Something Different

In college, I took an accelerated class on Office programs, and it was no surprise that our tests were computerized. As many of us know, there may be more than one way to come up with the correct answer, but we had three tries to come up with the “preferred” computer chosen method. “The test is only going to have one correct answer, so if the way you do it the first time doesn’t work, try something different!”

This could well be a life’s lesson. During the time I was a caregiver for Jim, I lived and breathed the lesson of trying something different. It became my mode of survival. It seemed that each day brought about some of the same challenges and piled on new ones. You would think it would be easier as you learned what worked with the old ones, but the solution bar kept changing for the old ones along with the new ones.

I documented these challenges and began to put them into a memoir Indelible. I had a rough draft finished  a decade ago, but put it aside.

I resumed the project in September 2016 with hopes to have it finished by the end of 2017. Instead, here it is a year later, and I still have work to do. In the book, I share some brief glimpses into everyday challenges of having a husband with dementia. These flashes of reality could be thought of as verses. These stories, some short, some longer, make up chapters. Eventually, when the words come together in a coherent manner, it will become a non-fiction book.

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The book has taken a back burner to all the other distractions life has thrown at me. Many mornings I wake up with intentions to work on the book, but first, I have to tend to all those other obligations, all the immediate things that must be tended to, and the dread of what’s coming down the pike.

As we close in on the new year, most of us take a moment to reflect on the year just about to trot into the sunset of the past. As we close the chapter of 2018, I’m more than ready to open a new one in 2019.

Too often, I’ve made the mistake of trying to be a people pleaser, and that means some of them have stolen my pleasure. Worse yet, they’ve stolen my time.

 

I plan to move into the new year without resolutions, but with the resolution that the same old problems aren’t going to be approached in the same old way. Sure, I’ll still make mistakes and take the wrong approach, but maybe by the third try, I’ll get it right. Who knows, maybe 2019 will be an Indelible year.

Copyright © Dec 2018 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

What Day Is It?

Jim and Linda, Hawaii, 1969

We had our family Christmas get-together the second week in December. The following Friday, we had our final practice session for the December nursing home gigs. On the way home, I stopped at Walmart to pick up a few essential items.

I walked into the store and stopped in my tracks. Why did they still have all that Christmas stuff out? After my initial shock, I realized that Christmas was still more than two weeks away.

It is no wonder I wouldn’t remember what day it was. My husband and I have been working on migrating our websites to a new server since the first of the month. The project is so fraught with problems, we’ve been working practically non-stop. “My brain is mush,” I told him.

I had been trying to write a note about the umpteenth way to approach a failure and noticed I was making letters backwards and out of place. My brain would not process how it was supposed to look. It made me think about Jim in the early stages of dementia. I wrote about it in Indelible, a memoir in progress.

Jim began to have difficulty writing. He would write letters but they wouldn’t make words. Most of the time, the combination was close enough that I knew what he meant.

I wanted him to feel useful and to “exercise his brain.” One morning, I was washing the breakfast dishes and Jim was sitting at the table. “Honey, would you make a grocery list for me?” I nodded toward the pad and pen I’d placed on the table. “We need paper towels,” I said.

He picked up the pen and wrote on the notepad. “We need milk,” I said.

He set the pen down. “I don’t want to.” He walked out of the room and I sat down to finish the list. On the paper, he had printed, “taper powels.”

Later he picked up the list and studied it carefully. “I wonder why I spelled ‘paper towels’ that way,” he said.

If not for the date displaying on my phone and PC, I would be completely lost as to day and time. Still, even those reminders aren’t enough when my mind is on overload. A few days ago, I looked at the date and noticed it was the day Jim and I married in 1969. I had a complete meltdown, then had to pull myself together to try to make it through the day. My mom called and our music was cancelled. I was torn between having more time to help with the migration project and disappointment that I wouldn’t be able to lose myself in the calmness of playing the ukulele.

I had planned to go to the funeral of our third family member to die within the last thirty days. I would have been there, except for some strange reason, I thought the funeral was Saturday. We played music Friday, and I never sat down to read the paper until late. I saw the funeral notice and my heart sank when I realized I had missed it.

Soon it will be a new year and a time of promise. I look forward to getting back on track and living the retirement dream. I look forward to a time when the outside stress and pressure subside, and the drama ends. I’ll be glad when life gets back to normal.

I think I need one of those shirts or mugs that say, “This too shall pass. It might pass like a kidney stone, but it will pass.”

Copyright © Dec 2018 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Ugly Christmas Sweater

We recently held a raffle as a fundraiser for our Walk to End Alzheimer’s. At our celebration, we had an ugly sweater contest. I have a few Christmas sweaters that would classify as ugly, but I really don’t remember where I stashed them, and I’ve been too frantically busy to find them.

I looked at a few stores where they definitely had butt ugly sweaters, but I was not inclined to spend $40 for a sweater so ugly, I’d only wear it once. I had already cancelled out of one party, and I was in such a funk that I just didn’t know if I was even going to make it to this one.

Finally, a few hours before the Alzheimer’s Walk party, I breezed into Walmart and looked at several sweaters so ugly they were kind of cute—in an odd sort of way. I chose five sweaters and took them to the dressing room. It was important that the sweater fit because I was down to the wire and certainly didn’t have time to exchange it.

I put the sweaters on a hook and one started flashing. It took me a few minutes to find the off switch. I finally got a good look at the sweater that was flashing and knew it was the one. It said, “I’m having a meltdown.” Ah, perfection.

This entire season has been one big meltdown for me. I’m to the point where I don’t want to go to bed at night, and I don’t want to get up in the mornings. I’ve decided it ’tis the season to be grumpy. I’ve felt like an ugly sweater inside and out, and this one told the story of the past six months.

Sometimes it’s hard to decide whether my knee or my head hurts more. I feel like crawling into a shell and pulling my head inside like a nervous turtle. I went an entire week without going out of the house except to walk the dog.

The season of Ho-Ho-Ho, is more like bah-humbug. There’s nothing like losing two family members to take the jolly out of the holiday season. 

On the positive side, my house is as decorated as it’s going to get for the holidays. We finally found a mutually agreeable date for our annual family get-together. Now that two of my grandchildren are all grown up, we have a lot of working adults with schedules to coordinate. We had eliminated all weekends in December, but a Christmas miracle cleared up a day this upcoming weekend.

When I turn on the trees and the fiber optic bear, it chases away the blues. Now I need a little Christmas magic to give me back my stamina, enthusiasm, and optimism. I would so much rather have a white Christmas than a blue one.

Oh, and that sweater…turns out that I kind of like it. I combined the “ugly” sweater with a Santa hat, a “rosy the riveter” scarf, fingernails painted in five bright Christmassy colors, one red and one green earring, and I found some of that good old holiday cheer. The flashing lights helped temper the “Meltdown” message.

Copyright © Dec 2018 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Life’s Little Mysteries

I’ve always liked a good mystery, and life is always serving up new ones to give inquiring minds a workout.

I was talking to my mom and she said today had been a long day. I was thinking the same thing this morning when I thought it was afternoon and it was only 11:30 a.m. Some days seem longer than others do, although according to the clock, they are all the same. I would consider that one of the mysteries of life.

Today, the blackbirds were back again. They covered the yard and the fields. As far as I know this has happened twice. Since the snow melted, and we are supposed to get another one today, I thought maybe they were like all the people who storm Walmart when bad weather is predicted. It’s a mystery why everyone is out of bread and milk right before a storm.

I know my mother-in-law always said that deaths happen in threes. It really does seem to be true. When two other people in the family die, I start being more cautious.

When I go outside at night, I look at the heavens and think how mysterious it is. The planet, stars, moon, and UFO’s leave me breathless. Watching a meteor race across the sky leaves me wishing for more knowledge and a better understanding of how the universe works.

Another mystery to me is why some people seem to live charmed lives while others struggle every day. Why do people get life-threatening diseases like Alzheimer’s, ALS, or cancer? Why do some people have to live with autoimmune diseases, diabetes, kidney failure, and a multitude of other ailments? It would be easier to understand if good people didn’t get bad diseases.

Why do some people have talents that others totally lack? It’s a mystery to me how some people can be so artistic while another might be a math wizard but can’t draw a stick figure. I never could understand how Jim could play and sing a song he’d heard only a few times. Where does that innate ability originate? I can’t solve that one.

I think one of the biggest mysteries is dying. Why do some people have slow, lingering deaths while others die peacefully in their sleep? Why are some lives cut short while others go beyond quality of life? You often hear people say life isn’t fair, well length of life isn’t fair either.

When Jim was dying, I felt heartache and anger. I knew his death from dementia was inevitable. He would have not wanted to live once his personality changed and his memories faded. Jim had always treasured his memories, and it was sad to see them disappear into the broken links in his brain. Still, it was heartbreaking to let go. I’ve heard people often describe death as a blessing, but when it came to Jim, that is one thought that never crossed my mind.

Dementia stole a lot from us. One of the things I missed the most after dementia was our conversations. We talked about ghosts, UFO’s, love, fear, heartaches—anything about life and death. Jim was never afraid of dying. He always said that death was closing one door and opening another. Life after death was a mystery he wasn’t afraid to solve.

The mystery we should all strive to attain is how to make the most out of the time we have on earth. My goal is to live a drama-free life and not allow others to steal my joy. When I leave this world, I want to leave more than I take.

Copyright © Dec 2018 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Thirty Days of Thankfulness – Not Your Usual List

November is a time for self-examination and giving thought to our many blessings and giving thanks where thanks are due. Many of my Facebook friends have been posting one thing they are thankful for each day this month.

I’ve never participated in this delightful idea, but felt compelled to complete my monthly list in one fell swoop. I made the list and entered it into One Note on a sleepless night. After reviewing the list, I realized that I don’t remember seeing any of these items on their lists. I always suspected my thought processes might not be the same as the average person, but until now, I’ve kept some of the weirdness under wraps.

I am thankful for...

1.      Mice. It’s easy to think of mice as pesky rodents with no purpose in life other than leaving droppings behind furniture and chewing up important papers. But mice are extremely important when it comes to medical research in general and Alzheimer’s research in particular.

2.      Sleepless nights. On sleepless nights, my brain goes into creative overdrive. My best ideas come to me in the middle of the night.

3.      Wishes that didn’t come true. Throughout my lifetime, I’ve made a lot of goofy wishes, and I’m so thankful that they didn’t come true. I don’t think the life of a fairy princess, a rock star, superhero or being married to Paul McCartney is what God had in mind for me.

4.      People who hurt my feelings when I was young. Yep, all those cruel kids made me into a rhino-hide adult. It is almost impossible to hurt my feelings, because frankly I don’t give a poop about what insensitive, rude people say to me.

5.       Failure. I’ve learned more from my failures than I ever learned from my successes. Let’s face it, when I make really bad mistakes, I try hard to not do it again.

6.      Not being beautiful. Being beautiful is a burden I wouldn’t want to carry. Besides, I had to work a lot harder on my personality.

7.      Hard times. There have been times in my life when it was a challenge to figure out how to pay the bills, feed the kids, and not have too much month left at the end of the money. Because of  hard times, I’ve never had that fear of being poor that some people have. Been there, survived, and know that happiness isn’t based on the size of my bank account.

8.      Hard work. Without years of hard work, I wouldn’t have done as well in my job as I did and wouldn’t be looking forward to retirement.

9.      Having my heart broken. If a few boys hadn’t broken my heart when I was younger, my life would have turned out differently. I’m happy with the way it turned out, so thank you for breaking my heart and forcing me to move on.

10.  Rainy, gloomy days. When the rain falls and the sun is elusive, it is a perfect time to sleep in and laze around reading a book.

11.  Boredom. My life is so hectic that if I find time to be bored, I can relax...or think of something totally fun to do.

12.  Hunger. When I’m hungry, I know I haven’t overeaten.

13.  Paying bills. When I pay bills, it means I have another month of electricity, internet, phone service, and a zero balance on my credit cards.

14.  Not winning the lottery. I’ve always known that winning the lottery would screw up my life, and I like it the way it is.

15.  Flies and spiders. When I’m in a murderous rage, I can squash a spider or swat a fly and not suffer an ounce of guilt.

16.  Clear packing tape and plastic wrap. The way these two stick to themselves and trying to figure out how to get a roll started teaches me patience.

17.  Old age. Without old age, I’d have to pay to get into ballgames and wouldn’t get senior discounts.

18.  People who don’t like me. They teach me to stand up for myself.

19.  People who take advantage of me. They keep me on my toes and help me say “no.”

20.  Running late. It’s amazing how much time I’d waste waiting if I got to everything early. Besides, I’ve avoided traffic tickets and dangerous driving when I decided it was better late than never.

21.  Anger. If an injustice makes me angry, it means I am passionate enough to care.

22.  Fear. I might not be alive today if I didn’t have sense enough to be afraid from time to time.

23.  Ignorance. Since I clearly don’t know everything, ignorance means I always have something to learn.

24.  Grumpy old men. Without them, grumpy old women wouldn’t have anyone to argue with.

25.  Lousy TV shows. When a lousy show is on TV, it is much easier for me to turn it off and do something productive.

26.  Bratty kids. I’m so thankful that none of those bratty kids belong to me.

27.  Runny nose. Without a runny nose, I’m sure my head would explode from the inside out when I have a head cold and infected sinuses.

28.  Thunderstorms and lightning. We need the rain to replenish the earth and the lightning keeps me honest since I don’t want to be struck down for telling a lie.

29.  Bad lab results. Without bad lab results, I wouldn’t have incentive to work toward being healthier. I would have continued the same bad dietary habits with the same results.

30.  Uncertainty. I don’t know everything that is going to happen in my future! Uncertainty keeps me optimistic that the best is going to happen and not the worst.

One of the great things about making a list like this is that it made me realize the thing I am most grateful for is living the life I want and wanting the life I live. I am happy to be me and I don’t envy anybody else’s life or want to be somebody I’m not.

Copyright © November 2013 & 2018 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

I'm Telling You, Friend

After Jim developed dementia, he forgot the lyrics to most songs and had difficulty playing his guitar. Eventually, he sang the same cowboy song repeatedly. This song is so obscure I can’t find the lyrics online, but I think the title is “I’m Telling You, Friend, I Ain’t Had a Good Day.”

Maybe the reason this song stuck in Jim’s brain was because of all the bad days he had. The song is a warning even to friends about what a person feels like doing on a bad day.

I felt this song a lot when I was a caregiver, and I’ve been feeling it lately. I don’t want to take my anger and frustration out on anyone, but especially not on my friends and family. Instead, I just internalize and feel sad and depressed.

Too many bad days are beyond our control. When you receive a one-two punch in the face, the third one can be the knockout blow.

So, I binge on Hallmark feel-good, predictable movies. I play games on my Kindle where I win some and lose some, just like real life.

Playing my ukulele makes me happy. My granddaughter says it is a happy instrument, and I agree with that assessment. I regret that I never learned to play an instrument while Jim was living. I could have learned so much from him. Maybe he could have taught me that song about a bad day. Playing it on a happy instrument would have surely pointed out the absurdity of how we let things we can’t control ruin a perfectly good day.

I sometimes have to remind myself of two yardsticks I used to get myself through the days of caregiving. One measure was “so what.” When Jim did something he shouldn’t have done, I would ask myself “so what?” The day he stripped his clothes off in the front yard, my mother-in-law called me at work. She couldn’t get him to come in or put his clothes back on. So what? We lived in the country, there wasn’t much traffic, and the weather was mild. It took me fifteen minutes to drive home and solve the problem.

The other measure is “What difference will it make a hundred years from now?” So far, I can’t think of anything.

Someone pointed out that without bad days we wouldn’t appreciate the good ones. I am thankful that I have a core trait of optimism. I know that I’ll come out on the other side with inward peace and outward calm. In my lifetime, a few bad days are, ultimately, followed by a hundred good ones.

Copyright © November 2018 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

The Forgotten

I went to Walmart on November 1. The Halloween decorations were down, and the Christmas decorations were on full display. After searching the store, I came across a small display of Thanksgiving décor.

Unfortunately, one of the important celebrations for our country has been mainly forgotten. It seems that the only important thing about Thanksgiving weekend is Black Friday. Wouldn’t you know that my Google calendar has Black Friday on its list of holidays with the exact same emphasis as Thanksgiving?

It seems that not only has Thanksgiving been demoted, our seasons have as well. We thought when we went from winter to summer without any sign of spring, that was a once-in-a-lifetime fluke. Now, we’ve gone from summer to winter without more than a whisper of autumn. We were sweating one week and dashing through the snow the next.

As I thought about the forgotten, I thought about people with dementia. We think of those afflicted with dementia as being forgetful, but sometimes, their family and friends are the forgetful ones.

It’s sad during this time of thanksgiving that thankless people abandon loves ones because “he won’t remember me,” or “I don’t know what to say to her,” or “grandpa keeps asking the same questions.” Oh yes, it might be a little awkward at times, but that doesn’t mean it isn’t worth the effort. These people were the first to be critical of families who remained a constant presence in their loved one’s life.

It irritated me when someone asked why I provided personal care that the nursing home was “paid” to do. I wanted Jim to have excellent care and as much time as I spent with him, there is no way that aides could spend that much time with one resident.

When I visited Jim in the nursing home, other residents thought I was there to see them. I took time to talk to them, accept their hugs when offered, and to compliment them on a pretty blouse, or a new hairstyle. I entered into their world and felt the anger they couldn’t for the way their families had forgotten them.

At Christmas, an influx of visitors showed up with inappropriate gifts and criticisms of their loved ones care, surroundings, or the other residents they found to be annoying. These visitors never came alone. They missed the one-on-one time so important to the residents and replaced it with confusion.

When we think about the forgotten holiday, it is a time to remember the forgotten, forgetting people. Be thankful that you can spend time with your loved one, you can hug them, and touch their warm, living hand. The sad thing about Alzheimer’s and other dementias is that the time will come when they are gone, and you will rue the time you threw away. Time that could have been spent relishing that moment of clarity, the recognition that comes and goes, and the opportunity to go for a drive or a walk in the park.

I miss the times when Jim showed a glint of humor or understanding, the communication without words. I miss holding his hand, giving him a shower, coaxing a smile, and stopping by Dairy Queen to get him a milkshake. I miss the friends I made with resident’s family members and the staff. I miss the quirks of the residents.

Thanksgiving isn’t so much a holiday as a way of life. When we are thankful for the blessings we have, we don’t let setbacks get us down—at least not for long. A little bit of thankfulness goes a long way toward coping with the unfortunate circumstances that life generously sends our way.

Copyright © November 2018 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

November: Alzheimer's awareness and Caregiver Month

November is designated as the month to raise Alzheimer’s awareness and to honor caregivers. I am going to focus on Alzheimer’s caregivers.

Taking care of a person with Alzheimer’s or other dementias is an all-consuming undertaking. In the US, more than 16 million family members and friends provide unpaid care for their loved ones with dementia. They provide 18.4 billion hours of unpaid care at a value of $232 billion. About half of the unpaid caregivers provide care for four or more years. Alzheimer’s disease is called the “long goodbye” for a reason.

The average life expectancy after diagnosis is between eight and ten years, but some people live twenty years or more with the disease. Diagnosis takes an average of 2.8 years. Jim’s diagnosis of an Alzheimer’s type of dementia was the result of the process of elimination. Especially at his age (49) an entire battery of test results were examined for a different cause for his confusion. It was critical that we ruled out treatable conditions: drug interactions, vitamin deficiencies, thyroid problems, depression, and low blood sugar.

The emotional stress of caregiving is pretty much off the charts for 60 percent of the caregivers. This emotion is followed closely by depression. The entire process of caregiving was a ten-year rollercoaster for me. We had good times, keeping our lives as close to normal as possible, followed by crisis after crisis, completing the downward spiral from end stages to the inevitable conclusion.

The object of this article is not to sugarcoat caregiving, but to bring awareness to how difficult it is to care for another person. I had an exceptional amount of family and friends supporting Jim and me. I was in my mid-forties, and that made me wonder—how could an elderly person provide care for a spouse without that support and without the resilience of a younger caregiver?

The long-term commitment of an Alzheimer’s caregiver causes medical problems for the caregiver. I was one of the caregivers guilty of not taking as good of care of myself as I should have. My company required annual health fairs and my test results fell within the heart-attack-waiting-to-happen category. I don’t know if I would have made it through if I hadn’t changed my ways about my own health.

If you are a caregiver, I urge you to take care of yourself from the beginning to the end. Contact the  Alzheimer’s Association and join a support group to learn from the experiences of others, to have an opportunity to vent, and increase your circle of friends. Visit www.alz.org for vital information about strategies to help yourself and your loved one.

If you know a caregiver, don’t abandon them. Provide emotional support, include them in fun activities, and let them know that you love them. Help them to the best of your ability to do so.

Caregiving is a marathon, not a sprint. I urge family caregivers to never give up on life and happiness. Find hobbies and social engagements that make you happy, and rid yourself of obligations that add to your stress. Draw on your inner strength and spirituality to help you live life to the fullest.

Copyright © November 2018 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Alzheimer's Day at Walmart

Sunday, my sister-in-law Ginger and I spent a good part of the day at Walmart collecting for the Sedalia Walk to End Alzheimer’s. Our walk was in September, but since we fell short of our goal, we were trying to get a few more donations and “meet and greet” the shoppers.

We’ve set up outside Walmart several different times, but it’s usually during the heat of summer. In fact, we have a real talent for choosing the hottest day of the year. This was a first for me—I wore a sweater.

The weather was sixty-ish, but the wind was gusty at times and just a steady strong breeze at others. I lugged the table to the ideal spot and Ginger and I began our battle with the wind. We struggled with taping down the tablecloth. As soon as I set the collection jar on the table, the wind caught it and blew it down the sidewalk. Finally, we had everything taped or weighted down. We set out T-shirts, books, Dum-Dums for the kids, and informational brochures.

People couldn’t decide how to dress for the weather. We saw shorts, flip-flops, children with bare feet, sweaters, coats, dresses and high heels, boots, and a few who might have made the famous Walmart photo ops.

The time flew by as people stopped to donate and share their stories. Many of them have traveled the same journey as I have. 

A young woman told us, “My nana has it.” Others: “My dad” or “My mom.”  Another lady made a donation and said, “Thank God, no one in my family has Alzheimer’s, but we do have friends that have it.”

One man wheeling a full shopping cart almost passed us by, but he stopped. “Thank you for doing this,” he said. “I walked in Tennessee this year.”

I smiled. “Thank you!”

One man came up to us. He reminded me of Jim because his hat was covered with colorful hatpins. He chatted for a while, and then he said. “I’ve been diagnosed with Alzheimer’s.”

The T-shirts were popular items and I went back to my car several times to replenish the stock. Just as we were thinking about closing down, a man wearing a suit walked up to us. He made a donation, and we handed him a T-shirt. “My mother died from Alzheimer’s,” he said. He looked up at the sky and I saw the tears welling up in his eyes. He began to talk about her and her faith in a better world. The tears slipped down his face and he dried them with the T-shirt. He talked about his family dynamics and the guilt his brother felt for not being there for his mom. As he wiped tears, he said, “I’m sorry, I didn’t mean to bring you down.”

“Hey, we’ve all been there,” I said. “Let me give you a hug.”

We hugged in the way that those of us who have lost loved ones to Alzheimer’s hug to comfort each other. Then, he hugged Ginger.

As it usually happens when we fundraise for Alzheimer’s—we find others who know the pain of watching a loved one fade away with this formidable disease. As always, we share the hope that the end of Alzheimer’s is nigh.

Copyright © October 2018 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Memory Dog

When we get ready to take our dog out in the mornings, she stops in the hallway if she hasn’t heard us turn off the burglar alarm. I always praise her for reminding me and avoiding  a call from the alarm service.

“I think she is a memory dog,” I told my husband.

“What has she reminded you of this time?” Harold asked.

“Well, I came in and forgot to shut the garage door. She just stood at the top of the steps and looked at me until I closed it.” I figure at our age, we need a good memory dog.

People have guide dogs, hearing dogs, autism service dogs, seizure response dogs, diabetic alert dogs, PTSD dogs, allergy detection dogs, and mobility assistance dogs.

I couldn’t help but consider how dogs could be used for persons with dementia. Some Alzheimer’s units have dogs and the residents can become quite attached to them. In fact, the scuffle that caused Jim to be kicked out of a nursing home was over the dog.

According to Psychology Today, in 2014 two groups—one in Scotland and one in Israel— trained dogs to assist persons with dementia. Dogs are on a six-foot leash so they can lead their owner in an appropriate direction. The dogs understand the command “home” to keep a person from being lost.

To assist caregivers, the dog’s collar has a GPS navigational device that can be activated remotely. The dog is trained to recognize the tone as a command to return home. If a person leaves home without the dog, the dog can track by scent to find the lost person.

The dementia assist dogs are trained to recognize different tones to help a person “remember” daily tasks. Different tones will instruct the dog to bring medicine in a bite proof bag with a note, lead the person to a cabinet to remind them to eat, drink water, or other personal care. The dog also knows how to trip an alarm in case the person falls, chokes, or needs intervention.

In the United States, 4 Paws in Zenia, Ohio, trains Alzheimer’s Assistance dogs. Training an Alzheimer’s Assistance dog costs between $40,000 - $60,000. The family receives assistance with the cost of training. Their website plainly states that if a person cannot be left alone, they should not be left alone with the dog. The purpose of these dogs is to help the quality of life for the caregivers and their loved ones with dementia. In addition to the assistance a dementia trained dog can provide, he is also a companion and walking the dog provides exercise.

Jim had several favorite dogs over the years, but I think Bubba had to be his all time favorite. Although Bubba wasn’t a trained dementia dog, he was a faithful companion. Before he went into the nursing home, Jim walked Bubba and my dog Sherry almost every day.

Many of us have fur babies that become an integral part of our family. Our pets help combat loneliness, but specially trained dogs have the potential to be lifesavers.  

Sources:

https://www.psychologytoday.com/us/blog/canine-corner/201401/assistance-dogs-alzheimers-and-dementia-patients

https://4pawsforability.org/alzheimers-assistance-dog/

Copyright © October 2018 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Memory Failed

It is hard for me to leave home with all my paraphernalia in tow when I have more than one event on my daily calendar. Last week, I had practice with the family band in a different county, immediately followed by watching my granddaughter perform with the high school band at a football game in yet another county.

I was gathering up my practice items (ukulele, Kindle, music stand, book with every possible chord, tuner, capo) and preparing for the football game (camera, jacket, bag to carry items). As I put everything together, I looked at the stack and thought, Oh, yeah, something’s missing. I’ll go to the closet and get it. Except, when I got to the closet, I couldn’t remember what I needed to get. “Sometimes my memory fails me,” I told my husband. “I can’t remember what I forgot.”

I looked at my watch and made a mad dash for the car. If I left immediately, I wouldn’t be pressed for time.

A couple of miles down the road, I called my mom to tell her I was on the way. “Now, I remember what I intended to bring!” I said. “I thought I would need a cap to keep the sun out of my eyes at the game.”

“I have one I’ll send with you,” she said.

“I’ll be there in plenty of time,” I said. Well, those were optimistic words. First delay was a wreck. The second and longer delay was road construction. I made it in the nick of time and my mom had figured out a strategy for me to make it to the game on time following practice. I left my car in a convenient place so that I wouldn’t have as far to drive to the game.

I met up with my daughter-in-law Stacey and rode to the game with her. At the game, Stacey was helping push equipment onto the field, and I thought I’d do a camera check before the band began their performance. I focused in on Stacey and the button wouldn’t push down. I tried several times, but nothing happened.

I looked at the screen and it said, “Memory card failed.” Well, that was a new one. The card I like to use was sometimes locked. Of course, I only had my camera—the extra battery and cards were in the car.

I took the card out, put it back in. Same message. Again, and again. Finally, success, and I snapped several good photos of my granddaughter dancing, twirling and tossing her flag.

Life certainly gets more complicated when memory fails—whether on my camera or in my brain.

Each of us counts on our memory to help us make it through the day. Dementia impairs memory enough that a person cannot complete daily tasks. Forgetting what I went to the closet to find caused an inconvenience, but it didn’t keep me from doing the things I wanted to do. I consider it a good sign that I eventually remembered my cap and found a substitute.

Without a resolution, my camera would have let me down at a time when I needed it. I’m glad that I resolved the camera issue and that the memory problem was a temporary thing. All it took was resetting the memory card. Now, if only, I can find a way to reset my brain when it lets me down.

Copyright © October 2018 by L.S. Fisher

http://earlyonset.blogspot.com

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Broken Minds and Broken Brains

Whenever I buy eggs, I always open the carton and look at the eggs inside to make sure the shells are all intact. Egg shells are fragile. A cursory look will not always spot broken shells in the carton, and the last carton of eggs I bought had two broken eggs in it.

Since I don’t want to get sick from eating a cracked egg, I threw the eggs away. Those eggs will never reach their full potential. They could have been scrambled, boiled, fried, poached, or used in a recipe. Eggs are versatile; at least they are, if they are not broken before their time.

Sometimes, people are broken before their time too. They can be broken mentally or physically. Humans are remarkably resilient, while being fragile at the same time. The mystery of why adversity makes one person stronger and breaks another is beyond my comprehension.

John D. Loudermilk wrote the country song “Break My Mind,” a song about one of the ways people are broken—through failed relationships. Minds can be broken by abuse, failure, humiliation, physical pain, loss, feeling trapped, feelings of not living up to expectations or potential, or PTSD from a past event. Some people become depressed, which can lead to suicidal thoughts.

Jim suffered from PTSD caused by his tour of duty in Vietnam. He dealt with depression and suicidal thoughts for several years. I believe this brokenness was brought on by his experiences in the military and exposure to Agent Orange. I also believe there is a connection between the effects long-term depression had on his brain and the dementia that would eventually be the cause of his death.

War doesn’t just kill and maim people during combat; it has residual effects that change lives forever. It makes some people stronger and breaks others. The VA reports that the suicide rate is twenty-two percent higher for veterans than nonveterans. Twenty veterans take their lives each day.

It took me a long time to realize that I couldn’t make Jim’s depression better. I am thankful that he didn’t commit suicide. Considering the vulnerability Jim had while surrounded by a loving family, I can’t imagine how dire the situation is for homeless veterans, or those set adrift because of alcohol and drug abuse.

In life, circumstances beyond our control can determine whether we live up to our potential or whether we lay broken and bruised. Depression broke Jim’s mind and dementia broke his brain.

Source: 2017 “VA Releases Veteran Suicide Statistics by State.” https://www.va.gov/opa/pressrel/pressrelease.cfm?id=2951

Copyright © September 2018 by L.S. Fisher

http://earlyonset.blogspot.com

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Biscuits and a Bunny

Some people find it hard to write, but for some of us, not writing is harder. Throughout my entire life, I’ve found writing to be a way to set my mind at rest, put things in perspective, and to, more importantly, move on.

Some of my friends and family, who had missed the hyperbole and drama, were floored when the social media queen left Facebook. I assure you, physically, I’m healthy.

Emotionally, I’m a mess. My heart is black with hurt and anger, my mind is spinning out of control for the things left unsaid. It is not my story to tell, and I respect that.

Getting off social media has its downside, I’m not seeing the photos my brother is posting during his trip, I’m not interacting with my Facebook friends, and I have nowhere to post the beautiful sunset photo I took a few nights ago. The upside is I’m avoiding the aggravation of the political uproar. I have more time to read. 

I’m catching up on all the chores set aside prior to our local Walk to End Alzheimer’s. We tackled the grass yesterday. The rain had made the yard too soggy to use the tractor and we’d mowed what we could with the regular mower. It finally dried up enough to mow with the tractor so Harold fired it up, drove out of the machine shed, and went to work.

I had trouble engaging my brain to figure out the sequence necessary to start the Bad Boy. The most I could get was a click. I thought that maybe the battery was dead. I went outside to see if I could get Harold’s attention, but he was already far away, and headed in the other direction. I tried several different moves, and finally realized the blade was down. Well, duh.

Mowing is a time to think, and my spinning thoughts made my eyes water, the words I wanted to shout made my throat hurt.

I had finished my part of the mowing and made a final swath down a bank through some too-tall grass. As I turned to climb up the bank, I noticed the grass moving. Curious, I stopped the mower and looked at the ground expecting to see a mouse or mole. Instead, it was a baby rabbit bleeding out on the grass. I cried for destroying the small, living animal who just happened to be in the wrong place at the wrong time.

This morning, I reminded myself of a person in the early stages of Alzheimer’s. I mixed up some biscuits to go with our leftover sausage gravy. Harold set the timer, but instead of putting the biscuits in the oven, I set the pan on the countertop. I bustled around taking care of other things, and about the time I poured an extra glass of milk, I realized the biscuits weren’t exactly baking. After resetting the timer, I put the biscuits in the oven and poured the extra glass of milk back in the jug.

The timer went off, I checked the biscuits, and closed the oven door. I proceeded to set out the dishes, get the silverware, and totally forgot the biscuits. When it crossed my mind again, I grabbed a mitt, opened the oven, and breathed a sigh of relief that they weren’t charred.

After a few bites, Harold said, “These are the best biscuits you’ve ever made. I love the little crunch on the bottom.”

“I like them too,” I said. “They remind me of Virginia’s biscuits. They always had that crunch.”  

Well, the biscuit story had a happier ending than the mowing story. That’s how life goes. Life isn’t fair and the good guys don’t always win. Sometimes, you feel like a perfectly baked golden brown biscuit, but other times you feel like you’ve been run over by a lawnmower.

Copyright © September 2018 by L.S. Fisher

http://earlyonset.blogspot.com

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Women and Alzheimer’s: The Double Whammy

Two-thirds of the 5.5 million Americans with Alzheimer’s are women. Why? The most obvious factor is age. Women have longer lifespans and are more likely to reach the age of highest risk. Women worry more than men do about developing Alzheimer’s, and with good reason. A sixty-five-year-old woman has a 20 percent risk of developing dementia during her lifetime. I don’t know about you, but I’m not happy with those odds.

Being a caregiver for my husband was never a part of my vision of our life together. Jim was decisive, a man of strong convictions, protective, creative, and loving. Never in my wildest imagination could I have envisioned the turn our lives would take when he developed dementia. And certainly, if an Alzheimer’s type of dementia had entered my mind, I would have thought of him as an elderly man, not one who wouldn’t live to see his sixtieth birthday.

The job of caregiver falls more often on women. They are two and a half times more likely than men to provide around the clock care for a loved one who is in the late stages of the disease. Female caregivers are daughters, wives, siblings, friends, and in younger onset—mothers. In a study of caregivers, indications are that females are substantially more likely than males to provide intimate personal care for their loved one with Alzheimer’s. Female caregivers assume responsibility for bathing, dressing, toileting, and changing adult diapers.

Caregiving adversely affects women’s employment. Twice as many women as men give up their careers entirely to be caregivers. Seven times as many women as men go from working full-time to part-time in order to be a caregiver.

I was in my forties when Jim developed dementia and worked full-time. Quitting work wasn’t an option for me. There were times when the challenges of juggling a job and caregiving seemed overwhelming. Jim required only about four hours of sleep at night, and I often went to work sleep deprived and emotionally drained. To further complicate things, from time-to-time I would receive a phone call and have to go home to tend to the latest challenge—wandering, refusing to let someone else do something for him, or just to comfort him when he was scared or depressed.

Think about it—as a woman you are more likely to be a caregiver for a loved one with Alzheimer’s, and then, after years of caregiving, you are more likely to develop the disease. We women have a large stake in ending Alzheimer’s. Our brains matter to us, and we want to keep them healthy throughout our lifetimes. We need to join together as women, as caring people, and as advocates to end Alzheimer’s now.

Copyright © September 2018 by L.S. Fisher

http://earlyonset.blogspot.com

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Walking in the Rain

When Mindy asked me if I wanted a tent for the Mozark Press sponsor booth at the Sedalia Walk to End Alzheimer’s, I said, “Yes, it will provide shade.” Last year, it was miserably hot.

Two days prior to the walk, the rain moved in. Sometimes, it sprinkled; sometimes it poured. The walk is rain or shine. I was definitely hoping for shine, even hot shine.

The morning of the walk, I was encouraged, but still wore my waterproof snow boots and my “Memory Walk” purple rain jacket from fifteen or so years ago.

Volunteers and the committee showed up at the Highway Gardens before dawn to set up tents, and arrange tables and chairs. I unloaded copies of Treasure Trove of Memories and put them on the table safely encased in their waterproof tubs.

Things were shaping up nicely—then, the rain came. Registration began and an additional tent was set up near the registration table. My team members started showing up, including my friend and fellow advocate, Jennifer, who had driven in from Jefferson City to walk in the rain with us.

A few team members watched my table when I went to greet Congresswoman Hartzler and her field representative, Rachel Gilroy. Rain dripped from the Congresswoman’s umbrella as I introduced her to family, volunteers, and Faith Bemiss, a reporter from the local newspaper. During an interview, Vicky Hartzler talked about Alzheimer’s research funding. After talking about the increases approved by Congress, she told the reporter, “Alzheimer’s is the most expensive disease in America.”

I escorted Congresswoman Hartzler to the stage area. As we were waiting for the presentation of the flag and the national anthem, I saw that WyAnn had her trophy, but mine was still in my car. Our teams won the trophies from last year, hers for the biggest team, and Jim’s Team for the best fundraising team. I sent a text to my son who retrieved the trophy from the car.

Congresswoman Hartzler shared encouraging words with the walkers. She spoke of her hope that a cure would be found in her lifetime. During the ceremony, she held a purple flower in memory of her mother and mother-in-law.

The walk began and I looked for my team. I found them, and realized the team banner was still in the car. The walk was a short-cut of the short-cut that we had used in the past. Most people headed to their cars while some of us started putting the tables, chairs, and tents back where they belonged.

This was my twenty-first walk and only the second time we had to walk in the rain. I’ve never been so wet in my life outside of a bathtub. The snow boots were great and never leaked. I peeled off my jacket and climbed into my car. My hair was plastered to my skull. I couldn’t remember where I’d put my comb so I fluffed it with my fingertips.

The difference between waterproof and water repellant became apparent. My Grand Champion shirt, which was hidden the entire day, was soaked. My jeans were soaked, but I wasn’t too uncomfortable because my feet were dry. The snow boots did the job!

Sometimes rain falls in our lives at the most inconvenient times, but rain is essential to life itself. I certainly didn’t blame the people who stayed home, but it was inspiring to see the ones who were compelled to come and walk. It did my heart good to see those who smiled, hugged, and encouraged each other.

I walked for Jim. I walked for all who have died from the disease. I walked for the five million Americans living with Alzheimer’s and their caregivers. I walked for my kids, grandkids, and babies not yet born. I walked for a world without Alzheimer’s.

Copyright © September 2018 by L.S. Fisher

http://earlyonset.blogspot.com

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