COVID Days -2022

I have been writing little “Mini” memoirs for the past several years. Each chapter is a short personal essay on a different aspect of my life, rather than a chronological “I was born . . . and then I died” longer piece.  My goal was to share a bit of my life with my family in an interesting format.

This piece was written in March 2023 as a therapeutic piece for me – trying to make sense of my loneliness. Hopefully, this will also provide a glimpse into what some of us went through during the pandemic.   

Alone Together . . .

From the driver’s seat of my SUV, I watch my husband shuffle behind his cherry-red walker, heading for another day “at work.” Depending on where his mind lands today, he’s going to national guard weekend, the police station, or Camp Dry Gulch. Perhaps it’s somewhere else in his past – only he knows for sure. The nurse slings his black “man bag” over her shoulder and gently leads him away from the car. The bag contains his “tools” for the day including several pairs of glasses, an iPad, an oversized magnifying glass, and a small flashlight. His “contraband” coke dangles in a snowman bag off the handle of his walker. I try to listen as he tells the nurse about his morning, but the door clicks and locks behind them.

Halloween Party at Daycare Today!

Bill is legally blind and has Alzheimer’s; I’m his caregiver wife. We’ve been married for more than 50 years; and, for the last thirteen of those years, he’s been unable to care for himself. Today, he’s going to adult daycare while I do some grocery shopping and whatever else I can do to distract myself from the fact that my life sucks. 

We moved to Galveston from Tulsa, Oklahoma, in January 2021.  Our daughter, Shelly, lives on the island and asked us to move down so she could help with her dad. She’s a teacher at Galveston College and has an apartment in the same complex. It’s a perfect solution. I get help caring for Bill which then gives me time to do things for myself. What I didn’t count on was the COVID 19 Pandemic lasting so long. 

I press “Car Play” and head for Sam’s Club, about 20 minutes off Island. Rain is on the way, and I don’t want to be stuck on flooded roads, so this will be a quick trip. I mentally prepare myself for the drive by listening to music.

“All by myself... Don’t want to be all by myself anymore…”

I realize the words blaring from the car radio describe exactly how I feel. I left my life in Oklahoma, and I haven’t been able to make friends here in Galveston because of COVID. My main communications with the outside world are digital. Text messages to friends and family. Zoom meetings for caregiver support and online classes. Digital messages from friends on Facebook. Unreal people in an unreal world.

And when I do meet real people, we’re wearing masks. We rush by each other, “at least six feet apart,” hoping not to breathe in COVID germs. No one looks at the other; after all, we only have half a face. I still don’t know what my primary care doctor looks like. What color lipstick does the librarian wear? Does the postal clerk ever smile? 

As I drive out of town, I find myself looking forward to seeing the homeless man on the corner of 61st and Broadway selling his “wares.” He doesn’t wear a mask. Instead, his sun scorched face peeks through a scraggly brown beard, unruly hair, and large, black glasses. He strolls up and down the median wearing a black and white baseball cap, camouflage shorts, and a fluorescent yellow vest. I roll down my window and ask, “How are you today?” He smiles and hands me a cold water, and I hand him a couple bucks. A smile from a real person. It made my day. 

I complete my errands, return home to a grilled cheese sandwich for one, watch two episodes of “Midsomer Murders” and wait for the clock to tell me it’s time to pick up Bill. 

He gets in the car and hands me a half-eaten chocolate cupcake. “I wanted to bring you a whole one,” he says, “but there wasn’t enough to go around.” I say, “Thanks” and ask him to hold it until we get home.  He then sits back and asks, “How was your day?” As we drive home, I tell him what I “accomplished” for the day. He’s satisfied that I had a good day, even if I’m not.

I can’t ask him what he did today, though, because it agitates him. Was he in Oklahoma? Delaware? Texas? Was he flying his helicopter, on military weekend, or working at camp? Who drove him there? Did he leave his uniform at work? He can’t remember. He’s alone, too, in his own little world.

We arrive home; alone, together. All by ourselves… 

Memoir: Crabbing

    I was walking Oreo yesterday and came across a fellow getting ready to go crabbing in the lake at our apartments. It reminded me of crabbing as a kid. 

We didn’t own a boat, but friends of ours did. Their home was on Love Creek, a few miles from our farm and the Atlantic Ocean. Every once in awhile, they would take us out crabbing. What I remember most is the excitement of catching them and the pleasure of eating them.

We loaded the boat with chicken backs, heavy twine, and some nets. Once on the water, we tie one end of the twine tightly around a chicken back, throw it in the water, and then wait. We have learned that the key to successful crabbing is to watch your string carefully. If you see it moving, there’s probably a crab on the other end. 

Next is the capture. I see my twine bobbing in the water. So, ever so gently, I pull the string towards the boat. Using my thumbs and forefingers, I rotate one hand after another, trying not to let the unsuspecting crab know he is about to become dinner.

As the crab comes into view - S-W-O-O-S-H! I scoop a net into the water and swallow the crab from the bottom up! Its blue claws grab at my net, getting tangled in the process. I reach in, grab him by the back of the shell, untangle him from the net, and toss him in a bushel basket. Feeling quite proud of myself, I send down another chicken back.

Within an hour, we collect a bushel basket full of beautiful blue crabs. Now, it’s time for cooking. This is the part I don’t enjoy. In fact, I try to stay far away from the kitchen until this part is over. Mom puts the live crabs in a big metal pot with a bit of cold water. Then she turns on the heat. The crabs begin frantically clawing and scraping at the sides of the metal pan, desperately trying to get out. This is the stuff of nightmares! But it doesn’t stop me from eating them when the cooking is done.

The now-red crabs are thrown onto layers of newspapers covering our eight-foot-long table. Dad and mom have beers, my brothers have cokes, but I skip the beverages. Instead, I concentrate on the crabs. 

While everyone else is enjoying themselves cracking open a crab, digging through the shell, eating the sweet and salty meat, talking, and drinking their beverages, I am busy hoarding. I, too, crack the crabs and dig out the meat; but I eat none of it. Instead, I pile the meat in front of me creating a mountain of seafood goodness. When all the crabs have been distributed, I drizzle melted butter over the pile of meat I’ve hoarded. While everyone else looks on, I dive in, stuffing sweet, salty, buttery goodness into my mouth, big lumps at a time. In between the savory bites, I think to myself, “Now, this is the way to eat crab!”

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.