Part 3: Dementia merry-go-round—when time becomes a loop

My dad is living in Desert Springs Hospital in Las Vegas to avoid homelessness—again. He can’t afford to live anywhere else and get the kind of care he needs.

You’ve read this before. I’ve said it before. He’s been here before. We’re doing this again.

I told you he’d try to escape

In December 2021, we found a group home that my dad could afford. For a time, he liked it.

And then he didn’t.

As I drove to Las Vegas earlier this week, I received a call that he escaped. He just walked out the front door. The weekend caretakers didn’t notice until we called them and didn’t even think to call the police about a 72-year-old man wandering the streets of Las Vegas in more than 100-degree heat.

So we called the police, and they found him hours later, two miles down the road. He was hanging out at a 7-Eleven, waiting for someone to get him, with an un-opened doorbell attached to his cane.

We still don’t know where the doorbell came from.

He warned us for weeks that he wanted to leave. He started complaining about everything; it was difficult to tell what was real and what was imagined. Dementia blurs the lines between truth and reality. The loss of moment-to-moment memory makes simple conversations confusing—conspiracies and extrapolation fill in the blanks. Caretakers taking off weekends turns into them “disappearing to North Carolina” with all his money.

Now the home is under investigation and we’re back to square one. He’s homeless, living in the hospital, again.

Disabled enough to survive?

My dad can barely afford to pay for the most basic facilities—even the ones that lose track of their wards with dementia.

He receives just enough money each month from social security and veterans benefits to cover the cost of the group home he easily escaped. But, it’s not nearly enough to cover the cost of better facilities in Las Vegas.

We’ve found that the average memory care facility in the area charges $3,600 per month or more—often much more. Many require community fees of $2,500 per year, which his monthly income wouldn’t come close to covering. His doctors have recommended skilled nursing, which would cost close to $6,000 per month. That’s $36,000 per year—almost $4,000 more than the individual Nevadan median income—to pay for an adequate, safe, doctor-recommended facility.

I guess only the middle class can afford to get dementia.

The U.S. Department of Veterans Affairs office still hasn’t decided if my dad is disabled enough to receive the money he desperately needs to cover the cost of more secure facilities with more appropriate care. We applied for an increase in compensation benefits in February and were told it would take three to six months to evaluate his case and make a decision.

It’s month six, and his income has not changed. We don’t know if it will, when it will or how much it might be.

Dozens of doctors and social workers have evaluated him so far to assess if his type 2 diabetes, heart disease, and dementia have disabled him enough to justify an increase in income. More evaluations are scheduled for the coming weeks. There’s no end in sight.

We also applied for V.A. Aid and Attendance benefits in December (another three to six month decision). This one is a program meant to provide additional monthly payments specifically for housing for qualified veterans. What makes someone qualified? They must either:

  • Need another person to help them perform daily activities, like bathing, eating, and dressing
  • Spend a large portion of the day in bed because of illness
  • Be a patient in a nursing home due to the loss of mental or physical abilities related to a disability
  • Have limited eyesight

(For those of you keeping track at home, he scores 1.5 out of 4. It would be 2 out of 4, but the group home doesn’t think he’s a “good fit” to return. That’s a fun way of saying liability.)

We still don’t have any answers or decision on the Aid and Attendance benefits either.

Does it take an act of congress to help a veteran?

Every other agency meant to help us is either redundant or creates more barriers. I’ve been told to become a legal guardian just to get help. (Because that’s super easy and definitely doesn’t involve paying $3,500 upfront and $400/hr to an attorney to navigate the months-long process to have your dementia-ridden parent deemed incompetent by the state). In other cases, nonprofit organizations have asked for $700 to help us “get ahead of the line.”

So, we went to congress to expedite the process of getting him the compensation he earned by being exposed to toxic substances while fighting for his country.

This week, I submitted a letter asking the office of Sen. Catherine Cortez Masto (D-N.V.) to help us find out why the V.A. is stalled. There is a wonderful person whose job is to speed up the bureaucracy of it all.

It is not lost on me that we have sent the more nimble and responsive staff of an elected government official to chase a larger, immovable, byzantine, government apparatus. It’s like swallowing a spider to catch a fly—or perhaps it’s like swallowing a mouse to eat an elephant.

A Q-shaped loop of lonely ‘jailment’

In March, his wife, who still lived in Kentucky, died of long-term COVID-19. Her lungs hardened. She couldn’t speak. She couldn’t breathe. She died in her home, staring at a photo of my father, longing for him.

The depth of despair is unfathomable.

Now, he’s alone in a hospital bed watching TV. He called me in a panic because he had been sitting in a chair for 90 minutes and I’m not sure why because his phone died.

“They have me in jailment, do you know that means?”

It may be a blessing that linear time no longer exists for him. Maybe. Forever and 90 minutes are as distant as galaxies or as close as your nose.

Still, every step forward is a win: Gaining access to an account, signing a letter, finding a previously hidden document, getting a call back from a senator’s office, or finding a potential new home.

Infinite optimism is required. We will tour new group homes. We will pursue the bureaucracy. We will install the doorbell—wherever it goes. We will move him into the next, hopefully better, group home. Then when the government finally makes a decision, we will go to the next best place after that.

Until then, maybe, just maybe, he could put off escaping for a bit longer.