“A Caregiver’s Pity Party”

I’ve struggled with a foul mood for a couple of weeks now. My patience evaporates quickly, dissipating in a haze of grumpiness that dissolves into weepiness if I’m not careful. I don’t know why this funk has fallen into my life and darkened my aura, but I hope it leaves soon.

         My son suspects that my new thyroid medication has kicked in and slayed the fatigue that flagged my steps. He theorizes that I felt badly, but simply didn’t realize it. Now that I have energy again, I’m hypersensitive to all the things I cannot do because I care for Mom. His ideas made me stop and think, and he’s correct. Fatigue insinuates itself into your life in gradual increments so sneakily that you’ve shifted into slow motion without realizing it. Spending my days with Mom watching reruns on television didn’t bother me because I didn’t have energy to do much more. Now that I’m feeling recharged, I resent being housebound. I feel anger because I can’t just take off on a walk or rejoin the gym. I’m frustrated because I’d love to dash to the mall or spend an afternoon at a museum. It irritates me that I’ve missed important events like Christmas parties, weddings, and funerals.

         I get annoyed when some well-wishing friend or family member makes the “you need to take care of yourself, too” declaration, but never makes the offer to give me the break I so desperately need. Hiring help becomes a quagmire, too. Mom doesn’t like having one of us help her with her toilet, so a stranger helping becomes even more embarrassing for her. Also, I’d have to spend some time with Mom and the respite caregiver together to make certain Mom felt comfortable with a new person—change isn’t always an easy thing for someone with Huntington’s disease. And no one talks about the cost of this kind of service! If David and I want to leave the house for three hours (dinner, a little shopping or a movie), it will cost $60.00 before we even step out the door for the respite “sitter” because the rate is $20.00 per hour if you’re gone for three or more hours. If you’re gone for less time, the rate bumps up to $25.00 per hour. That means if we wanted to escape once a week during this next year, it would cost us $3120.00.

         And so my mood grows darker. Unless a family giving care has an extended network of other family and friends available to help, you become trapped. It doesn’t matter how much you love the person under your care, eventually the demands pull you down and under.

         In our case, we are fortunate because my mother’s the only family member displaying the symptoms of Huntington’s disease. In many families, Huntington’s disease strikes multiple members across several generations at approximately the same time. That means a person could be tending to a parent, spouse and child at the same time. Often family members who don’t inherit HD feel a type of survivor’s guilt that paralyzes them and prevents them from taking an active role in the unending demands of care-giving. With some families, nursing homes provide the role of primary caregiver. However, finding nursing homes that will take an HD patient is difficult. Finding nursing homes that can handle HD patients with effective care is almost impossible. That means that family members spend many hours after work and on weekends visiting their HD stricken loved ones. When Mom lived in assisted living, I visited her daily for three or four hours, and that was before her condition worsened. Had we moved her into a nursing home instead of our personal home, most of my days would still be given to her care.

         And so today, I’m taking time out for a pity party. I’m letting the kettle boil and bubble over. Maybe all the negative energy I’m generating will evaporate in the steam and leave me refreshed and renewed.    

Mom's last cabin visit on Sept. 2011 lasted only 4 hours.
Our cabin in Leakey is the one retreat David and I have!

Copyright 2012 Elizabeth Abrams Chapman

“Masterpiece Theatre’s ‘Downton Abbey’”

         Last night, I waited in eager anticipation for the latest episode of “Downton Abbey.” Years ago, Sunday nights meant slipping into another world or time period in a wonderful escape into a favorite piece of literature. Somehow, I drifted away from Masterpiece Theatre for a few years. I don’t know what I spent my Sundays watching during those missing years, but I do know I’m back for the duration of this series. I love all of the characters and subplots equally.

I find pleasure in the sensual blending of light, scene, and costume with the portrayal of distinct and credible characters.

Of course, I'm a sucker for the romances which abound in this series. Will Matthew and Mary end up together? What about Sybil and her chauffer? Will they drive off into the sunset? Will William's heart be broken by little Daisy? Will Bates finally ditch his wife and find happiness with Anna? I guess I still believe in "happily ever after" as I watch the relationships of these couples every Sunday night with the hope that all will survive their soap operatic situations.

                   

Copyright 2012 Elizabeth Abrams Chapman

“Sandwiches”

         Dad loved sandwiches. During our evening meals, he’d set aside a little meat from our supper, some lettuce and tomato from the salad, and two slices of bread. No meal officially ended in our family until Dad spread Kraft mayonnaise upon the bread, added his American cheese, and layered the leftovers from his dinner into his sandwich. It never mattered what main course Mom prepared! Ham? Roast? Turkey? Fish? Fried chicken breast? Sausage? Pork chop? Everything made a fantastic double-decker treat.

         So last week, when I craved split pea soup, my store run included all of the ingredients for Reuben sandwiches; and somehow my longings for a sandwich every night kicked into overdrive. Everything’s been stacked upon dark rye or rolled oat slices. I’ve thinly slivered vine ripened tomatoes and kept a tub of baby spinach handy. My assortment of cheeses has expanded to Swiss, American, Pepper Jack, and very sharp cheddar. I’ve diversified our spreads, moving beyond plain Kraft mayonnaise and into some of the different flavored mayos now on the market. Our French’s mustard sits next to Grey Poupon and Jack Daniels Dijon. I’ve used pastrami, ham, and turkey. I’ve had a simple fried egg sandwich as well as a BLT.

         I don’t know how long this craving for sandwiches will last. For now, I’m enjoying the marvelous variety sandwiches provide to my palette without demanding much from my culinary skills.  

Copyright 2012 Elizabeth Abrams Chapman     

" My Morning Musings"

         It occurred to me recently that I need to live my life the way I write about it. When I sit down to blog, I have a general idea of what’s on my mind, but I never generate an outline or a formal form of preplanning. Instead, I let fancy and serendipity take control. I “wing it.”

         In my life, though, I’ve always tried to map out the route to every goal. I’ve planned my agendas with the optimistic misconception that I won’t hit a roadblock or setback that screws everything up. But chaos and life go hand-in-hand. No matter how many lists, outlines, or plans I plot, the unexpected and unpredictable plops dead center and forces quick thinking and alternate courses.

         And isn’t that the fun of life? That spontaneous event that forces us to diverge onto a new track? I wonder about all of the wondrous people and places I’d never encounter if every plan panned out safe and predictable.

The road not taken? Hmmmmm. . . maybe

Copyright 2012 Elizabeth Abrams Chapman

“Jane Eyre—Rewrite?”

         I fell in love with Charlotte Bronte’s Jane Eyre when Mrs. Smith, my sophomore English teacher, assigned the novel to the girls in our class (the boys read Shane). I soaked in every detail of Jane and Rochester’s romance. The twists of fate that landed Rochester in to a foolish and destructive marriage with a madwoman appealed to my teenaged heart. I identified with young Jane’s rebellious indignation. A part of me felt sorrow that discipline and firm instruction at Lowood School distilled the spunk out of youthful Jane and left her a primly proper governess who bordered on being boring. Although I understood the contrast between Jane’s purity and good heart to the madwoman in the attic, I pondered the depth of Rochester’s devotion to Jane.

         I found myself mentally rewriting a few scenes in the book, even from the very first reading. I made Jane less subservient and less timid. By the time I started teaching the novel, I imagined wonderful scenes between Rochester and Jane that—ahem, fleshed out their relationship beyond Jane pining from the security of a curtained window seat.

         In my revision, Jane doesn’t run away from Thornfield Hall at all. She never stumbles into the Rivers’ household to receive the coldly practical proposal from St. John. Instead, I visualized a wonderfully sensual scene where the prudishly proper Jane pulls Rochester into her bedroom after discovering the truth about the real Mrs. Rochester. In my version, she lives in sinful lust with the man she loves.

         I know, of course, that Jean Rhys’ The Wide Sargasso Sea delves into the passionate and youthful Rochester, but I’ve often wondered if other fans of Jane Eyre imagine different scenes and events, or if it’s just me.

Copyright 2012 Elizabeth Abrams Chapman