Learning About Love Through Alzheimer's Disease

Alzheimer's disease transforms the mutuality of love, but it doesn't have to leave the caregiver feeling isolated and bitter.

March 10, 2015
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When a beloved spouse develops dementia, all kinds of catastrophes can unfold in a family, ranging from financial and legal to emotional and psychological. It's hard to believe that this disease, which creates such mayhem, could mean anything other than disaster for those touched by it. Yet we know that other diseases, such as cancer and heart attack, can lead to transformative life experiences that open doors to greater love and spirituality. Is this same kind of existential opportunity possible with early-onset Alzheimer's?

I began to find the answer to this question when my beloved husband, Ed Epstein, developed early-onset Alzheimer's in his mid 50s.

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Love Lost: The First Sign of Ed's Dementia
Both Ed and I were psychotherapists, and we shared everything, including working together as couple therapists. Our closeness fired on all cylinders: physical, emotional, spiritual, and intellectual. For more than 25 years, Ed was my best friend and my lover, and I expected that he could always help me know myself better and that I would do the same for him, holding up the mirrors in which we saw ourselves in each other's eyes.

For some years before Ed received a conclusive diagnosis (holographic PETscan) of dementia at the age of 59, I felt and saw the strange erasing of my beloved. And as this happened, I began to understand the nature of love in a radical new way. On April 8, 2008, I wrote the following in my journal:

I awoke during the night and involuntarily mulled over the problem of what has been missing in the last 5 years of our relationship. Really, it’s been the lack of witnessing that has been so hard. Ed rarely knows where I am, what I’m doing, what is going on in my physical or mental being. Ed is oblivious of me unless he needs me. Or, to put it more accurately, he just takes me for granted as a support.

Thus began the lessons of love taught to me by early-onset Alzheimer's disease. By erasing what Ed had provided, the disease clarified the nature of love in a radical new way.

I had already studied and written a lot about love. In couples in therapy and in parent-child relationships, I had witnessed the difference between love and attachment bonds. A love bond is personal and particular, and the attachment bond is biological and universal. As a human being, I knew that love was not the same as romance or idealization, but, in the face of my own love's deterioration, now I began to see more clearly what love is.

True love is not driven by our desire for reproduction, nor dependent on attraction or control of the other, but it is instead a kind of spiritual practice between two people that requires both psychological and emotional skills. True love is:

• Knowing the beloved well and holding him or her in mind.
• Accepting the beloved just as he or she is, in reality.
• Mutual, reciprocal, egalitarian (give and take).
• Deepening in interest and engagement over time, creating the sense that the beloved is both mysterious and familiar.

We all long to be loved in this way, and yet, in my clinical practice I've discovered that few of us know how to do it. This kind of love requires empathy, equanimity, emotional maturity, open communication, and truth telling. These skills are gradually erased in early-onset Alzheimer's disease.

More: Alzheimer's Disease Is Slowed by Close Relationships

As dementia began to unfold in my beloved husband, I did not know what was happening. Neither did he. He did all that he could to cover up his mistakes and lack of judgment, and even though I saw them, neither of us wanted to think he was losing his mind.

Eventually, when I discovered that he had taken out $70,000 of credit cards I knew nothing about, and written $57,000 of checks to himself, I recognized that something was terribly wrong. As we faced financial ruin, he would be unable to put his thoughts into sequence, to use his short-term memory, to make decisions, or to take initiative. And yet, he never showed the supposedly archetypal signs of leaving the gas stove burning, wandering out into a wintry evening on his own, or becoming enraged when he couldn't find something. It was the wrecked finances that eventually brought us to his getting a neuropsychological evaluation.

Cherishment: Love After Dementia
There was no way to retain our mutual love on a two-way street in which I could be a whole self while embracing the whole self of Ed. Loving another person requires us to remain affectionately alert to that other person, always willing to see him or her freshly. This requires our returning again and again, with the deepest curiosity, to the question "Who are you?"

Too often, though, with a longtime partner, an adult child, or even a good friend, we find ourselves filling in the blanks with a ho-hum attitude, treating the other person as though he or she is not mysterious. But true love is like science, in that it always returns to our willingness to know another person in the moment, with openheartedness. When this can happen reciprocally, both people come to depend on it, to be vulnerable to each other, because they can see and know themselves more compassionately and clearly through their closeness.

Parents and children, for example, may have secure attachment bonds, but that does not mean they know each other as individuals. Think about it: Your parent may have protected you and helped you on all levels as a child, but may not be interested in knowing you as an adult. And how many adult children, though they have deep attachment to their parents, really want to know, with openheartedness, who their parents are as individuals?

More: 5 Ways to Heal a Broken Heart

In order to continue my closeness to Ed, I had to become not his partner, but something more like his mother, his resource. He was reversing his mental maturity and becoming more childlike month by month. This is the course of the disease, as cognitive and emotional functioning move backwards. On his 64th birthday, in a strange moment of lucidity, he answered the question "How old are you?" by saying thoughtfully, "Between 6 and 8, I think." By the summer of 2013, I observed the following:

Ed has a heartfelt connection to me, but he cannot ask me a personal question. He reaches out sweetly and tenderly for hugs and kisses and wants to caress me, but he cannot picture me driving home, he does not know if I am ill, and he cannot imagine anything about me that is separate from him. Ed adores me and ignores me.

Faced with this, I transformed my love into what I call "cherishment"—love on a one-way street. We cherish an ill person, a pet, a child, by keeping and holding him or her dear, cultivating our affection for that particular being, but not expecting reciprocation. It is different from mere caregiving, in that cherishing has pleasure at its core, not just sustaining life. We feel pleasure in coming to care for another well and to know deeply his or her needs.

When we cherish our beloved person through the course of early-onset Alzheimer's, we caregivers also have to meet our needs for personal love outside of that relationship, or we risk becoming a bitter and isolated caregiver. We can no longer expect to be seen and known and remembered. In my own case, it was important for me to tell this story for myself and to escape some of the stereotypes of caring for Alzheimer's patients I found in the literature. I have told it in raw detail in The Present Heart: A Memoir of Love, Loss and Discovery.  

Both Ed and I had many years of serious practice of Buddhism under our belts when we entered into this tragic time. Consequently—and remarkably—we both developed spiritually and deepened our appreciation for true love during the decade of his decline and eventual death in October 2014. For me, it has been a remarkable journey of learning about love through early-onset Alzheimer's disease.