No Saints around Here: A Caregiver’s Days

Home, Alone

128 HOME, ALONE November 20 On this late autumn afternoon, a cold wind was whipping leaves from the trees. Under a low gray sky, a faint drizzle dripped steadily on the front steps. Our back door had just closed behind James and aide Martha, who was taking him to the dentist for a routine cleaning. I would have two hours alone in the house. Two hours. In my house. All by myself. The last time this happened was another dental appointment—four months earlier . Because of James’s increasing fatigue, fits of muscle weakness, and uncertain mental focus, he can no longer go out for lunch or any other prolonged excursion. In fact, I didn’t know yet that James would return in two hours so depleted he would sleep half the next day, and I would realize that even James’s trips to the dentist were now over. All I knew this autumn afternoon was that I had been given two quiet, rain-streaked hours. A treasured gift. Last year, soon after my friend Dolores’s husband died after a massive stroke, she told me, “The worst part is coming home to the empty house. I can’t bear it. I put it off as long as I can. When I finally open the door, I break down. Everything, every room, our home, was ours. We created it all together. I just sink onto the sofa and start to cry. I cry for such a long time. You can’t believe how awful it is.” Some nights, Dolores told me, she packed an home, alone 129 overnight bag and went to stay with her married daughter. “But then,” she added, looking beyond me, “I have to go home.” So I know that my longing to have the house to myself— maybe for a whole day? two days?—holds the ominous promise implied in the adage “Be careful what you wish for. You may get it.” That is the dark conundrum of caregiving: you want, and you don’t want. I have lived alone for only a few months of my entire life. After a dorm in college, then a graduate-school dorm, and finally one semester with a girlfriend in a shared apartment, I married my first husband. During that rocky marriage, we briefly separated several times. He left, I stayed. I remember how frightened I was at night, alone in an echoing house. Returning home in the day, I felt uneasy as I turned my key in the lock. During one reconciliation, I got pregnant. After we divorced, I had our daughter, a lively toddler, in my house, so I was not really alone. When she was a teenager, I met and married James. I sometimes try to imagine our house without James in it. I can’t. Like Dolores and her husband, James and I furnished, arranged, and lived in this house as a haven we both loved. We liked being together so much that neither of us wanted to be away from the other for any extended period. Yet my days had spaces I kept for myself. Until Parkinson’s bound him too tightly, James, even semiretired, was usually gone for many hours, settling into his old desk at his office or enjoying lunch with friends. I happily welcomed him home. Dolores has warned me: somewhere ahead, I have very hard lessons to learn. At this time, even in our ample house, I cannot find a room where I feel free. I have no privacy. At any moment I may hear a tap on the door from a caregiver:“Where is James’s new rash ointment ?” “Do you think I can take James for a short walk?” “James wants to find his book about tugboats [or box of snapshots, or postcard from an old friend, or file of drawings].” Infuriatingly, I cannot even shut the door of any room where home, alone 130 I am trying to hide. We own three cats. I have in fact spent all my life with one or two cats, but these days, perhaps because none of our current trio is a lap cat, I have often wished someone— a sweet, gentle old lady?—would swoop into our house and carry them all off to a loving home where they could live out their remaining years with the devoted attention they deserve. (Right now they don’t get it...