Last night was pretty tough — up and down all night long, then up this morning at 6:45am. The same is happening as I write this and has been going on for two or three hours. There is no point in my trying to head in to bed yet since the activity is constant at the moment. She has been climbing in and out of bed for no apparent reason with only minutes in between.
While, again, it is a function of the disease, it is no less frustrating. The time that I have generally claimed as my own in these late hours after Mary Ann goes to bed is coming to no longer be my time. Tonight I set upon having some spiritual renewal time. There is a podcast of the Saturday worship service at the Taize Community in France. The music is the sort that draws the participant in with a beautiful simplicity. The readings are done in at least three, often more, languages. There is a calm and peace that seems to include in community people like me, listening from thousands of miles away.
I had first read a weekly poetic devotion by Fr. Ed Hayes, whose writings have had much impact on my personal Spiritual journey. The reading suggested lighting a candle. I haven’t done it in a very long time, but I pulled out a votive candle, placed in on the worship center, a cabinet built precisely for that purpose, with stained glass inserts in the doors. I lighted another candle in a tall walnut candle stand made by my Dad, many decades ago. Next to that candle stands the Shepherd’s Staff made by a parishioner and given to me at my retirement, a symbol of my forty years of ministry.
A small iron Celtic Cross stands on the cabinet next to the votive candle. Joining the Cross and candle on the worship center is a large ceramic bowl with lettering and symbols painted on by the other Staff members and again, given at my retirement. The words are the summary of the congregation’s sense of purpose, “Grow in Faith. Share Christ’s Love.” The bowl is a symbol of Baptism, in our tradition, understood to be that first encounter with the Grace of God, an act of unconditional love by God, initiating relationship.
One other item on that worship center is a simple memento of a long-standing friendship with a small group of parishioners from the first parish I served as pastor. It is a small beveled glass case with found items, pine cones, dried weeds, parts of plants, stones picked up on a trip together to Alaska many years ago.
With the candles and the light from the computer screen only, I began the Taize worship. As I settled in enjoying the sensations that come with such an experience, the monitor screen that keeps me aware of what Mary Ann is doing as I sit here, revealed the activity. Since she is at risk of falling when she gets up, needs help to use the commode, to manage the cup of ice water next to her bed, to turn over in bed, her activity demands my participation.
I have stopped and started the worship a number of times, getting more frustrated each time, resenting the loss of the freedom to enjoy the experience. There is a odd sort of irony, that the very thing that helps me maintain a healthy equilibrium in caring for Mary Ann, is doing the opposite tonight.
As the Neurologist allowed, I have just this evening increased the dosage of Seroquel, which is the medicine that both reduces the hallucinations and helps with sleep. The last increase was not enough. It is too soon to assess the effectiveness of this increase. Certainly, the hallucinations have not decreased yet, they continue to be on the increase. Just moments ago she told me to be careful of the little girl when I was adjusting her sheet. This morning when she first got to the table for pills and breakfast, as soon as I turned on the light, she tried to show me the blood on her hands. I think she believed it to be from the raccoons or whatever biting her. There was, of course, no blood.
Last night’s post mentioned my need for better choices in the area of diet and exercise for the sake of this Caregiver staying healthy. Last night, today and tonight have revealed again the difficulty of following through with such plans. When there are nights like these that string together, it is just survival mode. A steady pattern of changed behavior seems completely out of reach. I am still reading the book offering helps for improving the diet part of the problem. Maybe some changes can be folded into our days.
As Scarlett would say, “I’ll think about that tomorrow.”
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The Caregiver Calling 