“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