The End of 2021

 

At our last music practice, I worked on a Roger Miller song, “Walking in the Sunshine.” It’s a peppy, short song and I figured it would be an easy song for our upcoming nursing home gigs.

When I sing the song, I sing it twice, and then use the first line of the song as a tag out. For the unsuspecting, it sounds as if I am planning to sing the entire song again.

 

I sang “Walking in the Sunshine” at a jam session with other musicians once, and I finally had to say, “The End.” Otherwise, I don’t know how many times, we would have gone through the song.

 

Once upon a time, movies and books always said “The End” as if you couldn’t figure out you had reached the end when the credits rolled on the screen, or there wasn’t another page in the book. Now, we get a little more credit for being able to figure it out, regardless of how ambiguous the ending.

 

Life is full of beginnings and endings. We usually look at beginnings with anticipation and high hopes. Endings can be a hot mess of emotions.

 

We go through this every New Year’s Eve. We realize that all the beginnings weren’t on New Year’s Day, and all the endings weren’t on New Year’s Eve. Throughout the year, we rode the rollercoaster of time.

 

In the past year, we welcomed a great grandchild into our family. Our grandson married his soul mate. Yes, we had happy times.

 

Adding to the highlights of the year, I’ve participated in some club meetings, we had an in-person Walk to End Alzheimer’s, and our family band played at area nursing homes. We had glimpses of life as semi-normal again, then new versions of the same old virus made us go off the rails. Family members were sick, friends died, and here we go again, and again.

 

Healthwise, this has been a challenging year in our household. Sometimes, I think my husband and I are racing to see who can check out first.

 

This has been a year of chronic pain for me. After a visit to the orthopedic doctor and shots in my knees, I’ve felt better the past week or so. How long will it last? No one knows, but at least I’ve been able to sleep.

 

We have found ways to solve our mobility problems this year. We had a stair lift installed to give us access to our basement. We replaced the steps to our garage with a lift. We use grocery pickup and have a cart to bring the groceries into the house. I don’t try to lift a gaggle of bags and carry them up the steps anymore. I simply load the groceries onto the cart and pull it into the house.

 

My doctor always reminds me to pace myself. “Don’t try to do all your housework in one day.” There wasn’t any chance of that happening when every step I took was painful. By the time I got the basics done, I didn’t have the time or energy to do anything extra. We were finally able to find a housekeeper! I think she gets as much done in four hours as I could in four days.

 

One thing about a challenging year—we don’t have any regrets that it has ended. As far as 2021 goes, we just need to say “The End” with authority.

 

Now, it’s time to punch our tickets and get on the rollercoaster for a new adventure. Look out,2022, here we come!

 

Copyright © December 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

 

 

 

Searching for Words

Our newspaper has word search puzzles, and I work them to relax. I know I could drag out my crossword puzzle books or Sudoku books for a more challenging experience. The trouble with those types of puzzles is that sometimes I’m stumped. With word search, I can, and do, always finish. After I complete the puzzles, I crumple the pages and throw them in the trash, so I’m not sure why I feel compelled to finish.

 

I work the puzzles willy-nilly where I circle the most obvious words first. I’ve found that in word search puzzles, as in life, the simple words are the hardest to find.

 

This morning when I was searching for words, I realized that as a writer, I often search for the best words. Stringing selected words in the correct sequence to convey a thought is much harder than it seems.

 

In real life, I sometimes find myself at a loss for words. When you know someone is hurting, or troubled, or angry, sometimes it is better to say no words, or at least a minimum of words. No one wants to hear, “I know exactly how you feel” because you don’t. An angry person does not want to hear, “you are overreacting” or “you are wrong.” If someone is troubled, she doesn’t want to hear, “here’s what you should do…” Nope.

 

Sometimes, I search for simple words—as in a thought I want to express. I can visualize the correct word in my mind, but it won’t come out of my mouth. I have the same problem with names of people I know, but they won’t topple off my tongue.

 

Searching for words to call objects can be a sign of dementia. It can also be a sign of an aging brain with overflowing figurative file cabinets and scads of misfiled information. When we are young, all that stored information is easier to access. As we age, I imagine our brains look a lot like a junk room where we have thrown decade’s worth of useless debris.

 

I find myself searching for more than words. I spend too much time looking for countless items that aren’t where they should be, or they are in a “safe place” where I put them so they could be found. Makes me understand why Jim kept saying, “Right here, but I can’t find it.”

 

Often, I search for meaning. Why does life deal us misfortune, pain, sadness, or adversity? Those answers aren’t in the Why? book that my grandkids used to love. With certainty, I can say that I don’t question the blessings of life. My greatest blessing is, and always will be, the people I love.

 

I seek peace and relaxation. The only drama I want in my life is through the books I read, TV shows, and movies.

 

I ask for God’s intervention to keep me from letting the words spill from my lips when someone rants on and on about viewpoints that border on insanity. I hope He grants me the ability to mentally chant the Serenity Prayer instead of listening or responding.

 

Let everyone search for the important words: Love, kindness, peace, faith, and joy. Remember, the simple words are the hardest to find, but if you don’t find them, you can’t complete the puzzle.

 

Copyright © December 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ 

 

Bittersweet Memories

December 20 always blesses me with mixed emotions. On this date in 1969, two crazy kids embarked on a lifetime together.

Last night, as I was trying to sleep, memories took me back in time. I remembered the emotions that flooded me when I got off the bus at the R&R center. Jim stood outside the building, and I still remember the elation I felt as we ran toward each other. I was eight hours late, and he was afraid I had changed my mind. My grueling day had involved delays from a bomb scare, a thunderstorm, and a connecting flight held up by a snowstorm. I had missed my own wedding day.

 

The next day, a Saturday, we had a new round of delays. We taxied to the mountains to get a marriage license, and the clerk would not accept my blood test because it was on an incomplete form. It had all the necessary information, so her husband took us to a clinic where a doctor transferred the information to a new form. We had missed the rescheduled appointed wedding time. Jim convinced the chaplain at Ft. DeRussy Chapel to wait for us. We signed the marriage license, his staff witnessed our signatures, and left. The army chaplain married us in an empty chapel.

 

Last night, I had flash memories of our short stay in Hawaii. We spent quiet evenings on the hotel lanai, swam in the frigid Pacific Ocean, lay on the beach and acquired sunburns, we walked hand-in-hand in Honolulu, and drove to the north shore to explore other areas of the island.

 

In the wee hours of December 25, Jim kissed me goodbye before I boarded a plane for home, and he flew back to Vietnam. We had no idea what the future would hold in store for us, or if we would even have a future. Life was uncertain.

 

As it turned out, we had many adventures together. We went through tough times, good times, happy times, sad times, but through it all, we always had love.

 

It’s almost scary to love someone so much that you aren’t sure if you can live without him. It’s beyond sad when a brain disease made his memories drift away like grains of sand carried into the ocean on the waves of the low tide.

 

Life either makes or breaks us. It is true that we don’t know how strong we are until being strong is the only option. Strength comes from within, bolstered by the love and support of friends and family.

 

Memories can be bittersweet—making us smile and cry at the same time. Love can bring great pain, but nothing else can make your spirits soar as high. To love life, you must love—love.

 

Around midnight I stopped reminiscing. I turned onto my side with my back to the edge of the bed, and snuggled into my pillow. I was about to drift off to sleep when I felt a light touch on my back. It was a gentle reminder that love outlives our bodies. 

   

Copyright © December 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Positivity, Persistence, Passion

 

I have deliberately slowed down over the past couple of years. I’ve only recently ventured out in a more normal manner and it’s been almost too much activity.  At times, I had to force myself to get in the car and go, but thoroughly enjoyed seeing people that I hadn’t seen in a long while. I will admit that these events raised my spirits, but left my body tired and my mind somewhat numb.

 

During the first week of December, life has been extraordinarily busy. In a seven day period, I attended two dinner meetings, a Christmas dinner, sang at an assisted living center, and topped it all off with an Alzheimer’s Impact Movement  (AIM) Zoom meeting.

 

The AIM Zoom meeting was a year-end celebration of our advocacy successes. It’s remarkable that we were able to continue our advocacy efforts without a forum. Advocates took to social media, email, and the occasional in-person visit to spread the news about our legislative issues and funds for Alzheimer’s research.

 

Before the pandemic, we advocates were 1300 strong at the Advocacy Forum in DC! When over a thousand advocates storm Capitol Hill wearing  purple sashes and speaking the same message, it does make an impact on our legislators. Our last forum in DC was in 2019. For the past two years, our visits were virtual, but successful.

 

The part of the Zoom meeting I enjoyed most was the Advocate Panel. Their topics were Positivity, Persistence, and Passion. The panel members each had personal, and heartbreaking, experience with Alzheimer’s.

 

Positivity is a contagious attitude. One of the panel members, Joe Arciniega from Texas shared a story about when he was asked to present a slide show with great Alzheimer’s information. He was impressed with the slides and enthusiastically accepted the challenge. On the day of the presentation, he discovered that everyone in the audience spoke only Spanish. With his rusty Spanish, he narrowed his presentation to the 10 signs of Alzheimer’s. He felt that the positivity from the audience was returned a hundred fold.

 

Persistence allows us to continue being effective advocates year round, year after year. All advocates have to be persistent to continue the fight for themselves and for others. We didn’t let a pandemic stop us from continuing our mission. Alzheimer’s advocacy is not a sprint, it is a marathon, and we want to see this thing through to the finish line.

 

Passion keeps all long-term advocates involved in the fight against Alzheimer’s disease. Aimee Isaac, one of the panelists, echoed my very own thoughts when she said that she felt powerless and reached out to the Alzheimer’s Association. From that point forward even small wins gave her a feeling of accomplishment. She also spoke of the importance of telling your own story when speaking to members of Congress.

 

I am positive that someday we will have an effective treatment for Alzheimer’s if we are persistent in our advocacy efforts. When we put our passion into action, we are unstoppable.

 

Copyright © December 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Out on a Limb

 

While at the park, I noticed a squirrel sprawled on a tree limb. That made me think of the expression “out on a limb.” Then, I wondered exactly where the expression came from and what it meant.

 

I did a little research and found that the expression was originally literally “out on a limb” because back in the day, people climbed trees. Well, hello, I climbed trees when I was a kid. My favorite tree to climb was sycamores simply because they had a lot of limbs. Two major drawbacks were the leaves made me sneeze and the limbs were brittle. My tree climbing ended when I went too far out on a limb and it broke. I went crashing through the lower limbs and didn’t stop until I was on the ground. It hurt, but since I was able to get up and walk, I went home and kept my mouth shut about the mishap.

 

The figurative version of “out on a limb” came into use during the late 19^th Century. The idiom means to take a dangerous, uncompromising, or difficult position that leaves you vulnerable without the support of others.

 

I felt I was out on a limb when Jim began to show symptoms of dementia. For about the first year, I was the only one who realized how much he had changed. Seriously, there were people in Jim’s family that thought I was the one with a problem!

 

Doctors thought it was everything but dementia, which was understandable because he was only forty-nine years old. We went through a myriad of diagnoses trying to find an answer. After a battery of tests, he was diagnosed with dementia of the Alzheimer’s type.

 

Caregivers often feel they are out on a limb. I’ve seen families torn apart by disagreements about how to care for a loved one with dementia. Sometimes the caregiving falls on one person while other family members criticize.

 

Caregiving is stressful and often lonely. Friends and families sometimes distance themselves from the caregiver and the person with dementia. It seems that when you need people the most some of them will leave you out on a limb.

 

Two-thirds of caregivers are women, and one-third of those are daughters. One-fourth of the caregivers are known as the “sandwich generation.” This means they are caring for a parent while they have minor children living at home.

 

I could never have made it through without family support—Jim’s family and mine. I had once cherished our “alone” time, but dementia gave a new dimension to alone time.

I don’t regret keeping Jim home as long as I could. It was a lot of stress and strain, and I remember feeling tired all the time. Still, there were good times too—quiet times when we held each other and let love erase the heartache.

 

You know when I think about it, that squirrel looked like being out on a limb was a good thing. He looked relaxed and confident, as if he were savoring the moment. There may be a lesson for all of us there. 

 

Copyright © November 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Giving Thanks

When I woke up this Thanksgiving morning, as usual, I made my way to my coffeemaker. I try to remember to prepare the pot the night before and have coffee waiting when my alarm goes off.

I poured Half & Half in my cup and started to fill it up. Instead of coffee, I was pouring water. Apparently, I forgot to put water in the pot—again. I opened the top to pour in the water and saw a soggy filter. The problem seemed to be that after I had re-filled the canister with coffee the night before, I forgot to measure the coffee to put in the filter.

 

Not wanting to pour hot water in the coffeemaker, I decided to pour it out. Then the light bulb went off, and I remembered a packet of Folgers that was used like a teabag. Anyway, I used some of the hot water to make a stop-gap cup of coffee while the real-deal was brewing.

 

Regardless of the coffee snafu, I was grateful that I wasn’t out of coffee. That would have really been a bad start to the day.

 

In true American fashion, I refused to let that sour a day of thankfulness for me. I get it honest, because when I called my mom this morning to wish her a happy Thanksgiving she said, “I woke up this morning, so I’m thankful for that.”

 

I was a little worried about her because yesterday morning she said she had no plans for Thanksgiving. Harold said I should invite her to eat shrimp with us. “Well, she isn’t too crazy about seafood, and I know she will have invitations a lot closer than us.”

 

She went on to say, “I’m ready for Tommy to come and get me at noon for Thanksgiving Dinner. Then, at four, someone will pick me up to go to Terri’s.” Sounds to me like my mom is going to be well fed today.

 

Thanksgiving was always one of my favorite holidays. My dad wanted all of us kids to be home for Thanksgiving. When you have a big family, half were going to in-laws for Thanksgiving and the other half for Christmas. Dad finally said they would take Thank
sgiving and the in-laws could have us for Christmas. Of course, like Mom, we always wound up having two Thanksgiving dinners. My mother-in-law always cooked enough food to feed an army.

 

After Dad died, we carried on the tradition for many more years, but eventually we opted for a family reunion, and later, we mostly got together on Mom’s birthday. Traditions change as our lives change.

 

When Jim was in the nursing home, I had holiday meals with him. His mom would fix up a plate of his favorites and I took it to him. I was thankful to spend that time with him. When his appetite waned, he still had a taste for his mom’s home cooking.

 

I’ve crossed many speed bumps during my lifetime, but I’m thankful to be blessed with family. We aren’t gathering in one spot today, but our hearts reach across the miles to connect us inside a circle of love. I am thankful every day for my family, not just today.

 

Millions of Americans choose Thanksgiving Day to count their blessings. I think a better choice would be if we had 364 days to count our blessings and one day to wallow in self-pity.

 

Copyright © November 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

It's About Time

Twice a year, Father Time plays a trick on us. Others try their hands at confusing the issue by telling people to turn their clocks in the wrong direction. When daylight saving time begins and ends, we simply have to remember, “Spring forward” and “Fall back.”

 Thinking about time made me realize that I have difficulty finding enough time to get everything done. My body sometimes rebels, and I wait for a better time.

 

It’s about time to take a step back and think about myself. I need to get more rest and work on pain management, not only for myself, but also for others. I need to quit putting off tasks and not ignore my to-do list so much.

 

I finally got rid of my landline. It was past time! For the past six months, I’ve found the ring to be an annoyance and stopped answering it. I still had caller ID from the days when I had to have it to know who was calling Jim when I was at work. Jim became the telemarketers’ best friend. He would try to tell me that somebody called, but he couldn’t remember who it was. He would say they wanted to know something but he couldn’t remember what, but he told them it was okay to do it.

 

I think it’s about time we are protected from telemarketers and scammers. We found out lately that many of those calls are coming from overseas and there’s nothing that can be done to stop them. People with dementia or unsuspecting elderly people are vulnerable to scams.

 

I’m longing for a time when I don’t have to constantly be on guard. Technology has turned an ugly face toward me with constant intrusions. I long for peaceful evenings and quiet time when my work is done for the day. Now, it seems that the work is never ending and interruptions break my train of thought and lower my productivity. At least my solitude isn’t broken with the jangling interruption of the landline ringing.

 

Time slips away. Days meld into weeks, weeks into months, months into years, and years into a lifetime. I hope for many good years and not years of pain and sorrow.

 

It’s about time for me to cherish the moments, let go of anger, and show love for my family, friends, and husband. I’ve always been a bear when I’m exhausted or hurting. It seems like lately that’s a daily occurrence.

 

It’s time to be thankful for life’s blessings and to use adversity to build character.

 

Copyright © November 2021 by L.S. Fisher

http://earlyonset.blogspot.com

T

Fighting the Doom and Gloom

 

Three days of gloomy skies and rain was hard on the body and soul. My body cried out for attention with the latest arthritic flare-up. My soul was depressed by the gray skies and lack of sunshine.

I can easily understand how dark days and darker nights could affect the mood of a person with mid-stage or late dementia. Caregivers find that “sundowning” creates additional challenges for a disease that demands extraordinary effort.

 

I took my dog outside in a whirlwind of rain. Halloween seemed to come a few days early with howling wind and sheets of rain forming ghost-like mist dancing under the dusk-to-dawn light.

The night was darker than usual since my solar lights had a few days without any solar to fuel them.

 

Between the rain and wind, my raincoat seemed inadequate. “If this is what October is like, I can’t imagine how cold winter is going to be,” I said to my husband. There you have it. Instead of enjoying fall colors as I usually do this time of year, I was dreading the days to come.

 

My battle plan was to open all the drapes, turn on lights, and listen to and/or read a book on my Kindle. I intended to watch TV for a while, but instead I listened to music and comedy on my phone.

 

Yesterday morning I stepped outside to a glorious sunrise. Well, it wasn’t a photo worthy event, but it certainly cheered me to see that golden orb shining through the trees. It stands as a reminder that no matter how dark our days on earth can be, the sun continues to shine.

 

My immediate future holds some trying times, but I really want to focus on the positive. I want to think about music, sunshine, lollipops, and rainbows.

 

When life seems to be hopeless and gloomy, we need to look beyond the clouds and feel the hope and warmth of the steadiness of the sun.

 

Copyright © October 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Stay Strong

 

Last year, I never bought the potted mums I usually put in the front yard, but I had three I’d saved in the garage from the year before. To my surprise, they bloomed. When they died late fall last year, I figured they were done. The pots sat outside the back door through the winter. The mums, of course, never developed green leaves so I dumped them out and put the pots away.

 

I was out walking my dog yesterday and I glanced over toward the small flower garden that we’d dug up in early spring. I did a double take, and there was a tiny mum blooming at the edge of the garden. I had discarded the plants because they were dead and ugly, yet one was strong enough to survive my bad treatment.

 

Have you noticed how some people seem to flourish no matter how badly life treats them? Others fall into despair at the first sign of adversity. It is a mystery as to how differently people cope with the challenges in life.

 

I just finished Kristin Hannah’s book The Four Winds. The story takes place during the depression and when the dust storms hit the Great Plains. Just when you thought things couldn’t get worse, they did. Elsa and her kids finally headed west to California where they believed they would have a better life.

 

I couldn’t help but think of the song, “California Cotton Fields,” that Jim used to sing. While looking for a change of luck, they found broken dreams, and hardships beyond what they could have ever imagined. Broken dreams do not always mean broken spirits.

 

When tragedy strikes, we can often rebound and continue with our normal life…eventually. When we have daily hassles that try our patience and undermine our confidence, we might buckle beneath the weight of our burdens.

 

Caregiving is fraught with adversity. The daily stress of providing a safe and healthy environment for another human being is crushing at times. Compound that with loneliness, lack of sleep, and constantly feeling overwhelmed and you have a recipe for disaster.

 

What are some ways of coping with life when you are bombarded with problems? I don’t know how other people do it, but here are some things that worked for me:

 

1.      Ask for help. Whether I received help from family, friends, or professionals, I finally came to the realization that I couldn’t do it alone. The most valuable resource I found was my local chapter of the Alzheimer’s Association.

2.      Join a support group. I was amazed at how much I learned during support group meetings. We exchanged ideas and I made new friends. Best of all, I learned from others and didn’t have to figure everything out on my own.

3.      Find a way to turn heartbreak into a positive. By becoming a volunteer, an advocate, and fundraising for the Walk to End Alzheimer’s, I found a way to turn my passion into action. I gained a purpose, a mission, and felt the positive energy when I  focused on my small victories rather than my losses.

4.      Take care of yourself. When I was a caregiver, I spent so much time taking Jim to doctor appointments, that I often neglected my own health. Then, one day I realized that he depended on me and if I didn’t take care of myself, I couldn’t take care of him. I made an effort to etch out time to relax, regroup, and rejuvenate.

 

Be kind to yourself as well as to others. No one is perfect and we all make mistakes, but if we focus on the multitude of daily tasks we do right, we can be more forgiving of our occasional hiccups.

 

Think about the mistreated and discarded mum that blossomed into a beautiful flower. Sure, it is smaller than a pampered mum from a garden center, but it serves as proof that if we stay strong we can not only survive, we can thrive.

 

Copyright © October 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Thinking Outside/Inside the Box

 

“We have a delivery,” my husband told me. “It’s probably the box to return the wheelchair leg rests.” We had bought a wheelchair online and one of the leg rests wouldn’t lock into place. The company sent us a replacement, but they wanted the defective part returned to quality control.

 

“OK,” I said. “I’ll take the dog out and bring in the box.”

 

I opened the garage door and immediately called Harold. “You need to come out here and look at this.” Partially blocking one of our garage doors was a pallet of folded boxes. A pallet!

 

He wanted me to send a photo, but before I sent it, he thought to look on the security camera. The next two hours were a whirlwind of trying to get someone to come and pick up the pallet of boxes. First, we had to deal with the confusion that both the company that delivered and the wheelchair seller insisted we had received one box. Well, our shipping label was on one of the boxes used to protect the bottom. Yes, there was our box, all right.

 

The clouds gathered and rain threatened. After I texted my photo to the wheelchair company, they promised to take it off our hands…eventually.

 

When all else failed, my son dropped by and moved the boxes from in front of the door. Eric said, “No one will pick it up today.”

 

“I can’t even imagine how heavy it’s going to be once it gets rained on,” I said. Eric rolled the boxes to the shop before the rain started. Now, I started to worry that they would come to pick it up when we were gone.

 

So, the outside boxes were now inside and safe from the elements. The whole experience brought to mind thinking outside and inside the box.

 

When I was a caregiver, I had to think outside the box often. Each day represented getting a pallet of problems when you wanted/expected everything to go smoothly. Jim wandered off and finally we thought to put an alarm on the front door. Why just one door when we had four? That was the only one he ever used when he decided to take off down the road. Every day brought about the unexpected from Jim, and thinking outside the box becomes second nature. It’s not unusual for the usual response to fail.

 

Sometimes, it’s better to think inside the box. One of the best things a caregiver can do is have a routine. People with dementia respond well to routine. Following a schedule for grooming, toileting, meals, activities, and bedtime make life easier for the caregiver and the person with dementia.

 

Sometimes, problems seem unsolvable, but with persistence and a little help from family, friends, or professionals, you can often achieve a satisfactory resolution.

 

The pallet that was dropped off Friday was picked up on Monday, while we were home. The boxes were on their way to the rightful destination.

 

My husband received an email from quality control saying they sent us new leg rests. Really? Again? Another email from the receiving department wanted to know why we hadn’t used the “box” they sent us to return the defective leg rest. It was from the same person we talked to when we received the pallet, with our shipping label attached to an open box tightly wrapped inside the packing straps.

 

“Now what do we do?” I asked.

 

My husband’s reply was “Not our problem.”

 

That brings up the final solution to problems beyond your control: Don’t think about the box at all.

Copyright © October 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

The Quiet of Dawn; the Hush of Evening

 

My morning routine is to pour a cup of coffee and either read or play games on my Kindle. When I’m interrupted before I finish my first cup, my entire day is out of kilter.

 

I love the quiet of an early morning so much that I am the first one out of bed. After my (hopefully) uninterrupted quiet time, I start the multitude of daily chores. It seems that I always have more to do than time to do it. Sometimes, I decide that there’s nothing I’d rather do than read a book, watch a movie on Prime, or talk to my mom.

 

Time: my enemy, my friend. Life is short and time is limited. How we make use of time can make us feel like a superhero or a zero. We have to remember that superheroes usually have an unassuming human persona. No matter how much needs to be done, there’s always tomorrow. Or not. If there is no tomorrow, would you want to spend your last day on earth finishing a routine, mundane task?

 

During the caregiving years, I was often overwhelmed by the loneliness, the sheer workload of providing care for another human being, the fear of the future, and the loss of the past. I sometimes felt like I was plugging along with superpower pushing me forward one day at a time. Other times, I felt like I was smothering beneath the weight of responsibility.

 

Like the rising sun, the light would break the darkness. I found daily strength drinking a cup of coffee, or watching the squirrels jump from limb to limb and tree to tree while spending a quiet moment communing with my inner self. The harshness of caregiving was tempered by the tenderness of love, caring, and hope that time would be kind enough to slow down the losses.

 

Like most caregivers, I learned to forge moments of joy into each day any way I could. Jim and I would go for a ride with the windows down, or walk in the park drinking milkshakes from Dairy Queen without worrying about the sugar or calories.

 

After a busy day of obligations, I like to enjoy the hush of evening. As the sun sinks, there is a perfect moment when the colors are glorious. Sunset is the most beautiful time of day and the most precious time of life.

 

Copyright © September 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Walk to End Alzheimer’s: Musical Shelters and Miles to Go

 

Last year the Alzheimer’s Association launched “Walk Everywhere.” We were excited to hold this year’s Sedalia Walk to End Alzheimer’s in person. The goal was for participants to feel safe and enjoy the excitement of being part of a community event.

 

This was my twenty-fourth walk, and I’ve seen just about everything that could happen, happen. One year we discovered within days of the event, that we didn’t have the Highway Gardens secured. After nearly having a panic attack, I felt so fortunate that some unlucky couple called off their wedding.

 

We’ve walked on mostly glorious sunshiny days, but we’ve also walked on cold September mornings, in sweltering weather, and during rain showers. Nothing compared to the deluge we faced in 2018. We slogged through the mud during setup, through the opening ceremony, and throughout the walk. It never once let up, and I was soaked from head to toe. In 2019, we changed the venue to Centennial Park with a walking trail and a large shelter.

 

After the 2020 virtual walk, we moved forward with plans for an in-person walk. An important part of any walk is logistics. I met Laura, our Alzheimer’s Association Walk Manager, at the park and we finalized the logistics at the big shelter. That afternoon we had the figurative rug swept out from under our feet. Laura received an email that said “sorry for the miscommunication” but Shelter 1 has been rented to someone else. Say what?

 

After one-sided negotiation, we were offered Shelters 3 & 4 for our event. I looked the area over and told Laura we could make it work. We knew the walk would be smaller than in the past. We had another logistics meeting at the new location and strategized a Plan B.

 

On walk day, I arrived at the Park around eleven o’clock a man was sitting in Shelter 3. “That man said he rented the shelter a year ago,” WyAnn told me. After looking around, we discovered Shelter 5 was reserved for us. Plan C was on the fly, but worked out nicely. We had more room between the shelters, and a lot of shade! Musical shelters worked out to our advantage.

 

The wind played havoc with the pinwheel flowers, signs would not stay upright, and I found one of my books blown onto the grass. The wind was both a curse and a blessing. The day did not seem nearly as hot as the thermometer said it was.

 

As soon as a team arrived, they would be encouraged to walk. I had asked Jim’s Team to be ready to walk at 1:30. After our team photo, sixteen of us hit the trail right on schedule. If my mother had been able to make it, we would have had a five-generation photo. My great-grandson Jackson was decked out in his “Walk to End Alzheimer’s” baby T-shirt. On the back, it said “Grandpa Jim’s Team.” The $555 online donations made him a “Champion.” As of walk day, Jim’s Team had raised the most funds, but we were still short of our team goal.

 

Although the Sedalia Walk had four Grand Champions ($1000 or more) and our tiny Champion, we fell thousands of dollars short of our walk goal. Hopefully, onsite donations and continuing online donations will eventually get us there, but we obviously have miles to go!

 

We have until the end of the year to meet our goal, Sedalia. I’m going to keep on fundraising and I hope you will too. If you haven’t had a chance to donate, you can make an online donation at alz.org/sedaliawalk.  

 

Those who have never been to a walk may not realize how uplifting and heart fulfilling it is to gather for a common purpose. We share the hope and confidence that we will someday have a survivor lift the white flower and hold it high.

 

When we walk, we walk for loved ones who have passed away from Alzheimer’s. We walk for those living with Alzheimer’s and their care partners. We walk for those who will develop dementia. Most of all we walk so that our children may know a world without Alzheimer’s.

 

Copyright © September 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

For the Good Times

 

Do you ever find yourself longing for the good times? What that means is unique to each person. For some, the good times were when they were a kid. For others it may be college years, or when the shine was bright on the wedding ring.

For some reason “for the good times” was bouncing in my head this morning. I’m not talking about the song, just the phrase. I sometimes go with my gut when writing my blog posts and that was, obviously, what I was supposed to write about today.

 

So the question remains—what are the good times? Strangely enough for all the writing I do about Jim’s and my dementia journey, I am not a person who thinks a lot about times gone by.

 

Some people’s idea of a good time would be parties, bars, and vacations. Parties never were my thing. I’ve enjoyed a few parties in my lifetime, but they wouldn’t make the list of “good times.” As far as bars, I’ve been in a few, but nothing memorable ever happened at one of them.

 

Now, vacations are a mixed bag. I thoroughly enjoyed most of our Colorado vacations. I loved camping in Moraine Park, animal watching, Jim playing his guitar to serenade the chipmunks, hiking the lesser traveled trails, and relaxing around the campfire. Good times.

 

On the other hand, we made an emergency trip home one year, had our tent drip ice water in our faces after a six-inch snow another time, and we had to settle for a different campground one time. All in all, it’s safe to say that the good times far outweighed the bad until the master camper lost his ability to become one with nature.

 

Our trips to Colorado became more challenging when dementia changed the landscape. One year, we almost failed at pitching our tent because Jim kept putting the wrong pieces together. We had to tear it down and start all over.

 

The year my mom and nephew went with us, we stayed in a cabin. We were able to prepare Jim’s meals and had room to relax. It was a good vacation until one morning I was taking a shower, and Jim wandered out the front door. My nephew went after him. He convinced Jim that I wanted to talk to him, and they turned around and came back to the cabin.

 

When I think back, good times were always tainted with a few bad ones, and the bad times were bolstered by the occasional good times. The ups and downs of life flow like a highway through hill country. We navigate hills, valleys, hair-raising curves, long stretches behind slow moving traffic, and dead spots where we cannot communicate with the outside world. Sometimes we pause at a scenic overlook and experience the euphoria of a wondrous view.

 

I’ve found that attitude alone can make or break the good times. I want to be lost in the joy of singing my songs, and not worry about the occasional mistake. I want to experience the sunrise filled with hope in my heart and not despair. I’d rather enjoy the sunset and not fear the dark. I want to watch the electric lightning and rushing clouds without worrying about the brewing storm.

 

Good times are not magic, but they can be magical. Optimism, fortitude, and good luck are all the magic we need. We make the good times, and we should make the most of them.     

 

 Copyright © August 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Balancing Act

During the Olympics, we discovered that no matter how talented a gymnast was, she could tumble from the balance beam. Considering the tricks necessary to get a good score performed on a four-inch wide beam, I can completely understand how easy it would be to miscue and fall.

I am not coordinated enough to walk on a four-inch beam even carrying a pole like a Flying Wallenda would during a highwire act. When you think about it, the balancing act of life is not about highwires or balance beams. When our lives are out of balance, we are setting ourselves up for an awkward, potentially life-changing fall.

 

We have to balance:

 

1. Work with Recreation. A person who never takes a break, a vacation, or relaxes with a hobby, endangers both physical and mental health. Our minds and bodies need some downtime to rejuvenate our spirits. Caregiving is intense and all-consuming and respite is imperative to remain healthy.

 

2. Sadness with Joy. It’s hard to stay upbeat when a loved one has dementia, but being sad all the time is wearing on everyone that has to interact with you. One of the sad realities I noticed was that Jim lost his sense of humor. I read humorous books, watched the funniest sitcoms and late night shows, and spent time with friends and family who shared common interests with me.

 

3. Alone time with Social Interactions. Alone time is the time we need for introspection. It’s too easy for a caregiver to be caught up in the busyness of everyday tasks, and fall into bed at the end of an exhausting day without any personal time. Caregiving can be a lonely time especially when your loved one cannot communicate with you. It is important to have friends and family for support and conversation. Friends are good companions for outings to movies, plays, concerts, or other activities of mutual interest.

 

4. Rest with Physical Activity. It is hard for a caregiver to get enough rest. Jim only slept about four hours a night, which meant I had four hours sleep too. Rest involves more than sleep, and that was in short supply too. My balance of rest and physical activity were not in sync and it showed. Running all day on four hours sleep made me pretty cranky at times. What did help was when the physical activity involved a leisurely walk.

 

Bringing life back into balance is a long-term goal that needs to be approached one day at a time. Once we realize that we will fall off the balance beam occasionally, we can pick ourselves up, climb back on, and move forward. We are less likely to fall if we stick to the basics and keep the “tricks” to a minimum.

Copyright © August 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ 

Side by Side

 

It was pancake day at our house—the easiest breakfast to fix. I put the sausage in the skillet and mixed up the batter while I waited for the sausage to brown. I fixed our pancakes, and since I don’t really measure, I was a pancake short.

I had already slid the pancake mix canister back into its slot, so I quickly opened the canister, mixed in a little water, and without missing a beat poured it into the skillet.

 

“This pancake isn’t browning right,” I said.

 

“Well, as old as the stove is, the burner has probably quit,” my husband said.

 

“It’s cooking, but it’s not getting brown.” I put the pancake on a plate and scraped out enough batter for another small pancake. “Something just isn’t right,” I said.

 

I turned around and looked at the canisters sitting side-by-side on the counter… “No wonder it looks weird,” I said. “I grabbed the flour instead of the pancake mix.”

 

“Flour and water make paste,” my husband commented. “That’s what we used to use to put wallpaper on the walls.”

 

I shouldn’t have made the mistake, but they were sitting side by side and neither one was labeled. We had a good laugh, and I stirred up some real pancake batter.

 

After the flour and water disaster, I couldn’t help but think of a day Jim walked into the kitchen while I made the first pancake. I didn’t have the batter quite right or the pan hot enough, so I had made a funky first pancake, which was not uncommon for me.

 

From Indelible (Memoir in Progress):

 

One day I was cooking pancakes and the pancake stuck and crumbled into a real mess. Jim walked into the kitchen and said, “What is that?”

“It’s a pancake. But you don’t have to eat it,” I assured him. “I’m going to make another one. I’m not much of a cook, but then you never married me for my cooking, did you?”

“I don’t think so!” he replied emphatically. Jim answered with one of the stock phrases he used after aphasia diminished his communication skills.

I laughed and said, “Well, you do remember why you married me, don’t you?”

He looked at me with a puzzled look on his face and said, “I have no idea.”

 

It always helped to see the humor in Jim’s reactions. Knowing how dementia affected Jim’s ability to speak, it’s quite possible that he may have known deep down why he married me, but he answered with one of his familiar phrases.

 It’s pretty safe to say that Harold found humor in my flat cake, no-flavor mistake. It hadn’t interfered with his breakfast at all since he had already polished off his pancakes before I messed up.

 Just for fun, I tasted the mock pancake. It was as tasteless and yucky as I imagined. I threw it in the trash and had another cup of coffee. Who knows, maybe if I’d had the second cup of coffee before making pancakes, I might have noticed that although the contents looked the same, the canisters did not.

 

Copyright © August 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ