A Willow In the World

Warning: This entry is not for the faint of heart! What you are about to read might not groove well with the rest of your day. But I feel the need to write about it because it is the truth! And besides, it is all about my day and Susan’s reality.

I have never been a quitter and I don’t plan to become one. But if I am going to be honest, I have to say that the thought of giving up this whole care giving thing has crossed my mind- more then once these past few days. I mean, the thought that this entire episode could in fact be a new stage in Susan’s Alzheimer’s disease, really scares me. The thought that she may never regain her continence or her strength or any lost piece of where she is or who I am- it just doesn’t jive in my gut. Not yet. I hope it never does.

Care giving of this caliber is not for the faint of heart! Fighting this or any disease is not for those who are weak. But sometimes, in circumstances such as these, we find our strength- if we choose to. And if you have chosen to fight for yourself or your loved one, in the midst of all the pain and suffering and grime and loneliness, I think you will find joy, compassion, love and an inner peace like you have never experienced before. So, if you don’t think you have it in you- maybe you don’t; but if you think you might, I bet you do! God gives us the grace when we need it, not before.

Today is Friday. Susan came home from the hospital on Monday. Here is how my week has gone: each morning I find Susan in some precarious position: in her bed, on the floor, or tangled half in and half out. Her pull-up is always full of diarrhea, which can be smelled before I hit the door to the hall. Each day it has leaked onto the sheets and bedding, plopped on the floor, and smeared up her back and onto her clothing. I put on my disposable gloves and retrieve Susan slowly from her awkward position. With my assistance, she scoots (extremely hunched) to the toilet, where I lower her pull-up and set her on the toilet. I place it into a fresh garbage bag, along with Lysol wipes that I use to clean plops from the floor. The soiled bed sheets and dirty clothing are gathered into the laundry basket as Susan sits releasing more of her antibiotic reaction (I suppose).

Meanwhile, as I am warming the
bath water, we argue about Susan’s need for a shower, until eventually she is forced to step inside. Gloves still on, I squirt a body wash over her body and I cleanse her backside as she scrubs the front. Sometimes I even clean feces from her hair. Finally, I wrap her in a towel and hold both her hands as she steps out onto the floor. She leans on me as we walk the four feet from bath to bedroom. There, I set her down on her towel and she continues an attempt to dry herself up while I gather fresh clothes. My gloves are deposited into the new bag of trash; I tie it up and place it at the door.

While assisting Susan with a change of clothes, we run through some simple stretches and arm and leg lifts just to keep her from tightening up. She loves it when I let her kick my legs for exercise. I try to crack a joke or two in an attempt to make her laugh. If she is not in the mood, we work on just the face- a smile. I try to coax one out of her by reminding her that, A merry heart does good, like medicine.-Proverbs 17:22. Finally she forces her lips into a flat position, which equals a smile for her these days. She doesn’t seem to feel well enough to talk much; however, one day this week she surprised me with: “Karen, I feel like a willow in the world!” Once I verified that had actually said what I thought I had heard, I asked her what she meant by that. “Well, when I wake up in the morning I just feel like I’m going here and over there- like I’m just dizzy. You know.”

As I am returning her safely onto her freshly changed bedding or propping her up in nearby chair, I can’t help but remember the sharp, quick, stylish beauty that she was not so long ago. I think of Jeff’s father and how much he loved her. I think of how he would feel if he could see her now. Change has come into all of our lives rather unexpectedly these past few years and Susan is really feeling it this week. I admit that there is a bit of fear for our future, topped delicately with a dab of faith and hope- for whatever it holds.

Once I leave her room, I wash up thoroughly and head to the kitchen to find her something nourishing. Usually she will eat a few bites of applesauce or half of a banana. It is placed on a red tray (her favorite color) with her morning medicines and one or two drink options, accompanied with a straw and napkin. Back in her room, I feed her as much as she will tolerate, and leave the tray beside her on the bed in case she gets the inkling for some more. She never does.

By then, Susan is generally half asleep. I open the shade to let in some sunshine and spray her room with Lysol and sometimes burn a candle. That is when I head for the laundry room with a new set of gloves and begin washing the soiled sheets and towels. Periodically throughout the day, I re-enter Susan’s room to check on her. If she is clean, I simply check her and reposition her body from side to side with pillows (to prevent bedsores). Sadly, bedsores are now a concern with Susan. She developed a tender spot on her back side while lying flat for a week in the hospital (under the care of her first doctor who didn’t believe she could walk!) If, when I check her, she is soiled, then the entire routine begins again!

Good morning world! We are alive in Oklahoma! How about the rest of you?


(PS. Thank God for Jeff!
He was up with Susan the last few mornings at four AM feeding her and showering her. He is such a good husband and son. And thank God for weekends! Jeff and I split the chores, I showered Susan while he gathered and washed her laundry and so on.)