"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

"The Last Dance"

  On November 4th, I found myself sitting outside the door of my mother's hospital door, weeping. The nurse huddled next to me, looping her arm around me in sympathy as I cried. I couldn't get my mother to eat, or drink, or take medication. Whenever anyone placed something in her mouth, she pushed it out with her tongue, or let it sit with a slack jaw until it spilled from her lips in a nasty pool of drool. My mother's sudden inability to swallow anything caught me unprepared. The week before, she ate her pancakes swimming in syrup, drank her hot chocolate Boost laced with Carnation Instant Breakfast. She devoured a bowl of homemade split pea soup loaded with onion and bacon, and asked for her favorite, spaghetti. Within a period of a few days, Mom's tongue insisted on doing the opposite of what she needed in order to survive. Anything placed in her mouth got uncontrollably shoved right back out.  

When I called to have the home health care nurse check Mom because her fluid intake dropped so much within a twelve hour period, the nurse suggested that Mom may have had a urinary track infection. She'd had other patients exhibit confusion and passivity along with the swallowing problem. We began enticing Mom with cranberry juice, made certain she drank more water, and watched her carefully. By the next day, Mom only drank twelve ounces instead of her usual thirty-two. She barely ate any food and asked often to go "home." When she needed to use the restroom around 11 o'clock that evening, I noticed her hands felt cold, her legs looked shrunken. We immediately tried to get her to sip some water, but she pushed her tongue against the straw instead of drawing the tube into her mouth. Finally, we tried using a syringe to place fluid into her mouth. She let it pool loosely until it trickled from the corner of her lips. Alarms rang. We decided not to wait for nurse's visit scheduled for first thing the next morning. Instead, we warmed Mom in her favorite blue robe and rushed her to the ER once again.

  Hospital time matches nothing in the outside world. Every minute passes with excruciating slowness. In the four hours that it took for the nurses and doctor to run tests and process everything for Mom, she'd shrunk into a withered prune. The skin on her hands creased into ridges. The pads of her fingertips changed from smooth to wrinkled surfaces. Her hands lost all heat, and when I held one I thought, "She's turning to ice." Mom's legs kicked about in anxiety as her chorea surfaced with the stress of the situation. I watched the skin on her shins pull tight over her bones while her calves puckered. Whatever fluid her body contained pooled toward her center, leaving her extremities cold as death. Eventually, an IV relieved Mom's dehydration. By 2 PM, her hands and feet thawed to room temperature. Her sunken cheeks still looked skeletal, but some color splashed across her face. By the second IV and round of antibiotics, Mom could eat a few spoons of the pureed pork chops and mashed potatoes the dietitian provided for Mom's lunch. Medication still resulted in a battle, though. The nurses left it up to me to administer the pills because Mom wouldn't or couldn't cooperate with them. This troubled all of us, and so the nurses contacted the on duty doctor and requested Mom have a swallowing evaluation performed as soon as possible. Within the hour, the specialist wheeled Mom down to XRAY for the test. The specialist explained to me that one of two possibilities appeared to be happening with Mom. In the first scenario, Mom's slightly elevated white blood cell count could indicate a urinary track infection in it's early stages. She proposed that Mom's HD made her susceptible to more confusion and physical symptoms like the swallowing problem. If that was the case, once Mom rehydrated and responded to the antibiotic treatment, she should return to her baseline swallowing--pills with foods like pudding, pureed meats and veggies, pasta cut in small pieces. I clung to her hopeful suggestion because I knew all too well the second option the specialist would offer to me. Mom's HD had shifted into a new level. Her frequent tendency to do the opposite from what she wanted (like pulling back when she wanted to move foreword, or not being able to move at all when she's trying to shift out of her wheelchair) could now be affecting her ability to take something into her mouth, maneuver her tongue to pushing the food back into the throat and then swallowing. She said Mom either couldn't or wouldn't move her food in any direction but forward and out of her mouth. The woman asked if we'd discussed tube feeding as an option with Mom. I assured her that we had, and that Mom had made it clear to everyone that intubation was not an option for her.

  We have lived with the dance of Huntington's Disease for ten years, the slow and inevitable death that carved away aspects of my mother's physical abilities along with her personality. Most days, her spirit stayed strong, but clouds of vacant thoughts sometimes blurred her eyes, and for short periods of time, Mom vanished. During the end of October, she disappeared for longer and longer periods. In her place were empty green eyes that disengaged by looking into the corners of the family room. When the hospital suggested we set up hospice, I knew that our lives would change once again. 

  In the weeks that followed, Mom rallied several times. A couple of mornings, early on, she ate an entire pancake or scrambled eggs. When she couldn't manage to suck through a straw, we spirited water, colas and Boost into her mouth using a syringe. A week after Mom's hospitalization, she began spending her entire day in her bed. We moved a television into the room and a comfortable rocking chair for me to use. Days strung together with hours viewing Mom's favorite television shows. I'd search Netflix every evening to line up possible movies for the following day. The little amounts of food Mom ate during those first days dropped off rapidly. Each day she ate half of what she'd eaten the previous meal. She never regained her ability to draw from a straw, and so one of us tempted her with fluids a syringe-full at a time. The hospice nurses explained that we fed Mom more for our own emotional needs, and that eventually her body would let us know that she wouldn't take any more food. The last thing I fed my mother was a bowl of ice cream--the food of her nightly ritual for most of her adult life. One afternoon she ate about half a bowl, but by that evening she refused to swallow any. Nothing enticed her to eat after that point, and I feared she would aspirate something if I pushed too hard. Eventually, Mom followed the same pattern with fluids. Weakness swathed her, and I became uncertain that she'd make it to my brother's promised Thanksgiving visit, but Mom rallied the moment he walked into her room. She smiled and held his hand, pushing her energy forward as he sat and talked to her. When he left the next day, she slept for hours, waking up only for minute amounts of water.

          The nurses assured us repeatedly that Mom felt no pain. They explained that the brain shuts down pain receptors as the body starves. I know, without a doubt, that this was true as Mom slowly melted away. I reached out to close friends and family members during those last days, I relied heavily upon the hospice nurses, social worker, and aid who energized me with their genuine compassion for our family. I found myself longing to sit down to write and somehow find control over everything.

  Yesterday, I put Sleepless in Seattle on the television, pulled my red fleece blanket up to my chin, and stroked Mom's brow as she slept for a second day in the row. Her breathing, slow and steady in slumber all day long, changed into a rapid pant. I called David into the room when it didn't stop and had him sit with Mom while I called the nurse. She suggested I start the morphine and said she'd be right over. An hour later, Mom's rapid breathing took on a little gurgle. When the nurse arrived, she administered a second drug and another dose of morphine. She examined Mom, told me to call family to get them here, and went over instructions for the rest of the evening. By the time she left, Mom's breathing rate had nearly returned to normal, but that only lasted a matter of minutes.

  And so we began the last dance with my mother.

  In Mom's dreams, she always walked. I like to think she's walking now, hiking up one of the crooked paths behind the cabin. I imagine her twirling in circles, a graceful dance unmarred by Huntington's.

Edna Abrams, November 2011

Copyright 2012 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

“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