“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

“Sassy”

her head tucked   

under the curve of her paw   

she snuggled one last time   

into her blanket   

her butterfly breath barely audible   

she sighed   

her soft and gentle spirit   

padded away into night’s silence

Copyright 2012 Elizabeth Abrams Chapman

“A Melatonin Nightmare”

         Sleep escapes many people who suffer from Huntington’s disease. A few years ago, Mom only needed a little Lexapro and Lorazepam to take the edge off of her depression and anxiety and allow her to have a full night’s rest. Eventually, Mom’s neurologist dropped the Lexapro and added Neurontin and Trazodone in low doses to her daily mix. About eight months ago, Mom’s sleep patterns began to shift. She started staying awake hour after hour.

         At first, these late nights didn’t affect Mom’s overall behavior or personality. She spent the day after her insomnia attacks actually awake. While David and I endured sleep deprivation, Mom seemed to carry out her normal daily routine after a sleepless night. The occasional wakeful night slowly shifted into a pattern of Mom staying awake four or five nights out of seven. A quick call to one of her doctors meant a change in the dose of one of the medications. Life went on.

         In January, the neurologist adjusted Mom’s Trazodone for the second time. Then a couple of months later we upped her night dosage to 100 mg. During the last couple of weeks, insomnia invaded Mom’s bedroom yet again. With these last bouts of sleeplessness have come changes in Mom’s personality. The longer she goes without sleep, the meaner she becomes. Her tongue, often tied by HD during the day, loosens during these endless nights. Sometimes her anger and frustration brings along paranoia. These changes frighten me because I know her disease wins on these nights.

         After a bad round of insomnia last week, I searched different HD sites to compare Mom’s experiences with other’s fighting this disease. It didn’t take me long to realize that wakefulness and restlessness plagues almost everyone with HD. Then I stumbled upon references to using melatonin. I gave Mom’s neurologist yet another call to ask about this OTC option.

         “I was going to suggest melatonin to you,” he said when he returned my call. “I’m going to let you experiment with the dosage you use. It’ll take a couple of weeks for you to find the right amount, but call me if she doesn’t respond at all. Actually, call me in two weeks no matter what.”

         Running errands at The Forum, I swung by Target to see if the store carried melatonin. Sure enough—one single bottle remained on the shelf for a 5 mg dosage.

         The first night Mom had no change in her sleep. After that, she zonked out and stayed asleep all night long. She also took naps during the first few days, something she rarely does unless she’s using Benadryl. David commented first on the fact that Mom didn’t recognize him the other morning. He’s recently shaved off his beard and mustache, so we decided her confusion wasn’t anything to worry about.

         The nightmare began suddenly today, five days into taking the melatonin. Mom woke up after a full night of sleep with more energy than I’ve seen with her in  days. She fed herself eggs and later asked for pancakes, which she also managed to eat on her own. She chatted with me about the episode of The Dick Van Dyke Show since this installment showcased both Van Dyke brothers, who went to school with Mom. Then after lunch Mom’s attitude suddenly changed as I helped her in the bathroom. She became suddenly angry and told me I was “useless.” Within minutes, she said she didn’t know who I was and began begging me to take her “home.” She asked for the “other orderly” because she didn’t know or trust me.

         As soon as I had her settled for a few minutes, I conducted an online search and learned that some people get confused if their melatonin levels are too high. Once David gets home, I’ll run to Walgreens to pick up a lower dosage. We’ll start the slow process of discovering the level that will help her sleep all night while still keeping her lucid. I understand now why her neurologist said we may have to make adjustments for a couple of weeks. I just hope that this nightmare ends soon.     

  Copyright 2012 Elizabeth Abrams Chapman

“Joining the Gym”

        I ended my last gym membership almost ten years ago when Mom moved to San Antonio. Prior to her relocating, I spent an hour or so every day after work doing cardio. I loved swimming laps, spinning on stationary bikes, or jogging on a treadmill. I moved competently through the weight machines like a pro—alternating upper and lower body workouts that left me slim and trim.

         That special hour I allocated to myself after a day of work shifted to visiting with my mother when she moved into her apartment. At first, I didn’t really miss the time spent at the gym because David and I still managed to hike to the park. At that time, we had a grocery store in the neighborhood and often walked over to pick up odds-n-ends. Some weekends, we took out our bikes and rode down 1604, crossed I10, and headed to St. Hedwig, making a loop through the back roads. Needless to say, I had way thinner thighs back then!

         As Mom’s needs changed, I found less and less time to take care of myself. It amazes me how people always advise me to “take care of yourself” and to “have time for yourself” because that’s almost impossible for a full-time caregiver. You catch moments throughout the day and evening. If you want time with your spouse or other family members, you end up sacrificing even more private time. As Mom’s Huntington’s disease progresses, I’ve found it more difficult to find large chunks of time for any activity. Finding time to write becomes a major feat where I often write only a few words at a time.

         When my son decided to move back home temporarily, he made me promise to join his gym, Lifetime. He knew that I’d talk myself out of a workout without a partner to encourage me. With his help, I think I’ll carve out an hour or so three times a week.

         My gym membership came with a free consultation with a trainer. The buff ex-Marine asked me for my personal goals. I said I wanted to wear my wedding band again. I don’t care about my dress size or hip circumference. It doesn’t matter if I have a little jiggle in my thighs. And I told him I desperately needed to reduce my stress. He seemed perplexed that I didn’t aim to drop a ton of weight, but I insisted that I’m looking for a healthier me.

         This week, my son and I have managed two trips to the gym. Both times I’ve headed for the pool to do laps (not as many as I could do ten years ago, but at least I’m moving). Then I’ve slipped into the sauna to bake for ten minutes, and I’ve followed that with running the hot tub jets over my aching arms and back. Then I take my time dressing and sink into a leather chair to wait for Paul to surface from his routine. I actually sit. I don’t think. I pause. I breathe.  

Copyright 2012 Elizabeth Abrams Chapman

“In a Nutshell”

         The last month’s challenges found me floundering under waves of unexpected events that pounded me down and under every time I surfaced. As I struggled for shore, and surer footing, I spun words through my head with the goal of sitting down to write, but another wave would tumble me head-over-heels, I’d submerge and scrape along the gritty ocean bottom for a few suffocating moments, only to briefly surface again.

         I decided last night that my sanity required returning to my blog. And I vowed to condense the trials of this last month into a nutshell, not to diminish the importance of the experiences, but to gain some perspective in my life again.

         Having the arbitrary decisions of others invade into my life spun my “control freak” personality into a frenzy of anxiety. I became the Tasmanian devil, a whirlwind of angry and uncontrolled energy that plows through every obstacle in its path. I will spend weeks apologizing to my loved ones for my frantic behavior.

         During the past month, we moved my son back home because the owners of his rental house decided to sell. About midway through the move, they notified us that they had “changed their minds” and he didn’t need to move after all. But it was too late. We’d already rented storage units, purchased bins and located moving boxes. We’d already made the mental shift of bringing our son back home for the remainder of this year. Then a second punch hit when our son’s sore throat morphed into swollen glands and tonsils. A quick run to a med clinic left no doubt to the diagnosis—mononucleosis. The illness left him sleeping twenty hours of each day, weak and unable to swallow, barely able to even drink. Driven by worry and unable to feel control over anything, I focused upon getting the move completed as quickly as possible, and almost drove everyone crazy.

         Now our lives take us on a new and promising pattern. We must integrate the ebb and flow of my mother’s Huntington’s driven days with the bass throb of our son’s music career. The rhythm of our daily dance will change, and I don’t know how long it will take before we synchronize our steps.    

Copyrigh 2012 Elizabeth Abrams Chapman

"Memorial Day"

Karl F. Abrams

      The year my father spent in Vietnam, we moved to Danville, Illinois because Mom wanted to be closer to her family. My uncle, Bob Thompson, still lived in England in the 1960s, visiting the states once every few years. Uncle Bob left his small hometown in Illinois during WWII and ended up being a liaison officer between our military and the British forces. In the middle of all the bombing and deaths, all the struggles to survive, he fell in love—with the country. He rarely spoke of his role in the war but always recounted wonderful stories of the people he met. My other uncle, John Thompson, spun a tale for me when I asked about his scars. He said he parachuted behind enemy lines during the war, but the Germans shot him early in the battle. He told me how the soldiers checked for survivors, killing them if their wounds were too serious, or taking them as prisoners. He stated that he lost consciousness before the German’s came to him and that they left him for dead. He assured me our own soldiers rescued him when they regained the zone in battle. For all my life, I felt relief that my Uncle Red managed to survive for I loved him dearly. Who would have had the patience to teach me to whistle? Who would have treated me to A&W root beer floats? Who would have laughed at my silly jokes while I sat on his lap at family picnics?

    A few years ago, I learned more of Uncle Red’s story. The part he kept hidden from a nine-year-old child. The German troops didn’t mistake him for dead. They picked him up and imprisoned him in a Nazi P.O.W. camp. I don’t know if he didn’t want to answer the inquisitive questions of a child, or if he simply preferred not to mention this part of his life. I know both of my uncles down played war and its repercussions. I believe they tried to make it less frightful for us as we waited for Dad’s return from his own war.

      So when Memorial Day ceremonies play out on television, I think of the young man who carried scars into the night, and how he tried to protect me from my own fears as my father’s battle played across another ocean. Isn’t that the soldier’s way, to offer protection?

      Each of us has an Uncle Red or Uncle Bob, or other family members sent to distant shores because of the power of duty. Luck followed our family because each of these men returned home. Many families will spend today honoring those who didn’t survive. And I wonder about all the little girls who never learned how to whistle because their Uncle Red died on a battle field.

Copyright 2011 Elizabeth Abrams Chapman