"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

“A Follow Up”

            I didn’t meet a new doctor today. Instead, my “original” new internist decided not to retire yet. He is the physician who treated my mother as she progressed from Stage 3 to Stage 4 and finally Stage 5 of Huntington’s disease. Every appointment he spent time with not just her, but with me as well. He checked with me on my emotional and physical demands as caregiver. Whenever I left messages with questions or needs with his nurse, he personally returned the call, speaking first with Mom and then with me. We weren’t his first Huntington’s disease family. Because of that, he prepared us for the tremendously cruel course that lay ahead for us.
            For my new readers unfamiliar with Huntington’s disease, it’s a rare, inherited disease that progressively causes degeneration of nerve cells in the brain. There’s no cure. There are limited treatments. This disorder brutally steals every facet of the patient’s life. It destroys a person’s ability to walk, talk, and think. Victims often choose suicide before the illness progresses too long. Because muscles no longer work properly, many people with HD aspirate food, water, or medication and die from complications stemming from pneumonia.

            My mother went into the final stage of HD. She could no longer swallow. She starved to death.

            In the ten years since Mom’s passing, I continued going to my own physician since my visits comprised of one annual physical. Every time I drove to that office on the other side of town, I’d pass Mom’s doctor’s office just five minutes from our home. Last year, when my medical needs shifted to more frequent follow-up appointments due to new medications, I decided moving to a doctor closer to home really made sense. Imagine my pleasant surprise when I learned Mom’s internist still took new patients. Then disappointment hit when he announced his retirement. I don’t know why he postponed leaving, but am thankful to have a longer connection with someone who helped me through my hardest years.

 

Edna Thompson Abrams August 2010 (Mom)

Copyright 2023 Elizabeth Abrams Chpman

              

 

“Tomorrow’s Quest”

 

            About a year ago, I changed my primary care physician. My previous doctor, one of my college roommates, had a practice on the other side of town that over the years became a life-risking drive depending upon the time of day of my appointment. Sometimes the half-hour trip to her office turned into a nightmarish two hours of stopped traffic due to accidents on the highway. Then after my last visit, my car ended up being shoved from the rear (no damage) by an inattentive driver.

            After that experience, I decided to change to my mother’s internist. His office, walking distance from our house, means my blood pressure checks out normal at each visit! Having gone to a doctor who used PA’s most of the time, I now see the doctor himself at every visit. Because he cared for Mom through all of her Huntington’s disease with constant grace and consideration, my appointments with him so far have been less stressful than if I’d changed to a totally unknown doctor. In June, I injured my wrist when I tripped doing yardwork. He checked me over, ordered X-rays, and scheduled me with an orthopedic specialist to give me feedback on the arthritis in my wrist. He informed me that he was retiring within the next few months and shifting me to one of the other doctors within his group.

            Tomorrow, I will meet my new internist. The group has several doctors within the practice, and my retiring doctor said he matched me with the person who’d give me the best care for my needs. A quick online view shows she’s young with training in India, England, and the United States, just like my current physician. She focuses her care on thyroid, cholesterol, and hypertension all the issues that plague me at this point.  

            My mission for tomorrow is to begin a new path for better health. Wish me luck!

 

Copyright 2023 Elizabeth Abrams Chapman  

“Another Step”

         Last week I pulled out the calendar to check any appointments for my mother and found that three different doctors had scheduled her for checks. Two required blood work prior to the visits. Counting quickly, I realized that I would have to drag Mom into and out of the car ten times within a couple of weeks. A year ago, this kind of schedule wouldn’t have given me pause. Not this time around.

         I called the nurse for Mom’s Internist and told her that after each lab run or doctor’s visit, Mom has set-backs. The last few times she hasn’t fully recovered.

         “Is there some service that we could use where a nurse can come to the house to at least draw Mom’s blood?” I asked once I explained my concerns.

         Now, this nurse has always helped me load Mom into the car after her doctor visits. She knew exactly how difficult movement can be for Mom. She paused as she considered my request, and then said, “I think it’s time for us to start your mother on home health care. I’ll take care of the initial paperwork. You’ll get a call from the company we like to use within a couple of days.”

         And so began a flurry of activity. By Monday, a nurse from the home care service went over the professional help offered by their company. Nurses, occupational therapists, physical therapists, and aides for daily living all applied to our needs. The next day, an occupational therapist sat at our table after looking at the accommodations we had in Mom’s bathroom and checking out how she slumped in her wheel chair. She jotted down a list of immediate changes and brainstormed what we’ll need as Huntington’s disease continues its progress.

On Tuesday, a physical therapist stated that Mom’s muscles are better than his other HD patient. He has stretching exercises that he will try with her. Of course, he’ll teach me how to do them so I can continue working with Mom if this service only lasts sixty days. He also showed me a different way to lift Mom that doesn’t strain my arms or back! I hooted and punched the air with my fist after successfully mastering this new maneuver. The PT suggested a different type of toilet seat, too. That arrived yesterday. I haven’t tried using it with Mom. I figure she’s endured enough changes in the past few days. When the PT comes next week, we’ll tackle the toilet.

On Wednesday, the company that has home visiting physicians sent out two nurse practitioners to conduct a full examination on Mom. One of the nurses already sees three other HD patients! Suddenly, I didn’t feel alone in this journey. She asked all of the right questions, made all of the right observations, and I relaxed instantly knowing that she’s been assigned to Mom’s team. These nurses took Mom’s blood while they were here. No more trips to the lab! Using these visiting physicians means Mom will no longer see her Internist, a doctor we’ve trusted and admired. However, his office is the one who made the decision that we needed to make this change. I no longer have to worry about dragging Mom into a doctor’s office for well checks. If she has a cold or bladder infection, someone will come here to her. Even with this first visit, the nurse noticed fluid in one of Mom’s lungs. She ordered a chest x-ray that will be done here. She wrote a prescription, explained to me how to use a nebulizer, and said aspiration is our biggest worry. I figure she saved us another ER visit by her intervention. Immediately, I can see how this type of program could actually reduce costs to programs like Medicare. These nurses or a doctor from the team will automatically visit Mom once a month. Of course, Mom will still have to see her specialists—the neurologist and nephrologist—but if she’s ill, these doctors will come to the rescue. Maybe we’ll make it a year without an ER run.

Thursday brought another nurse to double check Mom’s lungs after she checked Mom’s blood pressure, pulse, oxygen and temperature. She’s been assigned to swing by every week. She has also worked with HD patients and made the suggestion that we needed to thicken all of Mom’s fluids, which we haven’t done yet. Mom aspirated water about a week ago (the cause for her current lung problem). This nurse said Mom looks like she’s drinking fluids fine— sometimes—but not always. The thickener will help on those bad days. Since we have no way of knowing when that happens, we just have to add it to everything. A positive about the thickener is that it does carry a few calories!

Friday brought an aid to help with Mom’s showers. When Mom first moved in, I could manage her showers or baths alone. Gradually, her legs weakened to where David had to be the one to give her baths because he had the strength to lift her out of the tub. Recently, she’s become so rigid that David decided we’d have to go back to having her sit on the shower bench. Her stiffness makes it impossible for one person to get her into the shower alone, so Mom had to wait until David’s return from work to bathe. Now she can get one during the day, when she’s not as fatigued.  

With all of these experts whipping into our household, we’ve realized that many of the devices we purchased for Mom’s use two years ago are no longer the best options. Her wheel chair may need added cushions, if it isn’t replaced altogether. The toilet seat and shower bench both need different models to accommodate her continuing loss of mobility. Three members of the team mentioned changing out Mom’s bed for a hospital bed. I told them we needed to let things settle a little before making that major change. Mom loves her white wicker head board, and I don’t want to force too many modifications on her at one time.

I find that I still fall into bed, exhausted, each evening. However, all of the worries about whether I can handle the next level of Mom’s care haven’t nagged me this week. We no longer face this disease alone.    

 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