"Running on Empty"

           My son voices his worry that David and I will sap our energy too much in caring for my mother. He knows about the middle of the night aid to take Mom to and from the bathroom, realizes she wakes up at the crack of dawn; he understands her need of someone being constantly within calling distance. When he expresses his concern, I remind him we spend a huge portion of each evening enjoying our own interests. We spend time together watching something mindless on television while munching popcorn.

         But I do worry about those days when I’m snapping at everyone and everything because that’s an indication that I’m feeling neglected or overwhelmed. When my siblings come to give us a break, we try to sleep late and head out of the house to our favorite places like browsing through the shops in Gruene, Texas. If my brother or sister arrives early on a Friday, we sometimes escape to the cabin in the hill country. That perfect retreat always offers the respite we need. If we don’t get a long break, we find ourselves overtired.

         I love the advice everyone gives about David and I needing to take care of ourselves and get adequate breaks. What people don’t realize is that unless someone volunteers to come over to sit for an evening, we can’t take off for a stroll through a mall or an evening movie. We count ourselves fortunate that our son lives in the neighborhood. He spends an incredible amount of time “hanging” with Grammy. If I have a doctor’s appointment, I know he’ll come over. I don’t like to overuse my son, though. Is this a normal response? I don’t know. I fear the months in the future when Mom’s needs will increase, when my need for breaks won’t fall into the “occasional” category. I think on some level, I don’t want to misuse my son’s offers for help now because I may need him more in the future.

         As we enter the second year of caregiving, we’ve reached our stride. This morning, I ran Mom’s bath while David started his pre-work routine. He stepped in to help Mom into the tub. While I stayed with her as she soaked in her bubbles and listened to her new Susan Doyle cd, David packed his lunch. Then he returned to help lever Mom out of the tub, dashing from the room to get dressed while I toweled Mom dry, applied lotion to her skin, and dressed her. Entering the family room, we found David already munching on his morning cereal.

         Our lives have a steady routine that flows most days in surprising harmony. Those days where I can’t do anything right for Mom sprinkle throughout the month. Those moments when she drives me crazy because she doesn’t want anything I’ve cooked happen infrequently. Those nights where we get up two or three times with her occur no more than once or twice a week. So, for now we’re holding our own.

         And when I find that we’re “running on empty” I think we’ll fall into music, or books, or hobbies to recharge ourselves.     

Camera in hand!

Copyright 2011 Elizabeth Abrams Chapman          

"Visits with my Brother"

 

         Once a month, my brother toils through the after work Houston traffic to make the drive to San Antonio. His little red car pulls into the front of our house a little before 9 PM, and he lopes into the front door with a broad smile. He ignores Koi’s yapping as he heads straight for the spare bedroom to deposit his bag. My mother, in anticipation of a visit from Charles, usually fights to stay awake on the nights of his arrival. They’ll exchange a few words, a hug and kiss, and then she’ll ask one of us to take her to bed.

         Mom musters extra energy for Charles’s weekend visits. She’ll pick a favorite restaurant for an early lunch and offer to pick up the tab for all of us! She’ll sit on the couch with my brother, watching the movies or shows he prefers. She’ll haltingly chat about her health and ask him about his life. A huge part of the time, though, they sit in comfortable silence.         

         Happiness oozes from my brother. He lives a simple life. He enjoys the little things that come his way and never wastes time bemoaning life’s travails. He hates asking others for help, yet he is the first one to offer assistance if he can.

For now, I treasure the weekend visits with my brother. His presence means we get time. Today, after my mother treats everyone to lunch, David and I will head out to trim hedges and clear out the front garden bed, chores we could do individually during the weekends when my brother doesn’t visit, but which we enjoy doing together when we can.    

         With Huntington’s Disease, each of us have a 50% chance of inheriting the disease. My mother’s late onset means that although we may be symptom free at this time, we could begin expressing the early symptoms soon. I try to prepare myself for the fact that all three of us could end up dealing with HD again, but I dread the thought of Charles being affected. I guess because he’s my “little brother” I long to protect him from this hardship. He’s single and doesn’t have a high income. If HD impacts his life within the next few years, it will wreck the balance of his world.

Copyright 2012 Elizabeth Abrams Chapman