A story of love, loss and Lewy body dementia

In her new book, I Didn't See It Coming, Mary Lou Falcone tells us all about her late husband's battle with Lewy body dementia and how she was his loving caregiver. It also tells of the older couple's experiences with marriage, love, loss and the often misunderstood disease.

The following passages are written from Mary Lou’s perspective, and then Nicky’s perspective before he passed away.

Marriage is a wonderful institution, but it’s not for everyone.  For years my mantra was: “We are together because we choose to be. Why potentially spoil it with a piece of paper?” That’s precisely why I said “no” to Nicky’s many proposals of marriage over a thirty-year period…and then, one fateful day, I needed to pop the marriage question myself, and it was Nicky who said “yes.”

This is a love story, focusing on three days in February, a grand trifecta destined to change the course of our beautiful lives forever.  

By this time, Nicky and I have now been together for 34 years and, periodically, he asks me to marry him. My answer is always the same, “Why change what is perfect?”

And so, in early February of 2017, it totally surprises him when I, seemingly out of the blue, say, “Why don’t we get married!”

To which he replies, “Why, after all these years, this sudden change of heart?”

My answer to him: “We clearly are still very much in love; we are in our seventies and not getting any younger.  Why not?”

 But the truth is—I am very worried about him and have been for many months. What specifically prompted my marriage proposal? During a recent cardiologist’s visit, an appointment was quickly made to do an angiogram on Valentine’s Day. “Doesn’t everyone check their heart on this day?” was my quip, just to make a heavy situation a bit lighter. 

And so, on February 13, after decades of everyone assuming we are married, we say our vows at City Hall, and become man and wife. It’s simply a legality, but also a blessing, given what’s to come. 

The next day we “newlyweds” spend Valentine’s Day at the hospital, hoping that the scheduled angiogram is just a routine precaution, the worst outcome perhaps being a stent. What is clear, as we sit together in the hospital waiting room holding hands, is that we have never been more in love.  

My concerns turn out to be justified—oh, how I would have loved to be wrong! The angiogram results are shocking. It’s the worst news possible: all four arteries are clogged, blocked at 100, 99, 80 and 50 per cent. How Nicky was still running up and down subway steps that very morning is a complete mystery. The doctors tell us to go home and schedule an appointment for surgery.

Completely shocked by the news and even more shocked at the suggestion of going home, I quickly compose myself and calmly say: “I don’t think so. We are not going anywhere. You have just given us disastrous news, so I think we will stay right here until your top surgeon is summoned to review this report.” 

The triple bypass surgery is scheduled for the next morning.

How ironic that Nicky, the man with the biggest heart in the world, turns out to be the one with heart problems. 

I am so happy to be here to tell the tale. Never did I dream that my heart would be a problem.

For months I was feeling so tired, foggy, and occasionally confused. While ML and I are in Vienna to usher in 2017, odd things are happening. I black out on New Year’s Eve in the hotel lobby and pretend to have tripped as I quickly come to.

Then there’s the night between Christmas and New Year’s Day when I get lost walking to meet ML and friends at a nearby restaurant I know well. I am angry at ML for not writing down the address, and I’ve left my phone in New York so I can’t call her. After an hour of aimlessly wandering and still not finding the place, instead of panicking, I just stand very still near St Stephen’s Cathedral, hoping ML will get my vibe and come looking for me.

A similar miracle happened once 25 years ago in Japan, when we magically found each other walking down a secluded street. So maybe it can happen again. I can only imagine how worried she must be. She does come looking for me, and we’re reunited.  Lucky again. As we join our friends, now an hour and a half late, which is so unlike me, my embarrassment subsides as they are visibly relieved that I am all right.

From Vienna we travel on to Paris, where one night I awake drenched in sweat, shivering, and suffering from major indigestion. By morning, I am fine and think nothing of it.

Later in January 2017, I am in my doctor’s office for my usual six-month physical and happen to ask about the results of a test I had taken six months earlier—a calcium score test. When I look at the doctor’s face turning white as a sheet, I know trouble is brewing. The score is seriously off the charts, dangerously high, and he neglected to flag it when he should have. Now wasting no time, he gets me to a top cardiologist.

The cardiologist, whom I immediately trust and like, gives me the bad news following an angiogram: I need serious surgery, triple bypass surgery. This is the last thing ML and I expected to hear. 

The surgery is intense and long. I am following the bright, comforting white light, but suddenly I stop my peaceful departure. No, I can’t do this. I can’t leave ML now—after all, we’ve been married for only two days! I need to come back to her for just a bit longer.

The hospital recovery period is brutal, complete with wild, horrible hallucinations. I can’t get a grip. Everyone chalks it up to the anesthesia, but honestly, the hallucinations and fogginess never completely subside in the months that follow. One very mean nurse thinks there is a major problem brewing, but because she’s so abrasive, no one pays much attention to her warnings. I just can’t wait to be home with my “new” wife, where I know I will be safe.

The heart is now fixed, but the aftermath doesn’t bring any clarity of thought or renewed energy either. I keep thinking this will just take more time. Yet, I can’t help wondering, “What’s happening to me?”

 Mary Lou Falcone is an internationally known classical music publicist/strategist and author of the memoir, called I Didn’t See It Coming: Scenes of Love, Loss and Lewy Body Dementia (East End Press). More at www.maryloufalcone.com