Limited Options

My husband Richard knows who he is and where he lives. He can scooter his way to the library and to the supermarket and knows how to come back home. He doesn’t cross the street until it’s safe to do so and hasn’t lost his sense of direction. He doesn’t head outside in summer clothes in the middle of winter or wears his cashmere sweaters in July. He doesn’t store his socks in the freezer or his underpants in the oven. All of which indicates that Richard doesn’t have dementia, but you could have fooled me.

Our doctor says it’s simply “getting old.” Richard will be 89 in December. His mind and body are wearing down. His cognitive skills are diminishing, along with his memory, judgment and energy. But he’s determined to live as long as he can, as independently as he can. He tells me he loves me every day and thanks me for all I do for him, but he’s too pre-occupied coping with ever-present arthritic pain to pay me much mind. He’s also fully aware of what’s happening and perhaps that’s the hardest thing for him to accept, even harder than accepting the arthritis that has diminished his ability to walk and has spread from his knees up to his hands, elbows and neck.

  No, Richard doesn’t have dementia. I hope he never does. Yes, we have a wonderful doctor whom we can speak to and see, as often as necessary. But I’m left looking out for both of us, and I’m not getting any younger. With each passing year, I find most everything is harder to do. Plus I’m moodier, crankier, less patient and more tired than a year ago, and struggling with the early stages of spinal stenosis and the onset of my own loss of  memory.

  On low-down days, I wonder why Richard has to suffer such pain and stress, and why I have to feel so trapped in my wifely obligations. On high-up days, I remember that I have wonderful family and friends, that I enjoy living in my building, working with my Democratic Club and participating in my writing class. I’m also in good health, have long term health insurance (just in case), and my daughter lives next door. I’m lucky to be able to still count my blessings.

  Most important, I am learning—for my sake well as Richard’s—that contentment with life can be compatible with cognitive diminishment, along with the prerogative to change one’s mind about the care one wants at life’s end.

  Richard has always said he did not want to live with intolerable pain or without an intellectual existence, and recently he’s expressed a wish to die. Yet he still prides himself on being as independent as possible, enjoys rewatching the old classics on TCM, reading the New York Times, eating Progresso’s ChickarinaSoup, and devouring a pint of Ben & Jerry’s butter pecan ice cream. Most important, he still has the presence of mind to reflect on what he wants and has decided that he wants to live.

  Richard is no longer the person he once was. His world has shrunk, as have his desires, his perspective, and his expectations. The changes in him are not of his doing. Life has had a way of calling the shots. But Richard is determined, even as his quality of life diminishes, to deal with the deck of cards he’s been handed. As difficult as that may be, it’s still better than giving in to the unreversible option.

The photo is of Richard, my daughter Christine and her son Evan at his graduation from Bowdoin two years ago.