"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

  

"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

 

"The Footlong Generation"

 Our children live at home— 
dreaming, planning, reaching, and working
within a reality of Pink Slips and Red Ink 

meeting Maslow’s levels by 
staying, sharing, settling, and waiting 
Our children leave our homes— 
dreaming, planning, reaching, and working
 
but return with Divorce and Failure 
postponing their destinies by 
bleeding, retreating, suffering, then healing
 
Our parents live at home— 
yearning, coping, striving, craving 
becoming our children by 
needing, depending, trusting, and relenting
 
Our parents live in homes—
yearning, coping, striving, craving 
relinquishing their destinies by 
falling, breaking, suffering, dying 

Copyright 2010 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

  

“Mom’s Car”

            My mother owned a 1999 Ford Taurus station wagon. The car, purchased by my parents two years before Dad died, came loaded with options they rarely indulged in when they purchased cars. The interior’s plush silver-grey upholstery contrasted sharply to all of the years of the cheap plastic seating of my childhood. Other upgrades included power windows, an air conditioner that blew Artic cold, and carpet with matching floor mats, and cruise-control. They even indulged in a cassette player instead of their basic AM/FM radio.

            Dad loved driving this car and my parents started making longer treks to visit relatives in Illinois and Arizona. They’d whip down IH-10 between San Antonio and League City every couple of months. When Dad died, Mom made certain to continue the car payments, and for the first time in her life owned a vehicle in her own name. Moving to her apartment in San Antonio meant she drove the car less than two miles to reach the grocery store, and so the car’s mileage stayed relatively low. When all of us decided to go to Louisiana, she insisted we take her comfortable car. She didn’t like driving long distances herself, so any road trips in Texas meant I’d drive her station wagon.

            For the first six months Mom lived in assisted living, her car sat in the parking lot. We’d use it to get her groceries or make a run to Sonic. Assisted living put a strain on her monthly budget, so after a while I suggested we take over her car—change it into my name so I could pay for the insurance, gas, inspections and repairs. I sold my own car and used hers to commute to-and-from work. Any time Mom needed to go anywhere, we still used her car since our Escape stood too high off the ground for her to climb into, and the RX8 slung down too low. And although I owned the car on paper, I never thought of it as anything but “Mom’s car.”

            As her illness robbed her of the use of her legs, we all grew to appreciate this station wagon. At first, Mom could step into the car on her own, but eventually we had to assist her from her wheelchair into the back seat. Getting her into the car required a pivoting motion to get her butt-in-chair followed by her lifting her feet into place. Then she would lean forward and hug the front seat with her arms as someone else maneuvered her into place and fastened the seat belt. The station wagon provided plenty of room for her, and I could sling her wheelchair into the back without problem. Now the car became transport to-and-from doctor’s offices with swings through drive-through eateries as we searched for the best chocolate milkshake. Mom loved eating out, and so we’d load her into the car once a week to head for one of our favorite places.

            After Mom died, I used the car less frequently. If I needed to haul something large, like bags of potting soil, I’d hop into the station wagon. Eventually, I’d use the car once a week to keep the battery charged. When the choke started sticking on the car, stranding me a few times, I began only looping it through our neighborhood once a week figuring if it stalled, I could still walk home. Nowhere in my mind did it occur to me to sell Mom’s car, though.

            Then sometime last week a reckless (or drunk?) driver scraped the side of the car, leaving dark paint transfer, but no note admitting fault. It became obvious that after a year-and-a-half, I needed to sell Mom’s car. I called my brother and sister to let them know of the damage to it, and my decision to sell it, but they have no emotional attachment to the vehicle. My husband and son revealed that the car reminded them more of those final months of Mom’s life—doctor’s visits and ER runs, than the wonderful trips to Shreveport.

            And so yesterday, I made certain to transfer the St. Christopher clip Dad had placed on the visor into the jewelry box that contains his favorite watch and college ring, and then we spiffed up Mom’s car one last time before taking it to the dealership. It will take me a long time, I think, before I’ll look out toward the front of the house and not miss seeing it parked on the curb.  

 

 

Copyright 2014 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

“Hankies”

         A box of Kleenex can survive in our house for six months, sometimes even a year. Not because we never get colds or fight allergies, but because we use old fashioned handkerchiefs. These little square pieces of cloth decorated my childhood. My little purse, clutched in my hands as I sat in the church pew, contained a rosary, a nickel for the offering basket, and a lacy handkerchief. Easter baskets often included an embroidered square that I folded neatly next to my white gloves, resting both treasures in my top drawer along with my Troll dolls and Rat Finks.

lace

embroidered

         My father always carried white handkerchiefs, first during his Air Force years, and later as a deputy sheriff. I practiced my skills with the iron using his hankies, which puckered into tight, crinkled balls from the dryer’s heat. Each handkerchief required sprinkles of water, a hot iron set at cotton, and   rhythmic back and forth pressure to smooth them wrinkle free. I remember pressing out the rumples, and then folding the fabric in half. Using the tip of my iron, I’d set creases, fold again, crease again until each handkerchief stacked neatly into a regimented pile. The television kept me company during this chore, and I found it therapeutic in its repetition. I remember the pride I felt when my mother let me iron the sheets, and when I graduated to doing more complicated shirts and dresses, I felt honored with the trust this chore represented.

Dad's practical white;
Mom's new stripes

         My mother inherited Dad’s handkerchiefs. When she resided in an assisted living facility, she’d leave one here and another there. Some found their way back to her apartment because the aids trailed after her and swept them from the ground when she dropped them. Many never found their way home, so within a couple of months I raided her stash of new hankies that Dad had purchased, but never used. Before she misplaced all of his handkerchiefs, I decided to buy new ones just for Mom. It took me a while, but eventually I located nice sets at Kohl’s.

         Hankies fit Mom’s needs better than tissues. When her neurologist tried a new medication on her a few years ago, she drooled continuously. A wimpy tissue would never have absorbed her output! Hankies also offer a level of softness superior to tissues. Mom can blow her nose all day when she has a cold and never come out looking lie Rudolph. In a pinch, we’ve grabbed a handkerchief for a rag to sop up spills as well as using them instead of paper napkins.

         Recently, I’ve found myself tucking one of Dad’s hankies into my pocket or purse as I head out the door. I found comfort in clutching these soft squares of cloth as I sat through three funerals this winter. In a way, I’m carrying a part of my father with me in times of great sorrow. Within this society of disposable tissues, mops, dusters, and diapers the resilience of my father’s handkerchief symbolizes the continuity of life and traditions, even one as small as a hankie.   

Copyright 2012 Elizabeth Abrams Chapman