Midnight

I used to think of midnight as the “witching” hour, but now I think of it as my absolute latest bedtime. I don’t know why, but it seems that no matter what time I begin preparing for bed, it is midnight before I actually crawl between the sheets.

Every night I go through a mental checklist: I prepare the coffee pot for the next morning, take the dog outside, fill the dog’s feed and water bowls, fix ice water for the bedside, put on my pj’s, take my meds,  brush teeth and use the Waterpik. It almost never fails that as soon as I lie down, I remember something I forgot to do.

Lately, I’ve gone to bed at midnight and awakened at 4 a.m. If I’m lucky, I can read my book for a while, and go back to sleep until a more appropriate hour. I’m pretty sure that the early wake up hour is a carryover from the days when Jim slept an average of four hours at night, which meant that I also slept about four hours a night.

On good days, I get to take a nap. On busy days, I just force myself to keep on going.

Today has been a busy day. I picked up my mom and we went to music practice at my brother’s house. I wasn’t sure Mom would go in the freezing cold weather. During our morning telephone conversation she said that it seemed like she just spent a lot of time in her chair and that she just didn’t feel much like going out. Anyway, she felt like going to music practice.

“I know how you feel. It seems the less I do, the less I want to go,” I said.

I’m always playing catch-up. I have so many tasks I need to do, and then there’s the chores I intend to do, and, of course, there are things I want to do. I want to play my ukulele and sing, so I look forward to practice and to playing at the retirement/nursing homes. We worked on some new material today and the challenge was good for us.

These short winter days throw a kink into my plans. I have trouble driving at night. My eyes have always been sensitive to light and the new ultra bright headlights give me a headache. Our club meetings are after dark this time of year. The drive into town for the last meeting was nerve-wracking, and that was in good weather.

I’m slowing down in my older age. Everything takes longer and my concentration isn’t what it used to be. I certainly cannot multitask anymore.

This is the last day of 2023 and one minute after midnight, we usher in a new year. I don’t plan to set any earth-shattering goals for 2024. I hope that I allow myself to rest when I’m weary, look for the good and overlook the bad, cherish the quiet moments, think happy thoughts, and be kind to others and to myself.

 

Copyright © Dec 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ 

Christmas Mouse and Angel Dog

 

Earlier this month I went to the basement, rummaged through the storage tubs, and decided how many decorations to scatter about the house. In the past few years, the tubs have been moved around due to some plumbing issues, and I often find my decorations right after the holiday.

As I rode the chairlift from the basement, I placed nutcrackers on the shelf next to the stairway. I was a little puzzled as to why I only had three of the four Wizard of Oz nutcrackers. The cowardly lion had apparently gone missing.

I continued to carry up ornaments, the table centerpiece, and various other decorations. I placed the centerpiece on the table and decided I needed to rest.

That evening, Harold called from the hall at the head of the stairs, “There’s a dead mouse on the floor.”

I rushed to see the “mouse” and told him, “That’s not a mouse, it’s a sprig off the dining table centerpiece.” OK, it was dark in the hallway, but really? I know he has trouble seeing, but the mouse would have had to be dead for a long time to turn green.

Later, we decided to begin by decorating the artificial tree that stands in the corner of the living room. Harold handed me the ornaments, and I placed them on the tree.

We leave lights on the “tree” year round and through the foliage, I sometimes miss ornaments. I found an ornament toward the back of the tree. “Oh, look, I said, here’s the Dalmatian angel I bought you when your dog died.”

I only brought up one fiber optic Christmas tree and it required no ornaments. I usually put up the silver Christmas tree that belonged to Harold’s mom and the small tree that was in Jim’s room at the nursing home.

Often, when I walked into Jim’s room, he would be gazing at the Christmas tree. I only put up a tree in Jim’s room and never went overboard with decorating. I’d learned my lesson the last time, I decorated when Jim lived at home. I was removing framed family photos from the shelves in the living room so I could put up Christmas decorations. I turned my back and Jim replaced the photos where they belonged. That’s when I realized that he didn’t want the familiar family photos replaced with the bright and shiny decorations.

I have so many nutcrackers that I haven’t been putting up all of them. Last Christmas I placed nutcrackers on the landing shelf on the west side of the house. I usually later replace them with snowmen and in February show off my elephant collection. Well, I have a hard time on those stairs because they don’t have a stairlift. About October, I thought I really should take down those nutcrackers…but since it was nearing the Christmas season again, I just left them.

I happened to think that maybe that’s where that cowardly lion was, but I looked them over and he wasn’t there. Another trip to the basement, and I found another group of nutcrackers. As I placed them on the shelf, I saw the mouse king. Hmmm, I thought I’d already placed him on the shelf. I took a closer look at the “mouse king” and discovered it was the missing Wizard of Oz lion. Guess Harold isn’t the only one that needs new glasses.

The house looks festive, without being overdone, and I enjoy being in the living room at night with the soft glow of the Christmas lights. When I walk by, I always touch the Angel Dog for luck. It may not work, but at least it doesn’t hurt anything. 

 Copyright © Dec 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ 

Mario Karts, Christmas Eve 2001

 Excerpt from Indelible:

Another Christmas. I put up a tree while I was alone in the house and didn’t cry.

The nursing home halls were ornately decorated for the holidays. “Jim stopped his merry walker in front of Santa,” the charge nurse said pointing at a wall hanging of the jolly old elf. “Then, he stopped and said, ‘Hello, Santa.’ ” She held up her hand as if to swear it was the truth.

“Wish I’d seen that!” I said. Jim spoke so rarely.

Along with the Christmas decorations, was a flag made with cutouts of children’s hands. It had been hanging on the wall since a few weeks after the September 11 tragedy.

A few days after the Santa incident, I noticed Jim stopping in front of the flag and tipping his cap. I thought maybe he was adjusting it, but a few days later, he stopped in front of the flag and saluted it. 

There was some discussion among the family as to whether I should bring Jim home for the traditional Christmas Eve gathering. My thoughts were that Christmas was for our family, and Jim was still part of that family.

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

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

“I wonder if he wants to play,” I said. At one time, Jim loved video games, and he played Mario Karts long after he developed dementia.

Rob ejected the game they were playing, and inserted Mario Karts into the Play Station.

“Here, Dad,” he said as he handed Jim a control. Jim didn’t seem to remember how to use it, so Rob passed the other control to Colby and helped his dad maneuver the one he held.

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

Colby, in true Fisher fashion, bragged about winning. “I beat Grandpa!” As young as he was, Colby was well aware of his grandpa’s reputation for being a formidable opponent.

After the game ended, Jim paced up and down the hall, but didn’t try to go out the door. He showed no interest in opening presents.

After the gift exchange, we loaded Jim in the van for the trip back to the nursing home. Jim didn’t notice the cheerful Christmas lights on the houses we passed.

About halfway through our trip, he yelled and tried to get out of his seatbelt. I may have bundled him up too much trying to keep him from getting cold, and instead he was entirely too hot.

We never knew that due to circumstances, and Jim’s declining health, this would be his last Christmas at home.  

Copyright © Dec 2023 by L.S. Fisher

http://earlyonset.blogspot.com

Making a Positive out of a Negative

 

Being a volunteer has changed the trajectory of my life. At first, volunteering for the Alzheimer’s Association was a way of making a positive out of a negative. Volunteering helped to offset the helplessness of losing Jim one memory, one skill at a time.

Jim and I were the only two people from Sedalia in the 1998 Memory Walk, and I volunteered to chair the walk the next year. I didn’t realize how many miles and years would follow. I was chair for five years and have served on the planning committee for more than twenty years.

For nineteen consecutive years, I made the journey to the Alzheimer’s Forum in Washington DC. At the Forum, we learned about Alzheimer’s research, attended plenary programs, soaked up information about research funding and legislative issues. On Hill day, a thousand Alzheimer’s Ambassadors armed with facts, figures, and personal stories wore purple sashes and visited their senators and representatives.

The first year I went to Washington, DC, NIH research funding was about $400 million. Because of the Ambassador program, funding for Alzheimer’s disease research at the National Institutes of Health has reached $3.7 billion annually.

The experiences I’ve had and the people I’ve met have enriched my life. The first year I attended the Forum, I met kindred souls: Jane Adams, Kathy Siggins, and Sarah Harris. I met and became friends with Alzheimer’s Association staff members, other advocates, celebrities, senators and representatives, and persons with dementia.

  The year I was to make my 20^th annual visit to Washington DC, Covid hit and the meeting was cancelled at the last minute because of restrictions. Because of health concerns, I resigned as an ambassador last year. I most likely will never go to the Forum again.

In 2008, I began to blog at earlyonset.blogspot.com. Writing was an outlet for my emotions, and I was able to help others by sharing my experiences as a caregiver. Annually, I print a book of my blog posts and use them as part of my Mozark Press corporate sponsorship at the Walk to End Alzheimer’s.

Each year after the Walk to End Alzheimer’s, I feel exhilarated, refreshed, and hopeful that a cure is imminent. The white flower at our walk symbolizes the first person to be cured of Alzheimer’s disease.

Like most Alzheimer’s volunteers, I have a connection to the disease and saw the Alzheimer’s Association in action. Their local Chapter helped me when I was at my most vulnerable.

My observation is that good volunteers have passion for the cause, take action and use their particular skill set to do their share of the work, and are willing to be part of a team effort. A volunteer needs a positive attitude to get past any disappointments.

Losing Jim to dementia was the greatest tragedy in my life, but I feel so blessed that we shared good times, hard times, love, laughter, and tears. He not only changed my life, he changed me.

Jim was the reason we went to the first Memory Walk. “We need to go to that walk,” he said, “because I’m having trouble with my memory.” That walk was the beginning of a new era in my life when I stepped out of my comfort zone and became a volunteer. I believe that I receive as much from being a volunteer as I give.

Photo credit Kevin Walker Photography, 2023 Sedalia Walk to End Alzheimer's

 

Copyright © Dec 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ 

Age is Just a Number

Dolly Parton, 77 years old, performed at the Thanksgiving Halftime Show at the Dallas Cowboy’s game to kickoff the Salvation Army’s Red Kettle Campaign. She looked stunning dressed in a Dallas Cowboy Cheerleader outfit. She sang “Jolene,” “Nine to Five,” and ended with a mash up of “We are the Champions,” and “We Will Rock You.” Dolly Parton proves that age is just a number. She attributes her youthful looks to “Good doctors, good lighting, and good makeup.” It’s hard to argue with that.

Having determined that age is just a number, I think my number ranges from sixteen to ninety. On good days when I listen to the songs popular in my youth, I mentally revert to a teenager. On the other hand, a weather change can make me feel like I have one foot in the grave and the other on a banana peel (as my dad used to say). Ninety might seem like a stretch to the younger side.

 We were singing at a nursing home and a man walked up to my sister-in-law and tried to get her to bet him $5 that he couldn’t guess her age. She said that she didn’t have any money on her, but he assured her that he could guess her age. He finally said, “You are between forty and ninety.” His observation made us laugh. I not only can’t guess anyone’s age, I’d hate to guess someone as older than they are.

I have a cousin who was brain injured at birth and although she is older than I am, she looks like a young person. Laney is always smiling and happy to see her family. When we play music, she is always waiting for us. She smiles and claps her hands when we come in. She expresses her joy in the simple moments of life and finds pleasure in simple gifts. Laney likes purses, jewelry, and fixing her dolls’ hair. She hasn’t worried herself into wrinkles. She celebrated her birthday this month, and she is proof that age is just a number.

Jim’s dementia made him seem younger at first. He became more childlike and dependent on me. I remember a cold winter night when our water froze at the well. Jim ignored my distress and continued calmly watching “Walker Texas Ranger” on TV. I called my son and my brother-in-law and told them our troubles. I put on my insulated coveralls, my boots, stocking cap, heavy gloves and stepped out into the night. By the time, I was bundled up for the cold, Eric and Billy were working on warming the well house.

I told Eric that Jim didn’t seemed the least bit concerned about not having any water. Eric laughed and said, “I bet he would have been upset if the electricity went off and he couldn’t watch TV.” When you remove the worried look from someone’s face, they do appear younger.

 My almost 97-year-old mother is the most age defying person I know. She always looks youthful and put together. When I call her and ask how she is, she will say, “Well, I woke up today so it will be a good day.”

I was relating this story to my former classmates at our last luncheon. After we chuckled, one of them said, “Yeah, until you don’t wake up.”

“Well,” I said, “I can’t think of a better way to go than to just not wake up one morning.”

Most of us wear our life experiences on our faces and our bodies. Still, I think the most wrinkled shriveled up person looks better than the person with bad plastic surgery. Nothing looks worse than skin stretched so tight that it’s shiny and lips that look like a toilet plunger. And why, oh, why would anyone want their butt to look bigger?

So, most of us look better with the faces and bodies that life gave us. Except Dolly. Dolly looks awesome.

 

Copyright © Nov 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Jingle, Jangle

This morning, fellow gamer and Facebook friend, William posted the song “Sugar, Sugar” by the Archies. I was one of the people he tagged with the question, “Do you remember this song?” I immediately answered that I did, and strangely, the song “Jingle Jangle” was what Jim and I considered “our song.”

Once you know the back-story, it may not seem strange at all. Flashback to Oahu, Hawaii, December 1969: I flew from the states and Jim from the jungles of Vietnam to exchange our vows and become husband and wife. We spent six days together, and in the wee hours of Christmas morning, Jim returned to the war and I returned home.

In my mind, Hawaii was forever linked with the music we listened to while we were there. We heard “Jingle Jangle” for the first time while we were in Hawaii, and it became our song. It was a happy, upbeat song and always awakened memories of sand, ocean, sunlight, and especially love. Our love was new, fresh, and exciting.

When Jim returned from Vietnam, He had another year to complete his commitment to Uncle Sam. Jim was stationed at Fort Riley and in 1970, we moved to Manhattan, Kansas. For the first sweltering summer, we lived in a one-room apartment. I guess you could stretch it to two rooms if you counted the tiny bathroom. We had one window and no air-conditioning, but at least we had a box fan.

In September, we were able to move into the main part of the house where we had plenty of room. We decided we wanted a stereo to play some vinyl, and went to a department store looking for one. As we walked in, we heard “Jingle Jangle” playing on a console stereo. We struck a deal with the sales person that we would buy the stereo if he would throw in the album that was playing.

Next stop in the story, winter, 2005. Jim lived in a nursing home, but I visited him every day that I possibly could. The following story is from Indelible, the unfinished memoir I’ve been working on for several years:

 

Jim and I were watching the playoff game between Denver and the Jets. The cable went off so I looked in Jim’s drawer and found an audio tape and popped it in his tape player. I pushed play and realized he had taped some of our old record albums.

 When “Sunday Morning Coming Down” played, Jim acted upset. Had that song stirred memories of when we lived in Manhattan, Kansas, right after he came back from Vietnam?

The Archies song “Sugar Sugar” began to play, he didn’t pay much attention to it. Mavie liked it. She had her doll and was swinging it around and dancing. She looked like she was singing the words, and who knows, maybe she knew the song too.

 Jim was running a temperature for the second night in a row. I walked to the nurses’ station to talk to Marie about his fever.

“If he gets worse, do you want me to send him to the hospital and then give you a call?” she asked.

“No. Call me first and I’ll take him,” I said.

Daniel came to the counter with a pair of panties. “Would you deliver this letter for me?” he asked, folding the panties and offering them to me.

“Daniel, I don’t work for the post office,” I told him. 

I got Marie’s attention, and she said, “Why don’t you give me the letter, Daniel? Hey, Hanes Her Way. I’ll see that she gets it.” That satisfied Daniel and he wandered down the hallway.

When I stopped at Jim’s room to get my coat and purse, “Jingle Jangle” began to play. That was “our” song, and the one that made my heart ache. I blinked back tears and kissed him on the forehead, and said, “I’ll be back tomorrow.” He closed his eyes and soon was napping peacefully.

Jim would have been on my mind on this day that honors veterans, but hearing the upbeat song “Sugar, Sugar” almost seemed like a gentle nudge from the other side. The love we had lives in my memories, in my heart, and makes my soul complete. In my memories today, Jim and I will walk hand-in-hand, toes in the sand, with our life together ahead of us. 

Copyright © Nov 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Communication

 

I recently gave a presentation on Communication for family night at a local nursing home. Since Jim had aphasia, I had experience communicating with him. A person with aphasia has difficulty with both written and spoken language.

Jim became a man of few words. As the disease progressed, he used familiar phrases. His favorite two phrases were “You’re going the wrong way” and “Right here but I can’t find it.” When he was searching for the correct word for an object, he would sometimes describe it. He might also point at the “thingy” when he couldn’t remember the name for it.

Jim would lose his train of thought. He might start a sentence and forget what he was trying to say before he got to the end of it.

The key to communicating with your loved one is to remember the three V’s. (1) Verbal (words), (2) Vocal (tone), and (3) Visual (facial expressions or gestures.)

You may have heard of the 7-38-55 Rule. The rule is that 7% of communication is the spoken word, 38% is tone of voice, and 55% is body language. Some experts say that the 7-38-55 Rule is not true, but when we communicate with a person who has dementia, this rule is valid.

 For Verbal Communication (7%):

• Gain their attention! Approach from the front, identify yourself and call him or her by name. Find a quiet space and avoid background distractions.
• Speak clearly. Ask one question at a time. Offer clear, step-by-step instructions for tasks. On vacation in Colorado, Jim picked up the coffee pot and looked puzzled. I realized he couldn’t remember the steps to making a pot of coffee. I guided him through the process, one step at a time. I waited until he had finished each step before telling him the next one.
• Ask yes or no questions. Instead of “What would you like to drink?” ask, “Would you like some coffee?” Be positive. “Let’s try this” instead of “Don’t do that.”
• Listen Actively! Nod. Make eye contact. Watch for clues. Jim often said, “It’s hot in here!” but he was shivering. Pause and allow time for the person to respond. Don’t expect a quick response or an appropriate response. Do not criticize, correct, or argue with your loved one.

For Vocal Communication (Tone of Voice 38% of communication):

• Be patient and calm.
• Keep your voice friendly. If you are angry about something else, your loved one may think you are angry with them. When I visited the nursing home after work, I practiced clearing my mind as I walked down the hallway to Jim’s room.
• Be respectful and don’t talk to an adult as you would a child.
• Speak conversationally in a normal voice. I used to tell Jim stories about his dog or the grandkids.
• Avoid asking open ended questions. Do not ask if they know who you are. If in doubt, tell them who you are.

 VISUAL: (Body Language and facial expressions 55% of communication)

• Give visual cues. Point or demonstrate and encourage non-verbal communication.
• Hold or touch your loved one’s hand to keep their attention and show you care.
• Consider the feelings behind the words. Your loved one’s emotions may tell you more than their words. Jim cried when he saw a relative that he hadn’t seen in a long time, and she thought she had done something wrong. I told her that Jim recognized and it meant so much to him that he cried.

Whether you use verbal, vocal, or visual communication, adapt to your listener. Try to understand the words and gestures your loved one is using to communicate and adapt to his or her way of communicating.

Tell visitors that it’s OK if you don’t know what to say. The most important thing is that you visit and let your loved one know that you still care. My brother-in-law used to take his guitar to the nursing home and play and sing some of the songs that he and Jim used to sing together.

My final thought: If your loved one can’t come to your world, go to theirs!

 

Source: alz.org

Copyright © Oct 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Scary October

 

October is a month of witches, ghosts, nightmares, and scary movies on TV. Make believe scary though doesn’t hold a black candle to real October.

You don’t have to believe in ghosts to be visited by one, and you don’t have to believe in witches to think that you have personally met one. There’s no way around the fact that strange things happen in this world.

October is the month when weird things just can’t help but happen. I can take my dog out at midnight any other month of the year, and enjoy the starry sky, a gentle breeze, a brilliant moon, and even a gentle falling snow.

On the other hand, go out at midnight in October and expect to hear coyotes howling, dark racing clouds obscuring the moon, the wind causing mysterious bangs and clangs, and the feeling that someone is watching…and waiting.

If you want to “see something really scary” (As they said the movie Twilight Zone) read the possible side effects of the medicine that you take every day. If that doesn’t make the hair on your head stand up, a ghost or goblin doesn’t stand a chance.

Don’t you just love the commercials on TV that tell you all the benefits of a medicine and show happy, tanned, and beautiful people enjoying life. Then in the last half minute talk at warp speed about the horrible things the medicine can do to a person.

 It seems that the scarier the disease, the more frightening the treatment. Makes you wonder which is going to get you first. We made the decision to try a study drug on Jim for his dementia. Knowing Jim’s personality before the disease, we knew that he would be the first in line for an experimental drug for a disease that had no cure. Unfortunately, the drug didn’t help him, and we had to stop it because of the side effects. It was a small study, but when we dropped out of the program, we found out that all participants had stopped the drug.

Jim showed a slight cognitive improvement with Exelon. As the dosage increased, Jim had to be taken to the emergency room because of the side effects. Before the drug cleared his system, he became agitated and was kicked out of the nursing home for behavior.

While Jim was in regenerations, an antipsychotic medication made him so aggressive that he was like a different, scary person. Eric and I took him out of the hospital for a few hours, and he tried to open the van door and mumbled obscenities.

After arguing with the physician, we insisted they take Jim off the medication. Within a few days, he was his old self again.

Prescription drugs are a part of everyday life for those of us who reach a certain age. In the U.S. around 16,000 people die each year from prescription drugs. More than 100,000 people in the U.S. die each year because they can’t afford the drugs they need.

There’s no doubt about it, real life is much scarier than make believe spookiness.            

 

Copyright © Oct 2023 by L.S. Fisher

http://earlyonset.blogspot.com

Running out of gas

The last time I drove to my brother’s house to practice music, I noticed that the gas gauge on my car was slowly sinking toward the big E. I didn’t want to go through town to fill up my tank, so I made the decision to head home. I knew that my next trip would have to be to the gas station.

I sometimes feel as if the big E is permanently attached to my body. I’m often exhausted, and regardless of all the tasks I should be working on, I make my way to the recliner to watch TV, code for “take a nap.” When I take a nap, it does help make up for my lack of sleep at night.

My alarm goes off at 5:30 a.m. to have quiet time before the day starts. The problem with getting up early is that most nights, I stay up until the witching hour. Then, I feed and walk the dog, fix the coffee pot for the next morning, fill our water containers to put at our bedsides, take my medicine and make sure Harold has taken his. Finally, I put on my pj’s (if I’m not already wearing them), brush my teeth and use my Water Pik. The timeframe that all this preparation for bed is often determined by how long the dog takes. Once I’m in bed, I read until I’m sleepy enough that I can shut my eyes and drift away.

My short nights are a carryover from my caregiving days. Jim would only sleep about four hours a night, and that meant I slept about four hours each night. I didn’t often have the luxury of a nap since I worked fulltime. At work, I coffeed and went through the days like a buzz saw. At home, I ran on empty on a regular basis and zombied my way through the weekends and evenings.

Life can be exhausting at times and it takes all the energy I can muster, and more. It’s staying at a task for one more hour, complete one more project, push it to the limit, and cross another item off the To-Do List.

Lately, as if there isn’t enough to do, we are completely renovating our rental house. Daily decisions have to be made until my head is spinning from the effort. We are flooded with bids, bills, and various contractors. By default, one trustworthy contractor makes sure that the other contractors do what they are supposed to do. We’re nearing the goal line on the inside, now for the outside. I will be so thankful when the house is finished and rented.

The main difference between the rental and the house that Jim and I built is that we did almost all the work ourselves. It took us a lot longer since we tried to pay as we went. We finally broke down and made a small loan to finish the inside. Every spare moment was spend building on the house, but when we looked at what we had accomplished it was amazing.

The thing about running on empty—when you fill the tank, you can go for miles and miles before the gauge shows the big E again.    

 

Copyright © Oct 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

The Ten Signs

 

 Several years ago, a friend and I went to see Bill Engvall in Columbia. As I neared the venue, I saw people holding signs, and I said, “Oh, look. There are protesters in front of the building.”

 When I was closer I could read the signs, and they said, “Here’s Your Sign.” Well, at that moment I wondered what it was a sign of that I hadn’t figured that out before I read the signs.

Life is filled with signs and clues. We might read daily horoscopes to see what the day holds in store. 

Signs are everywhere, including ten signs of Alzheimer’s disease.

 

1.   Memory loss that disrupts daily life. The most common sign of Alzheimer’s disease is short-term memory loss. Often old friends will not realize someone has dementia because they can remember in detail something that happened thirty years ago. “There’s nothing wrong with his memory,” one of Jim’s cousins told me. They had been talking about the old days, and Jim had perfect recall. What his cousin didn’t notice was that Jim couldn’t remember recent events no matter how important. 

2.   Challenges in planning or solving problems. Forgetting how to complete tasks that you once knew is one of the obvious signs. Jim was always mechanically inclined and could fix just about anything. After dementia affected his reasoning, he tore apart a vacuum sweeper and couldn’t put it back together. He tore into a VCR with the same results. The man that planned and built two homes couldn’t figure out how to measure the well house for siding.

3.   Difficulty completing familiar tasks. One day I asked Jim to make a grocery list for me. He took a pen and paper, and I started telling him what we needed. He wrote a few items on the paper and then told me he didn’t want to make the list. I picked it up to finish and noticed that although he had printed letters on the sheet, some of them didn’t make words. I remember he had written “taper powels” for “paper towels.”

4.   Confusion with time or place. Jim often asked me what the date was or the day of the week. Reading a calendar became too difficult for him. One time during a doctor’s visit, they asked him what season it was, and he didn’t know. He couldn’t answer the question  from multiple choice or clues. He also didn’t know what town he was in, only that he was at a doctor’s office.

5.   Trouble understanding visual images and spatial relationships. Jim had always been a reader, and we visited the bookstore on a regular basis. I began to notice that he bought several copies of the same book. I finally noticed that at night when he was reading his book, he wasn’t turning the pages. He couldn’t follow the storyline of a book or a show on TV . He watched To Hell and Back so many times that we replaced the VCR movie three times. He taped (or tried to) every Walker Texas Ranger TV show.

6.   New problems with words in speaking or writing. Jim had aphasia and eventually quit speaking except for rare occasions. At first, he occasionally printed something, but after about five years, he could only write his name—and his signature changed, with some of the letters in cursive and others printed. 

7.   Misplacing things and losing the ability to retrace steps. Jim was constantly looking for objects, but with his limited speech, he would say, “Right here, but I can’t find it.” Sometimes I could figure out what he was trying to find, and other times, I just helped him “look” because I had no idea what he had lost.

8.   Decreased or poor judgment. Jim became the telemarketer’s best friend. He didn’t understand what they were trying to sell and would agree to buy anything. I had to cancel Dish channels, tickets to charity events, and extended warranties. Some of the people were easier to work with than others. Since Jim couldn’t write a check or give a credit card number, they eventually had to deal with me.

9.   Withdrawal from work or social activities. Jim had always loved visiting with family, but as he lost his ability to follow a conversation, or to participate, he would sometimes just wander away from the group. We had always played pitch, and Jim went from being a formidable opponent to one who didn’t know which cards to play. Before he stopped playing completely, his mom sat by him and helped him.  

10. Changes in mood and personality. Jim’s personality underwent drastic changes. He liked to tell stories to the kids, he joked around with his cousins, and he was an expert on many subjects. All that changed. He became more childlike, sometimes docile, other times frustrated and angry.

 

The signs of Alzheimer’s or dementia are far beyond the typical age-related changes. I know that I can sometimes worry when I can’t find the right word, or find my cell phone, or multitask the way I used to be able to do. I also know that a recent scan showed “age-related changes” in my brain. My doctor assured me that it is not Alzheimer’s, but I needed to watch my “numbers” to maintain my brain. We all know that we need to use it or lose it under the best of circumstances.

Forewarned is forearmed, and I intend to stave off vascular dementia. Here’s my sign: “Monitor blood pressure, blood sugar, and weight.” So far, I’m doing fine, and I intend to keep it that way. 

 

 

Copyright © Sept 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Walking Since 1998

Last Saturday we had our Walk to End Alzheimer’s. It takes months of preparation and planning to have a successful walk. For several years, we’ve had a small core group. To add to the difficulty, we began the year with a new walk manager, who we met exactly once. Then, she left.

Being without a walk manager isn’t new territory for the Sedalia Walk. The three of us, WyAnn, Jessica, and I met and decided to set up our committee meeting schedule for several months. 

Eventually, the Greater Missouri Chapter found a new walk manager, and Julie turned out to be a dynamo. Although she had a long drive each time she met with us, she came to town often.

Last year we held our walk in the afternoon during sweltering weather. This year, we moved it to the morning to avoid the heat. As luck would have it, Saturday was much cooler anyway. People were wearing jackets, and I took advantage of the cooler weather to break out my 1998 denim “Memory Walk” shirt.

My family arrived and we took a group photo. During the opening ceremony, the MC announced that Jim’s Team was the best fundraising team. Following the flower ceremony, I spoke briefly about the 1998 walk and caregiving. I didn’t rehearse what I was going to say because I wanted it to come from the heart.

After the opening ceremony, the walk began. Ginger found a place on one of the golf carts, the rest of Jim’s Team walked through the balloon arch and stopped for a photo. After we walked through the covered bridge, I saw a sign that said “short” route, and I figured that was the route for me. The rest of the team opted for a longer route.

As I walked the short route, I paused to read some of the signs and meandered along the path, coming to the realization that the short route was beyond my capabilities. Luckily, a golf cart came up behind me and I gratefully climbed on board. I had a nice chat with my friend Anna Lee Bail, who coincidentally happens to be the most photographed person in town. She never misses a community event. In fact, she had left the walk for a while to participate in another fund-raiser that was taking place at the same time.

I had to leave soon after the walk, so my sons helped me carry the items from my sponsor table to the car. “I can unlock it from here,” I said. “I need to tell a few people goodbye.” They headed to my car in the parking lot, and I made my rounds and headed toward the car. My sons were standing by the car and it occurred to me that I hadn’t unlocked the doors.

As I clicked the locks, I said, half-jokingly, “Before long, you’re going to have to change the name of the team to Jim and Linda’s Team.”

For several years, I’ve noticed that my memory isn’t as good as it used to be. For about two months, I had bouts of vertigo. One day, I had a series of them and went to the emergency room. They started with a head and neck scan. The scan showed that I had some “age related” problems in my brain. I have to agree that getting old isn’t for sissies.

The important thing with age-related brain changes, according to my physician, is to watch my numbers: blood pressure, cholesterol, and A1C. Keeping active and maintaining a healthy lifestyle has always been a goal of mine. My arthritis has made exercising difficult at times, but I give my dog credit for dragging me outside on a regular basis despite my whining.

I’m giving myself the same pep talk that I would give anyone with health problems: concentrate on what you can do, not what you can’t do. A positive attitude won’t make your problems go away, but they make them seem less burdensome.

  I’ve also discovered that when I’m tired, I need to rest. If I’ve walked as far as I can, there’s no shame in accepting a ride on a golf cart.

 

Copyright © Sept 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Bookmaking, the Legal Way

 

Mozark Press has been a sponsor of the Sedalia Walk to End Alzheimer’s for more than a decade. Each year, I make a monetary donation and provide free books at the walk. The books are a compilation of the previous year’s blog posts.

I know it sounds easy to just take what you’ve already written, slap it into a book, and publish it. I’ve always found it to be more complicated than that. 

One of the first decisions to make is a title for the book. For the 2023 book, I had chosen a title midway through the year. Music was so important to Jim and it’s an important part of my life since I’ve learned to play the ukulele and joined the family band. With that in mind, I chose Music for the Soul as the title for this year’s book.

The process for a simple blog book: After I plug the book into a template, format, and edit it—then I fix the formatting, and edit again. I write an introduction and the back page matter.

Of course, every book has to have a cover. Until last year, my husband downloaded a template based on the exact page count, and used a fancy-smancy program to design the cover. Often this process took longer than formatting the book itself. Lately, we have used a free cover layout and modified it to suit our vision. That also turned out to be a lengthy process as we modified their cover—sometimes trying to fit that hypothetical square peg into a mythical round hole.

Once the cover was finished and the table of contents and pagination were correct, I uploaded the book to KDP (Kindle Direct Publishing). In a few short minutes, a digital proof copy was available for review. After about 24 hours, I received a notification that the digital copy of the book was approved for publication.

Without fail, I have always found more errors on the printed page than I ever could on a PC screen. To speed up the process, I ordered a copy from Amazon Prime. I don’t have to pay shipping and received the book in two days.

I read through the printed copy and marked multiple corrections with red ink and colorful Post-it page markers. After I finished, I painstakingly made the corrections and hoped that I didn’t make more mistakes while updating the manuscript.

What I have described are the mechanics of publishing a book. As I read the stories that I wrote the previous year, sometimes, it was almost as if I was reading them for the first time. The stories jogged my memory about events, thoughts, and feelings that were on my mind as various events unfurled.

The creative process of writing and publishing my blog posts is an integral part of who I am. The blog always brings me full circle. I explore the beginning as I remember Jim before dementia. I remember the middle when I talk about caregiving, dementia, and our journey through the decade of loss. In April, I remember the end when Jim left this world. Then, finally, I talk about picking up the pieces—and a new beginning.

 I’ve heard people say that writing and publishing a book is like birthing a baby. Sometimes the process is painful, but the joy makes it all worthwhile.

My box of books arrived the last day of August, so I don’t have the angst of wondering if they will arrive before the September 16 Walk to End Alzheimer’s. I breathe a sigh of relief to realize that my legal bookmaking is over for a while.

  

Copyright © Aug 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

If You Go Down

 

The last Saturday in August, I participated in the International Play Music on the Porch Day. This was the first year that I was able to sing on our sun porch. I was hoping it would be complete by the time the big day rolled around, but the tile hadn’t been laid and the shiplap wasn’t stained and finished.

This is the third time I’ve participated in the big day, but for once, I knew exactly what I wanted to sing. Recently, I discovered Kelsea Ballerini’s “If You Go Down (I’m Going Down Too)” song and knew it was the one song I was going to sing on the sun porch. 

I dragged all my music equipment out to the porch. I carried my ukulele and the dog trotted along with me. It was a beautiful, cool morning and just as I got set up, the guy that mows our lawn showed up. As I started recording, the mower buzzed past the window. Take 1,2, and 3 erased. After several attempts, I made it through the song without mower interruption.

The song is a humorous take about friendship that knows no bounds. A person is lucky indeed, if you have a friend who will, without question, have your back! I don’t know if I’d go to the extremes that the song implies, but I do have a few special friends and family members that I’d bail out of jail.

I remember one time my sister called me and said she was in jail and wanted to know if I’d go her bail. I was quickly calculating in my head how much money I had in the bank.

“What did you do?” I asked.

She said, “Embezzlement” and then laughed. She was “in jail” for charity and had to raise a certain dollar amount to do her part. With great relief, I donated.

Although we may (or may not) have friends that we would stick to through all pitfalls and disasters, we more often will have to know when a person has gone too far. At times all we can offer is tough love. We may have to say, “I can’t do that” when we get that call in the middle of the night, and someone wants you to bail them out of jail. Several years ago when I was living alone, I received one of those calls and although I was half asleep, I knew it wasn’t something I could do.

 I’ve seen heartbroken parents who refuse to enable their kids when they get lost in the illegal drug world. I had a conversation with a woman whose son relapsed and was circling the drain. She refused to help him saying, “He has to hit rock bottom before he will stop using.”

There are reasons to refuse to let someone drag you down with them. Imagine that someone is drowning and in their panic, they pull you under, and you both drown. In that case, if you have a long pole you can let her hang on and drag her to safety. Or you might throw him a floatation device and let the person save himself. It does no one any good if you both drown.

I know that as a caregiver, I had to work at not sinking into despair. I had to hold on tight to my own identity to continue life outside of caregiving. Friends and family who walked beside me and pulled me forward were the saving grace that kept me afloat.

Lately, playing music with the family band has been my lifeline. Relaxing with my ukulele helps me make it through some exasperating days.

I wasn’t 100% satisfied with how I sang the song, but knowing me, I could have gone through it twenty times and still would have found something wrong with it. I took the SD card out of my camera and inserted it into my PC. I used Movie Maker to finish the video and format it for Facebook.

In past years, my video was lost among the thousands of videos posted throughout the world. This year, was a little different. I started getting comments about the song. One lady said that it would be a good song for her trio. One of the Play Music on the Porch administrators said this was her new favorite song, and asked if I’d post it to the Facebook account so that she could share it. Songs posted to the community can only be viewed by other members and cannot be shared. Later in the day, the administrator said she had been singing the song all day!

I know the enthusiasm wasn’t for my singing, but for the song. It will probably take another year for me to find a song for 2024 Play Music on the Porch Day. In the meantime, the message for my best friends—if you go down, I’m going down too.

  

Copyright © Aug 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

The Lazy, Hazy, Days of Summer

  

When I took the dog out last week, we found thick fog and scorching hot weather. Later in the day the haze was gone, but the heat and humidity made outside time almost unbearable for me, and I’m not covered in thick fur like my dog. The heat made me feel lethargic—or one might say—lazy.

I could feel myself wilting when I had to take the dog out. At least when we finished outside, we came inside to a cool house with a dehumidifier. It still took time for me to recuperate after a stroll around the yard with a recalcitrant dog. The dog led and I followed.

On those foggy mornings, the heat made my glasses fog over. I sat on a chair in the shade, and the dog promptly jumped into the chair next to me. As we sat there panting in the heat, I suddenly felt a cold wind hit me for a few seconds. I thought maybe I’d left the door open, but it was closed. About the time I decided I’d imagined the cold wind, I felt it again.

It didn’t matter whether it was 6 a.m. or midnight, the air was heavy and oppressive. I thought about the hot nights when I was a kid and we had only a box fan to stir the air. Summers may not have been  hotter, but when you had no respite from the heat, it seemed that way.

When Jim and I first married, we rented a one-room apartment in Kansas without air-conditioning. We had one window, a screen door, and a fan for circulation. It got so hot at night that we wet a beach towel and put it over us.

Several years later, we lived in a two-story farmhouse, and the downstairs was comfortable even in the hottest part of summer. When we bought our land and moved a mobile home on it, we made it until June without an air-conditioner. It took us that long to decide that our mobile home was a heat trap in the summer.

Our favorite way to beat the heat was to go to the Rocky Mountains in Colorado. August was our favorite time to go because that’s when the weather was miserable in “Misery” as we often called Missouri. It was always great to put on a jacket and sit by the campfire.

I recall how vigilant I had to be with Jim during the summer. When he was inside the house, he sometimes wore his denim jacket to stay warm. In his confusion, he would try to warm the house up, but instead he would push the thermostat lower. I finally had to put duct tape over the control to keep him from pushing it as low as it would go.

One day I told Jim we would go to town to eat. After I was ready to go, I grabbed my purse, but couldn’t find Jim. I finally decided he’d already gone to the car. That’s where I found him, with all the windows shut tight, wearing his denim jacket, and sweating profusely. I couldn’t imagine what would have happened if I’d taken longer to get ready.

When the thermometer hits triple digits, it’s hard to stay comfortable without a fully functioning cooling system. I feel for those who suffer through the hazy, lazy days of summer without a way to cool down.

I hope we have an autumn this year and don’t go from the summer heat to the bone-chilling cold when all the winds are cold. As I bundle up to take the dog out, the summer heat will be only a fond memory. As for the dog—she prefers the snowy, windy, icy days of winter.

 

Copyright © Aug 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ