Assignment from my Therapist

December 20, 2024

Watching Bill go through the various stages of dementia is heartbreaking. In fact, I spend a good portion of my time in therapy crying about it. My therapist suggested I write about how I feel as a form of processing. So here goes . . .

At our age, arthritis is part of life; but, Bill doesn't understand that. He's always had an extremely low tolerance for pain, and he's also allergic to most pain medications. He doesn't understand why he hurts and why we can't make it go away. I feel heartbroken.

Bill is visually impaired with no central vision, so he continually asks for an appointment with the eye doctor. He doesn't understand that we've been there many times, and they've done everything they can to "fix" his eye. He just wants glasses so he can see. I feel incompetent.

Bill's reality continues to slip further away as the disease progresses, despite changes in medication. Some days when I visit, he tells me he is a famous star, and he's being hunted by paparazzi. Other days, he's working on imaginary jobs and having trouble with his "staff." He thinks people are out to get him and he's frightened. I feel powerless. 

He's overweight, his legs no longer work, and he's stuck in a wheelchair. He can't lift himself, so he has to be lifted by a machine to get out of bed or go to the bathroom. I hate hearing him cry out, "It hurts; it hurts" as they turn the wheel to get him upright. Why can't they make a better way to get him up and down? It reminds me of cattle strung up to be butchered. I feel angry.

The VA facility where Bill resides is excellent. It's spacious, super clean, and staffed better than most nursing homes. However, visiting Bill there still offers a grim preview of his future—a future I’m helpless to change. In the two years he's been there, I've watched residents in various stages of the disease come and go. Every week, I see visitors gently trying to coax their loved ones to eat, offering meals of lifeless, gray mush—meat and vegetables blended into a flavorless paste to avoid aspiration. I see residents slumped over in their wheelchairs, sleeping for hours at a time. The staff encourages them to move, to catch a ball, to sing a song, or to color on a sheet of paper. But they just keep sleeping . . .  I feel frightened.

Why can’t there be an easier way? We don't let our pets go through this. I wouldn’t let my dog, Oreo, suffer like this, but I can’t stop Bill from going through it. And if I could, would I make that decision? To end his life? It’s agonizing enough to make that decision for an animal. But, for my husband? I don’t think I could. I feel spineless . . .

Missing Connections

December 17, 2024

As I was walking Oreo this morning, I snapped this picture of the fog blanketing Galveston. One building caught my eye – just barely peeking out of the dense mist surrounding it. The scene reminded me of how I’ve been feeling lately . . . disconnected, adrift, unseen.

I’m not having a great week. I don’t want to go see Bill. I want to forget I'm married. I want to pretend I'm a normal 75-year-old widow trying to live out the rest of my life. But I can't.

My therapist says I'm searching for "connection." And it’s true. Like the building in that photo, my connection to Bill feels severed but not completely. It’s like an electric cord that has been chewed on by rodents. It sparks now and then, but no electricity runs through. I'm desperately searching for a source of "power,” but all I find is emptiness. 

Some days, this emotional roller coaster feels unbearable, other days not so much. Today, I’m feeling angry, sad, and guilty, as well as mad at myself and feeling very ungrateful. Eventually, I’ll get over it and act “normal,” whatever that means.

In the meantime, I need to figure out how to get my “power" back, despite the circumstances. Back to my therapist! Until then, I'll sit at my piano. Like David playing for Saul, I’ll play to soothe my restless, tormented soul. 

Increasing Bill's Rx

Bill has been getting more and more agitated and paranoid these last two months. I was planning to talk to the staff tomorrow to ask them if it's time to adjust his meds again. However, I just now got a phone call from them. The psychiatrist saw Bill today and has decided it's time to up Bill’s Rx, again.

I'm so glad they are on top of it. I have been struggling watching him get more and more agitated the last few weeks. His ramblings have gotten wilder and wilder from paparazzi coming after him to looking for missing children. He's also gotten into verbal tussles which have almost ended in a physical fight, had the nurses not intervened. This is the kind of behavior that put him in the psych ward last year. 

I'm so thankful for the VA Memory Care. How would I do this without them? I am so lucky to have this service. My heart just breaks for all the spouses (and children) out there who are taking care of their loved ones with Dementia and do not have the means to obtain help. We have got to find a solution . . .

Pearl Harbor Remembered, An Interview With my Father, James Luther Edwards

On this day, the anniversary of the Pearl Harbor attack on December 7, 1941, I wanted to share an interview with my dad, who was stationed there during the bombing. This interview was originally published by the Delaware State News in 1985. My dad passed away in 2005. 

It begins like this:

"It was early in the morning on Dec. 7, 1941. James L Edwards, then a 28-year-old soldier stationed just outside of Pearl Harbor with the 65th Combat Engineers, decided to go for a swim."

Two Years and Counting . . .

This month, Bill has been in memory care for two years! I can't believe it's been that long. We had a "good" day today. He was glad to see me and very happy that I brought him homemade lasagna! We had a nice visit and he was mostly aware of what was going on. He did really good in exercise class with his arms; his legs, no.

I actually got to see them use the lift on him, today. I had never seen it in action before. They roll him up to it, fasten a belt-like thing (which is hooked to the machine) around his back, and then turn it on. The machine does the work. Because he is such a big man, no one can help him get up and down now. You can see the machine - it's the blue piece of equipment.

The sad thing is, that with arthritis in his knees and hips, it hurts him when the machine pulls him up. So he began yelling, "ouch, ouch, ouch" as it pulled him up. I know it's a necessity, but it was so sad to see him like that. Hateful disease . . .

Living the Life I was meant to live! (almost)

I finally feel like my life is what I envisioned it to be as a "retired" person. I know Bill is being taken care of, so I'm not currently worried about him. It's one day at a time on that one. 

Yesterday, my son, Wil, created an Ai program to try to get Bill to talk more about the life he currently remembers which is the 60s and 70s; maybe some 80s. It was amazing to watch. In 30 minutes, Wil whipped up a simple Ai that he programmed with lots of info about ROTC, Ft. Wolters and Ft Rucker helicopter school, and Vietnam. Then he directed the Ai to use the info to engage Bill in conversation. It definitely had some flaws (interrupted when it shouldn't and focused two much on certain questions), but it was mostly successful. Because of the way it was programmed, it asked questions that we would never had thought of, resulting in Bill talking about a portion of his life that we had never heard before. Wil said he would correct the flaws in a future version and try again over Christmas.  

At home, I'm happily situated in a small town with good people in an apartment that I enjoy. Oreo and I are getting lots of good exercise and fresh air. The new gym is fantastic! I set a goal to work out in it 2x a week so it's an easy goal to keep. 

 

Oreo and I enjoy the view in the morning whether it's the birds in air, the boats scooting around in the water, or the cruise ships docking. 

I even changed my Facebook page to reflect my new life. I want to feel more positive.

So, for now, life is good. I'm going to enjoy it while I can! 

Keeping Busy

One way I stay grounded is by keeping busy. I take classes at OLLI, including water aerobics, yoga, cribbage, canasta, and cooking. I also take piano lessons and meet with my writer friends once a week to write. Now that I have my new apartment with space for crafting, I’ve started working on art projects again. I also enjoy going out with friends to the symphony, plays, shopping, and other local events.  

 

You’d think with all this activity, I wouldn’t have time to feel sad—but I do.  

 

I love my classes. I cherish time with my friends. I thrive on the busy-ness, but it doesn’t quiet the longing in my heart—for someone to love, to share life with, to be a couple again.  

 

Yesterday, I started reading “One Woman’s Men: Fathers, Brother, Friends, and Lovers” by Sharon Goodwin. The description on Amazon captures it perfectly:  

 

"Each verse tells a story of love, loss, and longing—celebrating the nurturing bond with her father, the shared memories of her brother, and the fleeting yet profound connections with friends and lovers. With unflinching honesty and raw emotion, Sharon captures what it means to be a daughter, sister, friend, and lover, embracing both the beauty and the heartache of these relationships with striking clarity and innocence."  

As I read these poems, I’m struck by how much we, as “widows in waiting,” have in common with those who live with a chronic disease. For those of you following my blog and navigating the emotional complexities of being alone but not alone, I highly recommend this book. It won’t fix anything, but it reminded me that I’m not truly alone—I have sisters out there who understand.