By now most people reading blogs like mine, about caring for a spouse with Alzheimer’s, have no doubt heard about In Love: A Memoir of Love and Loss in which well respected author Amy Bloom writes about supporting her husband when he decides that he would rather die than live with the disease. It is the kind of book being praised on NPR and Goodreads. I gather the book is beautifully written and has deeply moved the readers who read and reviewed it.
I have not read the book. Actually, I have barely read/listened to the reviews, although I did more or less make it through the first one I saw in the NY Times earlier this week. From that quick skim through, I know that Bloom and her husband were deeply happy before his diagnosis of Alzheimer’s, that he decided he would prefer to die than go through the changes Alzheimer’s was going to make in his identity, and that he and Bloom were very united once he made his decision.
I have no ethical problem with the choice they made. I believe that everyone’s quality of life decisions are individual. Ralph and I have signed our living wills. I witnessed my mother’s declining years up close and personal in my home as she enjoyed being alive less and less. I wished, and still wish, she had died sooner than later (like my father who died of a heart attack in the hospital the night before he was to be given a diagnosis of cancer, probably bone, for the excruciating pain he’d experienced during the previous month).
Yet reading about this book has flummoxed me (ok, creeped me out is what I really feel but was a little shy about saying out loud)? I have not been able to think straight about my reaction. My thoughts keep sliding away. What is it that has repelled me like the wrong side of a magnet?
Well, number one, the idea of Ralph choosing to end his life right now is so completely foreign to me that I can’t get my head around the concept. As I’ve written here before, he is completely happy with his life—I write this sentence in a waiting room while he has his weekly music therapy; in half an hour he will come out humming Leonard Cohen’s Halleluiah or The Eagles’ Hotel California and keep humming in the elevator and in the car home.
And even when he was first diagnosed and overwhelmed with some combination of anxiety and depression, suicide was not part of his mental vocabulary. His memory was shot but his mental acumen was still intact. We were both petrified at what the future would hold, petrified for different reasons. He was just petrified to have me out of his sight in case the rest of his memory went suddenly. He wanted to be taken care of. I was petrified at the responsibility I was taking on; I imagined life with an angry, anxious cognitively declining man and my heart rattled in horror. If he had brought up preemptively ending his life, I very possibly might have been open to it. (Pre-diagnosis, there were plenty of times I wanted him not dead exactly, but completely out of my life.) Then he went on his meds, his anxiety decreased while his memory declined at such a gradual pace that I needed to write this blog to keep track.
Ralph is definitely not the same man I married. I gather loss of identity was deeply concerning to Bloom and her husband, whose name Brian Ameche I keep conveniently forgetting. But while Amy and Brian had only been married twelve happy years, Ralph and I had been a couple for close to 40 years when he got his diagnosis. Over those decades we had both gone through identity changes. I felt I had already been in several marriages as the dynamics between us shifted. Who held the emotional upper hand travelled back and forth between us, occasionally landing at oases of shared affectionate unity. Our worldviews diverged, mine growing more optimistic, his less, and our political leanings became a more divisive problem than Alzheimer’s—I really hated libertarian Ralph of 2003. As for personal identity, gregarious, charismatic Ralph became loner Ralph long before the slightest overt evidence of cognitive decline and I slowly lost my social insecurities and became, however briefly, something of a social butterfly. And all this was before Ralph and I went into counseling in our mid-fifties and discovered we could get along after all.
Which is to say, the new Alzheimer’s Ralph is as real to me as all the other Ralph’s I’ve been married to. And is certainly as real to Ralph. He has no interest in the man he used to be, has no interest in his old interests. He has no sense really of having “lost” much. He is living moment to moment and, as I’ve said, is as happy as he’s ever been.
So why does a book about a man who made a different choice trigger me so.
Perhaps because the Ralph who does not miss his past also does not worry much about his future. Those fears have been repressed or blocked or just are beyond his scope. I, however, do think about the future. I do worry about unspeakables like diapers and loss of speech, of bedsores and hallucinations. I worry but sometimes—and this is the uncomfortable truth—sometimes, I wish they’d come already, that I was freed from togetherness limbo.
I know that is not the emotional thread of Bloom and Ameche’s story, but it is my emotional thread, and one that can tie me knots if I let it. So reading a book like In Love is not for me, at least right now. But of course, with Alzheimer’s there is only imagining what tomorrow will bring.