On December 15, 2025, my children and I laid Bill to rest. We gathered for a simple military service at the Houston Veterans Memorial, where his urn now rests in the memorial wall. There was comfort in the simplicity, and gratitude for a moment of stillness after a long journey.
I was supposed to visit Bill yesterday, but the heavy rain kept me home. So, I went today instead. I’d been anxious to see his new wheelchair since the VA called to let me know it had arrived and that Bill was already using it.
This wheelchair is the Mercedes-Benz of wheelchairs! It has everything he needs including a comfy, padded seat, custom made to fit Bill's large frame, a padded headrest, and even shock absorbers of some kind for a smooth ride.
I was able to wheel Bill around again, something I haven’t been able to do for quite some time because of his feet. One foot had locked up behind him which made it extremely difficult for the anyone to push him around. The locked-up foot hung behind and under the chair, causing Bill a lot of pain when he had to be moved. But now, his poor feet, which were so twisted and uncomfortable, are now gently straightened out again thanks to the custom footrests on this new chair.
He seemed so much more at ease today—no repeated “help me, help me.” Maybe he was trying to tell us something all along, and we just didn’t realize how much he was hurting from sitting in that chair. He actually looked better than I've seen him in months. He even smiled once and spoke a few more words than usual. I don’t think he knew who I was, but that smile? It was golden.
He’s having more trouble eating now and needs help feeding himself. They’re pulverizing his pills and spooning them in with some kind of pudding. I brought him his favorite Coke, but he only drank two sips. That was unusual for him. He used to love a Coke.
After I wheeled him around the complex for a while, he asked to "go home." I took him back to the Memory Care unit where they served snacks and tried to involve the residents in activities. Bill ate some Fig Newtons but wasn't interested in participating in the activities. Finally, he drifted off to sleep, and I left.
All in all, it was a great visit. That new wheelchair is a game-changer, and I am SO THANKFUL to the VA for providing it. I can’t imagine how much it cost, but even the nurses said it was worth every penny to see Bill so much more comfortable.
After I left Bill, I was so happy I decided to treat myself to an adventure. I went to lunch at the Hobbit Café in Houston – what fun! A friendly customer who eats there all the time gave me the "low down" and took my picture! For lunch, I had Rohan Chicken Enchiladas. I didn’t realize it when eating it, but it had some heat. So, I had to get the Carrot Cake for dessert to cool off my tummy! (I ended up taking it home – too much food!) If you've never been to the Hobbit Care, you need to go. It's a fun adventure and very popular. By time I left, the parking lot was full.
After that, I went to Trader Joes. I wanted to eat first so I wouldn't buy everything in the store! I love that place. They have so many unusual goodies. Today, I bought Indian Style Flatbread, Fiberful Granola Bars, Soft and Juicy Mango slices, a huge box of strawberries, and some beautiful Shitaki mushrooms. I also got Shelly some of their delicious corn and chili salsa.
After I got home and unloaded my groceries, I grabbed up Oreo, and we delivered the salsa to Shelly. We had a nice visit – all five of us (Shelly, me, Oreo, and her two cats: Samwise Winchester Downes and Lady Galadriel Skywalker Downes). Shelly always has had elaborate names for her cats but ends up calling them many other names over their lifetime! Currently, they get called Sammy and Moppet.
A very nice day. . . I think I'll sleep peaceful tonight.
Last week, Bill's care team and I agreed he needed a new wheelchair. Since he's a vet, the VA will provide one, but there were hoops to jump through. To qualify, Bill had to be seen by a Primary Care physician at the Michael DeBakey VA Hospital in Houston. Because I can no longer transport him myself, his caregivers at Richard Anderson Veterans Home (RA) arranged the transportation.
Thankfully, since Bill had been seen at the Galveston VA within the past three years, we didn't have to go through the process of getting him admitted. However, we had to transfer him to the Houston facility so that I could use RA transportation. The process involved contacted VA to make the transfer. It took three phone calls and two days, but I got it done and asked for an appointment. When they said I could have an appoint "next week," I was flabbergasted and took it, not thinking about the fact it was 1:30 in the afternoon.
I knew it would be a challenging day, so I asked my daughter, Shelly, to come with me. Despite a crushing schedule - writing three graduate papers, teaching five classes, supervising adjuncts, and conducting meetings, she said yes.
At first, things went surprisingly well. Bill was calm, more at ease than I'd seen him in weeks. He enjoyed the ride and being outside. Though he didn't quite recognize Shelly, there were flickers of moments when he seemed to realize she was his daughter. He forgot my name but knew I was his wife. For much of the day, I think he thought Shelly and I were part of the RA team.
The RA transport dropped us off at DeBakey and we located the Primary Care office without any problems. That appointment lasted an hour and a half. It was now 3:00 p.m.
Next, the doctor sent us on a VA scavenger hunt:
By 4:00 p.m., Bill was getting restless and agitated. I called RA for a ride back and we waited outside.
While we waited, Bill slipped into full Sundowning mode – agitated, confused, and frightened. He tried to undress, yelled for help, and attempted to get out of his wheelchair. Shelly and I tried to distract him and calm him down, but nothing worked. We waited 40 extremely long minutes.
Once on the van, things escalated. Bill became even more frightened and violent, his eyes wild with panic. He was lost in a terrifying world – yelling about saving the kids and keeping them off the street. His car had been stolen, and the parts were hidden in the trees somewhere. Crazy drivers were going to hit us. His days as a police officer came flooding back in a nightmare-like haze. He was convinced that we were all in danger and he couldn’t protect us.
We worried he might lash out at the other veteran on the van, also in a wheelchair and locked in. Then, Shelly realized he was trying to pray; so, she went into "preacher" mode and began guiding him in prayer. For the next 30 minutes, she had him praising Jesus and asking for his protection. Her calm voice cut through his fear, and slowly, his violent edge softened. It was still touch and go the whole trip, but her steady presence made all the difference.
I called ahead to RA so someone could meet us at the door. I knew it was going to be difficult getting him off the van. Sure enough, he locked his arms to avoid being put on the lift and began screaming, "You're going to drop the children. Stop, stop! Don’t drop the children."
Four of us managed to coax him down the lift and out of the van. The RA nurse, Valerie, stepped in to take charge. She's so good with him. I've seen her magic before. We left Bill in her capable hands and drove home - shaken and exhausted.
Never schedule late appointments again! I should have remembered Bill's worst times are in the afternoon when Sundowning takes hold. Being in unfamiliar surroundings and exhaustion sets his brain on fire.
To him, the danger was real. His world is a mixture of his past, the unknowns of the present, and the demons of the Alzheimer's disease itself. He felt helpless because he couldn't protect himself or get us to understand the danger. I cannot imagine the terror going through in his mind.
We'll have to return once more to have him evaluated and measured for the wheelchair. I will insist on the earliest appointment possible! If it weren't critical that he have a better wheelchair, I wouldn't take him back at all. But he does; and, unfortunately, they won't come to him.
I don't know how I would've managed without her. She not only helped calm Bill, but she also made sure I heard what the doctor was saying (my ears are stuffed up from my recent illness) and took notes on what we had to do next. She's my hero!
It was a long hard day, but having my daughter there was a huge comfort and a lifeline. It makes me realize how blessed I am. Many caregivers have no one to help them and no VA to help pay for the care. I pray that our legislators will someday soon find a way to help these folks. In the meantime, if you know someone going through this, reach out and give them a big hug today. Sometimes, just knowing people care can get you through the day.
NOTE:
Please do NOT use this experience as a reason to comment here and tell me how wonderful god is for helping us get through this day. I'm not interested in a god who allows someone like Bill, who actually believes in and love god, to go through such a horrible disease. Prayer was only a technique to help Bill get through his horrible day. Please keep your religion to yourself, and thank you for respecting my wishes.
Ref: What is Sundowning?
Today, my visit to Bill included watching him get his PT. They are trying to keep him mobile and make him more comfortable at the same time. He's leaning to the left and hunching which is hurting his back, hips and legs. First, they made him do some arm work. He is, and has always been, good at arm work.
Then, on to the legs, which are his biggest challenge. The therapist did some stretching of his legs first. I was very impressed with her technique and kindness. He continues to yell, "Help me, help me, oh please help me." throughout the day, including during PT. When they ask him questions, he answers appropriately; then goes back to his "recording."
It was decided that they need to place some cushions under his butt and next to his left side to position him better in his chair. That was a feat! It took three ladies almost 20 minutes to get it done, but they did. They calmly talked him through each step as he repeated, "help me, help me" over and over again. Again, I was impressed with their ability to handle him. They were firm, but kind as they "encouraged" him to do what needed to be done.
By the time we got back to the memory care unit, he was exhausted. He immediately fell asleep in his chair. I waited awhile, hoping he'd wake up; but no, he's was out for the count. I finally left, grateful that he was comfortable, at least for the moment.
All in all, it was a good visit. I was able to observe how the PT staff work—not just with Bill, but with other patients too. Their professionalism and kindness stood out.
We also discussed trying to get the VA to provide him with a custom wheel chair. That’s my next goal. Navigating the VA system isn’t easy, but I’m determined to try again.
Interestingly, this is a VA Memory Care facility (Richard A Anderson Texas State Veteran's Home), but it's been privatized. And, the company that runs it and the VA don't communicate! So, I’ll need to make Bill an appointment at the Michael DeBakey VA hospital, where VA doctors can evaluate what kind of wheelchair he qualifies for. The RA Anderson Home will provide the transportation; I just need to meet him there.
So, here's to keeping my fingers crossed that it won't take an act of congress to get what we need!
The road to placing my husband, Bill, in a memory care was longer than most because he lost his central vision so early in the process. At that point, I had no idea he was facing a lifelong downward spiral into dementia. All I knew was that he was losing his independence. He could no longer drive, it was increasingly difficult for him to do the things he wanted to do.
His loss of vision did not come on gradually; instead he lost the central vision in one eye overnight one year; and then, about a year later, lost the central vision in the other. We went to many doctors from local doctors in Tulsa, to Dean McGee in Oklahoma City, to Johns Hopkins in Baltimore, to VA vision specialists in Arizona, and here at UTMB in Galveston, Texas. No one was able to diagnose what was going on, and this was about nine years before we suspected Alzheimer's.
My main concern was giving him the independence he needed. I was still teaching at a local private school, so he was home alone without transportation. It was at that point that I decided to sell our home and move into independent living. I knew we could afford to do it using the money from our home and the pension he received from his job.
We moved into a lovely cottage in the suburbs of Tulsa that was connected to the "Big House" where we took our meals. They provided Bill with transportation and social activities, while I continued to work. This worked for about three years. By then, I was beginning to realize that we could not afford to stay there. Our money was dwindling fast and the cost of independent living was increasing at a much faster rate than I had considered. I was also beginning to think there was more to Bill's problems than his vision, but still had no clue what it was. (2014-2017)
At that point, I decided to resign my teaching job, move into a two-bedroom apartment in town, and take care of him myself. I did some private tutoring for a couple of years while we were there to add income. It was during our stay here that my kids and I began to suspect that he might have some kind of dementia. The VA had diagnosed him with Mild Cognitive Impairment in 2019, but we suspected it was more than that. I still remember the doctor saying to me, "He's a bit quirky, isn't he?" As my life as a caregiver became more and more stressful, our kids began to tell me that I needed to move to Galveston where my daughter lives so she could help. In the meantime, COVID had reared its ugly head. But, in fear and trepidation, I packed up our things and moved to Galveston where we lived in apartment near my daughter. (2017-2020)
By this time, it was obvious to all three of us (me, my son, Wil, and daughter) that something was severely wrong with Bill. Shelly encouraged us to go to UTMB (University of Texas Medical Branch) to let them check dad out. This was the beginning of our "good" luck. Because UTMB is a research hospital, students often help with the patients. We had a delightful young lady interview us. I no longer remember her name, but I will be grateful forever for the time she took asking about Bill's symptoms. Because of her, the doctor recommended we take him to a geriatrician and a neurologist in town. The family care doctor suspected dementia, but wanted further testing.
Our next step while waiting for these medical appointments was to get our POA's and wills updated. Shelly helped me find a lawyer and went with us to get the appropriate paperwork. The lawyer, however, would not let Bill sign unless our family doctor said he was cognitively capable. We then got a statement from the doctor that said, yes, he was ok to sign the papers. I was so relieved; because, if he had been diagnosed with dementia before we went to the lawyer, we would have had to go to court to declare him incompetent before the paperwork was signed. We breathed a sigh of relief and continued on.
A few months later, Bill was diagnosed with Alzheimer's and vascular dementia. Now, at least, we knew what we were dealing with. But, how would I be able to afford Bill's care was the next question? I couldn't, so I continued to keep him at home with me 24/7. Shelly was busy with her job, but helped whenever she could. Sometimes, it was helping me to pick him up after he had fallen. Sometimes it was bringing us food. Sometimes, it was listening to me cry. We were both exhausted.
Shelly recommended we look into Libby's, an adult daycare in town. Bill was a Vietnam War veteran; so, with a bit of paperwork, I was able to get Bill into Libby's two days a week from 9am-3pm. I finally had a bit of time for myself. I was now able to go to therapy for grief counseling and take a class at the local senior center, which was beginning to open up from the COVID shutdown.
Over the next one and a half years, I was able to add another day of day care, using the VA. It was working out beautifully. I had some respite and Bill was safe, able to participate in activities and fellowship. Then his disease progressed to the point that day care was no longer an option. I brought him home and began the 24/7 care again, but hired some in-home health care workers. This would have been a wonderful solution for many more years had I been able to afford it. At $35/hour, the cost of in-home care began to deplete my savings at a faster pace. I could only use them a few hours a week, which put all the caregiving stress back on myself. And now, Bill needed more care than ever.
After learning that the VA pays for long term care if the veteran has a 70-100% service-connected disability, I turned to the VA again. Bill had applied for service-connected disability benefits several times over the years since losing his vision, but had always been denied. In May 2022, I decided to try it again, this time doing it myself. At first, I used a local VA representative. However, it was denied with a letter stating that I would need to provide scientific studies that linked Alzheimers and agent orange for it even to be considered. At that point, the VA rep threw up his hands and stopped working on it.
We didn't give up. Shelly got involved; and, through resources she had available to her at college, she located three scientific articles that linked Alzheimers to agent orange. I reapplied for Bill's benefits in November, this time on my own through the VA website. I wrote a letter citing page numbers and paragraphs from the three articles, included a statement from the VA that the Agent Orange Act "represents a commitment by Congress and the U.S. public to move forward with providing Vietnam Veterans appropriate compensation for possible herbicide-related health effects," and attached the research documents to the letter. I uploaded it to the VA website and forgot about it. I had no real hope that it would be approved.
In the meantime, I went to an Elder Care lawyer and discussed my options for Medicaid. That was eye opening! Because I was a stay-at-home mom most of my life, I receive less than $500/month from Social Security. We have always lived comfortably on Bill's income, but it could not support both him in a care home and me in another home. I discovered through the attorney that Medicaid in Texas would allow me to keep a small portion of his money to prevent spousal impoverishment. It was barely enough to live on, but I decided that is what I would do. I could not continue to care for Bill.
In the process of applying for Medicaid, I made plans to move to a small, one-bedroom on the west end of the island, where the rent is cheaper. I got rid of cable tv and other nonessential expenses. My bill at the nursing home was more than $6,000/month, so my savings account was shrinking faster than ever. I asked the lawyer if I could get a job to help me with the bills, only to discover that if I went to work, Medicaid would take every dollar I made. It would became a vicious cycle that I could not escape. This life event gave me a much better understanding of why people stay on welfare!
In late December, 2022, Bill had been in the nursing home for almost a month. I was packing up to move to my new apartment, getting rid of anything that wouldn't fit, and visiting Bill, who was not doing well. He was in a tiny, rehab room with a roommate who was vulgar and couldn't hear, so the TV blared all day long. It was so loud, we couldn't talk. Medical service was minimal, and Bill was frequently escaping from the facility. They put an ankle tracker on him which made him believe he was in prison. There was no locked unit for Alzheimer's patients. I was beginning to think I had made a mistake and was trying to figure out how to bring him back home when, one day, I opened my bank account on my computer and discovered a deposit from the VA. Bill had been approved for 100% disability based on Agent Orange exposure!
Finally, at the end of January, 2023, I was able to move Bill to a beautiful, almost-new, Veteran's Home near Houston. He now has wonderful medical care. His room is spacious and private, and the place is so clean you could almost eat off the floor! Better yet, it's locked and he cannot escape. He's now safe and I do not have to worry about him.
I had already begun the move to the smaller one bedroom apartment, so there was no going back. But it's all ok. I now have less bills and more income, which allows me to begin building up my savings once more. After all, one day, it will be me looking for long term care!
Final thoughts: We were one of the lucky ones. So many vets, who gave up so much to fight in that damn war, still do not receive the benefits they deserve. If you know a veteran who is struggling with dementia or any other illness, help them to fight the system. Don't let them give up. Do not depend on a VA representative to help you. They are ok for the standard situations, but they only go so far if your case is a bit unusual. It's not the agent's fault, the VA is a complicated system. But for a veteran, the VA can mean the difference between having no care, bad care, or good care. Do your own research and don't give up!
