How many of us think that at some point in time we are going to need care or be a caregiver?  I think it’s something we ignore, or try not to think about, like death, though I’ve always been prone to such anxiety, or as one friend says, “catastrophizing.” Still, I’d never thought about the challenges that come with having aides in your home for hours at a time.

But our lives changed on February 4, 2018, when at the end of the Super Bowl my husband Tony, with Parkinsonism, had an “event” that landed him in the hospital. At first I thought he was just excited by the game, but that wasn’t it. The doctors couldn’t figure it out and finally decided it was likely a mini-stroke (which leaves no visible mark in the brain). After lying flat on his back for a few days, he was sent to rehab to regain the ability to walk, which he lost while hospitalized. When discharged from the facility more than three weeks later, he still wasn’t back to normal and we needed a home health care aide so I could continue working at my job.

At first it was for four hours because he could be on his own until I got home. And I could occasionally leave for a couple of hours on the weekends, but couldn’t be away too long. But then came more “events.” As his neurological disease has progressed over 20 months, his needs (and thus mine) have continually increased. Now that he can’t walk, he needs someone to care for him 24 hours. We don’t have aides during all that time, so I have to make up the difference myself, which is an increasingly difficult and dangerous task. I daily worry that one, or both of us, will become seriously injured whenever I try to move him.  And then where would we be? I’m terrified of becoming disabled myself as a result.

So many difficult adjustments come with needing aides in your life. My parents needed help as they got older, but there was nothing available back then, except what the nearest family member could provide. We have resources they didn’t, thank God, but I can’t say it’s easy.

            First: It is hard for the person who needs care to accept what he can’t do--and it’s also hard for me, as I’m also always a “care-giver.” Sometimes I push him, telling him to do something that he simply can’t. Maybe I’m in denial, reluctant to accept a difficult reality.  “Move your feet!,” or “Stand up straight,” I urge. I want to shout, “just do it!”  I’m trying to make him move since and I don’t always like myself during these moments.  My fits of annoyance are followed by sadness and I feel like my heart is breaking. Tony has his own flashes of denial.  He will say while sitting in his wheelchair, “Well, I will make my own breakfast,” or “I can walk to the bathroom.”  I get so tired of trying to make him face a reality that he chooses to forget, as if in his mind he’s still his old self. What should I say? Sometimes, I just don’t know how to calm the situation, rather than escalate it. Whatever I do feels wrong.

            Second: Finding good aides is hard.  Most people use a licensed agency that vets them. Some are good, some not so much. Some leave after only one day; maybe they don’t like the job or find it too demanding, especially with all the heavy lifting. Some take initiative, others need prodding. Perhaps it’s because home health aides don’t get paid a lot, between what the agency and the government takes. In fact, I honestly don’t know how they survive financially. On one of our trips to the emergency room, one of the nursing assistants there told me, “find someone to work on the side and pay privately. They’ll make more and give better care.”  But the downside is you can’t deduct those expenses on your income taxes.

Third: It’s so expensive, especially as we need more and more hours of the day covered. And it’s clear our needs will only increase. How will we be able to afford it? On the other hand, compared to our poorly paid aides, we are quite comfortable.  Still, I can’t deduct our expenses since the IRS has stringent requirements and a high threshold for the percentage of your income that you must exceed.  So, quickly our money goes, month by month and I wonder how long we can go on this way.

            Fourth: The most difficult thing, however, is lack of privacy or solitude for my husband. He can’t even be alone for too long in the bathroom! I, on the other hand, can always leave for a few hours to work or a short break, whereas he’s confined. When he sits at the dining room table in his wheel chair (locked so he won’t slide back), he gets annoyed the moment he’s through. “I want to be freed,” he says.  Our apartment increasingly feels like a prison to him no matter how lovely the views of the Hudson river. Over the fifteen years we’ve lived here, I’ve tried to create an oasis out of our apartment, filling it with color, a crystal chandelier and hanging crystals in the window to catch and spread the light. But between being unable to go anywhere and never being alone, he feels trapped.

It is hard for anyone to get used to having another person in your living space who’s always with you but my husband has always been a very private person and an introvert. There have been many times in our long marriage where he’d say, half-joking, “I want to be alone,” to which he’d go into his room to read or watch TV. In the early days of our life with aides, when he could still use a walker, he hated when they followed him around.  Wouldn’t you know, the one time he insisted on going into the bedroom himself, he fell, suffered a serious head trauma, and ended up in the hospital. He never has regained his ability to walk, though he keeps up the (delusional) hope that if he works hard enough he’ll walk again.

            Month by month, as he loses his abilities, he loses his privacy. And we lose privacy as a couple. I love the few (and diminishing) hours when we’re finally alone, sitting quietly and reading (though those are getting rarer, as it’s harder for him to read), a taste of a life we’ve largely lost, one I realize now I didn’t truly appreciate at the time.

            So, how I balance his need for independence with the need for him to be safe? Yes, dignity is the thing, but how do you keep the person being cared for from feeling like a child and infantilized, when over time they may become more like the infant who can’t walk, toilet or feed themselves, or even in some cases, talk? It breaks my heart, daily, but it also makes me pray that I won’t ever have to go through this myself. Nothing about this life is simple.

I thought I’d take a break from politics because I’m sickened and depressed by it. But given the last couple of days—and how they remind me of something I grew up with—I can’t let it go without a few comments.

Recently, President Trump made a number of boastful comments. On Wednesday, August 21st, he proclaimed, “I am the chosen one,” speaking of his taking on China in a trade war that might be destroying our economy. Yes, he later said, the comment was meant as a joke. But was it? I wonder because on the same day that morning Trump quoted a tweet by Wayne Allyn Root (evangelical, conspiracy theorist and conservative writer) that “the Jewish people in Israel love him [Trump] like he’s the King of Israel. They love him like he is the second coming of God!” Note the lack of awareness that Jews believe that the Messiah has not yet come once, let alone twice. Jews don’t believe in the “second coming.” Note also, the conflation of Israel and America (two chosen nations?), which Root had in an earlier opinion piece contrasted, criticizing America (and American Jews) for not accepting their savior. Among Trump’s many boasts, he now was caught saying (threatening?) that he might stay another ten years after his second term—as if no human being could remove him, no election. As if he’s untouchable, omnipotent and beyond our comprehension.

We’ve long known that many evangelicals, especially those who think the end times and the return of Jesus is near, believe God chose Trump to be president at this particular time and that the election was God’s will. On August 22, I woke up to Gail Collins in the New York Times (“The President Goes Godly”) and Alexandra Petri in The Washington Post (“Oh, good, Donald Trump is God now”).  Excellent articles—clever, witty, but hangman’s humor. Readers’ comments also point out how dangerous this is for America. As one reader explains, this is the classic definition of Narcissistic Personality Disorder, but that this is our President, with access to the nuclear codes that could bring about the Armageddon that, supposedly, some extremist evangelicals would like to happen so Jesus can return. Only, if Root and Trump are right, he’s already here! (even if unacknowledged by those who aren’t his supporters).

Again, Trump says he was only joking when he called himself “the chosen one”, but with his most recent claims, I think we are moving into uncharted territory. Our president has gone beyond “I can do anything I want.”  This is beyond the “divine right of kings” ideology. Every week I think things can’t get more surreal, or more dangerous and yet they do. We have been pushed into the realm of a messianic world-view.

I don’t think many people know more than I do about individuals who claim to be the redeemer, the savior—words that appear in Isaiah chapter 49, where God says  “I the Lord am your Savior [moshiach, in Hebrew], your Redeemer.”  I grew up with a father who, you might say, also had a Messiah complex.  He wasn’t like Trump.  He was a religious and spiritual man. He didn’t have or aspire to political power and wasn’t elected to political position. My father thought of himself as a prophet, the voice of God, a prophet of the end-times. He was sure the final war was imminent, that there would be floods and famine and fires; that the seas would rise. Many times I worried—still do--that he was right. But my father also believed himself appointed to be the Redeemer and he had a small group of followers.

 I know how such a claim of authority, the promise of a better life, can appeal to people, especially people who feel they’ve been forgotten, even despised. But I know the problems, the dangers and harm it can cause from personal experience. And I recognize the characteristic of a person who thinks he is the Redeemer, the only person who can save a rotting world. Such a person insists on complete loyalty and absolute power. If my father thought you weren’t loyal, or disobeyed in any way, he could throw you out of your home, excommunicate you. He insisted on his absolute authority. His word was the law in my family; it went unquestioned, and if you questioned it you were punished. He was the judge, and even gave commandments (like executive orders?).

He didn’t start out this way, I’m sure, but he changed, and gradually he claimed to be more and more powerful. But eventually old age caught up with him, because (of course), no one really is God. If you live under someone who claims absolute power, it does damage that cannot always be repaired. I understand how love can get mixed into it. But I’m fearful when I see people surrounding Trump who never defy him—either through fear of their own, accepting his messages or through vicariously enjoying his life without perceived limits. They surrender their will and at times ignore what they know in their hearts and minds to be wrong.  Its a condition of unquestioning obedience.

My siblings and I eventually grew up and became our own persons (though we may carry invisible scars), capable of exercising our own judgment.

Somehow, we survived,  but will America?