"The Last Dance"

  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.

Edna Abrams, November 2011

Copyright 2012 Elizabeth Abrams Chapman

"Worse Case Scenerio"

weakness tangles within rigidity   

and involuntary movement demands thought and discipline   

requiring repetition and obsession to manage endless days   

even as neurons decay 

 

no hope    

only loss crossed off the calendar day-by-day

  

the fight for dignity fatigues    

an unbearable weight constricting life   

she is Prometheus, bound   

punished for bringing enlightenment    

tortured in mind and body until eternity   

speech struggles against silence   

and suddenly words flee   

what is this?   

confusion adds to the overload   

helplessly caught in disintegration   

too much misplaced   

not enough forgotten   

gone too soon   

or not soon enough   

Copyright 2011 Elizabeth Abrams Chapman

"The Shit Kit"

          As Mom's ability to speak fades more and more, I have to keep aware of her basic needs. Every half hour, I offer her something to drink. Within a two hour period, I'll ply her with a small meal or snack to make certain she keeps her calorie count as high as possible. Reading about Huntington's Disease and its later stages prepared me for this stage. However,  no one wants to talk about other aspects of caregiving. In a way, the secrecy leads the caregiver to feeling inept and incapable of coping with changes that occur within the daily routine. Intellectually, I rationalized that I could help my mother with her toiletry needs. For the past two years, one of us helps her onto the toilet. Eventually, we began helping her wipe herself clean.  This didn't seem that bad, and so I told myself that changing her Depends wouldn't differ from all the diapers I changed as a parent. No one told me, though,  that a "loaded" adult diaper contains--well, a ton of crap.

  Because Mom often cannot speak, communicating to us that she needs to go to the restroom becomes almost impossible. If I keep alert, I'll  notice an acceleration in her movements and begin our version of One-Hundred Questions. 

"Mom, are you thirsty? Would you like a cola?"

She looks away as a way of answering in the negative.

"Are you hungry? Would you like a banana?"

No eye contact again.

"Do you need to use the bathroom?"

She'll grab my hand or reach for her wheel chair, which we shift to the side of the couch now because she obsessively struggles to get into and out of it if we leave it too close to her. 

With haste, I'll bear-hug Mom to transport her to the chair and make a mad dash to the bathroom. We reach our destination with plenty of time to spare. Usually.

In recent weeks, Mom's had accidents because I've left the room to cook a meal or tend to the laundry. She cannot call out to let me know that she desperately needs to use the restroom. I try to check on her frequently, but unfortunately I've had a couple of times where I haven't figured out what she needs in time.

Several days ago, Mom stretched out in her bed to listen to music. I sat at my computer, taking advantage of a break from routine. The baby monitor sits on my desk, but now I don't hear the incessant "ping" of her service bell, nor the repeated calling out, "Liz, Liz, Liz" or even the more fervent, "God damn!" that used to carry across the air. Now, Mom taps on her bed rail. 

"Do you need anything? Would you like to get up?" I now ask when I hear the taps. Many times Mom responds, "Quit it!" And I leave.

A few days ago, I checked on her several times, each time retuning to my room because Mom shook her head or signaled in some way that she didn't want anything. While folding a load of clothes, I noticed a change in the frequency of her tapping. Entering the room, I realized immediately that Mom had soiled herself, her bedspread and sheets, her nightgown--everything. Since she'd has smaller accidents, I keep a roll of trash bags under her bathroom sink and a pile of white washcloths that can withstand bleach dousing and multiple runs through hot water washes. I also keep disposable plastic gloves in one of the vanity drawers. 

These supplies, though, didn't come near to handling this situation. I managed to clean, pull stuff aside, clean more, set aside and clean again until I felt I could transfer Mom into her wheel chair. I swung her into the bathroom, and together we got her onto her shower bench in the tub. I quickly warmed the water and began scrubbing her. 

Then Mom fell.

One second she sat on her bench, and the next she did a forward roll into the tub. I slowed the momentum of her fall by grabbing one arm, but she tumbled and bumped her head on the side.

Panic flooded through me as I called for my son to come help. He assessed the situation and suggested that I get into the tub to check Mom 's neck. She stayed still, her eyes open in wide surprise. I started checking her quickly and realized that she hadn't broken anything. We debated calling 911, and but Mom managed an adamant, "No!" when she heard us discussing that option. So I held her head and neck steady while my son lifted Mom from the tub. He took her to her wheelchair where we covered her with towels so she wouldn't get chilled. I began a thorough examination of Mom while asking, again, if I should call 911 or take her to the ER. She clearly stated this time, "No!"

Mom had no lumps on her head, no sign of bruising anywhere. I think when I grabbed her, I slowed down her fall enough that she sort of thudded to a stop. I got her dressed and we took her into the family room where she wanted to sip some of her soda. While my son sat with her, I called the doctor's office and left a message. Mom's nurse had a scheduled visit in a couple of hours, so I knew someone would give her a thorough examination. We knew to keep her up and to watch for signs of a concussion, but since she was laughing about my panic, we figured her bounce in the tub scared me more than it hurt her.

As a result of this experience, I know that attempting a shower to clean my mother if she has another bowel accident isn't an option. However, I also know I have to clean her up properly if she has a similar experience. The next day, I headed to Target to prepare a kit that I've slid under Mom's bed where it's in easy reach. Inside this tub, I've placed disposable plastic gloves, wipes, paper towels, and plastic garbage sacks. It contains more wash clothes and disposable bed pads. Next to the tub I keep two wash tubs--one to fill with warm sudsy water and one for soiled washcloths. I have everything I need within easy reach to thoroughly clean my mother when the next accident occurs--because we know it will.  We've dubbed it, "The Shit Kit."

Copyright 2012 Elizabeth Abrams Chapman

"Another Step"

         Last week I pulled out the calendar to check any appointments for my mother and found that three different doctors had scheduled her for checks. Two required blood work prior to the visits. Counting quickly, I realized that I would have to drag Mom into and out of the car ten times within a couple of weeks. A year ago, this kind of schedule wouldn’t have given me pause. Not this time around.

         I called the nurse for Mom’s Internist and told her that after each lab run or doctor’s visit, Mom has set-backs. The last few times she hasn’t fully recovered.

         “Is there some service that we could use where a nurse can come to the house to at least draw Mom’s blood?” I asked once I explained my concerns.

         Now, this nurse has always helped me load Mom into the car after her doctor visits. She knew exactly how difficult movement can be for Mom. She paused as she considered my request, and then said, “I think it’s time for us to start your mother on home health care. I’ll take care of the initial paperwork. You’ll get a call from the company we like to use within a couple of days.”

         And so began a flurry of activity. By Monday, a nurse from the home care service went over the professional help offered by their company. Nurses, occupational therapists, physical therapists, and aides for daily living all applied to our needs. The next day, an occupational therapist sat at our table after looking at the accommodations we had in Mom’s bathroom and checking out how she slumped in her wheel chair. She jotted down a list of immediate changes and brainstormed what we’ll need as Huntington’s disease continues its progress.

On Tuesday, a physical therapist stated that Mom’s muscles are better than his other HD patient. He has stretching exercises that he will try with her. Of course, he’ll teach me how to do them so I can continue working with Mom if this service only lasts sixty days. He also showed me a different way to lift Mom that doesn’t strain my arms or back! I hooted and punched the air with my fist after successfully mastering this new maneuver. The PT suggested a different type of toilet seat, too. That arrived yesterday. I haven’t tried using it with Mom. I figure she’s endured enough changes in the past few days. When the PT comes next week, we’ll tackle the toilet.

On Wednesday, the company that has home visiting physicians sent out two nurse practitioners to conduct a full examination on Mom. One of the nurses already sees three other HD patients! Suddenly, I didn’t feel alone in this journey. She asked all of the right questions, made all of the right observations, and I relaxed instantly knowing that she’s been assigned to Mom’s team. These nurses took Mom’s blood while they were here. No more trips to the lab! Using these visiting physicians means Mom will no longer see her Internist, a doctor we’ve trusted and admired. However, his office is the one who made the decision that we needed to make this change. I no longer have to worry about dragging Mom into a doctor’s office for well checks. If she has a cold or bladder infection, someone will come here to her. Even with this first visit, the nurse noticed fluid in one of Mom’s lungs. She ordered a chest x-ray that will be done here. She wrote a prescription, explained to me how to use a nebulizer, and said aspiration is our biggest worry. I figure she saved us another ER visit by her intervention. Immediately, I can see how this type of program could actually reduce costs to programs like Medicare. These nurses or a doctor from the team will automatically visit Mom once a month. Of course, Mom will still have to see her specialists—the neurologist and nephrologist—but if she’s ill, these doctors will come to the rescue. Maybe we’ll make it a year without an ER run.

Thursday brought another nurse to double check Mom’s lungs after she checked Mom’s blood pressure, pulse, oxygen and temperature. She’s been assigned to swing by every week. She has also worked with HD patients and made the suggestion that we needed to thicken all of Mom’s fluids, which we haven’t done yet. Mom aspirated water about a week ago (the cause for her current lung problem). This nurse said Mom looks like she’s drinking fluids fine— sometimes—but not always. The thickener will help on those bad days. Since we have no way of knowing when that happens, we just have to add it to everything. A positive about the thickener is that it does carry a few calories!

Friday brought an aid to help with Mom’s showers. When Mom first moved in, I could manage her showers or baths alone. Gradually, her legs weakened to where David had to be the one to give her baths because he had the strength to lift her out of the tub. Recently, she’s become so rigid that David decided we’d have to go back to having her sit on the shower bench. Her stiffness makes it impossible for one person to get her into the shower alone, so Mom had to wait until David’s return from work to bathe. Now she can get one during the day, when she’s not as fatigued.  

With all of these experts whipping into our household, we’ve realized that many of the devices we purchased for Mom’s use two years ago are no longer the best options. Her wheel chair may need added cushions, if it isn’t replaced altogether. The toilet seat and shower bench both need different models to accommodate her continuing loss of mobility. Three members of the team mentioned changing out Mom’s bed for a hospital bed. I told them we needed to let things settle a little before making that major change. Mom loves her white wicker head board, and I don’t want to force too many modifications on her at one time.

I find that I still fall into bed, exhausted, each evening. However, all of the worries about whether I can handle the next level of Mom’s care haven’t nagged me this week. We no longer face this disease alone.    

 Copyright 2012 Elizabeth Abrams Chapman

"Only Human"

 

      I find it difficult to admit that I found myself yelling at my mother, in total frustration, “Stop spitting out your food!”

         I actually had to leave the room. I stood by the kitchen sink and screamed, shook my fists at Fate, and started crying. Then I swiped my tears with a paper towel, inhaled half-a-dozen shaky breaths, and returned to my mother where, with a façade of calmness, I continued spooning lunch into her mouth, apologizing profusely for losing my temper.

As much as I want my mother’s days to pass with as little stress as possible, I know   that my temper may bubble up when she dumps her Coke on the carpet. I know that when  she insists that she wants to get out of bed, Mom may end up yanking her feet in the opposite direction and pull back against me in unexpectedly forceful resistance as I try to lever her into her wheelchair. I know she may tell me she’s hungry, and then refuse to eat. I know she may squirrel her medications in her cheeks and spit them out into her napkin.

I cannot take on guilt for my failings. The weight I carry as a caregiver taxes me enough. I don’t need to add to the load by picking up bricks of self-reproach because I’m not perfect. I know a professional caregiver would never raise her voice at my mother, but I’m not a professional caregiver.

No one modeled the best way to clip my mother’s finger and toe nails as she pulls away her hand or foot in uncontrollable movement. No one showed me how to bathe her, or wash her hair, or comb it to keep the tangles out. No one modeled the best way to feed her to avoid choking. No one prepared me for how to help her move her bowels. No one trained me for ten to twelve hours shifts often spent in near isolation.

            When other family members offer to give me a break, I never think twice about accepting their help. My husband and son, my sister and brother, have all taken up the duties of a caregiver. They each step into my world and provide the relief I desperately need by the end of a long day or week.

                So if I find myself yelling at my mother, I’m not going to flagellate myself for being less than perfect. I will apologize to her, and I will remind myself that I am only human.

Copyright 2012 Elizabeth Abrams Chapman

"Ice Sculpture"

         Every day, I try to imagine the final months with my mother’s decline. In a way, running through this scenario protects me from drowning in daily grief. I tell myself that she hasn’t entered the finals stages of Huntington’s disease. Things will progress to a different level eventually, so I should feel grateful relief that Mom’s surrender into this disease moves so slowly.

         When trying to describe Mom’s illness, I floundered for the precise metaphor until the other night. My mother is a wonderful, beautiful, unique ice sculpture. Her strength and courage, carved in cold crystalline perfection, gleams. Light reflects and refracts from her surface and shimmers with splendidly unexpected shine. The striking sculpture, though, cannot last. Hour by hour delicate and almost imperceptible changes occur. A first droplet manages to roll unnoticed down her leg. Then another trails down her throat. Before long, a small pool of my mother’s essence forms around her. She slowly shrinks in size—not just her physical body, but the spirit within her fades. Her personality retreats into the core so deeply that we have to search for her heart and soul.

We stand by helplessly as she melts.



Michael Gottschalk/AFP/Getty Images

Copyright 2012 Elizabeth Abrams Chapman

"Mom --Zero. Huntington's Disease-- Four"

 

I don’t want to keep score, but subtle changes remind me daily of my mother’s constant battle with Huntington’s disease. She isn’t winning.

Huntington’s robs Mom of her ability to speak. At first, we noticed slight differences, but now she struggles to answer a yes or no response. In frustration, she’ll mutter, over and over again, “I can’t. . . I can’t. . . I can’t” when I ask a simple question. I begin the guesswork. “Do you want to get up? Do you want to watch TV? Do you need to go to the bathroom? Do you want to eat?” I no longer ask her what she wants for her meals and instead select from the foods I know she can and will eat.

Huntington’s throws Mom back into her uncontrolled dance. For many months, her chorea subsided into a symptom that moved into her day in the late afternoon and vanished within an hour. Now the movements have returned with more force, they last longer, and they burn her calories at an alarming rate. I try to pump food into her as often as possible, but she’s dropping weight. Her hands and fingers look gnarled. Her knees protrude over calves that hang with loose flesh. When I help Mom get into her bed, my hands skim across her hips, and I now feel her bones.

In June, Mom could still eat out!

Huntington’s forces Mom into rigidity. A couple of weeks ago, Mom sat at the table and fed herself each meal. Now I sit next to her on the couch and spoon her meals into her. She’s able to manipulate some foods, though, on her own. I make certain she has brownies, cookies, or small pieces of chocolate in her tin. That way she can nibble on tidbits all day long. I realized the other day that her ability to suck on her straw diminishes after a few minutes. Now I help hold the lidded mug so her arm and hand won’t fatigue. I watch as her tongue flounders for control as it tires. I started adding a thickener to her liquids yesterday to help with her swallowing. I’ve begun a new routine to make certain Mom’s not getting dehydrated. I have drinks in both her bedroom and the family room. Whenever she gets into her wheelchair, I make her take a few sips. Before she gets to move out of her wheelchair, she takes a few more swigs.

Huntington’s saps Mom’s energy. Mom rarely takes naps. Usually, she’s up by six AM for her medication and a Boost. Up until a couple of weeks ago, she’d eat her first breakfast by eight o’clock and request something else to eat every two hours. Now, Mom returns to bed after she takes her medications and sleeps for another hour or two. She has started taking naps in the early afternoon. I think she’s storing up energy for all of the thrashing she’ll do when her chorea hits by three.

And so over the past few weeks, Huntington’s disease hit more runs and outscored Mom. This gradual diminishment may continue for a very long time. If I alter my playing strategy, Mom may regain some of her weight. With luck, she’ll follow her usual pattern and recover some of her losses.   

Copyright 2012 Elizabeth Abrams Chapman

        

" . . . And Dying"

         I never intended to write about death and dying. I thought this topic could stay bound within the contexts of the current social psychological theorists, but recently I’ve found myself examining my feelings in dealing with my mother’s terminal illness.

I studied Kübler-Ross’s theory, of course, when I worked on my degree in Psychology. Effortlessly, I can recount her five stages of grief. My life over the last few years anecdotally supports much of what she wrote. I know, too, about theories on resilience. Although I haven’t consciously researched the topic of grief, I’ve definitely lived it. As I skim the endless variety of topics available to families dealing with Huntington’s disease, dealing with the last stages of this disorder surfaces in discussions.

My faith rests totally in the strength of the human mind, the spirit of community, the cycle of life. Whenever living with Mom’s Huntington’s disease pulls me under, I’ve reached out to my husband, my son, my sister, and my brother. They yank me back into the light when I feel surrounded by darkness. I have several friends, some in distant cities, who offer comfort and support through their kindness and concern.

And so we deal with dying like we deal with living. We admit our shortcomings during those endless nights and horrendous days. We don’t deny our anger and bitterness as illness chips away Mom in larger and larger chunks. We let sorrow enter our home and sit upon the sofa on Saturday mornings.

 We take each day as it comes. We linger over the good moments. We sip and savor giggles and smiles. Words like sacrifice, care, generosity, family and love take on deeper and more honest meanings as they become part of our daily life.  

Copyright 2012 Elizabeth Abrams Chapman

"ER"

 

         About two weeks ago, my mother’s internist decided to add Zoloft to her daily cocktail of medications in an attempt to alleviate her frequent bouts of crying and thoughts of dying. I quickly reminded him that he’d tried prescribing Cymbalta for her a couple of summers ago with disastrous results. He assured me that Mom would be fine with this new drug, wrote the prescription, and sent us on our way.

         That Monday, Mom took her first 25 mg. dose, and she did seem less tense in the afternoon. On Tuesday, she didn’t cry even once during the day. However, that night she had the worse episode of insomnia I’ve ever witnessed! She not only kicked her feet back and forth, but also continually threw her pillow and blankets to the floor. She would pull herself into a sitting position by grabbing ahold of her wheelchair, and then fling herself back onto the bed. This went on hour after hour. Finally, after receiving her morning doses of her medications, she fell asleep.

         When Mom woke up around noon on Wednesday, she couldn’t speak at all. She could only manage to grunt in response to my questions. I tried to feed her by spooning scrambled eggs into her mouth. She clumsily shoved the food around, her tongue lacked coordination. She couldn’t swallow the soft food. Once I noticed she couldn’t even suck on a straw, alarms sounded. I began making calls to Mom’s internist—leaving messages on the voice mail because it was their lunch hour. Each time I called, I added another symptom to Mom’s growing list. Finally, I reached someone and was told to take Mom to the ER right away.

         By this time, her body had grown completely rigid. My son and I muscled Mom into the car and drove to our neighborhood hospital. She’s already in their system, so it didn’t take long to get the preliminary paperwork done.

         “As soon as we have a bed ready in the ER, we’ll get your mother back. It should only take a few minutes.” I felt a little calmer with the assurance that Mom would be bumped ahead of the other patients in the waiting room.

         Then a teenaged girl rushed in, followed slowly by a young man on crutches. The bandages on his foot couldn’t begin to sop up the flow of blood that gushed from him. A river of blood trailed from the sliding glass doors, across the floor, and to the nurses’ station. Someone rushed up with a wheelchair, and the blood pool continued to grow under the chair. Two nurses dashed to his aide, and the security guard fetched a custodian, who calmly began cleaning the area.

         “I’m sorry,” a nurse came over to us, “we’ll see your mother as soon as the area is cleaned.”

         So the promise of seeing my mother immediately ended up taking about forty-five minutes.

         Eventually, we wheeled Mom back into a room where the usual ER triage began. Blood pressure, heart rate, oxygen level, EKG, blood work all started quickly at that point. The doctor ordered a CT scan, x-rays for her lungs, and a urine test looking for any reason for Mom’s condition.

         I think I asked everyone I saw, “Could this be a reaction to Zoloft? She just started taking it. Could she be having some kind of reaction to it?”

         No one wanted to make a committal to anything until every test returned—all with normal results.

        Finally, the doctor came to talk to us. To my question about the Zoloft, he answered, “I’ve never seen anyone react to Zoloft in this way. I think you need to talk to your mother’s doctor tomorrow.” However, by this time it had been twelve hours since Mom’s dose, and she had regained her ability to answer simple questions.

         “Do I continue to give her the drug?” I asked.

         “That will be up to her doctor.”

       I made one of my executive decisions that I wouldn’t give Mom another dose without having a long conversation with both Mom’s internist and her neurologist.

        On Thursday morning, I called the internist as soon as his office opened. He returned my message quickly and said that he didn’t think the Zoloft had anything to do with Mom’s condition the previous day. Because I expressed so much concern, he agreed to have the dosage cut in half “for a few days.” My gut screamed that it was too much of a coincidence that Mom had this horrible HD incident within three doses of a new medication, but I couldn’t seem to get anyone else to make the connection! That is, not until Mom’s neurologist called.

         “Don’t put her back on the Zoloft. She’s having an overdose reaction,” he warned.

        “Both Mom’s internist and the ER doctor seemed to think it was okay, but I kept feeling that something wasn’t right,” I told him.

      “For most people, adding Zoloft wouldn’t have this affect,” her neurologist explained. “But for your mother, and the way HD’s hit her brain—along with the other medications I already have her taking, well—it’s good that you stopped the dose. Bring her in on Monday so I can check her over.”

         Exhaustion forced Mom into a deep sleep almost all of Thursday, and I fretted because she didn’t eat any food or drink any fluids for another day. On Friday, she could drink and eat again, but I had to feed her and hold her mug for her. During the weekend, Mom slowly regained more of her ability to move and to speak. By the time her neurologist saw her on the following Monday, she was speaking in short phrases again and could raise her arms up to shoulder level briefly.  

         Recovery comes slowly, though. Before the incident with Zoloft, Mom occasionally couldn’t remember me or David, especially after she had a round of insomnia. Now it’s almost daily that she’ll ask one of us who we are. She’s fixated on wanting me to take her home, forgetting that she’s lived here for eighteen months. The optimist in me clings to the hope that she’ll get more recovery as each day passes. My sister just left after helping us for the past four days, and Mom seemed to improve a little. Maybe she’ll be closer to normal once my brother arrives on this coming Friday.

HD brain on left. Normal brain on right

Copyright 2012 Elizabeth Abrams Chapman

"The Difference of a Day"

         It amazes me how much can change in a short period of time. Adjusting my mother’s melatonin dosage a couple of days ago made an immediate improvement in her thinking. Yesterday, she woke up and asked to get dressed right away. As I pulled on a flowered top, Mom wanted to know the time of her doctor’s appointment.

         “Oh, Mom, that’s not until Monday. Today’s Friday. Do you still want to get dressed? I have some errands to run today, and if you want to you can go with me.”

         “Yes!”

         Before we left the house, Mom had to select a hat to wear from her favorites. I suggested the Spurs cap because they could use her extra luck after their loss. She debated over the summer lace hat I brought back from Ireland, but her sporty black-and-white checkered hat won.

         A couple of days ago, Mom didn’t recognize me. She kept begging me to take her “home.” She said she didn’t know or trust me. Yesterday, she commented as we ran our errands that she wanted to go by the assisted living center where she lived for two years.

         “I want to stop for a cup of tea,” she insisted as we drove by the place.

         I completed my task quickly and pulled into the driveway of Esplanade Gardens. Mom swung her feet to the concrete before I had her wheelchair in place.

         As soon as we entered, we encountered Mom’s favorite aide, Betty. The activities director took Mom into the exercise room to visit with several residents while I moved the car into a parking slot. By the time I returned, Mom was laughing at something JoAnne, one of the employees who worked in the dining room, had said as she served Mom her hot cup of tea. Robert, the head chef, returned from his break to visit a few minutes. Eventually, Mom’s other favorite aide, Christina, sat down for a long chat.

         A couple of days ago, my mother couldn’t recognize me. Now, she smiled broadly in recognition of men and women she hadn’t seen in at least a year.

         Huntington’s disease humbles me. It makes me grab ahold of each good day and recognize the pricelessness of a smile that touches the eyes, of laughter that bubbles up and over.  

 Copyright 2012 Elizabeth Abrams Chapman

"A Melatonin NIghtmare"

         Sleep escapes many people who suffer from Huntington’s disease. A few years ago, Mom only needed a little Lexapro and Lorazepam to take the edge off of her depression and anxiety and allow her to have a full night’s rest. Eventually, Mom’s neurologist dropped the Lexapro and added Neurontin and Trazodone in low doses to her daily mix. About eight months ago, Mom’s sleep patterns began to shift. She started staying awake hour after hour.

         At first, these late nights didn’t affect Mom’s overall behavior or personality. She spent the day after her insomnia attacks actually awake. While David and I endured sleep deprivation, Mom seemed to carry out her normal daily routine after a sleepless night. The occasional wakeful night slowly shifted into a pattern of Mom staying awake four or five nights out of seven. A quick call to one of her doctors meant a change in the dose of one of the medications. Life went on.

         In January, the neurologist adjusted Mom’s Trazodone for the second time. Then a couple of months later we upped her night dosage to 100 mg. During the last couple of weeks, insomnia invaded Mom’s bedroom yet again. With these last bouts of sleeplessness have come changes in Mom’s personality. The longer she goes without sleep, the meaner she becomes. Her tongue, often tied by HD during the day, loosens during these endless nights. Sometimes her anger and frustration brings along paranoia. These changes frighten me because I know her disease wins on these nights.

         After a bad round of insomnia last week, I searched different HD sites to compare Mom’s experiences with other’s fighting this disease. It didn’t take me long to realize that wakefulness and restlessness plagues almost everyone with HD. Then I stumbled upon references to using melatonin. I gave Mom’s neurologist yet another call to ask about this OTC option.

         “I was going to suggest melatonin to you,” he said when he returned my call. “I’m going to let you experiment with the dosage you use. It’ll take a couple of weeks for you to find the right amount, but call me if she doesn’t respond at all. Actually, call me in two weeks no matter what.”

         Running errands at The Forum, I swung by Target to see if the store carried melatonin. Sure enough—one single bottle remained on the shelf for a 5 mg dosage.

         The first night Mom had no change in her sleep. After that, she zonked out and stayed asleep all night long. She also took naps during the first few days, something she rarely does unless she’s using Benadryl. David commented first on the fact that Mom didn’t recognize him the other morning. He’s recently shaved off his beard and mustache, so we decided her confusion wasn’t anything to worry about.

         The nightmare began suddenly today, five days into taking the melatonin. Mom woke up after a full night of sleep with more energy than I’ve seen with her in  days. She fed herself eggs and later asked for pancakes, which she also managed to eat on her own. She chatted with me about the episode of The Dick Van Dyke Show since this installment showcased both Van Dyke brothers, who went to school with Mom. Then after lunch Mom’s attitude suddenly changed as I helped her in the bathroom. She became suddenly angry and told me I was “useless.” Within minutes, she said she didn’t know who I was and began begging me to take her “home.” She asked for the “other orderly” because she didn’t know or trust me.

         As soon as I had her settled for a few minutes, I conducted an online search and learned that some people get confused if their melatonin levels are too high. Once David gets home, I’ll run to Walgreens to pick up a lower dosage. We’ll start the slow process of discovering the level that will help her sleep all night while still keeping her lucid. I understand now why her neurologist said we may have to make adjustments for a couple of weeks. I just hope that this nightmare ends soon.     

  Copyright 2012 Elizabeth Abrams Chapman