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I don’t want to be alone. Now what?

Dementia is a vicious disease. Robert’s decline is irreversible. All outcomes are terminal. He may linger for years, imprisoned by his illness. This is now the backdrop to my marriage.

I love Robert, but after 40 years, we have a legal union, but little else. We can no longer have a coherent, fluid conversation. All decisions about our lives fall to me. Robert has lost the ability to meet me halfway on anything. He shows he loves me when his face opens wide in greeting, but he no longer participates in our marriage. We are severed now. His disease has come between us. 

Stuck in between

In many ways, spouses are as imprisoned as their loved ones with dementia. We are bound by love and duty to support our spouses to the end of their lives. But are we obligated to give up our entire lives for their care? I have planned for Robert’s care for the next ten years. Am I to exist in a holding pattern until he passes? Am I to exist solely as his provider? 

When I decided to place Robert in a memory care facility, I chose my life over his ongoing care.

But are there limits to that choice? Can I live a full-throated life, brimming with adventure, or am I bound to live within a narrowly circumscribed definition of propriety? What if a full life means being in a loving, reciprocal, committed partnership? Can I find that new relationship? 

A moral conundrum

This is a morally sticky question without a one-size-fits-all answer. After my solo trip to the Central Coast of California, I knew I didn’t want to be alone for the rest of my life. I also didn’t have the foggiest idea about how to move forward. Am I temperamentally suited to dating while Robert is alive? Could I psychologically ford the moral dilemma dating would engender? 

I’m not a religious person. I do not believe there is either an angry or a benevolent god sitting in judgment of our actions. When faced with a moral dilemma, I ask myself, “What would you do if no one was looking?” 

Why this question? Because the decisions we make when no one is looking are checked against our internal moral compass. I believe this is the only compass that matters. We make private decisions independent of what anyone else might think of us or how society might label us. When we act with integrity, in line with our ethics regardless of external factors, our morals are sound.

I believe this is my only life. For me, a full life includes the companionship and love of a partner. Robert can no longer be that partner.

Is the answer so simple?

But, of course, the answer isn’t quite that simple. My full ethical canon includes the edict (shared by medical practitioners), that I should “do no harm.” Would rebuilding my life with someone new hurt Robert? Would it hurt our children? 

I decided to talk to my daughter, Maddie, about my questions. She is unabashedly practical and has a completely different perspective on the world than I have. She’s the person I go to if I want to sneak up on a problem sideways to uncover an unexplored path forward. 

“Do you think it would be weird if I started to date again?”

“Yes, it might be a little weird. But I don’t think Dad would want you to be alone, Mom. You’re young. You have a lot to offer.”

“How do you think Jackson would feel about me dating?”

“I’m not sure. He doesn’t have much experience with relationships. He might have a hard time with it.”

What would Robert do?

I let that conversation percolate in my psyche for a few weeks. The truth is that Robert and I never discussed our expectations for the other if one of us lost our mind. I don’t know how he would feel. Yes, in the abstract, he wouldn’t want me to be lonely. But the question is no longer abstract. Here we are.

As the months rolled along, my behavior became increasingly irrational. I was overly involved in my (adult) children’s lives. I provided unsolicited advice on everything from Lincoln’s care to negotiating workplace skirmishes. This is not like me. I respect my kids, believe in their ability to make choices, and generally wait for them to ask for my advice. But now, slowly, insistently, I was intruding in their lives. I even looked a bit crazed. My gaze was too intense. I was losing weight.

You’re a little bit crazy. You know that, right?

The seed I’d planted with Maddie began to germinate. She could see that my marriage had been my ballast. Without it, my equilibrium was lost. I needed a partner to provide a focus and an outlet for my energies. 

So she staged an intervention.

One quiet Saturday evening, after gorging ourselves on pizza at my house, Maddie and Trent turned a coordinated gaze to me and Maddie said, “Mom, Trent and I think you should start dating. We think it would be good for you.” Trent shifted uncomfortably in his chair and averted his eyes. But Maddie pushed on. “You are too young to be alone, Mom. Jackson will come around.”

And just like that, I had permission to move forward.

But how on earth does someone in my position do that?

To be continued…

. . . . .

There is scant literature on dating among healthy spouses of dementia patients. Still, it’s worth exploring the discussion to understand how others navigate this potentially fraught decision.

3 thoughts on “I don’t want to be alone. Now what?”

  1. Sharon,

    You get a standing ovation for this choice!

    In 2021 I was diagnosed with Early Onset Alzheimer’s Disease. I was referred to “Palliative Care” to “get my affairs in order”. I was told I might have 2-8 years of life left. WTF was Richard’s and my response to the “from out of left field” diagnosis. We told only a few family members and for the next year, hunkered down and hammered out to the best of our foresight, how our world would operate…emotionally, financially, communication…all of it.

    Lot of tears, fears, and worry….but never anger. I didn’t see the point in being angry. It wouldn’t change anything and I didn’t want to waste whatever lucid time I might have remaining, in anger. I still wanted to be able to love my husband. It was not all smooth sailing but at the end of that first year, I told Richard when I no longer recognized him, and no longer interacted with him, I wanted him to find a partner who would give his life companionship, sex, and a sense of future. I trusted that he would always, always make sure I was in the best care but I didn’t it to overtake his other activities, interests, and retirement plans….his LIFE.

    Neither of us deserved this diagnosis, but the bottom line was, I wasn’t going to have to deal with it because I wouldn’t be “here” any longer….but he would. I didn’t want his life velcro’d to mine if there was no longer a viable relationship.

    He said very little then, or to this day about my wish for him. Will he act on my wish? I don’t know. I don’t know if it’s even in his wheelhouse. But I thank you for putting your choice out there for him to read.

    Your posts have been insightful, thought-provoking, poignant and gut-wrenching to read. You are one brave woman. I am glad you are in Richard’s world and by extension, mine.

    Sofia

    1. Thank you, Sofia. Responses to my choice to pursue another relationship have been a mixed bag. I guess that means it’s a subject worthy of discussion! I appreciate your kindness. :-)

  2. I really can’t understand why anyone would give you a hard time about finding another relationship, whether Robert’s still in care, or has passed.

    What I do know, speaking just for myself, is that I put off finding another relationship way too long. It’s been 20 years since my divorce. My church’s DivorceCare class urged us to wait for at least 5 years for those who hand long-term marriages before considering dating to find out who we really were without a partner.

    That 5-year mark I jumped into PlentyOfFish and Match — with hideous results. I didn’t want a younger man, and those my age or older were either really bottom of the barrel people [shows up in a wife-beater t-shirt], putting sex first [claimed to be a Stanford doctor, so he was ‘used to seeing women naked’], or fancied themselves as psychologists and presented me with quizzes before they would consider dating me. I honestly couldn’t continue to weed through the dregs of society to find that gem — so I just quit.

    It’s been 20-years now. I’ve become spoiled. I get a kick out of doing precisely what I want to do, precisely when I want to do it. My work life relationships really keep me going and honestly, I just can’t imagine entering into another relationship.

    … but then again, my relationship picker is broken. I choose the wrong men even when I think I’m choosing the right ones …

    For me it’s better this way. But if you’re going to date — best jump back into that pool before you get spoiled too!

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