"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

"ER"

 

         About two weeks ago, my mother’s internist decided to add Zoloft to her daily cocktail of medications in an attempt to alleviate her frequent bouts of crying and thoughts of dying. I quickly reminded him that he’d tried prescribing Cymbalta for her a couple of summers ago with disastrous results. He assured me that Mom would be fine with this new drug, wrote the prescription, and sent us on our way.

         That Monday, Mom took her first 25 mg. dose, and she did seem less tense in the afternoon. On Tuesday, she didn’t cry even once during the day. However, that night she had the worse episode of insomnia I’ve ever witnessed! She not only kicked her feet back and forth, but also continually threw her pillow and blankets to the floor. She would pull herself into a sitting position by grabbing ahold of her wheelchair, and then fling herself back onto the bed. This went on hour after hour. Finally, after receiving her morning doses of her medications, she fell asleep.

         When Mom woke up around noon on Wednesday, she couldn’t speak at all. She could only manage to grunt in response to my questions. I tried to feed her by spooning scrambled eggs into her mouth. She clumsily shoved the food around, her tongue lacked coordination. She couldn’t swallow the soft food. Once I noticed she couldn’t even suck on a straw, alarms sounded. I began making calls to Mom’s internist—leaving messages on the voice mail because it was their lunch hour. Each time I called, I added another symptom to Mom’s growing list. Finally, I reached someone and was told to take Mom to the ER right away.

         By this time, her body had grown completely rigid. My son and I muscled Mom into the car and drove to our neighborhood hospital. She’s already in their system, so it didn’t take long to get the preliminary paperwork done.

         “As soon as we have a bed ready in the ER, we’ll get your mother back. It should only take a few minutes.” I felt a little calmer with the assurance that Mom would be bumped ahead of the other patients in the waiting room.

         Then a teenaged girl rushed in, followed slowly by a young man on crutches. The bandages on his foot couldn’t begin to sop up the flow of blood that gushed from him. A river of blood trailed from the sliding glass doors, across the floor, and to the nurses’ station. Someone rushed up with a wheelchair, and the blood pool continued to grow under the chair. Two nurses dashed to his aide, and the security guard fetched a custodian, who calmly began cleaning the area.

         “I’m sorry,” a nurse came over to us, “we’ll see your mother as soon as the area is cleaned.”

         So the promise of seeing my mother immediately ended up taking about forty-five minutes.

         Eventually, we wheeled Mom back into a room where the usual ER triage began. Blood pressure, heart rate, oxygen level, EKG, blood work all started quickly at that point. The doctor ordered a CT scan, x-rays for her lungs, and a urine test looking for any reason for Mom’s condition.

         I think I asked everyone I saw, “Could this be a reaction to Zoloft? She just started taking it. Could she be having some kind of reaction to it?”

         No one wanted to make a committal to anything until every test returned—all with normal results.

        Finally, the doctor came to talk to us. To my question about the Zoloft, he answered, “I’ve never seen anyone react to Zoloft in this way. I think you need to talk to your mother’s doctor tomorrow.” However, by this time it had been twelve hours since Mom’s dose, and she had regained her ability to answer simple questions.

         “Do I continue to give her the drug?” I asked.

         “That will be up to her doctor.”

       I made one of my executive decisions that I wouldn’t give Mom another dose without having a long conversation with both Mom’s internist and her neurologist.

        On Thursday morning, I called the internist as soon as his office opened. He returned my message quickly and said that he didn’t think the Zoloft had anything to do with Mom’s condition the previous day. Because I expressed so much concern, he agreed to have the dosage cut in half “for a few days.” My gut screamed that it was too much of a coincidence that Mom had this horrible HD incident within three doses of a new medication, but I couldn’t seem to get anyone else to make the connection! That is, not until Mom’s neurologist called.

         “Don’t put her back on the Zoloft. She’s having an overdose reaction,” he warned.

        “Both Mom’s internist and the ER doctor seemed to think it was okay, but I kept feeling that something wasn’t right,” I told him.

      “For most people, adding Zoloft wouldn’t have this affect,” her neurologist explained. “But for your mother, and the way HD’s hit her brain—along with the other medications I already have her taking, well—it’s good that you stopped the dose. Bring her in on Monday so I can check her over.”

         Exhaustion forced Mom into a deep sleep almost all of Thursday, and I fretted because she didn’t eat any food or drink any fluids for another day. On Friday, she could drink and eat again, but I had to feed her and hold her mug for her. During the weekend, Mom slowly regained more of her ability to move and to speak. By the time her neurologist saw her on the following Monday, she was speaking in short phrases again and could raise her arms up to shoulder level briefly.  

         Recovery comes slowly, though. Before the incident with Zoloft, Mom occasionally couldn’t remember me or David, especially after she had a round of insomnia. Now it’s almost daily that she’ll ask one of us who we are. She’s fixated on wanting me to take her home, forgetting that she’s lived here for eighteen months. The optimist in me clings to the hope that she’ll get more recovery as each day passes. My sister just left after helping us for the past four days, and Mom seemed to improve a little. Maybe she’ll be closer to normal once my brother arrives on this coming Friday.

HD brain on left. Normal brain on right

Copyright 2012 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

"Another Round of Up and Down"

Younger Mom!

         Huntington’s Disease impacts people differently. The more I read, the more I realize that this disease affected Mom much earlier than I’d first thought. For many years, she complained about having “Blue Days.”  Never bad enough or frequent enough to seek treatment, Mom would call sometimes near tears. These lonely days would end quickly, and I internalized the lesson that mild depression “just happens” and you weather through it. Looking back, I believe these downturns may have signaled the early changes HD brings into a person’s life.

         By the time my mother was in her sixties, she began complaining about never going anywhere or doing anything. My father would plan some kind of activity or outing, and my mother would shoot the idea down for some nebulous reason. Dad’s frustration resulted in him giving up on suggesting things they could do together, and Mom grumbled even more about being stuck at home. When they bought the land in the Hill Country, Mom’s enthusiasm returned. She loved planning and tackling each project for the cabin.

         Around this time, her first motor symptoms emerged. While she watched television or sat in the car, Mom would shuffle her feet restlessly. I asked her many times if she could stop, and she’d reply, “Of course. I’m just exercising my legs and ankles.” Then she’d rotate her feet around deliberately for a moment or two and settle down. Sometimes, Mom would suffer from bouts of anxiety. These spells of worry didn’t last long, and again she never even mentioned them to her doctor.

         After my father died, Mom moved to San Antonio and took her own apartment about a mile from our house. She would walk over some mornings and spend the day. She didn’t like driving, though, and began saying that she felt like her perception was “off" when driving. Gradually, other signs of HD surfaced. Mom complained about being “askew” and off balanced. Several times her leg would simply fold beneath her. She went to the doctors about these symptoms, but no one knew exactly what was happening. One neurologist suggested genetic testing because Friedrich’s Ataxia had already been documented in her family (her niece had the disease). He felt it was possible Mom was a carrier and expressing the gene for some reason as she aged. At that point, Mom decided she didn’t really want to know.

         Eventually, a very slight stroke kicked Mom’s HD into temporary overdrive. A young lieutenant at BAMC made the diagnosis when she witnessed Mom’s movements. This physical therapist had worked with an HD family in her short career. The neurologist handling Mom vanished with her for over an hour and came back stating that he really didn’t think she had HD, but he suggested we do the genetic testing anyway. Mom went to a rehab facility to work on her motor skills, but her balance never fully returned. The physical therapists and doctors suggested she “furniture walk” when in her small apartment and use a walker whenever she went anywhere.

         Of course, the genetic testing showed that Mom is a carrier for Friedreich’s Ataxia, that she has 40 CAG repeats, and that there is a third defect on another gene that has unknown impact. This diagnosis, made five years ago, gave us labels. Now we could help Mom make knowledgeable decisions and prepare for her future.

         Over the last five years, HD's neurodegenerative course has touched every aspect of our lives. Mom’s gone from living independently in her own apartment, to an assisted living facility, to our home. Her ability to walk a mile has vanished. She can only take two or three steps with assistance. Her infrequent “Blue Days” gave way to daily battles with depression that medications attempt to control. If she’s gotten enough rest, her personality remains the same gentle, intelligent woman she’s always been. However, insomnia strikes at least once a week, and during those endless nights she morphs into Mr. Hyde. Her usually sharp intellect muddles into confusion.

         The care Mom needs now involves twenty-four hour a day, seven days a week aid. Fortunately, she can still use her hands and arms for eating, but we must do everything else for her. She needs help moving into and out of her wheelchair, which we must push. In recent weeks, Mom’s developed a need to “pace.” She will start in her bedroom, request that we take her to the family room. Within fifteen minutes, she’ll want to go back to her bedroom. This up and down routine continues for hour after hour. By the end of the day, her legs barely move at all, becoming rigid sticks. Mom cries because she cannot stop this compulsion to go from room to room. On these days, she’s certain that she’s dying and wants me to call her doctor to see if there’s something that he can give her.

         This new symptom, the compulsion to go back and forth from room to room, lasts only one very, very long day. By the next day, Mom settles into her usual routine.  Next month, she sees her internist for her six month check-up. If this new behavior increases in frequency, we’ll ask if there’s some medication that may curb the obsessive-compulsive urgency. Her next appointment with her neurologist isn’t until September, but we can always give him a call to see if any of her current medications need adjustment.

Every time a change occurs, I am forced to accept that HD will win in the end.

Copyright 2012 Elizabeth Abrams Chapman

"No Choice"

 

“How do you commit suicide?” my mother asked yesterday. I had perched her upon the toilet and knelt down to pull the Depends she’d worn all night off.

         I looked up at her, “What?”

         “Commit suicide?” she repeated only the last two words of her question as speech becomes more of a challenge for her.

         I eased the Depends down, tossed them into the trash, and pulled a clean pair from the drawer, buying a few moments to think before I answered. “I suppose people pick different ways. Some people take pills, others use carbon monoxide, some use guns, or poison.” I shifted back on my heels to look at her.

         “Can’t the doctors give me something? Can I call and ask?”

       “No, Mom. Not in most states. Definitely not in Texas.” I stood and helped her stand. With her hands gripping her wheelchair arms, I snugged the Depends up over her rump, trying not to notice her weight loss. “Turn.” I nudged her into motion and spotted her as she swung around and sat into her chair.

         “I think I should get to ask the doctor for pills,” she stated very matter-of-factly. “I should decide one night to go to sleep and not wake up.”

         I wheeled her chair over to her bed, perching on the corner so I could talk with her eye-to-eye. “I know you’d like to have the choice, but that’s not our reality.” I picked up her footsies and slipped them over her rigid and contorted toes. “Do you want to get dressed today? Or do you want a clean nightgown instead?”

         “Nightgown.” Mom continued her thoughts as I tugged a clean gown over her head. “There’s nothing else wrong with me, you know. The doctor’s keep saying I’m okay.”

         “That’s right. You’re heart’s perfect. You have great lungs. You’re kidneys are at 43%. You’re healthy except for the Huntington’s. It’s your muscles that just don’t want to work anymore.”

         And so our day began.

      After lunch, Mom asked to return to her room to stretch out with Willie Nelson. Music honky-tonked as I settled Mom into her bed. She now must have her pillow positioned “just so” while the corner of her bedspread has to tuck under her chin.

         “Do you need anything else?” I asked before leaving the room.

         “I’m just trying to figure it out.”

           I sat on Mom’s wheelchair to hear her over Willie’s croon. “Figure what out.”

         “Suicide,” Mom began again. “How am I going to commit suicide?”

         I shook my head. “You aren’t. You’re going to keep living each day the best you can.”

         Mom pointed her finger at me, “I should get to decide!”

         The day continued along this same path, for once my mother’s HD grabs ahold of a topic, it won’t let it go.  

I do not tell my mother that her disease will continue to progress. That today is her best day. Although frustrated by her constraints, my mother’s grown used to needing help for her daily activities. Recently, she grew tired during a meal and complained that she just couldn’t feed herself more although she was still hungry. I sat down and spooned the last few mouthfuls for her. When she finished, she stated, “This is embarrassing.”   

Mom on St. Patrick's Day
2012

        I grieve for my mother every day and on so many different levels. For the majority of the time, she’s extremely aware of her limitations. Frustration with her immobility means she cries daily, and no amount of antidepressants will prevent this ritual. My mother’s confusion, when it happens, circles around vivid dreams that she confuses for reality. Sometimes, the obsessive-compulsive nature of Huntington’s Disease pulls her into a stubborn mindset. This rarely occurs during the day, but some evenings and nights my mother’s irritability morphs into an alien personality with cutting tongue and knife sharp words that stab and wound. Luckily, this demon surfaces rarely and vanishes almost instantly.

         I know my mother wishes to keep dignity in her life. I know she fears the times when she’s confused. I know she hates the moments when she lashes out with poison. Having so little control over the current episodes in her life, I understand why she would spend a day discussing her desire to pick an end time. One can debate the morality of end of life choices, but for a woman in her eighties having a progressively aggressive disease, my mother longs for options that don’t exist.  By the end of the day, she realized that for now she'd pick living over dying, but she wishes that she could have more choices.

        

Copyright 2012 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

 

"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