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Between the Lines: Now I Lay Me Down to Sleep

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Wednesday, July 16, 2014

It was still too dark outside to see very well, but I heard the rain on the gutters. On the way through shed, I grabbed the first rain coat I could find and called the dog. As we stepped outside, I threw the coat over my head. That’s when I realized it was my mom’s coat, an old, blue rain slicker that I’d grabbed from the front hall closet the day I sold her house.

Our morning routine continued as usual—the dog sniffed her way out into the middle of the big field behind the house to do her business and I trailed behind, kept an eye out for wildlife. I walked along not thinking about much of anything, but feeling sort of glum. Then I smelled a familiar odor of cigarette smoke, soap and hair spray coming from the coat. It was the smell of my mother, a smell I’ve known all my life.

I slipped my hands into the pockets of my mother’s coat and found some of what my sister and I had discovered in a lot of her clothes when we were packing up her things and cleaning out her house: a handful of coins, a few empty Nicorette containers and a couple of yellow sticky notes scribbled with random words and phrases. As my mom’s dementia advanced, she began to leave notes and to hide money and cigarettes in all sorts of odd places. While, over the last few years, the meaning of her notes became harder and harder to discern, her handwriting remained as tight and legible as it had always been.

“2009 taxes-book food,” read one of the notes.

As I stood in the field, wondering what “book food” meant, I felt my cell phone vibrate. When I answered, a pleasant young voice asked for me. It was one of the nurses at the nursing home just outside Springfield where my mother went to live last winter.

“This is not an emergency,” the nurse said, a bit of urgency in her tone.

That’s how almost every call from the nursing home begins—except when there are emergencies. For the most part, the calls are about changes in my mother’s medications, most often predicated on changes in her behavior. When she first took up residence in the locked Alzheimer unit at the nursing home—the “transitional and extended care facility providing medical and rehabilitative care”—a week or two might go by without a phone call. But since March, the frequency has increased. Lately, I receive several calls a week.

“I’m just calling to inform you that we’re discontinuing her as-needed dose of Seroquel,” the nurse said, referring to one of the antipsychotic medications the doctors have used to try to curb mom’s agitation and occasional hostility.

I thanked her and we talked for a few minutes about the source of mom’s recent anxiety. The day before, one of mom’s therapists told me that my mother was getting increasingly uncooperative about using her walker. When asked by a member of the staff to please use it, she’d get irritated, sometimes outraged. To try to make mom more compliant, the therapist got her a walker in her favorite color.

“The blue walker really does seem to be helping,” the nurse told me.

During some of my recent visits, and in several recent phone calls from the staff, I’ve learned that my mother is crossing into the final stage of the disease. Part of the reason for the frequency of calls, I suspect, is to prepare me for the end.

To watch my mother steadily lose her identity, her memories, her ability to communicate or control her temper has been a deeply humbling experience. The final stage, I’m told, will be even harder to watch. She’s already lost control of her bladder and will soon lose control of her bowel. She’ll eventually stop recognizing me, stop being able to say hello and goodbye, stop eating, stop swallowing. And then, mercifully, the end will come. How long that might take, particularly for a woman of only 76, nobody dares to guess.

After I finished my phone call with the nurse, I lingered a while in the field. The rain was still coming down, but the sky began to brighten. Gulping a breath of sweet morning air, I thought about the place where my mother will spend her final days. The night before, I’d been talking with a friend who remarked how cruel and unfair it is for anyone to have to die is such a dreary place, where fluorescent lights shine day and night and the smell of urine and disinfectant mixes with the smell of cafeteria food.

A year ago, I couldn’t have agreed with him more. The day we first put my mother in a nursing home, the smell of the place left me depressed for days. This, I thought, wasn’t where she was supposed to end up. She was supposed to die in her sleep, in her own home, after a long and happy life.

But I have changed, and so have my feelings about the place where my mom lives. The smell of urine and disinfectant and cafeteria food no longer depresses me. Instead, I am thankful she’s somewhere safe, somewhere where good people have the resources to provide her with around-the-clock care.

I’ve grown accustomed to the smell of the nursing home, but the smell of mom’s old clothes still tears me apart.•

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