by Ginnie Horst Burkholder
I have asked myself many times in the past how I will know when it is time for me to consider long-term care for Nelson.
Thinking about it, my heart would always resist and say, “I can do this one more day.” Gradually I have come to realize that my heart will always say “no,” and it is time to listen to the voice in my head that is saying, “I can’t do this anymore.” My inner landscape is barren and dry. I seem to have lost any sense of well-being. “One more day” isn’t working anymore and my aching body is telling me it is time.
I have watched him go from an intelligent, self-sufficient, entertaining and engaging person to a dependent, unresponsive, illusive shadow of who he was. In the meantime I have aged from 50 feeling 40, to 64 feeling much older.
At night I lead him around by both hands to get him ready for bed. He does a slow shuffle with his feet as if he is afraid to take a step. My physical strength is declining, and I find myself wondering more often if I am going to have to call for someone to help get him up the stairs to bed or out of his chair.
At night I hear him on his way to the bathroom. I lie there resisting a slow awakening and a gradually increasing alertness as I wait to see if he will make it back to bed on his own. Sometimes he does. Other times it is silent too long, and I get up to find him stuck in some frozen stance, or attempting to clean up a spill, or unable to turn off the water. Sometimes he has a nightmare and wakes me with frightened noises, or he falls out of bed. Then going to sleep again eats away the night. My body is losing its resilience. I’m tired.
The price of waiting too long
I can’t focus on anything else when he is trying to communicate. I wait long minutes for him to get words out and pay close attention trying to understand, but most often the words are too quiet and garbled. After I tell him I can’t understand, I feel such an emptiness and loss for us both. And then I distance myself from him to avoid the hurt. It’s like I’m trying to maintain a relationship with a person who is never home when I visit.
I want to tell him about something that has given me a rare feeling of animation. He is unresponsive. The animation fizzles like a dud firecracker. I go back to living the life of disconnect.
“My patience is gone,” I tell a friend. “I have none for anybody or anything.”
“It’s the caregiving,” she says.
My stamina has crumbled. I can no longer give the care he deserves. That’s humbling.
“You have done it longer than most people would have,” people assure me.
Another says, “Don’t’ wait too long. My neighbor did and was almost over the edge.” It’s not hard for me to imagine that.
So, overruling the heart that will always say no, I have begun to prepare us both for long-term care.
This morning he needs help gathering the “posies” from my flower beds that will go along to the SARAH staff. We go from flower to flower, adding some delicate lacy fennel to Brown-eyed Susans and then some purple larkspur. He holds the vase in his hand. I cut the flowers and arrange them in the vase. I have just placed the last flower when he says, “I think about you a lot during study period.” My heart melts into a very warm puddle that collects in the hard shell of my reality. I put my arm around his waist, and we walk together in a rare moment of connection and found fondness.
After the bus picks him up, I come in to eat breakfast at a table where the flowers are long past needing replacement. It is time for our table to have a fresh bouquet.
It is time for me to give what I can – the night disruptions, the feeding, the tugging and pulling of clothes, the cleaning up after – to someone else.
Becoming an anticipated guest
It is time for me to court him in a place where I am the anticipated guest, and where the caregiving doesn’t constantly interrupt my sense of wellness. It is time for me to recover the fondness for him that eludes me under the losses, aches and strain of at-home caregiving.
I return to the garden and lose myself in the flowers, picking a small bouquet. Inside, I place them in the center of the table. It is time.
© 2009 Ginnie Horst Burkholder
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