"Be Still"

 

Loss and grief wrap around my spirit
They drag my steps, pull me into silence,
Hone my thoughts down to brittle bits of despair
Loss and grief echo through my dreams
They invade my nights, snap me into vigilance,
Pace with me from room to room
Loss and grief whittle away my heart
They cause my tears, push me into darkness,
Force my days into protective stillness 

 

Copyright 2025 Elizabeth Abrams Chapman

 

 

 

"Stay In Today"

          In the past, I loved my ability to plan ahead. Every week at work, I’d prepare a list of goals:  Grade essays (two class sets per day), file student work, call dj for dance, reorganize closet. My list making continued at home. I memorized the grocery store, making my list in order so I could swing through the aisles at warp speed. I jotted down goals for paying off debts and objectives for dropping weight. I projected into the future with a six month, one year, and five year plan. Sometimes, with my vision so focused upon tomorrow, I think I missed some of the delights of the present.

         The turn my life has taken this last fifteen months means I’ve faced the challenge of changing my mindset. Each morning I write down the date in my journal, and then my major goal:  STAY IN TODAY.

         On the surface, this seems a simple target, but for me it’s horrendously difficult. On the days I do well, I find I have infinite patience. I don’t pressure myself under the weight of all of the unknowns of tomorrow. Instead, I focus on stripping the beds, flipping Mom’s pancakes, brushing the dogs’ teeth, and planning dinner. I look at the bills and pay whatever’s in the stack and avoid the worry about what may destroy our budget six months down the road. I doggedly place one foot in front of the other and give myself a mental shake whenever I start to slip beyond today

         When I successfully STAY IN TODAY, I relax. I take a moment to listen to bird call or appreciate the sun as it dapples the back yard. I linger over words when I write. I laugh aloud at Everybody Loves Raymond even if I’ve seen the episode one-hundred times because my mother giggles the antics of Ray. I remember to say, “I love you” and “Thank you” and to cherish the unending support I get from my husband.

         Old habits, though, break down slowly. Last night my mind flitted into tomorrow’s possibilities, and insomnia hit. I’d forgotten that when I delve into “what ifs” I find sleep difficult. My imagination created scenarios of events unfolding over which I’ve limited control. It wove tension into my stomach and pounded uncertainty into my head. I found myself wondering why my inventiveness at night turns to the darkest paths of pessimism. Eventually, I envisioned all of the troubles that may loom ahead, and one-by-one I placed them into a bright yellow box. I sealed the lid tightly and tucked it up on a shelf. Sleep embraced me almost immediately

         And so I find myself feeling sluggish this morning. I’m a little peeved with myself at falling back into my old pattern because trying to project into tomorrow holds too many unknowns and wastes energy that I need now. When I picked up my journal, I neatly placed in the date and bold block letters: STAY IN TODAY!  



I'm learning to "Stop and smell the roses!"
First blossom this year in our back yard

          

Copyright 2012 Elizabeth Abrams Chapman

"New Voyages"

 

David Chapman--artist

         I never want to spend my life fretting over the words never said, or the acts never completed. The changes in our lives during this last year bring home to me the importance of giving our best to those we love. Sometimes, I get so caught up in the minutiae of a situation that I bog everyone else down. “The Big Picture” always calls for taking risks and believing with heart over head. That outlook proves difficult for my often straight column approach to life, but whenever I’ve chosen my heart, I’ve never gone in the wrong direction. Whenever I push away my heart, anxiety suffocates me. Taking a breath, eating a meal, and sleeping at night all become impossible.

My head analysis tells me the “right” decisions, the cautious choices that assure safe passage across rough seas. My head won’t even weigh anchor if the voyage looks too dangerous.  The head must have life boats in tip-top condition. It makes certain there are enough jackets available for unexpected passengers. It plots my route and stays true to my course. But no matter how carefully my head plans for every exigency, a tidal wave broadsides me, flips my vessel over, and makes life boats and life jackets useless.

         My head, you see, doesn’t calculate for the totally unpredictable event. It cannot. That’s the heart’s job. The heart latches onto dreams and nightmares. The heart foresees the tsunami and still sets sail. The heart accepts risk because life’s random. That capriciousness doesn’t dissuade the heart. The heart believes.

         In the rough seas I now traverse, my heart speaks strongly to me. Believe. Believe. Believe. And so I trust my decisions. The moment I listen to the murmuring song of my heart, the decisions I must make ring true and clear. The head will step forward eventually. It will find the means of making the dreams a reality. By singing along with the heart, the voyage will prove challenging, but not impossible.    

Copyright 2011 Elizabeth Abrams Chapman             

"Insomnia"

He inters uninvited, a shadow cast across my bed   
He lurks just beyond my vision   
His onion breath jars me to alertness, yanking me out of sleep   
He lays heavy-limbed next to me   
He pins me under his arm, making it impossible to breathe   
His bristled beard rubs my shoulder raw   
In panic, I pull away   
I kick my feet free of the binding blankets   
I elbow him in the chest, desperate for escape   
Heart racing, I bolt from the bed to see him sneer in pleasure   
His victory rests in my wakefulness   
He silently slips from my bed when I turn on the light   
In triumph, he vanishes, a shadow in the night   

David Chapman-artist

Copyright 2011 Elizabeth Abrams Chapman

"Earl Grey--Hot"

          When summer sweated and bubbled the blacktop, in true Texan style, I iced the potion and gulped gallons of it. The flavors, like a wildflower bouquet, changed with my mood. Raspberry for lazy afternoons under the tree, and chamomile for restless nights after downing too much hot sauce. I used sun tea, in honor of Apollo, as an offering. Oolong and Darjeeling, with their heavier tones, stayed up with me through long summer nights.

Then a cold front drove down from the north, a dervish spinning among the tree limbs, bringing steel skies. Autumn’s warmth retreated and retrenched under the assault, weeping as she withdrew. The explosion of energy left a trail of loss and sorrow. Yet, I sat in safety, hands warmed by the cup I embraced. Steam fogged my vision when I raised the golden liquid to sip. My anticipation of its sweetness steeped me in pleasure.

I practiced my ritual, altered by my daily needs. Today, traces of sugar laced through the hinted flavor. Yesterday, dollops of honey hung suspended in the hot tisane. Tomorrow may lead to a deep brew of Earl Grey—hot, and cut with milk and lemon.

Copyright 2011 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

"Stop to Smell the Roses"

 

Koi has the right idea!

         I took for granted the little pleasures of life. Don’t we all? Before my mother’s disease invaded our daily routine, I spent hours out in the back yard watering the flowers. I’d sit with journal and pen or the latest best seller and piddle endlessly on my tree swing. I’d chat with my neighbors for half an hour or more by the mailbox or over the fence. I could jump into the car whenever I wanted, run to the store or a mall, or grab a bite to eat. In the evenings, I’d watch television, listen to music, or talk on the phone with friends without a single interruption. If a friend called and invited me out, I didn’t think twice about heading out the door. If someone dropped in unexpectedly, I knew I could have a block of time to visit without stopping to see to someone else’s needs.

         Huntington’s Disease robs the entire family of so many little pleasures. We are now my mother’s legs and often her hands. She’s still able to feed herself, but pulling the covers up when she’s chilled at night or fixing her pillow “just right” challenges her now. Taking a walk around the block requires a major pep rally to innervate Mom into the desire to leave the house. Her weekly trips to favorite restaurants have diminished to a once-a-month outing. If she doesn’t feel up to strain of a car trip, she may forego the excursion and opt for us to bring take-out to her. Recently, we’ve seen more personality changes in Mom. When her insomnia hits, she angers easily. During these endless nights, if one of us doesn’t use a cheerful tone of voice with a smile on our face, she’ll go into a tirade about us “neglecting” her even though we’ve stayed up with her hour after hour. Her brain, desperate for rest, misfires into obsessive compulsive actions, paranoia, and pure meanness. I refuse to feel guilty because I’ve lost my temper at two in the morning and yelled at my mother to go to sleep.       

         During the last three years I taught, I often went into tirades at misbehaving students. Sometimes, I may have “acted” with more anger than I really felt, but I’ll admit that my temper flared frequently. Since I’ve left that horrible teaching situation, I’ve regained my sense of balance. I rarely lose my temper. On days where Mom’s needs seem endless, I mutter “patience, patience, patience” and I remind myself that it’s easier to be selfless for someone you love.

I find myself resenting the loss of my time—and my freedom to do what I want, when I want. I do not resent my mother, but I hate the disease that takes, and takes, and takes. So some days I try to venture out into my gardens, and I take a moment to appreciate the beauty and little pleasures so HD doesn't win.

One rose out back

Copyright 2012 Elizabeth Abrams Chapman

"Into the Night"

    Occasionally, my mother cannot sleep at night. This means no one gets to sleep. We keep a baby monitor in her room, so as she spins restlessly in her bed, we hear her clearly.

When Mom’s symptoms of Huntington’s disease first began, she’d uncontrollably repeat, “Oh man, oh man, oh man,” whenever she experienced a little stress or anxiety. I don’t think she even knew she’d go through this verbal litany. As my mother’s agitation grew, so did the urgency of her words. “Oh man” altered into “God damn! God damn! God damn!” We had to explain this hierarchy of declarations to her aids when she resided in assisted living because one aid grew rude and abrupt at Mom’s utterances. For someone as gentle natured as my mother, her “God damn!” meant she’d hit her limit in some way. Now, as Mom slips into the last stages of her disease, her ability to carry on conversations comes and goes. Some days, she’ll chat constantly, her words easy for me to understand. Other days, she barely utters a syllable throughout the day, except for her two phrases, my easy gauge of her distress levels.

         Last night, Mom somehow turned around her hours. She asked for a fried egg around six o’clock. She demanded that we change her out of her nightgown and dress her in one of her outfits about an hour later. By 9:30, David asked her if she knew it was nighttime, not morning. With her mind playing this time trick, she struggled to get up to watch her television shows until two in the morning. Whenever I went back to her bedroom, she’d complain that she was cold as she kicked off her covers; she’d whine that she was tired as she grabbed my hands to pull her from the bed.

         “Mom, you need to go to sleep!” received angry pouts from her at first. One time when I tried to straighten her covers and get her back into bed, she managed to slap me across the face.

         This is Huntington’s disease.

         I remember my mother spanking me only once in my life. I saw her raise her hand once and strike my sister when her teenaged tongue sliced out a rude comment. I know my brother received a spanking for hiding his progress reports and low grades in his middle school locker. Physical punishment did not occur in our household. I severed a relationship with a brother-in-law who left bruises on my arms from trying to pull me out of a car. My parents raised me that if someone raises a hand to you in anger, get out of that relationship. Period.

         So Mom’s striking out at me reveals one more “loss” that we’ve endured through this battle against this monster. We tiptoed around each other today with neither one of us speaking about her eruption of anger and frustration. I’d like to think that this won’t happen again, but I’ve read enough about the later stages of Huntington’s to know that as the brain changes her personality will change, too.

         Every day when I pick up my journal, I follow the date by writing my two main goals for survival: Stay in Today, Patience. I know, though, that no matter how much I try to smooth out the challenges of my mother’s days (or nights), her disease is winning. I often fail in my efforts to stay focused on the moment. I definitely fail when it comes to patience when our struggle unwinds throughout the day and into the night.   

Copyright 2012 Elizabeth Abrams Chapman

 

"Insomnia"

He inters uninvited, a shadow cast across my bed   

He lurks just beyond my vision   

His onion breath jars me to alertness, yanking me out of sleep   

He lays heavy-limbed next to me   

He pins me under his arm, making it impossible to breathe   

His bristled beard rubs my shoulder raw   

In panic, I pull away   

I kick my feet free of the binding blankets   

I elbow him in the chest, desperate for escape   

Heart racing, I bolt from the bed to see him sneer in pleasure   

His victory rests in my wakefulness   

He silently slips from my bed when I turn on the light   

In triumph, he vanishes, a shadow in the night   

Copyright 2011 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

“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

“Another Round of Up and Down”

         Huntington’s Disease impacts people differently. The more I read, the more I realize that this disease affected Mom much earlier than I’d first thought. For many years, she complained about having “Blue Days.”  Never bad enough or frequent enough to seek treatment, Mom would call sometimes near tears. These lonely days would end quickly, and I internalized the lesson that mild depression “just happens” and you weather through it. Looking back, I believe these downturns may have signaled the early changes HD brings into a person’s life.

         By the time my mother was in her sixties, she began complaining about never going anywhere or doing anything. My father would plan some kind of activity or outing, and my mother would shoot the idea down for some nebulous reason. Dad’s frustration resulted in him giving up on suggesting things they could do together, and Mom grumbled even more about being stuck at home. When they bought the land in the Hill Country, Mom’s enthusiasm returned. She loved planning and tackling each project for the cabin.

         Around this time, her first motor symptoms emerged. While she watched television or sat in the car, Mom would shuffle her feet restlessly. I asked her many times if she could stop, and she’d reply, “Of course. I’m just exercising my legs and ankles.” Then she’d rotate her feet around deliberately for a moment or two and settle down. Sometimes, Mom would suffer from bouts of anxiety. These spells of worry didn’t last long, and again she never even mentioned them to her doctor.

         After my father died, Mom moved to San Antonio and took her own apartment about a mile from our house. She would walk over some mornings and spend the day. She didn’t like driving, though, and began saying that she felt like her perception was “off" when driving. Gradually, other signs of HD surfaced. Mom complained about being “askew” and off balanced. Several times her leg would simply fold beneath her. She went to the doctors about these symptoms, but no one knew exactly what was happening. One neurologist suggested genetic testing because Friedrich’s Ataxia had already been documented in her family (her niece had the disease). He felt it was possible Mom was a carrier and expressing the gene for some reason as she aged. At that point, Mom decided she didn’t really want to know.

         Eventually, a very slight stroke kicked Mom’s HD into temporary overdrive. A young lieutenant at BAMC made the diagnosis when she witnessed Mom’s movements. This physical therapist had worked with an HD family in her short career. The neurologist handling Mom vanished with her for over an hour and came back stating that he really didn’t think she had HD, but he suggested we do the genetic testing anyway. Mom went to a rehab facility to work on her motor skills, but her balance never fully returned. The physical therapists and doctors suggested she “furniture walk” when in her small apartment and use a walker whenever she went anywhere.

         Of course, the genetic testing showed that Mom is a carrier for Friedreich’s Ataxia, that she has 40 CAG repeats, and that there is a third defect on another gene that has unknown impact. This diagnosis, made five years ago, gave us labels. Now we could help Mom make knowledgeable decisions and prepare for her future.

         Over the last five years, HD's neurodegenerative course has touched every aspect of our lives. Mom’s gone from living independently in her own apartment, to an assisted living facility, to our home. Her ability to walk a mile has vanished. She can only take two or three steps with assistance. Her infrequent “Blue Days” gave way to daily battles with depression that medications attempt to control. If she’s gotten enough rest, her personality remains the same gentle, intelligent woman she’s always been. However, insomnia strikes at least once a week, and during those endless nights she morphs into Mr. Hyde. Her usually sharp intellect muddles into confusion.

Edna Abrams
St. Patrick's Day 2012
age 82

         The care Mom needs now involves twenty-four hour a day, seven days a week aid. Fortunately, she can still use her hands and arms for eating, but we must do everything else for her. She needs help moving into and out of her wheelchair, which we must push. In recent weeks, Mom’s developed a need to “pace.” She will start in her bedroom, request that we take her to the family room. Within fifteen minutes, she’ll want to go back to her bedroom. This up and down routine continues for hour after hour. By the end of the day, her legs barely move at all, becoming rigid sticks. Mom cries because she cannot stop this compulsion to go from room to room. On these days, she’s certain that she’s dying and wants me to call her doctor to see if there’s something that he can give her.

         This new symptom, the compulsion to go back and forth from room to room, lasts only one very, very long day. By the next day, Mom settles into her usual routine.  Next month, she sees her internist for her six month check-up. If this new behavior increases in frequency, we’ll ask if there’s some medication that may curb the obsessive-compulsive urgency. Her next appointment with her neurologist isn’t until September, but we can always give him a call to see if any of her current medications need adjustment.

Every time a change occurs, I am forced to accept that HD will win in the end.

Copyright 2012 Elizabeth Abrams Chapman

“Stop to Smell the Roses”

Koi has the right idea!

         I took for granted the little pleasures of life. Don’t we all? Before my mother’s disease invaded our daily routine, I spent hours out in the back yard watering the flowers. I’d sit with journal and pen or the latest best seller and piddle endlessly on my tree swing. I’d chat with my neighbors for half an hour or more by the mailbox or over the fence. I could jump into the car whenever I wanted, run to the store or a mall, or grab a bite to eat. In the evenings, I’d watch television, listen to music, or talk on the phone with friends without a single interruption. If a friend called and invited me out, I didn’t think twice about heading out the door. If someone dropped in unexpectedly, I knew I could have a block of time to visit without stopping to see to someone else’s needs.

         Huntington’s Disease robs the entire family of so many little pleasures. We are now my mother’s legs and often her hands. She’s still able to feed herself, but pulling the covers up when she’s chilled at night or fixing her pillow “just right” challenges her now. Taking a walk around the block requires a major pep rally to innervate Mom into the desire to leave the house. Her weekly trips to favorite restaurants have diminished to a once-a-month outing. If she doesn’t feel up to strain of a car trip, she may forego the excursion and opt for us to bring take-out to her. Recently, we’ve seen more personality changes in Mom. When her insomnia hits, she angers easily. During these endless nights, if one of us doesn’t use a cheerful tone of voice with a smile on our face, she’ll go into a tirade about us “neglecting” her even though we’ve stayed up with her hour after hour. Her brain, desperate for rest, misfires into obsessive compulsive actions, paranoia, and pure meanness. I refuse to feel guilty because I’ve lost my temper at two in the morning and yelled at my mother to go to sleep.       

         During the last three years I taught, I often went into tirades at misbehaving students. Sometimes, I may have “acted” with more anger than I really felt, but I’ll admit that my temper flared frequently. Since I’ve left that horrible teaching situation, I’ve regained my sense of balance. I rarely lose my temper. On days where Mom’s needs seem endless, I mutter “patience, patience, patience” and I remind myself that it’s easier to be selfless for someone you love.

I find myself resenting the loss of my time—and my freedom to do what I want, when I want. I do not resent my mother, but I hate the disease that takes, and takes, and takes. So some days I try to venture out into my gardens, and I take a moment to appreciate the beauty and little pleasures so HD doesn't win.

One rose out back

Copyright 2012 Elizabeth Abrams Chapman

“Patience”

Patience boldly strides into my home each day   

            her bright and eager smile lights her face   

                     her positive energy enervates me with determination   

Patience counsels me as I move through the house   

            she whispers encouraging words   

                        she guides me with her optimistic perseverance   

Patience models tolerance to me   

            her composure fortifies my flagging spirit   

                     her humility reminds me of the gifts of love and care   

Patience walks back and forth endlessly   

            she matches my steps when I long to stop   

                        she inspires me to stay calm and nurturing   

Patience loses energy by midnight   

            her serenity slips and falters with fatigue   

                        her gentle smile becomes feigned   

Patience slips out of the house before daybreak   

            she trudges, head hung in shame, out the door   

                     she mumbles a promise to return recharged     

I eagerly await her next arrival . . .   

Copyright 2012 Elizabeth Abrams Chapman