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Friday, April 2, 2010

a fear filled glimpse

I hear the abrupt coughing of either Mom or my daughter break a silence that, until now, has only held the sound of cats scratching their ears over refrigerator hum. The information overload of the day has unsettled me. My recent sleepy bliss is once again punctuated with unsought midnight ramblings. My mind will not still.

I began the day with mom care as usual, but she is getting weary, trying to do too much all at once after being so very sedentary for months. I find myself unable to ignore her coughing, her hairball clearing snorts that must be the result of our family cold, the spring pollen, the overstimulated senses and just too much icky in the sinuses. Mornings are long and quite undignified lately.

This one was much the same. I made the coffee, I wrote out her calendar, I put together her breakfast and prepared my own satchels for a day of work. When the aide arrived, I left the home behind and went about my workday as planned. I went first to the Alzheimer's care giver's support group meeting where we were scheduled to have a speaker. I have arranged to be on call off site so that I can attend these meetings. That has been working well for all. I have given up, at some point, the idea of only doing one thing at a time. I am unsure how to change it back now, to focus things more, or if I should even try.


Before I went in, my cell phone rang. I have been trying to close a communication loop with my stricken friend through her husband for four days. It was him. Turns out she is far more ill than I knew. The stress of the work we share, coupled with inadequate support and self care has resulted in a serious health crisis. It looks like possible burnout to me. My heart sinks. There really is nothing much I can do for any of them. I will do what I can, and for now, that is not much. I pray. For her. For her family. For strength and for faith. For guidance. (Are you there ,Lord?)

I go in. The regulars are remarkably missing. The speaker is quite good and the resources shared are excellent. The new folks that have come to the presentation are varied in their relationship to the disease. The gathering includes people who are just beginning to deal with a recent diagnosis, or with the fear of one as their beloved or they themselves struggle with memory issues. I didn't expect to be the veteran in the group. Revisiting those early times, listening empathetical to their stories, I notice how very far mom and I have come already. Yes I am tired and at the moment writing away my insomnia, but we have managed to navigate quite a few of the crises of the early stages already.

I hear again, with recently pricked ears, how important it is to take care of the caregiver. Fueled by ravenous determination, I pick up pamphlets and business cards, and ... my beeper goes off. LOUDLY. I am immediately filled with undeniable anger. I don't want to go. I want to stay with the caregivers group and be fed. But that is not the plan I made. It is the hospital and I answer.

I pray my way down the street to the parking lot. I pray my way to the emergency entrance. I pray my way to the bedside and , indeed, now I am here. Now I am the chaplain and now my prayers are with the patient and her family. This is immediate. The need is intense and just having "the chaplain" here eases the tension in the room. My anger is gone. It isn't me. It is "the chaplain". By answering that call I observe the workings of Grace. At this moment it is clear! This is what I am called to do. How can I give this up?

Afterward, grabbing lunch from the snack bar, I wonder. What is the price I pay for being a caregiver? Can I stop, even if I choose to? Is it humanly possible to do all this? Will I too get hauled off in an ambulance for giving too much away? What will happen to my coughing family if I do? And then the BIG FEAR sneaks up. Will I also get Alzheimer's?

Yes. I am afraid. It was pointed out to me that the opposite of fear is NOT bravery, as I had previously believed. The opposite of fear is faith. To keep faith strong, like a muscle, it needs exercise. I exercise my own faith with prayer. The way I am praying lately, I could be an Olympian. I am also, slightly aware that I think this is sort of crazy. Let's face it, I talk regularly with an invisible being. How different is that from someone who talks to a six foot tall invisible dinosaur named Grimelda? If being this prayerful is madness, then it is this divine madness that will have to see me through.

Precious creator: I seek Comfort for my dear friend in her pain. May she know that you are with her, and myself, as we both struggle to keep ourselves together. I struggle to care for myself. Grant me sleep, and good sense. Restore us all to health. But mostly, help me to keep my perspective, my balance and my center. I celebrate your precious gift of time with mom and my daughter, my loving husband. I also appreciate the gifts of compassion I have experienced through Grace. May all of us move forward renewed in our faith. And say hello to Grimelda for me.

Amen