Tough Love for Broken People

by

A.J. Daulerio

When there’s nothing left to do.

“I believe that if I can change the ratio and put more good back into the world, I will be able to live a life free from the paranoia that a spiritual repo man is hunting me down.”

*****

My 80-year-old father is finally on a waiting list for a memory care facility in Jupiter, Fla., now that my mother, in her late 70s, can no longer serve as his primary caregiver. Since they visited us last June, he's escaped from their apartment complex on a couple of occasions, plus his hygiene has deteriorated along with what I assume is his overall quality of life. "It's time, Mom," I've told her many times over

the past two years. And she'd agree, but she'd put the conversation on hold until the next bad thing happened. 

The problem is I don't know how many bad things have happened. My older sister and I get all the updates about his "good days," and the bad news is buried for weeks and months, sometimes forever. And if there is bad news, my mother does her best to downplay it as much as possible. 

She only recently told me she needed to call the police while she hid inside her locked bathroom because my father was about to attack her.

"He said he wanted to kill me."

She relayed this story with an unsettling amount of ho-hum indifference. 

I asked her why she didn't tell us immediately so we could get her the help they both needed, and she got testy. "It happened six months ago, and it only happened once," she said.  

My mother believes withholding this type of information about my father from his kids – both of us middle-aged, no less – is a sign of her resiliency and a testament to her love and respect for my father. She wants to pretend he isn't as sick as he is because she doesn't want to admit she can no longer care for him. 

He did the same thing when she had her recent bouts with ovarian cancer, constantly evading hard truths, tough roads, or harsh realities. And when I'd update him on the hard things happening in my life, he'd always be first to let me know that what I'd told him wasn't something she needed to hear. "I'm not going to share this with your mother." 

My parents thought their job was to keep things hidden from the general public, their entire family, and, often, each other. 

Why hurt someone if you don't have to? Why face something hard when it's just as easy to pretend everything's okay?

Sometimes he wouldn't tell her if the chemo wasn't working the way it should. He didn't want to upset her.

*****

My father's dementia began to reveal itself around 2016. I began to notice how he'd repeat stories or conversations, sometimes within the same phone call. 

He'd become increasingly disoriented and frustrated by the state of what was wrong with him. There was constant confusion with his day-to-day scheduling, most of it revolving around my mother's chemotherapy treatment. At one point, her oncologist assigned a social worker to monitor my mother's situation. My parents were having trouble making appointments, and my father was becoming more belligerent and defensive about the oncologist's concerns.  

When I talked to the social worker, she recommended that my sister or I move down there to be close to them. "She has a very serious form of cancer, and he can't care for her anymore," she said. 

Soon after that, my father had another fender-bender in a parking lot, and I asked him again to turn his car in forever. "There's no reason for you to drive anywhere." 

That, combined with the forgetfulness and the agitation, all suggested cognitive decline, but he didn't take it seriously. "Senior moments," he'd say with the certainty of a man watching a giant tsunami outside his window and declaring it only a few raindrops. Besides: He couldn't give up driving because how else would they get to and from all the doctors?

My sister, mother, and I knew what was coming. What's more puzzling is my father did, too. He watched the catastrophic effects of Alzheimer's when his own dad had it. Still, my father assured me he was fine. "Stop asking me about it." 

I finally received a call from my mother's oncologist – I never did catch her name – and she sounded incensed and accusatory, like I was the crappy son letting his mother and father rot. "I think it's time to consider hospice. We can't help her if they can't help themselves."

When I passed along the bad news to my parents, they insisted that I was overreacting and that the oncologist was crazy. My mother got on the phone and said she spoke with her primary care physician. "He told me I have another ten years to live!" 

If that was the case, my sister and I proposed they move back home to the South Jersey-Philly area to be closer to family. They both agreed that it was a great idea. We both offered to help find an assisted living facility at a location so they could be within 30 minutes of practically every living blood relative. Also, they would have round-the-clock medical care should they need it. 

Instead, my father decided he wanted to stay in Florida, but he promised he wouldn't drive anymore. He found an assisted living facility just a few minutes away from their condo, and they had a wonderful view of the Intercoastal outside their bedroom window. They would receive the finest care, food, and social activities in West Palm Beach!

He was vague on the type of medical care my mother would have access to, but he said he'd tell us more later. 

I called their facility to introduce myself and ask about the medical assistance offered. The woman over the phone interrupted to correct me because I kept calling it an assisted living facility. "Your parents are in our independent living facility. They're on the fun side!" 

I almost threw my phone out the window.

******

About a month ago, my father was hospitalized for an upper respiratory infection and arrived at the hospital almost 20 pounds under his normal weight. My mother has an aide come a couple of times per week to "help," but she's not a nurse, nor does she specialize in patients with dementia. 

I asked my mother if she thought it was time to move so she could get more help. She agreed, and I asked if she wanted to be in Jersey, closer to her family, and she said yes. But after a quick visit to 10 facilities in Jersey a couple of weeks ago, she changed her mind, and decided that she wanted to stay put in Jupiter. She quickly found a memory care unit two minutes away.

"But don't you want to be closer to family? Not everyone can fly back and forth to Florida all the time." 

"Tough," my mom said. "It's my life, too." 

The waiting list could be a few months, or it could be a year. "Could be sooner if someone moves out." I rolled my eyes.

In the meantime, she would downsize their apartment until a spot opened up, offsetting the memory care cost. I reminded her that it could be a while, and she still needed help to deal with his dementia right away, especially if they were going to be in a smaller apartment together. She told me that was a good point, and she would write that down. 

"You need to write that part down?" 

"Well, I don't want to forget it." Her voice was curt and defensive.

*****

"I'm worried." This past month, I've said this to my wife many more times than I typically do. "I'm worried that they're both going to get hurt." 

I try not to say the "W" word because I know how useless it is. "Why suffer twice?" I tell myself this on days when my spiritual fitness is on point. And then I don't worry anymore.

But I also remember the imperious sound in my father’s voice as he’d tell me how worried he was about my grades in school, the length of my hair, my career choices, or my girlfriends.

“I worry because I care about what’s best for you,” he said.

And then, eventually, he was worried about my drug use.  

I dug into my old Yahoo Mail archive to see if any "worried" emails remained, and there were two from about 15 years ago. The first one is this: 

"A.J., Worried again based on the comments on you and meth. What would you think if you read this about your son? I would like an honest answer. You can email me. Love, your Dad."

I had no son at the time or even the notion of having one in the future, so I found his inquiries stupid. Now that I have two sons and a daughter, I know what I'd think – my children need help, and I will be there for them. But that's what I tell myself now when they're too young to permanently screw up their lives. I know I’ll probably think differently should the time come. But right now – love first.

Another "Worried" email was an apology he wrote me after I'd opened up to him about my cocaine use and asked for their support as I sought outpatient treatment. It went terribly, and he said the most hateful things imaginable to me during one of my most vulnerable moments.

A.J., There is no excuse for my tirade on Sunday. I can tell you that I exploded from frustration and anger on the drug issue, but that is not good enough. I told you I could handle it, and I couldn't and didn't. I hurt you and your mother and, yes me. Your mother will send a separate email. You and I HAVE NOT FIGURED OUT HOW TO DISAGREE. That is my challenge, to be honest, and constructive rather than demeaning. I am a work in progress. I need to have you in my life and hope we can find a way. In the short term, please update me on how your counseling is doing. Love, your Dad." 

I find it so disorienting that he signed these emails "Love, your Dad." When I think about how much he hurt me, I forget that he was doing the best he could, but the ways he showed me love were both self-serving and sometimes horrific. He did not have the tools, is what I hear in the Al-Anon rooms. But I will have the tools and be able to handle hard things differently – I promise I will love differently. I finally forgave him last year. Big, big love.

*****

When I told my Al-Anon sponsor about how badly I'm handling this memory care business, he recommended, of course, that I "lead with love" when I talk to her from now on, meaning that I have to remember how vulnerable she is in this situation – how scared she is.

"Remember how you would want her to react to you."

I thought about it. I will try harder.

"Lead with love!" he reiterated.  

Then he offered up his usual prayer: 

Let your thoughts be my thoughts…

Let your words be my words…

Let your actions be my actions…

But a few days after another frustrating conversation, I made a drastic, desperate decision and called the Florida Department of Elder Affairs to check on my parents. A social worker visited them that day, and I anxiously waited for my mom's distraught response. I rehearsed the love-leading explanation I'd offer her and would insist that I was only there to help her figure out what’s best for both of them.

Hours went by, and I heard nothing from her. She finally texted me around dinnertime.

"6/6 again," followed by a frazzled-looking emoji.

It was her Wordle score.

******

A couple of days later, I was on a Facetime call with my mother, yelling at her about how awful and dangerous this situation was.

How selfish she is! How cruel she is!

She began to turn her gaze away from mine, stunned into silence by my verbal assault.

I wasn't finished.

"Did you get a visit from a social worker this week?" My mother gasped.

"Did you do that? They came to see if I was abusing your father." 

“Well, that's an important piece of information to share. When are you going to stop hiding shit from us?"

It was my father's rage, my father's voice channeling through me. It was the same deranged, disgusted tone he used during my most vulnerable moments. It’s in my blood. A family curse, I thought.

*****

Julieanne was working late that night, so I had to do dinner-bath-bedtime by myself, and the kids were acting completely nuts.

At one point, my son stood naked in the dining room, and was about to piss on the floor, while the other two also screamed and sobbed and demanded my attention. I began to yell at my son with that exasperated, distressed tone, which sounded exactly like my father's, exactly like I did earlier that day on Facetime with my mother. I finally marched him into the bathroom and returned to the kitchen. Then I pulled my phone out to check the baseball scores to calm down. Then I almost fainted: I had pocket-dialed my high school friend and had left him what appeared to be a 1:41-second voice message of me lashing out at my son.

I quickly sent him a toneless ha-ha apology text to get a beat on whether his opinion of me had changed. He seemed fine.

But what if the next-door neighbor or our babysitter had heard that voice? Would they hear love? 

I wanted to drive to some faraway place for a few days, scream it out under the stars. This was so hard.

*****

My sister and I are headed to Florida on Friday to visit my parents and get a tour of the memory care facility. We'll be in town for about 40 hours. 

"Just enough time for you to gang up on me," my mom said after I told her about our impending visit. I assured her that wouldn't be the case. 

"I want to sit with my Dad. He's not going to remember us for very much longer." 

”Well, you'll get to see me, too. Don't you want to see me? I'm looking forward to seeing you." 

"Yes, I want to see you," I said. 

The kids needed to get into the bath. I had to go.

"I love you, A.J.," she said, sing-songy and with a whisper of shame.

"I love you, too." 

We're all doing the best we can. 

All illustrations

by Edith Zimmerman