"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           

"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

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Copyright 2023 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           

"Life's Bloopers"

         Different people respond to stress in different ways. I hurt myself. I turn into this blundering, woebegone Charlie Chaplin who bumps and bumbles through the day. I fall up the stairs, tumble out of chairs, or ram into pieces of furniture. I spend a great deal of time looking at my bruised body and mumbling, “Where did that come from?” I don’t know why I have this response to stress, but it’s dogged me as long as I can remember.

         I can spend an afternoon showing off various scars that testify to the clumsiness that plagues my life when my mind spins with preoccupation. Anything that generates heat becomes my enemy. When calm, I can iron without worry, but the moment tension enters into the room, the iron finds a way to fall against my arm, or I manage to “press” one of my fingers. A little strain in my life means I must avoid the curling iron unless I want to display my warrior markings.

         About a month ago, I strained my left arm. The day-in-day-out repositioning of Mom tugged at my shoulder muscles and irritated my elbow joint. I’ve taken care to rest whenever possible, iced down the sore muscles, and resorted to Tylenol (or wine) whenever the discomfort peaked into the pain zone. My care paid off, too. Each day I’ve ached less and enjoyed more movement.

 

         Pulling myself off the injured list proved extremely short-lived. Yesterday, hands submerged in warm sudsy bubbles, I absentmindedly washed dishes. My attention drifted to gazing outside the window instead of paying attention to my task. I sensed David leaving something on the counter, but didn’t pull from my wanderings enough to register the fact that he’d set a pan, hot from the stove, into the pile. Needless to say, I will soon have another scar to brag about.

Copyright 2012 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

 Copyright 2023 Elizabeth Abrams Chapman