"Huntington's Disease Scars"

  

 

            Huntington’s disease ravishes the human brain like no other disease. Like fingerprints, this inherited disorder presents differently for each patient. For Mom, we overlooked her earliest symptoms—apathy and anxiety. She loved spending part of her days cross-stitching intricate patterns. Anyone who’s ever sat with needle and thread knows the delicacy of this work. When she set aside an unfinished piece, she told me that she wanted to try a different craft. I purchased a few possibilities from our local Michael’s store, but nothing drew her interest. Around the same time, she stopped reading. Always one book in hand and several on her nightstand, she shifted to barely reading the newspaper. She frequently complained that my dad never took her any place, but whenever he made suggestions, she tearfully nixed his ideas. Anxiety, something many people battle, became part of her daily routine. Sometimes when I called her, she’d cry. My suggestions that she talk to her doctor got the same response, “It’s just a blue day. It always goes away.”        

            When Mom’s feet began dancing during car drives and her fists clenched wadded Kleenex, she’d answer my worried questions with assurances that Dad’s driving drove her crazy. She spent tons of energy controlling her movements when in social situations. Dad finally found a project she loved—land outside of Leakey, Texas. They spent most of their 60s with plans and trips that filled their days. Mom’s anxiety drifted away, but her clenched fists and restless legs appeared whenever she was stressed or tired. I realize now how easy it was for all of us to minimize her early symptoms.

            Right after Dad’s 71^st birthday, a massive heart attack killed him. Within a year, Mom found an apartment walking distance to our home and signed a six month lease to see if San Antonio would fit her needs better. Over a period of eight years, her abilities melted away so slowly that we missed the changes. Once driving on her own, she began handing the car keys to one of us. Her weekly walk to our house became less frequent and then stopped altogether. Her anxiety kicked up again, and she began obsessive behaviors to counter her worst fear—her retirement deposits not being credited to her account. I discovered that she stayed up until midnight to begin calling her bank until her money arrived each and every month. I never could convince her that it was fine to wait until later in the morning.

            None of us noticed that Mom cooked fewer meals for herself. Somehow, I began swinging by her place daily on the way home from work to bring her over for meals we cooked together. When her leg began buckling out from under her, tumbling her to the ground, we scheduled a doctor’s appointment. Fortunately, she had it happen while with the doctor, who scheduled Mom with a neurologist. He suggested several possibilities, and when we mentioned my cousin had Friedreich’s ataxia, he wanted to order genetic tests. Before that could happen, Mom suffered a TIA, landed at Brooke Army Medical Center and her Huntington’s disease went into hyper drive. All of her subtle symptoms blossomed and others surfaced. Her balance evaporated, she couldn’t hold a cup of water or walk unaided. A young lieutenant’s experience with an entire family battling Huntington’s disease insisted to her superior that Mom be tested for it as soon as possible. The neurologist at first resisted the idea because Mom’s cognitive abilities were so sharp. She always recited the “remember these words” drill flawlessly, knew the date, all of our names and birthdates, counted forward and backward without fail.

            The tests, though, never lie. Mom’s Huntington’s disease snuck into our lives without notice and took over everything during her final four years. The stages are recognizable and yet still unique for each patient. Our lives narrowed down, too, as caregivers. I raced to retire from teaching because we knew she’d need care twenty-four/seven. We removed the wall between one bedroom and the bathroom to create a wheelchair wide access point. We structured our days and nights to accommodate her ever increasing needs. When Mom moved into our home, she could get into and out of her wheelchair on her own. She could cook with me, help with laundry, and take trips to see my siblings. She would discuss the news, watch movies with me, and chat about plot lines. By the end, we did everything for her.

            Caregivers don’t talk about having to handle impacted bowels. Caregivers don’t share the horrors of watching a loved one go from eating meals to being unable to take a syringe of water. Caregivers don’t reveal the heartache whispering, “It’s time to go. We’ll be fine. We love you, but you need to let go.”

 

            Mom died in November 2012 after living with us for two years, but we were her caregivers for many years before she moved in with us. Huntington’s disease changed our family forever. We have a resilience now that prepares us to handle new crisis situations with a comparison point—“It’s NOT as bad as Huntington’s disease.”

Copyright 2025 Elizabeth Abrams Chapman           

"Reset"

Paul and Mom July 1992

            Our cabin near Leakey, Texas rests within a remote area where the hills cup around, making cellphones unusable once we turn off of FM 337 onto Rim Rock Road. My parents purchased the land over thirty years ago, long before cell phones existed, when they were about the same age as we are now. I remember lecturing them to wait until we arrived before they unloaded the supplies from one of the many projects we tackled together during those first years. Without fail, they ignored my warnings. We’d pull up to find they’d maneuvered plywood out of the truck bed on their own. Dad often quipped that they weren’t invalids!

Mom and Dad July 1992

• 
  

David and Dad July 1992

• 
  

Finished porch-July 1992

            After Dad died, spending a weekend at the cabin tumbled all of us into grief. We attempted a few trips with Mom, but she cried each time. Once she said, “I see the ghosts of who we were walking outside.” By that time, Huntington’s disease had her wheelchair bound. She’d last a few hours, and then ask for us to bring her home. Once Mom died, we made a few trips up alone where we made a few necessary repairs, cut down a few ever-intrusive cedars, and down-shifted our visit to nights of board games or stargazing. About six years ago, our Escape Hybrid needed extensive and expensive repairs. Because of its age and mileage, we found ourselves purchasing a car that couldn’t handle the rough Rim Rock Road terrain. David’s parents and siblings assured us that we could exchange our car with either their SUV or truck whenever we wanted to make a trip; but in the usual manipulative dance of narcissists, their offer proved shallow.

            For three years, the cabin remained untouched. Last May, David’s cousin and her husband took us up for a weekend. Someone had broken into the place and tossed things around searching for valuables that didn’t exist. This same cousin took me back last November for another quick visual check. Each short view left me determined to get a new SUV, which we did at the end of December.

            This weekend we carefully examined some areas of wood rot in the screened porch area. We tossed around ideas of making the repairs ourselves, but I know that’s unrealistic. We debated over the possibility of taking the area down and just having a huge deck. We discussed finding a local company to hire to do the repairs. At the moment, the damaged area doesn’t hold the danger of falling in on us. We have time to decide the best course. In the back of my mind, I hear my own voice warning my parents, “Wait until we get there. Don’t do anything stupid!”

Our hidden driveway January 29, 2022

• 

  One task accomplished! January 29, 2022

            That past caution reminded us to limit our visit to one major task. David focused on cutting the knee-high grass that covered the driveway and cleared some cedar. I relined the driveway with rocks.

            Both of us used the sunshine and hard labor to step back and away from work and world. We hit “reset” to return home recharged and ready.

 Copyright 2022 Elizabeth Abrams Chapman

  

"Caregiving Scars"

Edna Abrams 80 yrs.

        

           Knowing your personal strengths and weaknesses means you learn when to tune in to your inner voice that warns, “Watch your step. Take your time. Give yourself distance from others to think.” Many times, though, the cacophony of other voices drowns out that quieter internal tone. Hours, days, weeks, and even months press by when you listen and respond to everyone but your own ideas and emotions.

            Your life becomes a long list of “To Do” and “Should Do”. Family and friends lecture those of us in caregiver roles to “take care of yourself first” without realizing such advice cannot be taken without another person actually stepping into your home. They throw out suggestions for you to get away and take a break, but it’s extremely rare that they enter into the responsibility you’ve undertaken for any extended period of time.

            Huntington’s disease attacked my mother fairly late in life. In her 60s she stopped the voracious reading she’d done her entire life. Her passion for cross-stitching died overnight. She talked about being depressed, but insisted her “blue days” didn’t warrant a doctor’s visit. Her tendency for anxiety increased. She complained frequently about not going out or doing things, but then pulled the plug on suggested outings and activities. Sometimes, her feet would move in a restless dance, but she’d stop them the moment anyone called attention to them moving. In her early 70s, she still drove her car and walked a mile each day. She had a couple of times when her legs folded up under her midstride, but HD didn’t blip on any of her doctors’ radar. At 78, Mom had a TIA that propelled her into a Huntington’s disease nightmare. The neurologist treating her at the hospital still didn’t recognize HD, but a young nurse caring for her had worked with an HD family. It was her insistence that forced the doctors to run genetic tests, which gave us the diagnosis.

            No amount of research prepared our family for the years of caregiving that became our family destiny. For two years after the diagnosis, Mom lived in an assisted living complex walking distance from our home. I visited her every day unless I was ill. On those occasions, my husband or son spent part of the evening with her. Her motor skills spiraled into a decline that forewarned us that eventually she’d need to move into our home. She went from walking on her own, to using a walker. She broke her wrist, had cauliflower ear from a fall, and split her nose on her coffee table. Her internist shifted her into a wheelchair because no one wanted her to break a hip. During those two years, our lives revolved around making certain Mom never felt alone. She made friends with her aides, threw parties for both residents and staff, and daily insisted that she missed her apartment. She knew, though, that she’d never live alone again.

            My retirement from teaching on year 30 became imperative. No one talks about the extremely high costs of assisted living. Mom’s care during the two years she stayed there increased from $4,000 to $5,000 a month as her nursing needs changed. Shifting her into the 24/7 care that Huntington’s disease would eventually require meant that price would increase out of our budget. The cut in my take home income from retiring to care for Mom was still financially better than moving her into the more intensive care.

            In 2010, Mom moved into our home. For the next two years, life increasingly revolved around her and her needs. My son rented a home in our neighborhood to be close by, and during the last six months of Mom’s life, he moved back home to help me while my husband worked. The bond formed with the three of us caring for Mom still connects us today. Mom’s deterioration once we moved her here slowed down. Her neurologist noted that she felt happier and more secure. Her mental decline never happened as with many HD patients. If she got enough sleep, she stayed sharp and focused. My greatest fear, that Mom would eventually be unable to swallow, started in November 2012. She went three weeks without food and three days without water. 

            No one writes about or talks about the scars carved into the caregiver’s heart. Ten years later, I still catch myself thinking that I need to rush over to Mom’s apartment if I’m out running errands. My caregiver’s scar means I listen for Mom’s bell to ring some nights. That scar reminds me that a disease took over our existence as it destroyed my mother’s life.           

Edna Abrams 81st birthday 2011

Edna Abrams with her nephew and his wife 2011

Mom listening to live music with family 2011

Mom at cabin in Leakey, TX 2011 age 81

IOUNIO's "Isolated" captures my feelings perfectly.

SUBSCRIBE! It's that easy to help talent today!

Copyright 2023 Elizabeth Abrams Chapman

  

"Caregiving Scars"

 

Edna Abrams 80 yrs.

        Knowing your personal strengths and weaknesses means you learn when to tune in to your inner voice that warns, “Watch your step. Take your time. Give yourself distance from others to think.” Many times, though, the cacophony of other voices drowns out that quieter internal tone. Hours, days, weeks, and even months press by when you listen and respond to everyone but your own ideas and emotions.

            Your life becomes a long list of “To Do” and “Should Do”. Family and friends lecture those of us in caregiver roles to “take care of yourself first” without realizing such advice cannot be taken without another person actually stepping into your home. They throw out suggestions for you to get away and take a break, but it’s extremely rare that they enter into the responsibility you’ve undertaken for any extended period of time.

            Huntington’s disease attacked my mother fairly late in life. In her 60s she stopped the voracious reading she’d done her entire life. Her passion for cross-stitching died overnight. She talked about being depressed, but insisted her “blue days” didn’t warrant a doctor’s visit. Her tendency for anxiety increased. She complained frequently about not going out or doing things, but then pulled the plug on suggested outings and activities. Sometimes, her feet would move in a restless dance, but she’d stop them the moment anyone called attention to them moving. In her early 70s, she still drove her car and walked a mile each day. She had a couple of times when her legs folded up under her midstride, but HD didn’t blip on any of her doctors’ radar. At 78, Mom had a TIA that propelled her into a Huntington’s disease nightmare. The neurologist treating her at the hospital still didn’t recognize HD, but a young nurse caring for her had worked with an HD family. It was her insistence that forced the doctors to run genetic tests, which gave us the diagnosis.

            No amount of research prepared our family for the years of caregiving that became our family destiny. For two years after the diagnosis, Mom lived in an assisted living complex walking distance from our home. I visited her every day unless I was ill. On those occasions, my husband or son spent part of the evening with her. Her motor skills spiraled into a decline that forewarned us that eventually she’d need to move into our home. She went from walking on her own, to using a walker. She broke her wrist, had cauliflower ear from a fall, and split her nose on her coffee table. Her internist shifted her into a wheelchair because no one wanted her to break a hip. During those two years, our lives revolved around making certain Mom never felt alone. She made friends with her aides, threw parties for both residents and staff, and daily insisted that she missed her apartment. She knew, though, that she’d never live alone again.

            My retirement from teaching on year 30 became imperative. No one talks about the extremely high costs of assisted living. Mom’s care during the two years she stayed there increased from $4,000 to $5,000 a month as her nursing needs changed. Shifting her into the 24/7 care that Huntington’s disease would eventually require meant that price would increase out of our budget. The cut in my take home income from retiring to care for Mom was still financially better than moving her into the more intensive care.

            In 2010, Mom moved into our home. For the next two years, life increasingly revolved around her and her needs. My son rented a home in our neighborhood to be close by, and during the last six months of Mom’s life, he moved back home to help me while my husband worked. The bond formed with the three of us caring for Mom still connects us today. Mom’s deterioration once we moved her here slowed down. Her neurologist noted that she felt happier and more secure. Her mental decline never happened as with many HD patients. If she got enough sleep, she stayed sharp and focused. My greatest fear, that Mom would eventually be unable to swallow, started in November 2012. She went three weeks without food and three days without water.

            No one writes about or talks about the scars carved into the caregiver’s heart. Ten years later, I still catch myself thinking that I need to rush over to Mom’s apartment if I’m out running errands. My caregiver’s scar means I listen for Mom’s bell to ring some nights. That scar reminds me that a disease took over our existence as it destroyed my mother’s life.           

Edna Abrams 81st birthday 2011

Edna Abrams with her nephew and his wife 2011

Mom listening to live music with family 2011

Mom at cabin in Leakey, TX 2011 age 81

 

IOUNIO's "Isolated" captures my feelings perfectly.

SUBSCRIBE! It's that easy to help talent today!

Copyright 2023 Elizabeth Abrams Chapman

  

"A Vegetable Garden"

 

I dug out, added soil, carved out rows, and neatly planted my first vegetable garden the year I turned nine. In my memory, this plot of backyard covered acreage, but I know in reality it couldn’t have eaten up much of the yard. I grew lettuce, green onions, tomatoes, and two varieties of radishes. If I close my eyes, I can see the child I was kneeling on the ground, worshipping Earth.

When we moved to Texas, my parents delegated a larger garden for my passion. I added peppers, herbs, and even corn to my crops. One year, I planted cucumbers along one section. That summer we ate cucumbers with onions in vinegar, sugar and water. We ate them on sandwiches and within salads. The bumper crop meant we gave them to our neighbors and friends. My mother didn’t want to pickle them (she had extremely limited pantry space), so we made cucumber ointments for our faces. I remember slicing cucumbers into my bathwater! 

Making a living shoved aside my desire to garden; and as an adult, I shifted to herbs and native plants and flowers. I haven’t grown much more than tomatoes in recent years. And I think a part of me longs to sink my hands into rich soil again.

In the years since my mother’s death, I’ve toyed with the idea of toiling in a vegetable garden. In my mind, I’ve carved out a huge section of our backyard and planted it to the brim with thriving life. I imagine myself outside each day, watering and weeding. I can actually feel my body kneeling in worship of the harvest.  

This image seduces me.

But I’ll prepare no garden this spring. I promised myself a year of doing less, of walking away from the “must do” lists that I create for myself. 

I grow a different garden this year. One that allows me to dip into serendipity instead of structure. I hope to nurture creativity and whim not bound by schedules or lists. In the end, I strive cultivate a gentler “me” who’s not so driven to do more, but instead slows down enough to enjoy more.

Once I’ve gathered my harvest of contentment? Then I’ll plant a vegetable garden.  

  

Copyright 2014 Elizabeth Abrams Chapman 

"A Forgotten Load"

            Upon entering the laundry room this morning, dismay accompanied me as I noted unfolded towels in the basket. I’d totally forgotten to fold them on Wednesday! Panic knocked my pulse up a beat as I shot a glance at the washer to see if I’d left a load of wet clothes in the machine. I don’t do this often, but there’s nothing worse than damp clothes sitting for several days. Fortunately, the drum gleamed in emptiness. My next response, of course, was to check the dryer for a load. Today, a set of sheets tangled inside—dried. What a relief! Occasionally, I’ve left wet clothes in both appliances, which ripples down into a wash-redo.  
            I take comfort in the fact that many loads of laundry remain forgotten by other people. My lapse in memory doesn’t indicate anything more serious than absent-mindedness caused by a busy day or interruption in routine. The proof for the commonality of forgotten loads rests with the option on all machines: FRESHEN UP.
 

Copyright 2022 Elizabeth Abrams Chapman    

 

"The Litany"

 

"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” 

Frank Herbert--Dune

          When in my twenties, I carried this litany from Dune in my wallet. Faced with living alone for the first time in a new place while attending college, my personal anxieties dogged me. On bad days while riding the shuttle to early morning classes, I would whisper these words. When I worried that I wasn’t as smart as everyone else thought, this recitation calmed my soul.

          When in my thirties, I carried this litany (now worn and faded) as solace whenever I felt I failed as a wife, mother, daughter or sister. The dread of not measuring up to the expectations of my principals or peers wrapped me into doubts that eased if I chanted this invocation. 

          When in my forties, my father died. The world tilted. I faced one of my worst fears and survived. Somehow, carrying the little scrap of paper seem unnecessary. The words, permanently etched in memory, offered comfort and soothed my grief. 

          When in my fifties, my life narrowed down into the nightmares of my mother’s Huntington’s disease. Every day filled with uncertainties as I dealt with the horrific symptoms of this disorder. To be honest, I hid from many of my fears. I wasted energy running away from them. I forgot the power of permitting them “to pass over me and through me.” 

          Now I begin my sixties. And I need to carry these assurances with me once again. I’m printing them out on a crisply new piece of paper and folding them into my wallet. Although committed to memory forty years ago, I need them to be concretely within my grasp. I face a different challenge today as a madman dictates our political reality. I must not let his mental illness paralyze my ability to reason and resist.

Copyright 2018 Elizabeth Abrams Chapman

“Huntington’s Disease Scars"

 

 

            Huntington’s disease ravishes the human brain like no other disease. Like fingerprints, this inherited disorder presents differently for each patient. For Mom, we overlooked her earliest symptoms—apathy and anxiety. She loved spending part of her days cross-stitching intricate patterns. Anyone who’s ever sat with needle and thread knows the delicacy of this work. When she set aside an unfinished piece, she told me that she wanted to try a different craft. I purchased a few possibilities from our local Michael’s store, but nothing drew her interest. Around the same time, she stopped reading. Always one book in hand and several on her nightstand, she shifted to barely reading the newspaper. She frequently complained that my dad never took her any place, but whenever he made suggestions, she tearfully nixed his ideas. Anxiety, something many people battle, became part of her daily routine. Sometimes when I called her, she’d cry. My suggestions that she talk to her doctor got the same response, “It’s just a blue day. It always goes away.”        

            When Mom’s feet began dancing during car drives and her fists clenched wadded Kleenex, she’d answer my worried questions with assurances that Dad’s driving drove her crazy. She spent tons of energy controlling her movements when in social situations. Dad finally found a project she loved—land outside of Leakey, Texas. They spent most of their 60s with plans and trips that filled their days. Mom’s anxiety drifted away, but her clenched fists and restless legs appeared whenever she was stressed or tired. I realize now how easy it was for all of us to minimize her early symptoms.

            Right after Dad’s 71^st birthday, a massive heart attack killed him. Within a year, Mom found an apartment walking distance to our home and signed a six month lease to see if San Antonio would fit her needs better. Over a period of eight years, her abilities melted away so slowly that we missed the changes. Once driving on her own, she began handing the car keys to one of us. Her weekly walk to our house became less frequent and then stopped altogether. Her anxiety kicked up again, and she began obsessive behaviors to counter her worst fear—her retirement deposits not being credited to her account. I discovered that she stayed up until midnight to begin calling her bank until her money arrived each and every month. I never could convince her that it was fine to wait until later in the morning.

            None of us noticed that Mom cooked fewer meals for herself. Somehow, I began swinging by her place daily on the way home from work to bring her over for meals we cooked together. When her leg began buckling out from under her, tumbling her to the ground, we scheduled a doctor’s appointment. Fortunately, she had it happen while with the doctor, who scheduled Mom with a neurologist. He suggested several possibilities, and when we mentioned my cousin had Friedreich’s ataxia, he wanted to order genetic tests. Before that could happen, Mom suffered a TIA, landed at Brooke Army Medical Center and her Huntington’s disease went into hyper drive. All of her subtle symptoms blossomed and others surfaced. Her balance evaporated, she couldn’t hold a cup of water or walk unaided. A young lieutenant’s experience with an entire family battling Huntington’s disease insisted to her superior that Mom be tested for it as soon as possible. The neurologist at first resisted the idea because Mom’s cognitive abilities were so sharp. She always recited the “remember these words” drill flawlessly, knew the date, all of our names and birthdates, counted forward and backward without fail.

            The tests, though, never lie. Mom’s Huntington’s disease snuck into our lives without notice and took over everything during her final four years. The stages are recognizable and yet still unique for each patient. Our lives narrowed down, too, as caregivers. I raced to retire from teaching because we knew she’d need care twenty-four/seven. We removed the wall between one bedroom and the bathroom to create a wheelchair wide access point. We structured our days and nights to accommodate her ever increasing needs. When Mom moved into our home, she could get into and out of her wheelchair on her own. She could cook with me, help with laundry, and take trips to see my siblings. She would discuss the news, watch movies with me, and chat about plot lines. By the end, we did everything for her.

            Caregivers don’t talk about having to handle impacted bowels. Caregivers don’t share the horrors of watching a loved one go from eating meals to being unable to take a syringe of water. Caregivers don’t reveal the heartache whispering, “It’s time to go. We’ll be fine. We love you, but you need to let go.”

 

            Mom died in November 2012 after living with us for two years, but we were her caregivers for many years before she moved in with us. Huntington’s disease changed our family forever. We have a resilience now that prepares us to handle new crisis situations with a comparison point—“It’s NOT as bad as Huntington’s disease.”

Copyright 2025 Elizabeth Abrams Chapman           

"But Strong in Will"

  

Edna Thompson in 1931

The little girl stood alone at the train depot. Her eyes cast downward. She noted the rough wooden planks. Self-consciously, her small hands ran across the placard around her neck. “EDNA THOMPSON.” Her name printed in bold black letters. Men and women hurried around her, ignoring the pleading look in her eyes. Her lips trembled as she fought back tears. Eventually, the passengers loaded suitcases and supplies onto wagons and into cars and vanished toward town. No one approached her, so she perched upon her suitcase, a small brown bird. 

     The train pulled noisily from the station, puffing steam and wailing its sad song. Moments after the last car rolled past, a station manager came from the ticket office, a broad smile on his face. He said nothing, just took the girl’s small, cold hand into his own and started to lead her into his office when a wagon turned the corner and approached the station. He paused, still holding the child’s hand, and smiled his greeting to the travel-worn couple. 

     "This package belong to you?” he asked lightly.

     "Sure does,” the tired man nodded. “Had a wheel break. Sorry about being late. She cause any trouble?” He jerked his head toward the little girl.

     "Not a sound out of her yet,” the station manager stiffened at the other man’s stern tone, but he still lifted the girl up into the wagon bed. “No trouble at all,” he continued.

     "Good. Kid belongs to my cousin. Seems my cousin up and died a couple of weeks ago, and her husband can’t keep all the kids. Had eight, ya know,” he paused and looked back at the silent child. “Hope this bundle won’t be too much trouble. Doesn’t look like she’ll be much help on the farm, though.” He gave a quick whip of the reigns and his horse trotted off taking the little girl further away from everything she’d ever known.

     One episode from Mom’s childhood that she revealed to us, her own children, when she was in her seventies, like it was a postscript attached to the end of a misplaced letter. I’d known that she spent nine years living with various foster care families. She’d told the stories of the Walkers treating her like a live-in maid and nanny. 

I spent my childhood ironing sheets, Dad’s square military handkerchiefs, and table cloths because Mrs. Walker punished Mom for pressing the collar of her shirt on the dresser instead of using the ironing board. The punishment was ironing for the family of five until Mom turned seventeen and graduated from high school. She never wanted to touch an iron again, and somehow I thought it was the best household chore to have!

I knew of her eldest sister’s drowning followed a couple of months later with her mother’s illness and death. I knew the stories of Mom’s alcoholic father who lost custody of all the kids. I knew about one brother going off to war and deciding England was more home than the States. About the other brother who went off to war and was shot by the Germans, spending time in a German P.O.W. camp. 

I knew about her losses, and hurts, and insecurities not because she flaunted them, but because they snuck out when some other life event paralleled her childhood.

Unhappy childhoods cast shadows into adult lives. Mom felt lonely and frightened most of her youth. She didn’t understand why her father couldn’t stop drinking and bring her home. Shyness and insecurity became ingrained into Mom’s personality. She worked hard at being the nice neighbor, the mother who volunteered for every school function, and the wife who had dinner on the table fifteen minutes after Dad crossed the threshold. She became the perfect mother for the three of us kids.

With every ounce of her energy, Mom gave us children the childhood she never had. She never took off to visit her family without taking all of us with her. When we moved from state to state, or base to base, she made certain our bedrooms moved with us. We each had our own furniture and decorations that allowed us to feel at home even after a move. If one of us needed something for school or an extracurricular activity, she did without. For years she had enough clothes to get her through the week—one nice dress, a winter coat, and one pair of shoes. 

Her mission to provide for us a safe and secure home focused us as a family. When Dad left for war, potential trauma and conflict became minimized because she provided us a home filled with love and laughter. Any tears she cried, she did behind closed doors and away from us. We never sensed her loneliness, fear, or insecurity because she put our needs ahead of her own. 

Many friends and neighbors worried about how Mom would survive after Dad’s sudden death. She’s seemed a shadow cast by my ebullient father. Yet we, her children, knew the steel hidden beneath her gentle nature, and none of us doubted her resilience. When she decided to move back to San Antonio, rent her own place, and decorate it to her tastes, we weren’t surprised by her independence. 

Today, at eighty-one, Mom fights another hardship—Huntington’s Disease. She’s a first generation carrier of the disease, with an unusually late onset. Nothing about her illness has been text book, but everything about it is heartbreaking. Mom’s years of calm acceptance of life’s tragedies trained her for the strain of her present days. Huntington’s Disease affects all aspects of a person’s life. For Mom, her cognitive functioning remains clear and strong—allowing her to enjoy the irony in The Daily Show and admire the boldness of The Colbert Report. If she’s not stressed and has her anxiety under control, she’s able to enjoy her daily routine.

That routine, though, gradually constricts and confines.  Feeling unbalanced and “askew” when moving, Mom slowly restricted her environment. Mom raised us to be true to ourselves; and her dancing movements caused by chorea didn’t keep us from eating out, going on vacations, or embracing public activities other HD sufferers avoid. After two years in an assisted living facility, we decided to move Mom into our home. She’d slid slowly from utilizing a walker for long distances to shuffling around her small apartment with her walker, but falling frequently. When she moved in with us five months ago, she could manage getting out of bed, to her wheelchair, and into her bathroom on her own. Now she needs assistance with all three of those areas.

     Huntington's Disease has no cure and minimal treatments. Mercifully, Mom’s severe anxiety attacks disappeared a few months ago. Her short and long term memory remain intact, too. Her body, though, betrays her. The chorea that pulled her arms, legs, and torso like a puppeteer controlling a marionette no longer plagues her. Instead, rigidity slips into her life. Her muscles resist movement, and positioning her reminds me of moving a life sized Barbie doll. Already, speaking challenges her, so we’re learning to phrase our conversations to where she can respond with short phrases. Eventually, all of her muscles will refuse to move. 

We measure our future in months now, but we know eventually we’ll count the days or hours. Fortunately, I picked up some of the pragmatism that flows through Mom’s veins. The challenges that remain before us are just another part of life’s adventures. At least this time, Mom won’t stand alone. 

Copyright 2011 Elizabeth Abrams Chapman

Edna Thompson Abrams
August 28, 2010

"Leaving Town"

            This morning finds me up extra early to prepare for a quick out of town trip. As I assemble all of the necessities we need for Mom, I realize how life has come full circle. Remember all the stuff a weekend trip needed when traveling with very young children? Bags of diapers, wipes, medicines (in case), toys, strollers, booster seat, favorite pillows, blankets, and that special stuffed animal. One bag contained clothing for the days of the trip plus three or four extra outfits for spills.

            Twenty years later, and I pack Depends instead of Pampers. The medications have their own small Rubbermaid tub. I swing a wheelchair into the back of the station wagon instead of a stroller, and I juggle two purses instead of a purse and diaper bag. Mom doesn’t have a favorite stuffed animal, but she takes along her favorite pillow and comforter. I make certain I have the lidded cups she now uses along with the bendable straws and plenty of water to drink on the three hour drive. One bag contains extra clothing in case driving three hours wears Mom out and our one day trip turns into a longer stay until she regains strength.

            Mom asked for this trip a few days ago. For some reason, she has this sudden drive to do things while she still has the energy. On some level, I believe she suspects that even short outings may become too difficult before the year ends.

            Someone thoughtlessly said to me a couple of months ago, “You’re taking care of your mother full time now? I mean, this has dragged on for years!” Her tone of voice carried intolerance and a hint of disbelief, as though she couldn’t believe someone can have a disease that slowly narrows life into counting only good days.

            For us, celebrating good days comes easily. So today we’ll attempt the longest car ride Mom’s done in a couple of years. With luck, she’ll spend a wonderful day and evening with her eldest daughter and make it back to San Antonio with energy to spare. Maybe this trip will be so successful that she’ll plan a trip back to her own home in League City. If fortune follows us, we’ll be leaving town again.

Mom's wheelchair goes everywhere

Copyright 2011 Elizabeth Abrams Chapman