed other medical problems, we dealt with them as they came. I decided it was best to address each issue as it arrived. My thoughts were to keep him as healthy and mobile as possible.

Alzheimer’s is a disease that affects every person in the family. It may affect them in different ways. One person steps up to be the caregiver—usually a spouse or child. Some may withdraw while others go into overdrive to provide support for the primary caregiver. Then, there’s Mr. or Ms. Know-it-All who doesn’t really want to do anything but tell everyone else how to do it. Yes, the personalities of those involved can be quite challenging.

Ultimately, the biggest choice is whether to give up or go slay the dragon. When you give up, you waste precious time. Chronic illness of any type becomes a dragon that needs to be slain.

If you look at what you still have instead of what you’ve lost, you can begin to enjoy life. Cherish those little moments of joy, and make memories. You don’t want to lose a decade of your life seeing only the doom and gloom of a terminal disease. Become a dragon slayer!  

Copyright © December 2017 by L.S. Fisher

Sunday, December 3, 2017

Sights, Sounds, and Traditions of the Holidays

I’m not sure where the year went, but it definitely swooshed by. It’s hard to believe it is Christmastime, even with two trees and a complete army of nutcrackers scattered throughout the house.

Holiday movies threaten to overflow my DVR. They all have a similar theme: a person who loathes the holidays, but magically “gets” what all the fuss is about. A Hallmark movie can turn the Grinch into a Santa’s helper. Life is not a movie, and not everyone has a magical moment each holiday season.

Holiday sights and sounds greet us everywhere we go, beginning earlier and earlier each year. All that holiday joy and ho-ho-hoing can be a bit much for those who are dealing with the unpredictable nature of dementia.

Three important lessons I learned throughout my ten Christmas seasons as a caregiver:
(1) simplify sights, (2) simplify sounds, (3) simplify traditions.

For most of his adult life, Jim was pretty much a Grinch about Christmas. He thought it had become so commercialized that it had lost its meaning.

In some ways, dementia made the holidays a little more tolerable for Jim. In other ways, it only added to his confusion. One year, I was putting framed family photos in a box to clear the shelves for Christmas decorations. Immediately after I cleared the shelves, Jim put the photos back where they had been. That was my first clue that he wasn’t as crazy about the decorations as I was.

More than the decorations, I think it bothered him that I was changing his familiar environment. I learned to simplify the sights of Christmas. The holidays can entirely too bright for a person who is confused. And it just isn’t as much fun for the caregiver to do all the decorating alone and even less fun taking it all down.

Christmas can be a noisy holiday with traditional parties, dinners, and loud holiday music. When you combine dozens of conversations with music and piles of food, you are just asking for trouble. Communicating with a loved one with dementia is an acquired skill. Rapid fire conversation is hard for a person with dementia to follow and can bring about a negative reaction. Simplify the sounds of Christmas. Replace noisy gatherings with soothing traditional music your loved one will remember from his or her childhood.

Simplify traditions by getting rid of the ones you have clung to through a sense of obligation. If you don’t enjoy it, don’t expect your loved one to tolerate it. Do the things that make you happy. If your idea of a good Christmas is a quiet evening at home, then do it. Most of the stress of Christmas is caused by trying to meet the expectations of other people. Those who truly care about you are not going to want to add any more stress in your life.

Simplifying your holiday can bring the joy back to the season. The spirit of Christmas isn’t wrapped up in glittery packages or found in a department store. The spirit of Christmas is a child wrapped in swaddling clothing, placed in a manger. The spirit of Christmas is love, peace, and a light that shines within our hearts and souls.

Copyright © December 2017 by L.S. Fisher