Mourning a husband who has not yet passed - Life stories - Salon.com

I had a life, and now it's gone. No, I'm not writing from the grave. I'm alive, and even reasonably well, but I seem to have lost my life -- you know, the one I've been living for the last five or six decades.

Can anyone really prepare us for the future? Does it really make a difference if someone tells a young girl that one day she'll find blood oozing from her body, or a young boy that he'll wake up with his PJs mucky from a wet dream, or a pregnant woman that birthing her child will be an experience of breathtaking agony, or a middle-aged person that one day she'll notice that her pubic hair has thinned to near baldness, or that we'll all get old and, one way or another, lose our life, even while we're still live.

I lost mine six months ago when I could no longer care for my husband's advancing dementia and sent him into care. Well, maybe I really lost it a couple of years before that, but I didn't know it then. He was here, sleeping in the same bed, eating at the same table, sitting at the same desk -- a living, breathing presence, if not a fully present one. His mind wasn't working so well, but the familiar body was fine, and his heart still tried to be what he had been. Until one day, he couldn't and I couldn't, and we both lost our lives -- only he doesn't know it.

We were close, but I wasn't one of those women of my generation who was defined by her marriage, by her husband's life and status. I had an independent life -- friends, work, travel -- and so did he. A couple of decades ago, Christopher Lasch described the family as a "haven in a heartless world." For us, it was such a haven, but our lives in the "heartless world" enriched and enlivened that haven and were a central part of the strength of our marriage and our family.

Now, he's gone -- and so is the haven. And the world does indeed seem more heartless. Yes, I still have my work, which can distract me from whatever pain and anxieties may beset me at the moment. But notice the language: It "can distract me." Not enliven and enrich me, but distract me. Worse yet, I can't always do it, can't summon it up as easily as I used to before Hank's dementia took a core part of my life.

I tell myself that I need to give in to the feelings, but I'm not even sure what they are. A certain emptiness, maybe fear. But fear of what? I can't say truthfully that I didn't feel some relief when Hank was safely settled in his new home, some sense of freedom to reclaim my life when he didn't need my attention so insistently. I was (still am) grateful not to have to rush home, after an hour or two away, wondering anxiously what I'd find when I opened the door.

Nor can I say that living alone is without its compensations. I don't feel that yearning loneliness I hear others speak of; I enjoy the solitude of it much of the time; and when I get tired of it, I have friends and family to lift me out. But I'm aware that there's an empty space -- not outside, not in the bed or at the dining room table, but inside me -- the space that Hank occupied for nearly a half century and whose presence there I'd come to depend upon.

Over decades as a psychotherapist (never mind living life), I've dealt with people suffering loss, read the literature on mourning, thought about Elisabeth Kübler-Ross's famous treatise on the subject, and wrote a response to it that was both admiring and critical. I remind myself of what I know, tell myself I'm in mourning, to let the feelings flow until they work themselves out and I come to terms with the new reality of my life. But mourning a real death is quite different from mourning a living one. Whatever one believes about death -- it's a passage into a kinder world, it's entry into nothingness, or anything in between -- it's still an undeniable fact. Death is finite; life, as we know it, is over. Yes, I know, people awaken with visions of visitations, but eventually we come to accept death as an end to life. But when the brain dies and leaves the body intact, there is no end.

A few days ago, I talked with a seventy-something man who spoke tearfully about his wife's recent death and his awkward attempts at coping with his new life as a widower and single man. I left our conversation feeling sad for him -- and also envious. At least, I thought, he knows what's ahead; he knows the meaning of the word "widower." But I'm a widow with a husband who's alive; I'm a single woman with the responsibilities of a wife; I have a future, but I have no idea what it will be or how to get there; and if my husband lives much longer, we'll go broke.

There, I've said it, the thought we dare not speak: My life would be easier if Hank had died. My impulse is to take it back, to wipe the words off the page, to retreat from the thought, pretend I never had it, and hope you'll forget I said it. But it would be adding another lie to all those words written these days about the selfless caretakers who think nothing of sacrificing their lives to a loved person who exists but doesn't live.

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http://www.salon.com/life/feature/2011/02/02/living_with_husband_with_dementia/index.html

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