"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