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!
