Dementia has robbed him of function. Caring for him has left her in debt. But she has never forgotten the man she married. A part of her seems etched in his brain, too.
When Bernie met Mary, he was a budding scholar and she looked like Goldie Hawn: short skirts, nice legs. Hey, love happens. There were flowers, dinner dates, movies — plenty of what’s celebrated on St. Valentine’s Day. They married, settled in the Olney section of Philadelphia, and raised four children who are now successful, good-hearted adults. They were active in their church and maintained a large network of friends. Every Christmas they were hosts to a huge party where songbooks were distributed and carols sung.
Flash-forward 40 years. Nobody lives happily ever after. Bernie, who had once studied to be a priest, knew that. Still, the irony of his horrible, drawn-out exit cannot be overlooked. He suffers from frontal temporal dementia, a disease that has left him with what Mary calls “his song . . . his constant muttering of his monosyllables.” All day and all night, interrupted by sleep and, on “bad” days, sobbing. This is what’s left of a once brilliant man.
Of the approximately 50,000 people who have graduated from La Salle University over the years, 60 became Fulbright Scholars, and Bernie was one of them. They paid him to live in what was then West Germany for a year. If he wanted to write a thesis as a result, fine; if not, that would be fine, too.
I was quite intimidated by Bernie when I first met him. For one thing he was the big brother of my girlfriend, the woman I’ve been lucky enough to be married to for 25 years. For another, he knew everything, read almost every book and, if he hadn’t read it, would write down the title so he could get it from the library on his next weekly visit.
When he flashed one of the kindest smiles I’d ever seen on a man, I knew that he would not hold my being a dunderhead against me. I loved talking philosophy with him. His intelligence was not the only characteristic that made Bernie the best of companions, Mary said.
“Bernie has a deep-down goodness that is a part of the fabric of his being. Being married to him is a privilege, a wonderful reality.”
Before Bernie was institutionalized, I had walked him around his neighborhood one glorious fall afternoon when the smell of burning leaves filled the air. His disease had already advanced to the point where we couldn’t hold a conversation.
Yet, anytime I mentioned Mary, a wonderful smile would appear. “Mary is just so great.”
When I told Mary this, she said: “Your e-mail was especially timely, because on Sunday I heard Bernie muttering, ‘Mary is a pain in the ass’ repeatedly. We were lying on the bed, me reading and he just resting, and I realized I am the one getting him into the shower, and toileting him frequently, dragging him down to the dining room for a snack, out for a walk. Those things are hard on him now — the very basics — in his vastly impaired state. The nurse told me he still asks, ‘Where’s Mary?’ first thing every morning. So at least I have that in my favor!”
Mary has refinanced her house and taken in boarders. Family and friends have thrown a number of benefits for the man who once dwelled in what’s now a shell. Still, it’s a losing battle.
It’s $6,000 a month to keep Bernie at Arden Courts, an assisted-living facility in Montgomery County, and money is running out. Despite the help, Mary falls more into debt. She tried placing Bernie in a nursing home because that would mean that Medicaid and Medicare would pick up the tab. That’s where it gets sticky.
Bernie is 64, and because of his relatively young age, nursing homes consider him a bad bet. (People in their 80s or 90s will not live so long.) Also, Bernie takes an antipsychotic drug called Haldol, which is a red flag, a warning that a patient could become violent. One nursing home did in fact take him. That lasted one day, and then it was back to Arden Courts. Mary moved Bernie to a new place last week, but it may be some months before Medicaid kicks in, and there’s always the real possibility that it might not work out either.
Mary visits usually for about three hours a day (and sometimes — on holidays and his birthday — as many as six), though by now Bernie will only occasionally recognize her and he lays in a fetal position for long stretches. She mentioned the poem by Aeschylus:
He who learns must suffer.
And even in our sleep
Pain that cannot forget
Falls drop by drop upon the heart,
And in our own despair, against our will,
Comes wisdom to us by the awful grace of God.
“If only it didn’t have to hurt so much to receive this wisdom,” Mary said.
So, enjoy the easy romance with your soul mate on Valentine’s Day. Mary and Bernie certainly did over the years. Laugh, share, and make love along with promises. Cherish the moment. Remember, though, that true love asks a question that Mary and Bernie Black answered back in the early 1970s:
“Do you really have what it takes?”