My husband Bill . . .

I met Bill while attending the University of Delaware where he was studying Entomology. He was also in ROTC where he became a 2^nd Lieutenant and earned his flight wings. In his spare time, he took photos for the local newspaper. 

On our dates, he would have his ears tuned to his scanner radio. If there was a fire or anything exciting that involved the police, off he’d go. Sometimes he would take me home, but often I sat in the car while he took photos of the fire or crime scene. Then it was back to his photo lab where he developed and printed the photos. Before he said goodnight, he would drop them off at the newspaper office for publication the next day.  

 

After we were married, we moved to Texas and then Alabama, where he continued his flight training to become a UH-1 Huey helicopter pilot. Then, as a 1^st Lieutenant, he was off to Vietnam for a year.  When he returned home, he worked for the Delaware State Police flying helicopters.

 

Bill retired early from the State Police because of an on-the-job injury, so he decided to go back to college where he graduated Magnum Cum Laude with a master’s degree in Photojournalism. His photos were published in many periodicals including the Saturday Evening Post.

 

During these years, we had also become active in children’s ministry. Bill built stages, dressed up as a clown who did magic, and even performed puppet shows all over the eastern part of the U.S.

 

After grad school, Bill went to work at Teen Challenge, a drug rehab ministry in Pennsylvania, where he taught job skills to recovering addicts and felons. Three years later, we settled in Oklahoma where Bill worked twenty years for a large church doing photography, graphic design, and computer work. In his spare time, he took photos for fun and rode in the MS150.

 

He may not remember, but Bill is definitely a man of many talents. . . 

The Beginning: Eye Troubles

Where did this all begin? It’s a question I’ve asked myself countless times when people inquire about how long Bill has been battling dementia. To be honest, I can’t pinpoint an exact starting point. Looking back now, I suspect it began much earlier than I realized. Many odd behaviors that I chalked up to his vision problems could have been early signs of dementia.

In 2008, his vision troubles began. One day his vision was fine; the next day, he said he couldn’t see out of his left eye. His eye doctor couldn’t explain what happened; thus began the seemingly endless medical visits we made to specialists all over the country.

Less than a year later, the other eye became affected. Now he had central vision loss in both eyes. Each specialist we saw began with a diagnosis of Macular Degeneration, but after extensive testing, they all agreed it was not. What it was, however, they could not diagnose. 

In 2011, I made Bill an appointment at Johns Hopkins in Baltimore, Maryland, to see one of the top eye specialists in the world. He interviewed us and told us to come back in a month. We flew out several more times over the next two years for extensive testing and treatment for Macular Degeneration. But, again, we were given no conclusive diagnosis other than it was definitely not Macular.

Finally, the eye specialist told us to accept that Bill was legally blind and adopt to his new reality. So, that was what we did. The next few years were filled with visits to the VA low vision specialists in Tulsa. They did an excellent job and even sent him to Tucson, Arizona, for specialized training. There, Bill learned how to use a cane, how to cross a street, and how to use the many devices he was given to navigate his new, dark world. 

Bill and Oreo- 2017

During these years, we joined a local support group for the visually impaired, Bill continued his involvement in ham radio, and he volunteered at the Broken Arrow police. He could no longer drive because of his visual impairment, so I had to drive him everywhere he wanted to go. But, at least he was getting out.

Looking back now, I recognize the subtle signs of dementia emerging as early as 2013. Bill, who was once a master of electronics, began struggling with his tv remote, iPhone, computer, and ham radio. He began misplacing his things and showing signs of hoarding. Over time, he became impatient and self-absorbed, sometimes exhibiting behaviors more akin to a child than the capable adult I had known. I assumed this was because he couldn't see very well.

Meanwhile, I was becoming frustrated, angry, and resentful. I couldn’t understand why he couldn’t do the things I asked him to do around the house. Why couldn’t he remember what I told him ten minutes ago? I felt smothered because he wouldn’t let me out of his sight, and I was exhausted from being a caregiver.  

It wasn’t until almost a decade later that we learned the truth. I often wish I had known sooner; perhaps I would have been kinder and more understanding. But when I'm honest with myself, I have to admit that that is not true. Even after knowing he had dementia, there were many times when I was not kind and understanding. The fact is, dementia reshaped our lives in ways we never imagined. It's a horrible disease and it's difficult for both of us. But we are facing it together, one day at a time. 

Day 2 with Hearing Aids

 I couldn't wait to post my 2nd day with my new hearing aids. I am so delighted that I bought these. As a review, I bought the Jabra Enhance Select 300 with the 3 year warranty and 100 day trial for $1995. Now for my second day:

Today, I took a walk up to the restaurant near the beach. As I walked outside by the lake, I turned on the nature mode and was delighted to hear all the beautiful bird sounds; sounds I had not heard before. Pelicans I usually hear, but some of the smaller birds that made twittering sounds had been out of my hearing zone. Not today. It was a bird symphony! 

The wind was blowing, but it did not interfere with my hearing at all. In fact, I could even hear the swish of the palm tree leaves as they blew back and forth, brushing against tree trunks. Never heard that before! 

As I passed an apartment that was having work done on its roof, I could even hear a workman on the roof talking to his coworker! 

Next I went into the restaurant. This was a small one so I didn't expect to hear much difference. But I did! As I walked in, it became very noisy with dishes clattering. One push of the button on my hearing aid and I switched into restaurant mode. I made some other adjustments on my phone because I was having trouble at first hearing the girl taking my order. Then I sat down and just listened. 

I heard the workers talking back and forth, taking orders, and even understand most of the orders being given. Next to me I heard someone tearing open a straw wrapper. I didn't know that made a sound! LOL! Then a worker turned on a blender! Waaa! That was loud, but a quick adjustment and the noise went away. The other thing that I had never noticed before was the music playing in the background. 

When I left, I had my second "Too loud" experience. I was standing directly in front of a car bumper when the owner turned the car on. OMG! That was loud! I had switched back to nature mode. I quickly switched modes and walked away. I wonder how that would have sounded in the Everyday mode? 

As I'm walking back home, I hear someone talking on the phone across the street and understand what they are saying! I hear people talking on their patios. Before I reach my house, I decide to take them out and experience the difference. It was huge! All the pretty bird sounds disappeared. No conversations, no trees swishing, just muffled sounds and a rare bird call. 

Next, I decide to go to Kroger for groceries for my covered dish on Sunday. This was another exciting adventure! My hearing aids connect to Apple Car Play! As I was driving I got a phone call through my hearing aids! Then, I used Siri to call someone else. That was fun! 

In Krogers, I noticed music playing again. I have never noticed music in Kroger's before! The other thing that happened at Kroger's was I thought I had lost one of my hearing aids in the parking lot. They are so comfortable, I was sure it had fallen out. Nope, it was there! 

All in all it was a great day. I came home and took them out for the day . . . trying to stick to the four hours a day for now. One of the ear pieces that sits inside the ear feels like it could be a tad bit too large, so I might switch to a smaller size. I'll ask the audiologist on Wednesday.

My score for these hearing aids is still A+! I'm very happy with them so far. I'll update after a large restaurant visit and the covered dish. 

UPDATE: March 30. I recommend these hearing aids 100% for anyone with low to moderate hearing loss. I am very happy with them. They do everything I need and more. They are comfortable, easy to adjust, and effective. I can't imagine how higher priced ones would help me any more. 

Day 1 with Hearing Aids

I did NOT realize how bad my hearing was until I got my new hearing aids! They came yesterday by Federal Express. It took me about a half-hour to get them in my ears, between making sure they were charged and figuring out how to work the app that goes with it. 

Yesterday, I wore them for about four hours. I went to a craft meeting that was in a medium size room with about ten people. I had no trouble hearing everyone or adjusting to the aids. I took them off when I got home and charged them overnight.

This morning I wore them to watch one of my favorite TV shows: Tournament of Champions. I took off the captioning I normally have on so I could test my hearing without the help of the words on screen. I did fine - no captioning needed! I did have to mute the tv whenever they had loud clapping. I will talk with the Audiologist to see if this is something that can be adjusted. 

The real eye opener came when I was three-fourths through the show and decided to take off my hearing aids. Without changing any settings on the tv, I took them off to see if I could tell the difference. OMG, it was like I was in a tunnel. I couldn't understand much of what was said at all! Now I see the difference! I really did need these aids! 

So far, I really like them. It was easy to learn to use the app to adjust for sound and noise level. There are preset settings for All Around, Restaurants, Music, and Outdoors. In addition, with a click of a button, I can customize each of these presets on a more personal level. 

  

On the hearing aids themselves, I can tap a button to change the volume or rotate between the four presets. Very easy to do and convenient. The app can be used to make more specific changes if needed. I'll be testing this more when I go to church and covered dish on Sunday. Today, I'm going to take a walk outside and see how they do.

They recommend that I wear them a few hours a day until I get used to them. So that's what I'm going to do. 

Next week, I'll have my Audiologist appointment to make any further adjustments, if needed. I will update after that. So far, A+ for these hearing aids! 

Getting Real About Hearing Loss

I've been dealing with hearing loss for over ten years, but the price of hearing aids and the thoughts of wearing them kept me from doing anything significant about it. About eight years ago, I bought an OTC pair for $600 and wore them about a month before I quit. They were one-size-fits-all and did not work for me. What a waste. 

Last year, I went to an audiologist who told me I have mild hearing loss and recommended I not waste my money on hearing aids, which were in the area of $8-10K. So I continued on with life. . . 

. . . pretending I hear when I don't. Here are some scenarios that give me trouble: I'm in the car riding with my friends chatting against the sounds of the engine humming, the tires on the road bouncing and rolling, and the wind beating against the car from all directions. Even worse, I'm at a restaurant dining among clanking dishes, the bustle of servers taking orders, and the high and low pitched voices of people conversing. Or, I'm at the opera or theatre, trying to understand not only what's happening on the stage, but also the friends that I go with. Lucky for me, they now have closed captioning on TV and at the Opera. I do have good eyes, but that's another story for another day! Unfortunately, my friends don't have closed captioning! In all these scenarios, I miss about 50% of the conversation; and, gradually, lose interest in being there.

Lately, I've noticed more comments from my friends and family about my hearing, so even they have noticed. Yesterday, I finally did something about it. First, I did research online to find out the prices of hearing aids and the different between OTC and Rx hearing aids. I knew that, in 2022, our government passed a law establishing new guidelines for selling hearing aids to those with mild to moderate hearing loss. And, since I knew my loss was considered mild to moderate, I settled on purchasing one of the new OTC hearing aids now available. 

First, I looked into Costco, which was highly recommended. I decided I did not want to drive an hour away every time I needed to deal with issues. The recommended hearing aids at Costco were the Jabra brand, so I did research on Jabra online by looking at reviews from audiologists and on BBB to learn about after-purchase service. Apparently, this is one of the best brands available at the price point, and it's equivalent to some of the better Rx brands, especially for those, like me, who have mild to moderate hearing loss. I finally settled on the Jabra Enchanced 300 with a three-year warranty and online support for $1995. 

They tested my ears online. I wore my Apple air pods with noise cancellation to take the test for an optimal in-home testing environment. 

Jabra offers a no-interest payment plan for 12 months, but I opted to pay outright as I didn't want to add to my monthly bills. However, this is a good option for those who don't want to pay in full.

The hearing aides, programmed to my hearing loss, will arrive on Friday. I have a ZOOM appointment the following week with their audiologist to help me learn how to use the Jabra 300 and to do any final programming. Then, I have 100 days from the time they arrive to decide if they are working for me. 

I'll update you on my progress and let you know how it goes. If it goes well, I hope others will take advantage of this new, lower-cost resource for hearing aids. From my own experience, I can see how hearing affects your mental health. I found myself feeling left out of the conversation and wanting to just stay home. That's not healthy for anyone. 

Seed Potatoes - A Memoir

College student or not, whenever I went home for the summer to my 220-acre family farm, I could not escape the endless cycle of farm chores. Today's chore was cutting up seed potatoes, a task my dad called, "character building." 

Each potato had to be cut into multiple pieces wherever there was a shoot sticking out. These smaller pieces would be planted in our garden for the fall potato crops.

The earthy aroma of these seed potatoes filled the living room as hundreds of them lay scattered across the floor. My dad and two brothers had hauled bushel after bushel of these potatoes into the house and dumped them in the middle of our living room floor, creating a veritable Mount Potato.  

With knives in hand, we dutifully went to work cutting each one into smaller pieces wherever a shoot or beady eye poked through. About 1/4 way through the phone rang.

“It’s for you, Cindy,” my mom says.

I pick up the phone, wondering who it could be. I was home from college for the summer and no where near any of my new friends. “Hello?"

“Hi Cindy, it’s Bill.” 

“Oh, hi Bill." My heart skips a beat, while thoughts of "What is he doing calling me? He lives in Newark, two hours away. How did he get my number?" are running through my head.

“What are you doing?” he asks. 

“Oh, just some stuff around the house,” I say, suddenly self-conscious of my unglamorous reality and not wanting him to know what I’m actually doing. 

To understand my utter discombobulation, you need to know a bit about Bill. His family is the pillar of his community. His grandfather was a doctor and has a school named after him. His father is retired, but was a Naval Academy grad, an admiral in the navy with his own ship, an aide to President Roosevelt, and the head of Civil Defense. His mom was a grad of University of Hawaii and had been a reporter for the Washington Post. They actually met at the White House, no less!

In contrast, my family were farmers. My dad had an 8^th grade education, my mom was an LPN, and I went to college on a scholarship. There was definitely a cultural divide between us.

“I’m here in Lewes,” he continues. “Can I come see you?”

Thoughts are racing through my mind. "I'm sure not ready for this. We haven't been dating that long! He’ll see us at our worst. We’re dirty from farm work. We live in a house built from a WW2 POW camp. And, we currently have Mount Potato as a centerpiece in the middle of our living room."

I decide to let him come. After all, he’s going to find out who I am sooner or later, and I really do want to see him. 

“Sure,” I say, “Come on over.” I mentally prepare myself that this could be his first and last visit. 

Less than fifteen minutes later he arrives. I don't remember his reaction; but knowing Bill, he took it all in and never showed any surprise or emotion. That's just the way he is. This, however, I do remember: he came, he saw, and yet he still married me. 

Although he now has Alzheimer's, I'd like to think that some part of him still remembers that day, fifty-five years ago, when he showed up amid the seed potatoes and swept me off my feet. As the Marvin Gaye and Tammy Terrell song says, "Ain't no mountain high enough. . ." to keep me from getting to you, babe. Even Mount Potato!

Adventures

Adventures, to me, are experiences, not necessarily destinations. My favorite adventures are the ones I took with my kids when they were growing up. After our school day, I would gather up snacks, pack the kids in the car, pick up a couple of their friends, and head off for a walk at one of the many outdoor parks nearby.

In Virginia Beach, the adventure of choice was often a swampy walk on the Bald Cypress Trail. We’d scurry across the wooden bridges that spanned the murky, black water, smelling of sulphur mixed with honeysuckle and pine. We’d climb over fallen, lichen-covered tree limbs that attempted to block our way. The kids were delighted when they discovered “secret” chambers in rotted tree trunks; a perfect stage for playing hide and seek.

(Image created in Adobe Firefly) 

No matter which path we took, skinny Loblolly pines stretched up high in the sky as if touching heaven itself. Spanish moss swept down from the branches like hair on a troll from one of our fairy tale books. 

If we were quiet enough, we’d meet a salamander, frogs of all shapes and sizes, and even an occasional Nerodia erythrogaster or water snake. The air was alive with the quiet noises of nature: birds twittering, insects buzzing, and squirrels scampering; only interrupted by children's' happy laughter. 

 

(Image created in Adobe Firefly) 

 In Pennsylvania, we were a mere ten-minute drive from the Appalachian Trail. After school, we'd grab our German Shepherd, Peppercorn, along with a few friends, and drive out for a day of hiking on the enormous boulders that lined the rugged pathways. The scenery was breath taking: mountains, forests, and overhanging cliffs that sink the pit of your stomach when you look down to the bottom hundreds of feet below. 

If we were lucky, we’d see deer, foxes, and rabbits. Occasionally, we'd meet someone hiking up the trail from Georgia. These folks always enjoyed stopping to talk about their adventures like we were old acquaintances.

I loved watching my kids experience the outdoors, enjoy their friends, and learn about nature. These are my favorite adventures and ones I will never forget.

 

 

Getting Older - Memoir

I thought getting older meant I’d be smarter. Don’t gray hairs prove wisdom? How come I forget where I put my keys? Or why can’t I remember that word I’m trying to say? Senior moments definitely don’t equal smarter. However, I do find I’m smarter in one way. I’m smart enough to know that I’m not as smart as I thought I was. Now, that’s smart! 

I thought getting older meant I would travel and see the world. My goal, among other places, was to visit Ireland; but no one mentioned that getting older might arrive before I had the money saved to go that far. According to Ancestry DNA, I’m only 5% Irish, anyway. So, I pivot. Let’s stay in America.

I thought getting older meant I would have children, grandchildren, and great grandchildren bustling around the holiday table, enjoying roasted turkey, stuffing with gravy, and tart cranberry sauce. I would spend my time reading my favorite childhood stories to all of my genetic offspring. No one reminded me that my children had to have children for that to happen. Too late. Should I adopt? I do have a foster street cat! I wonder if she would like to hear me read, The Iliad?

Getting older certainly didn’t turn out to be what I expected; that is true. I do travel, up and down Highway 45, to Houston to visit my husband of 54 years who has Alzheimers. He doesn’t remember when I’ve been, but at least I know I haven’t forgotten him. And I often take side trips to visit new friends, walk the trails, or shop for craft supplies. 

I take more prescriptions now. I have a missing thyroid, high blood pressure, high cholesterol, etc. Allergies strike now and then and my joints ache. I spend a lot of time sitting with my back against a heating pad, trying to cook the arthritis out. 

I find it easier to gain weight now, as well. One Kolache yields an extra five pounds an hour or so it seems. I spend much of my time watching my diet. Don’t add too much salt! Quit eating white flour and white sugar! Make sure you drink a gallon or so of water every day! Does coffee count? 

But getting older has it’s ups as well. I’ve met many new and interesting people here in Galveston. People I’ve grown to love and think of as extended family. I’ve experienced new learning adventures at OLLI’s including classes in international cuisine, memoir writing, artificial intelligence, and classical literature. I’ve tackled new skills like piano lessons, how to play AZUL, and how to make Spanakopita. 

Getting older also gives me freedom. I don’t worry about wearing the wrong clothes, winning arguments, or expressing myself honestly. There just isn’t enough time in my day to worry about these things. I want to smell the roses.

In spite of the negatives of getting older, I’m happy I made it this far. As my dear father-in-law used to say, “Consider the alternative!” Getting older definitely has its benefits. 

Chapter 2: The Landlord - A Deadly Dose of Disorder by Cindy Downes

     As I put the last of the groceries away, I hear heavy footsteps climbing the stairs. “Oh crap,” I say as I spot my landlord, Alec. Oreo barks, jumps up and down and runs around in circles, while I quickly pick up dog toys, newspapers, and coffee mugs before opening the door. 
    “Alec, what do you want,” I ask?“I need to discuss your lease,” he says, pushing his way through the door. I roll my eyes. Typical for him; he pushes his way through life.Alec picks up Oreo and tosses him off the lounge chair, thumps his butt down, and reclines his feet up.
    “How about some coffee,” he demands. 
    You might think I’m his housecleaner, I say to myself as I pop a Starbucks pod in the Kuerig. “Cream and sugar,” I ask?
    “Nope, black,” he says. “Got anything sweet to go with it?”
    After he’s comfortably settled with coffee and a chocolate chip cookie, he pulls out a lease and tosses it at me.
    I scan the five-page, size-8-font document and jerk my head back with a loud “What is this?”
    Alec swallows his cookie practically whole and drinks off the top of his coffee with a loud slurp. “What is what?” he asks, wiping his hand across his mouth.
    I notice a chocolate chip fall on his designer jeans, but I’m not concerned about that. I’m too distraught at what I see in the lease. My hands are shaking as I say, “You raised my rent $200 a month!”
    “Inflation,” he says. “Everybody is dealing with inflation these days and landlords are no different.
    “But you haven’t fixed the rotten door jamb or my dishwasher or the holes in the bathroom ceiling.”
    “I fixed your door jamb, just last week,” he says with a snarl.
    “You nailed the broken pieces back into place! That’s not fixed. All you did was prevent the rotten pieces from falling down.”
    “It worked, didn’t it? Besides, I’m going to remodel this place eventually.”
    “What about the dishwasher?” I ask.
    “Your dishwasher works. I ran it through two cycles and every cycle performed exactly as required.”
    “Sure, it works, but it doesn’t clean my dishes! I have to scrub them clean first or they come out as dirty as they go in. That’s not fixed.”
    Alec grabs his mug, lifts it towards me, and says, “I’ll have another cup.”
    I grab the cup and head back towards the kitchen as he yells after me, “And don’t forget the cookie. It was a bit stale, but it’s better than nothing.”
    By this time, I’m fuming, but I get his damn coffee and cookie and sit back down. I return my attention to the lease and notice he also increased the lease to two years. “What the hell is this,” I say, pointing to the lease. “Two years! You expect me to sign a two-year lease for this hell hole?”
    Alec takes a big slurp and sits back in his chair with a smug grin. “This is beach property, lady. I could be making thousands a month if this was an AirB&B. I’m doing you a favor.” 
    “AirB&B! That’s a joke, right? No one would rent this place as a vacation home. The walls have holes in them, the floor is warped, carpet is stained, stairs are breaking, the outside hasn’t been painted in God-knows when. You can’t be serious!”
    “I’m serious. Now are you going to sign the lease or what,” he finishes his coffee and begins to get up. Oreo sits back on her haunches and growls up at him. 
    I begin to analyze the options in my mind. Not many, I admit. I’m paying an enormous amount to keep Richard in Assisted Living. I couldn’t keep him home any longer. He was falling down and wandering. 
    At 250 pounds, there was no way I could lift him, so I was calling the ambulance on a regular basis to help me get him up. He began to wander out of the house and then forget where he was. Luckily, I say this tongue in cheek, he’s visually impaired so he doesn’t have a driver’s license, or he probably would have had silver alerts as well. 
    My children, Crystal and Cameron, insisted it was time to place him in a care home. The only one on the island I could afford was close by, but not the best place for him. It has no memory care. I really need to get him into a place with memory care but that costs even more money. All this is going through my mind as I ponder the lease in front of me.
    There is nothing on the island that is this cheap, even with a $200/month increase. I just can’t afford to move right now. I’ll have to cut back more on groceries and whatever else I can think of, but at least I can still be here on the island with Richard and the kids. I’ll have a roof over my head, even if it does leak now and then. Better than being on the street. I don’t want to have to compete with Ron on 61^st and Broadway! 
    “Fine,” I say, grabbing a pen from my desk. “I’ll sign your lease, but at least fix the hole in my bathroom ceiling.” I scribble my signature across the lease and hand it back to him.
    “Sure,” he says as he pushes off of the recliner and waddles his 300 lb frame out the door. “Next week. I’ll take care of it next week.”
    I shut the door after him and blow out a big breath. Exasperated is mild for what I’m really feeling. How am I going to pay for this and assisted living, too?
 
     

Chapter 1: Connie - A Deadly Dose of Disorder by Cindy Downes

Maybe I'll finish this book if I post the chapters on my blog in the order I write them. So, my Dear Readers, you are now going to get an unedited, preview of A Deadly Dose of Disorder, written by yours truly, Cindy Downes. There will be all kinds of errors and inconsistencies, but it will be fun. Let me know if you spot anything really crazy, especially inconsistencies- I need all the help I can get. I'll try to write and post a chapter a week? Every other week? Every month? Not sure. We'll just see how it goes. So, here's Chapter 1.

 Stacking groceries in my brand new rolling cart for stairs, I glance up at my apartment. No, it’s not much, but it’s home for now. The turquoise-blue paint is peeling and faded from the hot summer sun and salty sea air. The wood around the windows is slowly rotting from the moisture and island critters enjoying their lunch. The air condition sticking out the back window is rusted, but it does work.

My home, owned by Alec Thorne, sits behind a beautiful, historic mansion, also owned by Alec Thorne. He lives there as well. On the other side of a skinny, gravel-covered, trash-can-lined alley is another beautiful, historic home, which is also owned by Alec Thorne. This is why I call my home, “The Rose Between Two Thornes.” 

At least it’s a house instead of the tiny garage AirB&B I rented when I first arrived in Galveston a year ago. My new, or should I say, current home has one bedroom, a bath, a galley kitchen, a living room and a small area for dining. Downstairs is a laundry and some area for storage, which I use for my crafting room. 

I had to move from a beautiful, two-bedroom apartment I had rented near the beach to this place after placing Richard, my husband who has Alzheimer’s, into the Shady Rest Assisted Living Home. His condition had gotten to the point where even with at-home help, I could no longer safely take care of him. The cost of the nursing home came as quite a shock. It takes most of our income, so, to make ends meet, I moved into this very-run-down rental last year. It cut my rent by $600, so it’s worth it for now. My kids, Crystal and Cameron, help out as needed so I have no complaints. 

Dragging the heavy wheeled cart up the stairs is not easy even if this is supposed to be made for stairs. I had hoped to find a place without stairs, but that is almost impossible in Galveston. Most of the places are built with the idea that it will flood here off and on, so houses on stilts are the norm. 

As I struggle with the key to unlock the door, I hear Oreo barking and pacing behind the door. Oreo is my rescue dog - a Shizhu-Jack Russell mix. She’s the love of my life now that I’m alone. 

Oreo is twelve years old, but she acts like she’s five. She loves to take walks, chase squirrels, and play “Bed Pickle Ball.” While she stands on my bed, I stand at the foot of the bed and throw her ball against the wall behind the headboard. She jumps up, chases the ball as it bounces back to me, and tries to catch it. If she jumps up and hits it with her head and I say, “Yeah, a headbanger!” If she catches the ball, then we begin the chase around the house. She jumps off the bed, runs to the living room, around the sofa, through the galley kitchen, and back to the bedroom. I love that she gets so excited about a game, and it provides a bit of exercise for both of us.

I set my groceries on the dinette and pick Oreo up. “I’m home,” I say.

Antennas: More Signs of Dementia

Bill is retired from not one, but two careers. A former helicopter pilot, he also ended a second career as a computer technician in 2007. Now, he needs something to do in order to stay out of my way. A hobby - that’s what he needs. 

Bill is affable, kind, caring, and known for his conversational prowess. He also requires people, 24/7. He doesn’t play golf, garden, collect stamps, or any of the other usual hobbies one pursues in retirement. All he really wants to do is talk. Combine that with his love of technology, and he one day declares, “I’m going to get my ham radio license.”

He locates a club nearby, the Broken Arrow Amateur Radio Club, BAARC for short, and begins attending meetings. There are dozens of retirees here - all with an interest in talking and electronics. He has found his people!  

To stay active in the club, he needs to obtain a license; so, Bill studies for and passes his Technician’s class exam. Now, all he must do is acquire the tools of the trade, a radio and antenna. His first radio is a handheld Baofeng with a rubber duck antenna. He’s ready to rag chew!

During the next few years, Bill helps set up chairs for meetings, take photos for the club’s newsletters, and does whatever is necessary to make BAARC’s annual Field Day a huge success. Each Monday, he participates in the weekly “check in” with his call sign and a brief hello. Then, with a Coke in hand, he sits back in his Lazy Boy and simply listens. I’m surprised to discover that he rarely engages in on-air conversations. In person, he’s “Chatty Cathy,” but on the air, he merely listens.

In an unexpected turn, Bill begins to lose the central vision in both eyes, rendering him legally blind. His passion for “his people” and ham radio, however, persists. By 2011, he’s reached the pinnacle of ham radio success by earning his Amateur Extra class license, the highest rank possible. With more than 375 repeaters in Oklahoma, alone, he’s able to listen to the rag chew of ham operators from every corner of the state. He is in his own little heaven. 

 Meanwhile, I had completed a college degree started in the ‘60s and was now taking on the role as “head of the house.” Between teaching school, household responsibilities, and “Driving Mr. Bill,” I am too busy and too tired to notice the war that is beginning inside Bill’s brain.

One of the clues that something is wrong manifests in Bill’s insatiable quest for bigger and better antennas. He begins installing antennas all over the house, the yard, and even in the car. When I ask him why he has to have the next, “best” antenna when he doesn’t even talk on the radio, he says, “I’m going to talk more as soon as I get a better antenna.” 

Despite his visual impairment, he continues to find a way to fulfill his obsession, with or without the help of friends. One day, I’m in the kitchen preparing dinner when I hear a loud crash in the garage and him yelling, “Cindy, come here!” I open the garage door and find him hanging through the jagged hole in the ceiling. I rescue him with a ladder and plead with him not to work on antennas anymore without help. “After all,” I say, “You ARE legally blind.”

His obsession comes to a climax over a hex beam antenna. “I’m going to learn Morse code,” he declares one day. “Then I’ll be able to contact ham operators all over the world!” 

His ham radio buddies rally together to install an enormous, upside-down-umbrella-shaped antenna in our back yard that is powerful enough to reach Antarctica. It’s a chaotic explosion of wires and metal poles that I dub, the “Hydrogen Bomb.” An eyesore to me; but, to Bill, it’s his masterpiece. After installation, he sits back in his Lazy Boy and continues to listen.  

By now, I am noticing that Bill is beginning to repeat himself, misplace things, and forget how to use electronics. “What are we doing today?” “Where’s my iPhone?” “Would you reset my radio - I can’t find the 91 repeater?” In an attempt to keep up, I join BAARC myself and begin studying for my ham radio license.

One day, I decide to try out his ham equipment and new hex beam antenna. I now have my Extra license and am learning Morse code. When he notices me move his Key (the device used to send Morse code), he flares up in anger, screaming at me for moving his things. My kind, even-tempered husband had transformed into someone I don’t know; my first wakeup call that something is surely wrong. 

However, I continue to convince myself that Bill’s odd behavior is simply due to his visual impairment; so I begin looking for solutions. Maybe if I give him more independence, it will improve the situation. 

In 2017, I begin moving us to an independent living facility where they will provide food, housekeeping, transportation, and companionship. My goal is to continue to teach while giving Bill the support he needs to remain independent. 

Downsizing from a 3,000 sq. ft. house to a 1,200 sq. ft cottage is intense, but the worst battle is Bill insisting on keeping his prized, hex beam antenna. I explain to him over and over again that the facility will not allow him to put this antenna in the yard, but he insists a staff person told him he could. To keep the peace, I agree he can store it in the garage. 

We had barely settled in from the move when I return home one day to discover the “boys’ putting the finishing touches on Bill’s hex beam as our puzzled, new neighbors look on. Defying all odds and regulations, the Hydrogen Bomb has been resurrected - all 40’ of it, spread out over our new home like a metal fence at a federal prison. Reality hit: “I’m trapped in a prison of my own with a spouse I no longer know.”

The next day, the manager of the community promptly orders its removal, shattering Bill’s dreams. For the next three years, Bill futilely explores ways to hide an antenna in our new cottage while I consult doctors looking for an explanation to his increasingly bizarre behavior. 

“Maybe I could put an antenna in the attic?” he asks.

“No, you’re not going to fall through a hole in this attic,” I say.

“What about a J-pole antenna in the corner of the living room? We could hide it with a screen or something?” 

“No, I’m not living with *RF in the house.” 

Resigned, he pulls out his old handheld radio with its rubber duck antenna, his last connection to the radio world, sits in his recliner, and listens. In the quiet moments of these radio frequencies, Bill finds comfort, a sanctuary for his slowly deteriorating mind. 

As the years pass, his ability to use electronics ceases. His connection to “his people” ends, and even the rubber duck antenna is now gone. Bill is diagnosed with Mild Cognitive Impairment in 2019, Alzheimer’s in 2021, and psychosis due to dementia in 2023. His obsession with antennas remains an enigma, a poignant foreshadowing of Alzheimer’s and the long goodbye that is still to come.

 

*radio frequencies

 

 

Moving to Galveston

The COVID pandemic was in full force in January, 2021, the year we moved to Galveston. I wanted to make the move without stopping, avoiding any chance encounters with pandemic germs. However, driving 9-1/2 hours in one day was impossible as I was responsible for my husband, Bill, a cat named Felix who hates to travel, and a dog named Oreo who thinks travel is simply an adventure for discovering new sniffs. 

 

So, we spent two nights in hotels: the night of the move in Tulsa and again south of Dallas. Each night, before bringing my menagerie into our hotel room, I bombarded it with a high powered, disinfectant spray. I sprayed everywhere: doorknobs, drawer pulls, sinks, toilet, tv remote, clock, even the bedspreads. Nothing escaped.

“I’m paranoid,” I decided as I wondered who slept here last. Did they wear masks? Did they use hand sanitizer?  What if they had COVID?

Bill and I were both in our 70s, overweight, and had high blood pressure. In other words, we were high risks. There were no vaccines for this disease and masks were scarce. My brother had made us cloth ones to get us through until masks were available to buy. So that was something.

Bathrooms breaks and meal stops were also a problem, at least for Bill and the animals. If it was only me, it would be no problem. I don’t drink and I don’t pee - at least not very often. But between Oreo and Bill, it was mandatory to stop every two to four hours.

I insisted on taking wipes into restrooms to scrub down the toilet seats, door knobs, and sink faucets. Buying food at restaurants was another issue.  Are COVID germs hiding inside that cheeseburger just waiting to invade our digestive systems? Did the cook wear a mask? Wash his hands? Come in sick? It even crossed my mind that a deranged server might be waiting for the chance to give me COVID by spitting on my Chicken Fried Steak. 

Neither of us got Covid on the trip down, but to this day I’m particular about germs when I travel. 

Oreo with Covid hairdo and Felix looking out window in our AirB&B

We arrived in Galveston just at sundown; it was light enough to see the buildings but not very easy to see the street signs. I knew the island wasn’t very big, so I was sure I could find our B&B without much trouble.

The streets in Galveston are numbered chronologically one way and alphabetically the other.

Unfortunately, the address to our B&B wasn’t any help: 16422 R-1/2*. Is Rosenberg Street the same as R Street? What does 1/2 mean? “For Pete’s sake,” I thought, “Who makes up these street names?” Just then, I noticed a sign saying “P Street.” 

“We must be getting close,” I said. I turned left on P, drove another block and turned left again, hoping to spot a house number close to 16422.

About that time, a police cruiser came up from behind and began flashing its lights at me. I pulled over. 

“Oh damn. Now what have I done?” I wondered, reviewing the past few miles in my head. Did I speed? Go through a stop sign? A red light?

The cops got out and walked up to my car, one on each side. The one on the driver’s side motioned for me to roll down my window. 

“Do you know why we stopped you,” he asked.

“No, I don’t,” I said. “Sorry.”

“You drove down a one-way street the wrong way.” 

“Oh my god!” I said. “I didn’t realize it. I’m so sorry.” I struggled to hold back the tears welling at the bottom of my eyes.

“You barely missed a car and almost caused an accident,” he continued. 

“I am so sorry,” I repeated, unable to hold tears now flowing down my face. How could I miss seeing a car coming at me on the one-way street? Am I blind? The driver must have been furious! OMG, I could’ve been shot! What a terrible way to start our new life on this island.

“Where are you heading,” the cop asked?

“I’m looking for our B&B,” I said and gave him the address.

He patiently explained how to get there. My mind was not fully engaged because I was mentally counting up the cost of the ticket I was surely going to get and how it would affect my insurance payments.

“I’m not going to give you a ticket,” he said and then patiently explained that O and P street were one way streets running the length of the east island. I later found out the locals used these streets to get from one end of town to the other when tourists are in town. 

“Thank you,” I said, breathing a sigh of relief. 

I could see the police watching as I pulled out and continued on my way. I carefully looked for one-way signs, stop signs, and red lights. We finally arrived at the B&B and discovered it was a garage apartment behind a house, only accessible via a skinny, gravel-covered, trash-can-lined alley. No wonder I got lost. 

I pulled into the gate, parked the car, and stared up at the apartment. It was located up a flight of steep, open-air, wooden stairs. Bill is legally blind, has Alzheimer’s, and uses a walker to get around. How are we going to navigate this setup?

I sucked in a big breath, phoned the landlord, and informed him we had arrived. There was nothing I could do about the stairs right now. I might as well get on with it.

Grabbing the disinfectant, I said, “Don’t get out of the car. I’ll be back to get you in a minute.” 

I retrieved the key from our landlord, climbed to the top of the stairs, unlocked the door, and thought, “It’s going to be a really long ten days waiting for our furniture to arrive.”

*Address changed to protect the landlord!