It is only with the heart that one can see rightly:
what is essential is invisible to the eye.
Antoine de Saint-Exupéry
The Little Prince
I learned about Alzheimer’s the way most people learn about the disease — involuntarily, when someone they are involved with gets the disease and they themselves are forced to become full-time Caregivers, as I was. My ex-boyfriend, Dick, whom I’d been dating off and on for several years, decided that he wanted us to move in together after I was purchasing a house. As roommates. Despite the fact that I’d broken up with him several months previously, and despite the fact that we were no longer involved in a relationship, I decided to share a house with him. I have no idea why I let him convince me to allow him to move in with me, but I did. I believe Dick had Alzheimer’s at that point, but, because I was completely unfamiliar with the disease and had never known anyone who had it, I didn’t recognize any of the early symptoms of Alzheimer’s dementia.
For instance, when we decided to move in together, we also agreed to buy Mortgage Insurance, which pays off the mortgage should one of the owners die. Afterward, however, Dick denied ever even having that conversation with me. I was hurt. It never occurred to me that he simply couldn’t remember having that conversation or agreeing to purchase that Insurance. I thought that, for some reason unknown to me, he was simply being spiteful.
Soon after we moved in together, Dick began having serious troubles at the University, where he taught Mathematics. Though students had been complaining for a few years already that he was difficult to understand when he lectured — and, conversely, he complained that they were inadequately prepared to take the Advanced Calculus classes that he was teaching — the complaints became more frequent and vociferous: to the point where the students walked out of his classes en masse, went directly to the Chairman, and insisted that Dick simply made no sense.
Dick was then assigned lower-level Algebra classes, which outraged him because it was, as he claimed, degrading for someone of his intelligence to be teaching such basic classes. Unfortunately, despite Dick’s “keen intelligence” the same scenario ensued in the lower level, basic classes. Dick had a drop-rate of 98% — the highest at the University. He blamed it on the students’ lack of preparation. Once again, the students blamed it on the fact that he made no sense, adding that whenever they asked him questions, he yelled at them or gave nonsensical answers. Dick was then assigned the Basic Arithmetic classes. The Chairman must have thought that anyone could teach those classes without difficulty.
Unfortunately, because the Chairman didn’t know Dick had Alzheimer’s — because nobody knew that Dick had Alzheimer’s — the Chairman was wrong in believing that Dick could teach the simplest classes. He couldn’t.
Dick was forced into early retirement in the middle of the quarter: a friend took over the classes. Dick was simply unable to teach any longer. In hindsight, I realize that the Alzheimer’s was beyond even the moderate-advanced stages by then, but no one knew it at the time. Not me, not his colleagues, not his family or friends, not even his physician.
Dick became depressed. Unbeknownst to me, he called his grown children, both of whom lived in other states, and told them that there was no food in the house and that I was forcing him to eat dirt. Imagine my shock and horror when, one evening, the police arrived at the house, telling me that Dick’s daughter had called them and said it was an emergency, that I was starving her father, “holding him prisoner,” and that Dick had called her “in fear of his life.”
As soon as the police came, they examined all the cupboards and the refrigerator, all of which were full of food. They also saw the partially eaten roast still in the pan on the top of the stove. They asked Dick if he’d eaten any of it. He said he didn’t remember. I told them I was a vegetarian and hadn’t eaten meat for over 10 years. While they were standing there, Dick went over to the pan and began tearing off pieces of meat, stuffing them into his mouth.
The police looked at each other. They looked at Dick again, who, at that point, was about 30-40 pounds overweight and had a huge belly. One of the policemen made the remark, to Dick, that he didn’t look like a man who was “starving to death”. Dick then pointed to me and said, “She forces me to eat dirt.” The officers asked him to show them the “dirt” I was forcing him to eat. He went over to the cupboard, opened it, and took out a dish of homemade, dark chocolate fudge with walnuts. He peeled back the foil. Over half the dish was gone: I’d just made it that morning. And I hadn’t eaten any.
Both officers, who knew us since we lived in a small village, went over to the pan of fudge. They asked if they could have some. “It’s dirt,” said Dick. “With rocks in it.” The officers ate some. “Damned good dirt,” said one, while the other asked for the recipe so his wife could make it.
They then asked Dick if he’d called his daughter and told her that I was starving him. He looked confused. They asked if he’d told her there was no food in the house, or that I was forcing him to eat dirt. He pointed to the fudge: “This is dirt,” he said. The officers apologized profusely and left. Dick asked me why the police had come to the house. After I explained it, he said, “But why did the police come over?”
Whenever his daughter called the police again, they refused to come to the house.
I thought Dick had “lost his mind”, but Alzheimer’s dementia never occurred to me. I knew nothing about it. All I knew was that ever since we’d moved in together, he seemed constantly to be lying, forgetting things, accusing me of being a liar over the most ridiculous things — like not doing the laundry, which was sitting, clean and folded, on his bed — having more car accidents, getting lost when he went to the grocery or to his daughter’s home for holidays.
Once, a Highway Patrolman found him by the side of the road in Illinois — two states west of where we lived, and nowhere near his daughter’s house in Georgia where he’d been traveling for Thanksgiving — confused, agitated, wringing his hands, crying. The officer only managed to reach me because after he contacted the local police, based on Dick’s driver’s license, which also happened to be expired, they’d given the Patrolman my name and my phone number at the house.
Dick’s daughter, who’d been desperately calling the Georgia Highway Patrol and all the hospitals when her father hadn’t arrived after five days, drove up to Illinois to get him and take him to her house. Her husband drove Dick’s car. Even then, she didn’t suspect Alzheimer’s, or, if she did, she never told me about it. Instead, she accused me of being selfish by not coming down to Thanksgiving with him and forcing him to drive alone (I hadn’t gone down to any holidays with him since before we’d moved in together, because I’d broken up with him, but I guess she didn’t remember that, or else he never told her that we weren’t in that type of relationship any longer).
Dick continued to deteriorate. Most important to my professional life was the fact that he seemed to “get increasingly sick” when I took out a loan to write my first novel — a loan for which he was in no way responsible since we were merely roommates sharing a house together: we were not married and had no finances in common. He constantly raged at me for taking out a bank loan to write “a stupid novel”, called me names, tore up what I was working on (no computers then — it was all handwritten) so that I was forced to hide my work, and stealing things: like my pens, paper, written drafts of the book, and research materials. I thought he was trying to punish me by keeping me from writing the novel by acting helpless. I did believe that he was really depressed — not because he had Alzheimer’s and was losing his memories — but because I was writing full-time, and he was jealous.
Dick often denounced my writing full-time, especially because, according to him, I’d been “stupid enough to take out a bank loan at 17 7/8% interest to write” since my own University would not allow me to take the year off with pay. Every day when I wrote, he’d literally break into my locked office where I was working, screaming things like, “Everybody has dreams and nobody gets to live theirs, so why should you?”
I admit that I began to hate him.
I very much regretted having moved in with him, especially since I’d broken up with him, once again, just before purchasing the house.
But since people like my parents and family had also always mocked me for wanting to be a writer, and had actually tried to prevent my doing so, I thought it was something all writers had to put up with. I still never suspected anything like Alzheimer’s.
I knew Dick was jealous, but didn’t understand why.
I was an English major/Professor who’d wanted to write since I was 6. He was a mathematician. What did he care if I took a year off work, took out a bank loan to live on, and wrote a novel? When he “calculated the odds” of my writing a novel that could actually get published as “less than 1 in a million, and by the way, closer to 0 than to 1”, I thought he was just cruel, and remembered why I’d broken up with him at least 10 times over the years we’d been dating, and wondered, furthermore, why I’d ever agreed to move in with him in the first place.
Dick’s condition worsened. He didn’t eat unless I cooked, but then called his daughter immediately after eating to complain that I was starving him. He didn’t go anywhere unless I forced him to leave the house, like when I took him to the Doctor’s office, but complained that I’d taken away his keys, locked him in the house (with me, I guess), and was holding him hostage. He didn’t even get out of bed. He never got dressed. He wore the same pair of mangy underwear even if someone came to the door and he answered it. He only talked to me to swear at me and call me by his ex-wife’s name. The only other person he talked to was his daughter: to complain that I was abusing him.
I thought Dick was doing everything in his power to keep me from writing and, determined not to let him control me, I continued writing even as I was taking care of him. I got pneumonia twice within 9 months. The second time, I got pneumonia with pleurisy, a very painful condition, and had to drive myself to an Urgent Care Center on Christmas Eve because Dick refused to do so, insisting that we were “divorced” and calling me by his first wife’s name. When I got angry that he kept calling me “Deborah”, he’d laugh and say it was just a joke.
Some joke, that Alzheimer’s.
His condition worsened when I returned to school, though his depression apparently lifted somewhat. He continued calling me “Deborah”, whom he’d divorced almost 30 years earlier. He accused me of having an affair with a previous boyfriend, one I hadn’t even seen or spoken to in over 15 years. He accused me of stealing money — how I could’ve done that, I do not recall. He accused me of trying to poison him. Probably by forcing him to eat dirt. The supposed adultery, theft, and poisoning he relayed to his children. Dick’s daughter drove up from Georgia to confront me, insisting that her father was ill and that I needed to take care of him better. I asked her to give me a break from taking care of him — I’d been doing it for almost 6 years — by taking him to Georgia to live with her, putting him in a Nursing Home or Hospital or Assisted Living Unit in Georgia, where she could be close to him. She was outraged. She claimed that she had enough to do with two small children, and that, besides, it was my responsibility as his “girlfriend.” When I told her we were only roommates, she just stared at me, her hands on her hips.
His son, in medical school in Michigan at the time, refused to take any more of his father’s phone calls, repeatedly calling Dick “crazy”.
Then came the physical violence.
My first novel, The Kommandant’s Mistress, had not only been published by HarperCollins and sold to publishers in 10 foreign countries, but had been reviewed extensively and well in most major, important publications, such as The New Yorker, Glamour, The San Francisco Chronicle, New York’s Newsday, and, most important, in The New York Times Book Review. One day, when an especially prestigious review came out, after Dick screamed at me and punched a few holes in the walls of the house, he got into fisticuffs in public with complete strangers at a local doughnut & coffee shop. The police escorted him home with a warning that they would arrest him if he ever did anything like that again. As soon as the front door closed, Dick turned and screamed at me, “I’ve done more in the world of mathematics than you could ever dream of, and you’ve gotten more national and international attention than I ever have, and all you did was write a stupid little novel.”
I realized then that, no matter what was wrong with him — still, never suspecting Alzheimer’s — our arrangement as roommates was over. I had to move out.
Then he hit me. Punched me, really. Right in the face.
He threatened to kill me, and, indeed, raised scissors and stabbed them at me.
I left the house.
I found another place to live.
I began to see a therapist, who advised me never to be alone in the house with him while I was packing my things, and to begin sleeping at the new house I’d rented. I did. On the last day at the old house, when the movers came to get anything I couldn’t move myself, Dick, calling me “Deborah” over and over, beat me up right in front of the three burly, male movers. All of them were so terrified, they simply stood there. None of them came to my aid, and they refused to come back into the house until the police arrived and made Dick leave the premises until I was moved out.
We’d lived together as roommates almost 6 years, and I’d been his Caregiver the entire time. He’d attacked me physically, threatened to kill me, destroyed my personal property. Yet I felt guilty for leaving. I don’t know, in hindsight, if I would’ve felt less guilty had I known he had Alzheimer’s. Perhaps his children, especially his daughter, might have stepped in sooner to help care for him, I don’t know.
I only knew that I had to save myself, and save myself I did. From Dick and his violence, Dick and his jealousy over my professional success, Dick and his rages, Dick and his crippling depression, Dick and his incessant lying. Dick and his Alzheimer’s.
It was only afterward, when he kept coming over to my new house and asking me when I was coming home, stopping me in the street or at the grocery and asking why I never came home anymore, that I began to suspect that something was seriously wrong with Dick.
Something besides jealousy over the fact that I wrote a novel that actually got published. Something besides the fact that my novel got good reviews and won awards. Something other than my promotion to Professor and my being awarded tenure at the University. Something was wrong with his brain. When I told my therapist, who happened to be an expert on Alzheimer’s, her eyes widened. She was the first person who began questioning me in detail on some of Dick’s behaviors. It was she who suggested that Dick not only had Alzheimer’s, but that he was in the late-moderate to advanced stages, and that, furthermore, she suspected Dick had had Alzheimer’s when we first moved in together, if not several years before that.
I was stunned.
As I began to research Alzheimer’s, I saw more and more evidence that Dick did, indeed, have dementia of the Alzheimer’s type, and had had it for years. Certainly he had it all the 6 years we lived together, but he had also exhibited signs of it for several years before that.
For a long time, I was saddened and depressed myself.
Then, in an attempt to heal myself, I decided to write a novel about my experiences with Alzheimer’s dementia and as a full-time Caregiver: Only with the Heart. It helped me heal because I was honest about my feelings as a Caregiver. I also tried to understand what it must be like to be a victim of Alzheimer’s: to lose your memories, your life, your very self. Eleanor, the character in the novel who has Alzheimer’s, narrates the second part of the book, after she has Alzheimer’s. Many readers have thanked me for helping them understand what their own parents or spouses had been going through. Publishers Weekly wrote, “It is a testimony to Szeman’s skill and artistry that Eleanor, stricken with Alzheimer’s, is perhaps the most reliable narrator in the book.”
Irish folksinger Tommy Sands, who lost his own mother to Alzheimer’s and wrote a song to her called “Good-bye, Love, There’s No One Leaving”, graciously met with me while I was writing the book and told me that, every time he performed that song, he felt his mother’s spirit on the stage with him. He was honored that I wanted to include it in the novel — as a song that Sam plays for his mother Eleanor — and said that his mother would have liked me.
Here’s Tommy’s song, as well as his commentary about his mother’s Alzheimer’s and his guilt about putting her in a Home.
Good-Bye Love There’s No One Leaving
Now is the moment of parting,
I can feel all the fear in your hand
Leaving a home full of memories,
on the verge of a strange new land
It doesn’t seem so long since the last time,
the first day you took me to school
Searching for words that are gentle,
being brave so the tears don’t come through
Good-bye love, there’s no one leaving
Good-bye love, there’s no one leaving
How swiftly the years seemed to follow,
but I never could see you grow old
We both turned the hay in the summer
and we sang when the winter was cold
And the stories I tell to my children
are the ones that you told me before
But the story now slowly unfolding
is the saddest story of all
Good-bye love, there’s no one leaving
Good-bye love, there’s no one leaving
I don’t know how much you can hear me,
but you seem quite content on your own
Are you drifting away to the summer
of the days of your childhood at home
And just when I feel I’ve betrayed you,
I am lost and I don’t know what to do
You smile and you whisper, My darling,
you must go and take your wee ones to school
Good-bye love, there’s no one leaving
Good-bye love, there’s no one leaving
And Tommy’s comments, which he also told me when my boyfriend and I had lunch with him during an Irish folk-song festival, where he sang this song. (By the time we met Tommy and he graciously gave me permission to use his song lyrics in the novel, his mother had already died.)
[1995:] I couldn’t help but feel a sense of betrayal as I led my mother out through the door of the family home for the last time. She had Alzheimer’s disease and we weren’t able to look after her anymore. I could feel the fear in her hand, just as she must have felt the fear of uncertainty in mine the first day she led me out to school. Early the next morning in the unfamiliar surroundings of the residential home I sat with her, not wanting to, or knowing how to, leave. She was the one who came to the rescue as usual. “You must go and take your wee ones to school,” she whispered suddenly. She had done her duty, now I must do mine. We still wave good-bye nearly every day as she drifts with dignity further and further away from the pains of the earth towards the perfection of the heavens. My thanks to the great people in Kennedy’s Home, Rostrevor, for being so good to her.
(Notes, Tommy Sands, ‘The Heart’s A Wonder’)
My novel Only with the Heart was published to critical acclaim, and is on the recommended reading list of most Alzheimer’s Chapters across the country. After writing it, I did feel that part of my own pain had healed. I also thought my experiences with Alzheimer’s were over.
I was wrong.
About 13 years after I’d left Dick, just before I was to move out of state, he appeared at my front door. My boyfriend opened the door, realized who it was and, locking the screen door, called to me. When I came to the door, Dick asked when I was coming home.
Without saying anything, I closed and locked the door (my therapist and the police had advised me to do this, for my own safety, whenever Dick showed up). Dick wouldn’t leave. He kept standing on the front porch, wringing his hands, crying, shouting, “Just tell me when you’re coming home.”
I phoned the police, who had been there many times before to escort Dick back to his house, trying always to explain to him that I didn’t live with him any longer, that I hadn’t lived with him for 13 years, and that he had to stop bothering me.
That was the last time I saw him: one of the officers was trying to convince Dick that he had to go home, the other was phoning Dick’s daughter and telling her that someone would have to drive up from Georgia to deal with this ongoing situation, Dick was swinging at the officers while trying to persuade them to get me to come home with him. He left the premises in the back of one of the squad cars, and one of the officers drove Dick’s truck home. The officers later returned to make sure that I was all right. They were always very good about that: protecting me from someone who, through Alzheimer’s, had unfortunately not only lost his memory but become physically violent.
Only with the Heart was born out of my unwilling experiences with Alzheimer’s and with being a Caregiver 24/7/365 for almost 6 years. My “patient” did not die and release me from being his Caregiver. Instead, he became violent, threatened repeatedly to kill me, and attacked me. A part of me died, many times over, because of Alzheimer’s. The part of me that survived left Dick and his disease so that I could live. Dick has 2 grown children and an ex-wife who, I imagine, have taken good care of him. If they put him in a Home, then he was well taken care of by the staff. I don’t know whether he’s still alive. If he is, I know that he doesn’t remember anything about me or most of his life by now.
That is the saddest part of Alzheimer’s dementia: it steals lives — the victims’ and the Caregivers’ — long before it ever kills the victims.
And, so far, there is absolutely nothing we can do to even slow it down, let alone cure or prevent it.