More and more frequently, dad has been having episodes of agitation. Through reports of the staff in dad's long-term care placement, I have learned what usually sets off these episodes. It seems that these events are not initiated by dad, but rather they are a reaction to events which frustrate and upset dad. The trouble is, dad is a big strong human being. A big strong human whose reactions are unpredictable and not based in reality can be a frightening thing. This is hard on everyone, and professionals have to devise unique crisis prevention plans for each individual under their care. This is further complicated by an individual's progression into the disease, which requires frequent reassessment and change.
That's the professional-special-education-teacher Jessie talking. The daughter Jessie is not so detatched. I'm freaked out, I'm panicked, and I feel responsible. I jump to the conclusion that this is my problem to solve, and I do not know what to do. I do not know where to turn for help and, more often than not, I forget to ask for help.
Dad was having trouble. He would tear his clothing and cry out. He would push, pull, or grab others with his iron grip. When these events happened in the afternoon, a week of my observation together with staff observations led us to using the music as a crisis prevention measure. But these events started to happen between 5:00 and 7:00 in the morning. Much as I hated the idea, I was going to have to get to the nursing home at 5:00 AM for seven days in a row in order to understand the problem.
So this is what I did. Of course, having me there when dad woke up prevented the problem. We started the day with a music session, me playing guitar, a banjo or drum in his lap. I would leave about 7:45 AM with Ralph Stanley singing gospel in dad's room. If I was present, dad did not have these episodes. I would get home in time to say so long to David as he left for work in the morning. I would work at my writing, my part time job, my teaching, and the many other projects I have and be exhausted by eight o'clock at night, one hour after David got home. I had the sensation of living in a tunnel.
I write this now for three reasons. One is to instruct myself. The second is to identify with other caregivers who also experience this trouble. The third is to speak to professionals about caregiver's personal limitations. These must be taken into account when dealing with caregiving families.
Enlightened professionals are beginning to see that chronic diseases affect the "significant others" (or "the cargiving unit") as well as the ill person. Institutionalization of the ill person does not change this fact. Loved and loving ones are always affected by chronic and terminal illness.
I am beginning to see that out of sheer self preservation, I have to find better ways to be responsible. I cannot do it all by myself. I will make a videotape for dad to wake up to. I will make him a cassette tape. My job will become one of making sure these tools are used rather than the one who does the job myself.
This is a spiritual thing. A long time ago I began praying that God would look out for my dad when I could not, little understanding what this meant. The more I pray the more I learn that my life is a process of giving up the fantasy of control. The "Confession of Sin" in the Book of Common Prayer begins:
"We confess that we have sinned against You, in thought word and deed, by what we have done, and what we have left undone. We have not loved You with our whole heart..."Loving God also means trusting God. It means listening to all the ways God speaks. When I try to take on too much responsibility, I am trying to play God's role. That is an injury to my relationship with God, thus a sin. I am learning, through the voices of my friends and my father's friends, that my job is to coordinate dad's safety, not to sacrifice my life for dad's. God will do His job in His own way, and it is not for me to try to do that.
When I was going to Macalester College in 1980, I liked to go with my friend Sue Johnson to a place called Dewey's Bar on Snelling Avenue in St. Paul, MN. Dewey's was a blue-collar beer joint where race car stickers were applied to the black walls. They had a great juke box there. Sue and I used to get bellies full of beer and shout-sing along with the Rolling Stones. My favorite songs were "Honky Tonk Woman," "You can't always get what you want" and "Satisfaction." I don't remember too much from Dewey's, needless to say, but I do remember a few things. One was the elation I felt as Sue and I sat in a wobbly booth sing-shouting: "You can't always get what you want, but if you try sometimes, you might find, you'll get what you need...." Ahh, thank you Rolling Stones. Little did I know then how deeply meaningful those words would come to be in my later life.
All along the way since I first started to take care of dad, there have been Angels and Manna helping to provide for his care. I believe it because I have experienced it, over and over again.
Next time more about the Angels and the Manna......
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Tommy's section of the site, the following pages
are also related to Jesse and Tommy:
Blurred Time "The Sleeper": the aftermath of Jesse and Bobbie's car accident
Mike Craver's "Visiting Tommy"
Roots of the Red Clay Ramblers:
Fuzzy Mountain String Band: Jesse's mom, Bobbie, recorded with Rambler Bill Hicks and others
Hollow Rock String Band: Tommy and Bobbie Thompson named this band for their community
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June 25, 2000