IN MY TIME OF DYING 3

Some days we look into Grace’s eyes and it appears there is no one home. It is as if she slid out of bed during the night and disappeared into the darkness. She looks at us with suspicion as if we are the culprits who spirited herself away.

We circle her quietly, attending to her basic needs. She rejects us with a wave of her hand while closing her eyes to convey the rejection beyond doubt.

We know the person slumped in the chair and suffer with her as Dementia destroys her mind. Our goal is always to encourage her living skills as she is able. Days like today are cruel and anticipate her dying.

Her children visit often and follow the progression. While experiencing negative emotions is painful, the reality of participation in life and death prepares them for the inevitable, for themselves as well as their mother.

I empathize with children who cannot force themselves to enter this reality, who do not share the days of living and of dying. But I want to tell them that they are missing the practice of cultivating compassion toward others. And in time, acceptance of their own diminishing.

ANXIETY

Dr. Peter Steinke writes “With anger and anguish, anxiety shares the same Latin root word—angere. It is translated ‘to choke’ or ‘to give pain by pushing together.’ The noun form of the verb is angustus, meaning ‘narrow.’

"Anxiety is emotional pain. It constricts and limits life. At the center of its painfulness is uncertainty. We can neither put our finger on what is disturbing us nor pick out a clear-cut villain who is threatening us. Nothing in specific stimulates it, and nothing in particular is its object.”

We listen to spouses and caregiving children fumble for causal explanation as they struggle to recognize and understand anxiety. Because the cause cannot be isolated, management is a challenge. Issues in their relationship may now surface as the caregiver resents anxiety’s imposition on the relationship. The dementia sufferer is no longer able to invest in the relationship and this loss causes pain.

“Because anxiety affects our thinking capacities, it diminishes clarity and objectivity. It interferes with our capacity to think creatively. We cannot stand outside of the vague dread and observe it.

“We do not know what we are afraid of, what terrifies us. In contrast to fear, anxiety is undifferentiated. It has no definite focus.”

Explanations like "it is what it is" provide little comfort. Caregivers may wait too long to seek support and help for their loved one. Dementia is not contagious, but anxiety can seep into our pores when we think we have the situation under control.

How Your Church Family Works p. 14

I’M NOT DEAD YET

Caregiving for one’s spouse or parent demands giving when there are few reciprocal gifts. Disappointments and/or grudges from the past may resurface when we do not expect them. Why must you be so demanding? Why can’t you carry your own weight? It isn’t fair that you ask me to carry your burdens as well as what has normally been my own.

I’m your child and I don’t want to become your parent. I can’t handle seeing you diminished.

Irritation may cause the caregiver to walk away or respond with anger:

Explaining the schedule every few minutes;

Picking up the responsibilities from a spouse or parent who used to be independent and self supporting;

Dealing with their anger over bodily functions and bath time;

Frustration over their inability to complete simple instructions;

Frustration when they hide medication, bills, reminder post it notes.

There is awareness in the fog of dementia and the patient recognizes anger and abandonment. It is the caregiver’s responsibility to accept the inability to “fix” the dementia before retaliating. There is no shame in seeking support to handle our negative emotions before our frustrations push us over the edge.

Several of our residents have bemoaned that they never thought “this” would happen to them. “I feel like someone took the wheels off my Model T.”

The caregiver experiences similar feelings, and it’s okay.

GRACE

Caring for Grace has become a meditative practice in patience. Her happiness phrase is “She’s a good one, good, good.” We slowly repeat her words when she is anxious, angry, struggling with over-stimulation. “You are a good one. Good. Good.”

When she strikes out she is telling us she doesn’t understand, and what we are doing is not acceptable. Her verbalization comes in phrases that give us clues. “I need to look over there,” could mean that she can hear talking outside the bathroom and needs assurance of her privacy. “No, no” may mean yes but she needs more time to consider the offer.

Caring for Grace I slow down, breathe quietly and smile. She is a challenge to my charge-ahead energy and a blessing, for today with Grace is a practice of now. Yesterday and tomorrow are irrelevant. Together we walk a path of being rather than production. We share joy as we observe whatever beauty of nature is outside our windows now. And we hold hands and assure each other, “Good. Good.”

IN MY TIME OF DYING 2

June is half over and then we begin the second half of the year, 2011.

Life and death do not cooperate with us as we attempt to determine our direction and rate of speed. We understand in our heart of hearts that there are no guarantees. We remind ourselves that to live today for today is what we are given. But, we want more and we would like to have input in what is coming.

As the needs of our resident population change at Adagio, I too easily worry the “what ifs.” I waste time repeatedly considering possibilities when I could be mentally creative and productive on a more manageable subject. I get disgusted with myself when I realize I am “reviewing the situation” yet again.

I Binged “worry” and was given a sensible perspective from Shantideva, a ninth-century philosopher.

“If you can solve your problem, then what is the need of worrying?

If you can’t solve your problem, then what is the need of worrying?”

Jesus taught, “Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34

HAPPY FATHER'S DAY

To all the men who are fathers or who play the role of father, thank you. We celebrate you.