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“Mea Culpa”—An Alzheimer’s Admission

It started with a small sin. In the Irish Catholic tradition, we used to call them “venial” sins, a relatively slight transgression that doesn’t occasion damnation of the soul, but it progressed swiftly to a mortal sin, a time-out with the Almighty.
 

Source: O’Brien family photo

Mea culpa, mea culpa, mea maxima culpa—ancient Latin words from the Confiteor, the “I confess” at the beginning of the Mass of the Roman Rite. As an innocent altar boy 45 years ago serving Mass at the Church of the Resurrection in Rye, New York, not far from the Manhattan skyline, I spoke these words with utter reverence as I beat my chest three times in ritual, my right hand in a tightly clenched fist.

Whatever one’s perspective, we’ve all engaged, at times, in the “I confess,” regardless of liturgical belief, legend, or points of view.

In the past year, I’ve been under a house arrest of sorts; eyes watching me in every direction, an iPhone “Find Me” application that discloses my every move, the medical equivalent to an ankle bracelet to avoid a Where’s Waldo’s quandary.

I was diagnosed nine years ago with Early-Onset Alzheimer’s after an onset of symptoms, two traumatic head injuries, brain scans and clinical tests. Alzheimer’s took my maternal grandfather, my mother, my paternal uncle, and before my father’s death, he, too, was diagnosed with dementia. I also carry the Alzheimer’s marker gene, APOE-4.

Alzheimer’s is not just memory loss; it is the intense rage at times, hallucinations, numbness of the mind, loss of filter, loss of self, and the pathetic loss of judgment.

A recent case in point: my wife of 41 years, Mary Catherine, the “warden” as I lovingly call her, and a dedicated, special-needs assistant at Nauset Regional School District on Cape Cod, left for a well-deserved school break to see her incredible family in Phoenix. My younger son Conor was left behind to guide the family tiller. But on Cape Cod there are dangerous storm currents, rip tides and sharks—not only on the beach but inside the mind of Alzheimer’s.

The sharks were trashing as Mary Catherine’s Boeing 737 lifted off the tarmac at Boston’s Logan Airport, and banked a left for Phoenix. The start of the week was uneventful, other than the continued breakdown of the body; the brain also is a control panel for function, and at 68 my body continues its decline. I was down a few quarts with immune system deficiencies and relegated to the confines of the couch. How much news can one watch these days without poking forks in your eyes?

I had a speech that Wednesday outside Boston; son Conor, my sergeant in arms, drove me. Repairs to the Sagamore Bridge that connects Cape Cod to the mainland added two stressful hours to a two-hour trip. We didn’t get home until late. The following day I was to speak again in Wellesley, which is just outside of Boston, before a Sisters of Charity event that attracted a broad audience. I had spoken there before and, having been taught by the nuns in grammar school, wanted to be on time and in good order. I’ve always loved nuns; they’re pretty cool and caring. But first I had to head to Nantucket for meetings. Like others in this disease, I still have to make a living or face bankruptcy. Having traveled years ago around the country as a writer and communications consultant, I now focus work on Cape Cod, Nantucket and Martha’s Vineyard. That way I don’t have to drive. I’ve told my medical team that I’d put the brakes on driving, though still have a license, yet I hadn’t driven in close to a year.

I felt terrible about the stress on Conor, and so the next morning without telling him, I made a command decision, outside the watchful eyes of the warden to drive a half hour to Hyannis to take the ferry to Nantucket. I called Conor and told him to meet me at the boat when I returned, and he could drive to Boston. A good plan, I thought. Well, not so good.

Arriving back on the Hyannis dock, I learned there was a two to three-hour backup at the bridge. No way was I going to make the speech, high stressed. So I made a decision, and a bad one at the moment, to drive to Wellesley by myself. I called Conor from the car and he appropriately reamed me for this decision. Maneuvering through bridge traffic was a labyrinth, a maze of chaos. I prayed half the time; took the Lord’s name in vain the other half.

Using a hands-free phone, I called the nuns to tell them I’d be about a half hour to 40 minutes late, using the collective “we.” They kept calling periodically to ensure I was on schedule. The audience was assembling, and one of the nuns began reading from my book, On Pluto: Inside the Mind of Alzheimer’s, to appease the crowd—a mix of nuns, caregivers, those with Alzheimer’s, and other interested parties.

As I got close, I realized I didn’t have the exit number off the highway. So I called again.

“Sister,” I asked, “What’s the exit number?”

She didn’t know the precise number, then said: “Are you ok? I gave the exit number to Conor. Just ask him.”

There was a pause at my end.

“Conor…is not in the car,” I said.

There was a pause at her end, as she cupped the phone, and turned to the nun standing next to her.

“Oh shit! He’s alone!” she whispered.

I explained the situation, said I was okay, but required the re-entry code. “I need you to be one of those guys at the airport, with the large flash-light devices that guide planes to the gates,” I said.

The sisters agreed, stayed on the phone for more than 15 minutes, and brought me safely into a landing. They positioned associates at the entrance to the facility, waving at me, so I didn’t miss the turn. I felt like Christ entering Jerusalem on Palm Sunday.

I had my speech in hand and read it carefully, event getting a standing ovation at the conclusion. After the book signing I was ready to go but feared the ride home. I could have stopped overnight at any number of friends’ homes along the way, but worried they might rat me out to the warden. Again, the judgment thing.

“Not so fast,” said one of the nuns, calling upon the audience to pray for me, with hands outstretched in almost a Billy Graham moment.

Amen, God ordained, I thought, my ticket to safe passage home.

After the prayer, two friendly but imposing nuns about the size and stature of pro linebackers approached me. “Gregory,” they said. “Not so fast. We need to have a come to Jesus talk: YOU’RE NOT DRIVING!”

Upon learning of my bad judgment, the nuns had conferenced with what seemed like the urgency of a Vatican Council. I was told that one of the nuns would drive my car back to the Cape, with me strapped in the passenger seat, and another nun would follow, God bless them. “We want to do this,” they said. “And besides, if something happened to you on the way, the world would say our prayers don’t work.”

The verdict had was delivered.

“Oh, and one more thing,” they said. “We called your house and left a voice message for your wife about all this.”

“Oh shit!” I thought.

Obviously, I had to delete the message when I got home, but in Alzheimer’s simple tasks like receiving and deleting voice messages are not simple. I had forgotten how to do it. So the next day, I sent a text to the warden in Phoenix.

“I’m getting some work-related messages on the home phone. Can you tell me how to access and delete, so there’s room for your messages?”

I got a text back from Mary Catherine with the code, then listened to the voicemail in horror: “Mrs. O’Brien, we wanted to let you know that your husband drove here alone. He shouldn’t have done that. Poor judgment. We care about him, and drove him home safely.”

Ping. I hit the delete button. Now there’s no message, no trace. Please don’t tell the warden; she still doesn’t know.

But this was just the beginning of a Larry David-like week of loss of filter and judgment that many in this disease face.

Earlier, Mary Catherine had made plans for the house to be cleaned on Friday in advance of my son Brendan, his fiancée Laken and another couple coming down to the Cape for a weekend wedding. Understandably, my wife wanted to make a good impression. I don’t clean so well.

Come Thursday I called Mary Catherine to make sure the woman was coming to clean. Mary Catherine texted me the number to call to confirm. The good thing about a text phone number is that all one has to do is hit the number, and the call is placed automatically. No chance of error.

At about 9 a.m. that day, I punched the number and called the woman. Not a surprise, I got voice mail. In my best Eddy Haskell, I said, “So happy you’re coming tomorrow to clean the house. Want to make sure the door is open, and that I give you a check.”

With no response, I called again at noon. Same tone in my message.

Still no response at 4 p.m., so I called a third time, leaving a message with a bit of attitude.

Alzheimer’s, at times, can take one from calm to bordering on rage quicker than a Porsche from zero to sixty.

I called again at 7 p.m.; no answer, left yet another voicemail, raising the DEFCOM of misguided urgency in the face of “Sundowning,” a neurological phenomenon associated with increased confusion and restlessness at the end of the day when darkness prevails. Next step nuclear war. Still not able to get off the couch, with symptomatic rage and paranoia escalating, I then sent the warden a text, saying we should cancel the cleaning, that I needed a plan B.  

“Don’t cancel!” she immediately texted back. “The house was a mess when I left. I will be so upset if the house is an embarrassment…toilets, floors, dust, and beds!”

So I waited, as anxiety escalated. By 9 p.m., twelve hours before the house was to be cleaned, still no answer. In a moment that I now regret I reached for the phone and got voicemail once again.

“This is bullshit!” I said without a filter. “I’ve called and left messages four times. This is my fifth! I have medical issues and was trying to show you courtesy, now I’m pissed. YOU’RE FIRED! Don’t come tomorrow morning.”

Click.

I then texted the warden: “I fired the cleaning lady!”

My wife and I were on radio silence. Mary Catherine was apoplectic. I went to bed, on the couch, at least with the “satisfaction” that I had taken things into my own hands—a dangerous place for me to put my trust.

The next morning Conor, who knew about the exchange, handed me my cell phone. “Dad, you need to call this woman back to apologize and find out if she’s coming.

Reluctantly, I punched the earlier text with the number. One ring and the woman answered. There was a pause. “GREEEG, she said, drawing out my name. There was another pause. “I’M… NOT…YOUR… CLEANING… LADY!”

Click.

My wife had texted me the wrong number, can happen, but I had left all these inappropriate voicemails in my rage. This poor woman now knew who I was, probably Googled me, and I feared that she was talking to police or close friends about the voicemails. She wouldn’t take a return call from me.

As it turned out, the “cleaning lady” who had agreed to tidy the house, showed up on time with another woman and cleaned, spic and span, for four hours. I felt blessed, yet wholly shameful for the earlier mistaken identity.

Fast forward to Friday night. I needed a break; was mentally unhinged from the week. I sought confession. So I called a New York writer friend now living on the Cape to meet for a counseling session at a local restaurant. I took an UBER both ways.

On my UBER ride home, I got a text from Conor asking me to pick up a few items at a local convenience store. I asked the driver to pull up and drop me off. “I’ll be right back,” and headed to the store to pick up what was on my list. With the provisions in hand, I walked back out to the UBER, hopped in the front seat, placed my groceries on the floor, my laptop on my lap, and secured my seatbelt. Then turned to the driver, looked him in the eye, and said, “We’re ready to go.”

There was that awkward pause. The driver hesitated, then said bluntly: “Are you sure you want to be here?”

In an instant, reading the man’s face, I realized I had gotten into the wrong car, another Sundowning moment. The gentleman could tell I was confused. “I’m so sorry,” I said. “I have some medical issue. I feel terrible about this.”

“I know who you are, Greg. It’s Ok.”

Brewster is a small, caring town.

Yet in my paranoia, the man seemed too accommodating. My mind in this disease was racing. I feared he might be the husband of the woman that I had reamed out in the earlier voicemail and that he was tracking me down for payback. My terror rose to the level in my imagination that within minutes a Mafia “gumba,” hiding in the back seat, would surface with a strip of a clothesline, strangle me, cut me up into pieces, and take me to the Brewster dump.

I couldn’t wait to get out of the car. Once I did, I saw the UBER driver waving at me from his car. I acted as nothing had happened but clearly shaken from the week of experiencing paranoia, rage and bad judgment, which is what many do in Alzheimer’s.

It all started with a venial sin.

I confess…

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Award-winning journalist and author Greg O’Brien has been contributing to HuffPost’s unpaid contributors platform since 2014 (https://www.huffingtonpost.com/author/greg-obrien).

O’Brien’s latest book, “On Pluto: Inside the Mind of Alzheimer’s,” has won the 2015 Beverly Hills International Book Award for Medicine, the 2015 International Book Award for Health, and is an Eric Hoffer International Book Award finalist, as well as a finalist for USA Best Book Awards. An expanded edition of On Pluto has just been released and being distributed through Viking Penguin/Random House distribution system. On Pluto: Inside the Mind of Alzheimer’s is the first book written by an investigative reporter embedded inside the mind of Alzheimer’s chronicling the progression of the disease. Alzheimer’s took his maternal grandfather, mother, paternal uncle, and before O’Brien’s father’s death, he also was diagnosed with dementia.

O’Brien also is the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. NPR’s “All Things Considered” is running a series about O’Brien’s journey, online at npr.org/series/389781574/inside-alzheimers, and PBS/NOVA followed the Pluto journey in its groundbreaking Alzheimer’s documentary, “Can Alzheimer’s Be Stopped.” O’Brien has served on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s, and is a patient advocate for the Cure Alzheimer’s Fund of Boston and the distinguished Washington, DC based UsAgainstAlzheimer’s.

In addition to Huffington Post, over the years, O’Brien has contributed to: Psychology Today, Boston Herald, Boston Herald American, The Washington Post, Time magazine, Chicago Tribune, Denver Post, Arizona Republic, AP, UPI, USA Today, Providence Journal, Boston Magazine, Reader’s Digest, and Runner’s World, among other publications.

Source: Psychology Today