"Have You Been Tested?"

          A couple of months ago, I headed to the doctor’s office for my yearly physical. This last visit, I scheduled an appointment with my doctor’s Physician Assistant in order to get the time and date I had someone available to watch my mother. Since I only go to the doctor once a year, I may not see the PA for a couple of years. She’s always very friendly and eager to catch up on my life changes. We all know that many variables impact our physical health, and these little chats can help the doctor flag possible future problem areas.

This became obvious fairly quickly when the PA queried, “Last time I saw you, you were getting ready to retire. Did you get to?"

“Yes!”

“I’ll bet you’re enjoying all of your free time.”

“Well,” I shifted back into my chair to get a little more comfortable, “I’m taking care of my mother now. She’ll be eighty-two in January.”

The PA tilted her head and smiled, “That’s good, that you can have her live with you.”

“It’s more stressful and demanding than I thought because of her HD, but we’ve adjusted to her routine, and we’re managing now.”

“Huntington’s? Your mother has HD?” she grabbed the computer mouse and checked my file. “Is it in your file?”

“I think so. Mom used to come here, too. We moved her to a doctor closer to our home a couple of years ago to make it easier on her.”

“Have you been tested?” she asked as she clicked a tab.

“No.”

She looked at me, blonde eyebrow raised in question.

“No. If I’m not tested, I have a fifty percent chance of being HD free. I can live with those odds. If I get tested, and I’m positive—well, that takes away my hope, you see?”

“If you do test, you could also know for certain that you don’t have it.”

“Or I’d know for certain that I do.” I shook my head. “For now, I have no symptoms. It may seem like denial, but I don’t have HD as long as I’m symptom free. I think it keeps me focused on the present, on dealing with my mother’s decline. That’s enough for me to handle right now.”

And with that our conversation shifted to my test results.

A few weeks later, I friended a young woman on Facebook because I saw one of her posts on a HD page. I’m slowly getting to meet people who either have HD or who care for family members with the disease. This ever widening network of optimistic experts guide my reading and keep me informed of what’s going on in the Huntington’s Disease community worldwide.

This new “friend” quickly emailed me with a brief background of her personal experience with HD, explaining that she (along with her mother and her sister) all have HD. At the end of her message, she asked, “Have you been tested?”

I found myself explaining again my hopeful logic on not having the test done. My siblings have also decided to forego testing unless we show symptoms. I don’t know if our ostrich approach to HD holds any logic, but dealing with a degenerative disease with little treatment options and no cure is overwhelming when handling my mother. I simply cannot add myself or my siblings into the mix right now.

My admiration for those at risk of developing HD who get tested grows with each person I meet who states, “I tested positive.” These courageous men and women (many ten or fifteen years younger that I) handle a life certainty with a level of determination and energy that’s daunting.

My view of HD skews to my mother’s experiences: extremely late onset, problems mainly with depression and anxiety, and relatively mild chorea. As she’s moved into the later stages of her illness, she’s struggling with rigidity, limited mobility, and problems with speaking and swallowing.

If Mom has to make a decision, she can’t unless we offer only two choices to her. So today, when we took her shopping for Christmas gifts, I’d say, “Do you want to give Paula clothes or something for her home.” Then it becomes a matter of always selecting two items until she settles on one. Mom adheres to a rigid schedule based upon the order of her daily routine, not time. I don’t think she can judge time at all anymore. However, for the majority of her day, her cognitive functioning stays sharp. We’ve learned how to structure conversations about the news, movies, or television episodes where she can comment in short phrases. Her problem doesn’t stem from not having something to communicate, but in having the ability to physically form the words.

I know from the research I’ve done that my mother’s progression through her illness is relatively stable and gradual. Some days, when I feel frightened about what comes next, I take strength in the fact that she’s not the typical HD patient. Perhaps that’s another reason I haven’t tested. I know that if I carry the gene, I’ll probably have an earlier onset of symptoms than my mother. Chances are higher that I’ll progress through the disease at a faster pace, and need more help at an earlier point in my life. Because of my current age, showing symptoms will happen sooner, rather than later.

Every day I record my thoughts, feelings, and reflections in a personal journal. If I don’t have HD, I hope that my experiences with my mother will help other caregivers. On the other hand, if I do have HD, my journals should reflect a log of someone who is pre-symptomatic and show the shift into the earliest evidence of the disease. By not testing, by not knowing for certain, I feel my journals may someday help another family.  

Copyright 2011 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