We had a "plan of care" meeting today at my husband Nelson's care facility. He was diagnosed with Lewy Body Disease in 1997, and until January of 2010, I had been his primary caregiver.
At the meeting, we shared our wonder at the unpredictability of this strange disease. Now he's alert; now he's not. Now he's speaking clearly; now he's not. Now he knows where he is; now he doesn't. When all seemed to have been said and our concerns addressed, there was silence. The social worker looked at me and asked how I was doing. I drew a blank. I couldn't shift my thinking. I didn't know what to say.
How do you begin to talk about the experience of letting go of a spouse one day at a time for years on end? Where are the words to describe the sense of having a husband, but of not having a marriage? What do you say about the depression that inevitably colors days or weeks at a time? What do you leave out because you want to protect them from your pain? What do you leave out because you don't want to feel the pain? When, if not now, do you expose the fear of what is going to happen to you? How much do they really want to know? Do they just want reassurance that you are going to keep the faith? Do they see in your face the tiredness you feel from living with loss, the drain you feel from being bounced between hope and despair, the numbness you choose when you can't feel anymore?
I said something inane. "I vacillate." Then I added, "The house feels so empty."
Most revealing to me was how blindsided I was by the question. More often, I am asked about Nelson. If I'm not careful, even I forget that I need to ask myself how I'm doing.
So, how am I doing? Once again I'm recognizing that I have the capacity to do things that I never would have chosen or of which I believed myself incapable. I go to bed and get up in a house that screams empty. I do what has to be done: chores and maintenance, bill paying and shopping; and then at 4:30, I walk in to see my husband, wondering what I will find. I deal with calm or calamity depending on the day.
Last night he greeted me with, "I want to be out of here by tonight." It was not a request, a suggestion, or an afterthought. It was the equivalent of an order articulated with none of his frequent groping for words. I have learned to set my emotions on a shelf. I listen, reorient him to his reality, wade with him through his loss, and then come home to the empty house to wade through my own.
How am I doing? I'm learning to live in a divided place where faith and doubt constantly collide, where hope and despair live side-by-side, where joy and sadness are expressed back-to-back, where love and fear walk hand-in-hand.
That's how I'm doing. And thank you for asking.
Story originally written for the Lewy Body Dementia website and has been abridged. Used with permission.
Story submitted for the Ohio Department of Aging's Family Caregiving Story Project.
For caregiver assistance, please call your area agency on aging at 1-866-243-5678.
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