On November 4th, I found myself sitting outside the door of my mother's hospital door, weeping. The nurse huddled next to me, looping her arm around me in sympathy as I cried. I couldn't get my mother to eat, or drink, or take medication. Whenever anyone placed something in her mouth, she pushed it out with her tongue, or let it sit with a slack jaw until it spilled from her lips in a nasty pool of drool. My mother's sudden inability to swallow anything caught me unprepared. The week before, she ate her pancakes swimming in syrup, drank her hot chocolate Boost laced with Carnation Instant Breakfast. She devoured a bowl of homemade split pea soup loaded with onion and bacon, and asked for her favorite, spaghetti. Within a period of a few days, Mom's tongue insisted on doing the opposite of what she needed in order to survive. Anything placed in her mouth got uncontrollably shoved right back out.
When I called to have the home health care nurse check Mom because her fluid intake dropped so much within a twelve hour period, the nurse suggested that Mom may have had a urinary track infection. She'd had other patients exhibit confusion and passivity along with the swallowing problem. We began enticing Mom with cranberry juice, made certain she drank more water, and watched her carefully. By the next day, Mom only drank twelve ounces instead of her usual thirty-two. She barely ate any food and asked often to go "home." When she needed to use the restroom around 11 o'clock that evening, I noticed her hands felt cold, her legs looked shrunken. We immediately tried to get her to sip some water, but she pushed her tongue against the straw instead of drawing the tube into her mouth. Finally, we tried using a syringe to place fluid into her mouth. She let it pool loosely until it trickled from the corner of her lips. Alarms rang. We decided not to wait for nurse's visit scheduled for first thing the next morning. Instead, we warmed Mom in her favorite blue robe and rushed her to the ER once again.
Hospital time matches nothing in the outside world. Every minute passes with excruciating slowness. In the four hours that it took for the nurses and doctor to run tests and process everything for Mom, she'd shrunk into a withered prune. The skin on her hands creased into ridges. The pads of her fingertips changed from smooth to wrinkled surfaces. Her hands lost all heat, and when I held one I thought, "She's turning to ice." Mom's legs kicked about in anxiety as her chorea surfaced with the stress of the situation. I watched the skin on her shins pull tight over her bones while her calves puckered. Whatever fluid her body contained pooled toward her center, leaving her extremities cold as death. Eventually, an IV relieved Mom's dehydration. By 2 PM, her hands and feet thawed to room temperature. Her sunken cheeks still looked skeletal, but some color splashed across her face. By the second IV and round of antibiotics, Mom could eat a few spoons of the pureed pork chops and mashed potatoes the dietitian provided for Mom's lunch. Medication still resulted in a battle, though. The nurses left it up to me to administer the pills because Mom wouldn't or couldn't cooperate with them. This troubled all of us, and so the nurses contacted the on duty doctor and requested Mom have a swallowing evaluation performed as soon as possible. Within the hour, the specialist wheeled Mom down to XRAY for the test. The specialist explained to me that one of two possibilities appeared to be happening with Mom. In the first scenario, Mom's slightly elevated white blood cell count could indicate a urinary track infection in it's early stages. She proposed that Mom's HD made her susceptible to more confusion and physical symptoms like the swallowing problem. If that was the case, once Mom rehydrated and responded to the antibiotic treatment, she should return to her baseline swallowing--pills with foods like pudding, pureed meats and veggies, pasta cut in small pieces. I clung to her hopeful suggestion because I knew all too well the second option the specialist would offer to me. Mom's HD had shifted into a new level. Her frequent tendency to do the opposite from what she wanted (like pulling back when she wanted to move foreword, or not being able to move at all when she's trying to shift out of her wheelchair) could now be affecting her ability to take something into her mouth, maneuver her tongue to pushing the food back into the throat and then swallowing. She said Mom either couldn't or wouldn't move her food in any direction but forward and out of her mouth. The woman asked if we'd discussed tube feeding as an option with Mom. I assured her that we had, and that Mom had made it clear to everyone that intubation was not an option for her.
We have lived with the dance of Huntington's Disease for ten years, the slow and inevitable death that carved away aspects of my mother's physical abilities along with her personality. Most days, her spirit stayed strong, but clouds of vacant thoughts sometimes blurred her eyes, and for short periods of time, Mom vanished. During the end of October, she disappeared for longer and longer periods. In her place were empty green eyes that disengaged by looking into the corners of the family room. When the hospital suggested we set up hospice, I knew that our lives would change once again.
In the weeks that followed, Mom rallied several times. A couple of mornings, early on, she ate an entire pancake or scrambled eggs. When she couldn't manage to suck through a straw, we spirited water, colas and Boost into her mouth using a syringe. A week after Mom's hospitalization, she began spending her entire day in her bed. We moved a television into the room and a comfortable rocking chair for me to use. Days strung together with hours viewing Mom's favorite television shows. I'd search Netflix every evening to line up possible movies for the following day. The little amounts of food Mom ate during those first days dropped off rapidly. Each day she ate half of what she'd eaten the previous meal. She never regained her ability to draw from a straw, and so one of us tempted her with fluids a syringe-full at a time. The hospice nurses explained that we fed Mom more for our own emotional needs, and that eventually her body would let us know that she wouldn't take any more food. The last thing I fed my mother was a bowl of ice cream--the food of her nightly ritual for most of her adult life. One afternoon she ate about half a bowl, but by that evening she refused to swallow any. Nothing enticed her to eat after that point, and I feared she would aspirate something if I pushed too hard. Eventually, Mom followed the same pattern with fluids. Weakness swathed her, and I became uncertain that she'd make it to my brother's promised Thanksgiving visit, but Mom rallied the moment he walked into her room. She smiled and held his hand, pushing her energy forward as he sat and talked to her. When he left the next day, she slept for hours, waking up only for minute amounts of water.
The nurses assured us repeatedly that Mom felt no pain. They explained that the brain shuts down pain receptors as the body starves. I know, without a doubt, that this was true as Mom slowly melted away. I reached out to close friends and family members during those last days, I relied heavily upon the hospice nurses, social worker, and aid who energized me with their genuine compassion for our family. I found myself longing to sit down to write and somehow find control over everything.
Yesterday, I put Sleepless in Seattle on the television, pulled my red fleece blanket up to my chin, and stroked Mom's brow as she slept for a second day in the row. Her breathing, slow and steady in slumber all day long, changed into a rapid pant. I called David into the room when it didn't stop and had him sit with Mom while I called the nurse. She suggested I start the morphine and said she'd be right over. An hour later, Mom's rapid breathing took on a little gurgle. When the nurse arrived, she administered a second drug and another dose of morphine. She examined Mom, told me to call family to get them here, and went over instructions for the rest of the evening. By the time she left, Mom's breathing rate had nearly returned to normal, but that only lasted a matter of minutes.
And so we began the last dance with my mother.
In Mom's dreams, she always walked. I like to think she's walking now, hiking up one of the crooked paths behind the cabin. I imagine her twirling in circles, a graceful dance unmarred by Huntington's.
Copyright 2012 Elizabeth Abrams Chapman