"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

"The Best Laid Plans"

            I plan. As long as I can remember, I’ve set specific goals that I aim to attain. In my youth, I designed a year plan, a five year plan, and a nebulous “someday” list of possibilities. For years, I’d jot these objectives on the last page of my journals, sometimes including deadline dates. Many of these targets focused on simple things like to pay off a credit card in six months, plant bushes for Mother’s Day, buy a new chair for the living room, or replace the fence. I love that one since it’s been on my lists for the last five years!
        Then the years came where the lists shifted more to living goals: Harmony-not perfection, Count the good days, Listen carefully, Let it go. I imagine this shift came because I never crossed some items off the lists, never reached the goals. Or maybe I came to realize that some of those items never go away. There’s always something to buy or repair around a home. I like to think that my aspirations shifted into making myself a better person.
        During the last couple of years, the lists stopped altogether. I don’t want to remind myself that my washer and dryer approach year twenty-five and should be replaced. Also, I don’t want to shift into the future too far. Many days, I slip into survival mode where making it through the next twenty-four hours with grace and understanding seems enough of a focus for me. Those of you with elderly parents needing care understand this protective move. Planning ahead brings the possibility of too much loss and heartbreak. Instead, I’ve set aside my lists of goals because I know that within the next year, or even as little as six months, every plan could go awry.

Edna and Karl Abrams with us heading to a wedding

Copyright 2011 Elizabeth Abrams Chapman

"Liz and the Terrible, Horrible, No Good Day"

           Confession time today. Some days, nothing goes right. No matter how hard I smile, or what lilt I put into my voice, everything I say or do rubs my mother wrong. No matter how much she may struggle to hold onto a good mood or try to lever herself into or out of her wheelchair, Mom still needs a tremendous amount of help. And it frustrates both of us. Some days.

         One moment yesterday, we sat watching Marley &  Me. Mom likes Owen Wilson, and I reasoned this movie would give me a break from watching reruns-of-reruns-of-reruns-of-reruns of Everybody Loves Raymond.  The next second, Mom insisted I get her into her wheelchair so she could go to bed. It didn’t matter that it was only 2:30 in the afternoon. If Mom gets the idea stuck in her head that she wants to go to bed, then to bed she goes. I convinced her not to change out of her clothes, but to stretch out and take a nap while she listened to her favorite oldies radio station. I snugged her into her beloved green blanket from head to toe and left the room.

I never made it down the hallway. She rang her service bell, calling my name simultaneously. I about-faced and fairly cheerfully asked, “What do you want?”

“Nothing,” Mom replied.

“Okay,” I readjusted her blanket because her jerking left arm had entrapped itself in the fabric.

I made it down the hallway and into the family room before she called me back again. Used to this routine, I still tinted my voice with good will as I asked, “What now, Mom?”

“Nothing,” she responded yet again. This time, though, she burst into tears. Her feet kicked back and forth as she struggled to roll onto her right side. Her left arm flailed a little. Then she started crying. “I can’t.”

“Can’t what?” I moved over to her bed, sitting in her wheelchair to bring us eye to eye. I waited. Then I asked again, “Can’t what?”

“Get . . . get. . . get. . . my leg right.” At this point her crying shut down her ability to speak. “Fix it!” she managed to demand.

 I stood next to Mom’s bed in utter exasperation because I can’t “fix it.” She started trying to sit up, grabbing for her wheelchair. “Where are you going? Where are you going?” I asked. “What do you want me to do? Do you need to go to the bathroom? Bathroom?” I asked as she dragged herself into a standing position.

“Which way do I go? I can’t go.” Her frustration wept from her as I turned her into her wheelchair.

“Do you want to go watch TV now? TV or bed?” I waited a few seconds while she regained her composure. “TV or bed?”

“Bathroom.”

And so our afternoon went—round and round, on and on until I found myself yelling at the top of my lungs because I just wasn’t able to get things right. I wasn’t yelling at my mother—well, I was—but I also yelled at the “terrible, horrible, no good, very bad day.” I screamed at my powerlessness in giving her comfort. I bawled at the unfairness of our bad days and my failure to watch my tone of voice and body language. Some days, I feel hopeless. Some days.

Copyright 2011 Elizabeth Abrams Chapman 

"The Shit Kit"

 

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

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

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

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

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

No eye contact again.

"Do you need to use the bathroom?"

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

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

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

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

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

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

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

Then Mom fell.

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

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

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

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

Copyright 2012 Elizabeth Abrams Chapman

"Running on Empty"

           My son voices his worry that David and I will sap our energy too much in caring for my mother. He knows about the middle of the night aid to take Mom to and from the bathroom, realizes she wakes up at the crack of dawn; he understands her need of someone being constantly within calling distance. When he expresses his concern, I remind him we spend a huge portion of each evening enjoying our own interests. We spend time together watching something mindless on television while munching popcorn.

         But I do worry about those days when I’m snapping at everyone and everything because that’s an indication that I’m feeling neglected or overwhelmed. When my siblings come to give us a break, we try to sleep late and head out of the house to our favorite places like browsing through the shops in Gruene, Texas. If my brother or sister arrives early on a Friday, we sometimes escape to the cabin in the hill country. That perfect retreat always offers the respite we need. If we don’t get a long break, we find ourselves overtired.

         I love the advice everyone gives about David and I needing to take care of ourselves and get adequate breaks. What people don’t realize is that unless someone volunteers to come over to sit for an evening, we can’t take off for a stroll through a mall or an evening movie. We count ourselves fortunate that our son lives in the neighborhood. He spends an incredible amount of time “hanging” with Grammy. If I have a doctor’s appointment, I know he’ll come over. I don’t like to overuse my son, though. Is this a normal response? I don’t know. I fear the months in the future when Mom’s needs will increase, when my need for breaks won’t fall into the “occasional” category. I think on some level, I don’t want to misuse my son’s offers for help now because I may need him more in the future.

         As we enter the second year of caregiving, we’ve reached our stride. This morning, I ran Mom’s bath while David started his pre-work routine. He stepped in to help Mom into the tub. While I stayed with her as she soaked in her bubbles and listened to her new Susan Doyle cd, David packed his lunch. Then he returned to help lever Mom out of the tub, dashing from the room to get dressed while I toweled Mom dry, applied lotion to her skin, and dressed her. Entering the family room, we found David already munching on his morning cereal.

         Our lives have a steady routine that flows most days in surprising harmony. Those days where I can’t do anything right for Mom sprinkle throughout the month. Those moments when she drives me crazy because she doesn’t want anything I’ve cooked happen infrequently. Those nights where we get up two or three times with her occur no more than once or twice a week. So, for now we’re holding our own.

         And when I find that we’re “running on empty” I think we’ll fall into music, or books, or hobbies to recharge ourselves.     

Camera in hand!

Copyright 2011 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