by Ginnie Horst Burkholder
I used to collect moments like precious gems to horde in my memory for revisiting when I needed a break from the demands of caregiving.
I wrote about some of those moments in 2004.
Today it was Shawn telling me repeatedly how much he liked the flower arrangement I brought to church. Shawn is a college kid. We rarely speak. Our paths are worlds apart. His initiating connection and compliment was the first gem of the day.
Tonight I received the second gem when Connie initiated conversation about how I was doing and was able to listen and be with me as I described the emotional tangle I felt this week. Her hug was like an island of respite for that moment — a place to cry, be weak, be needy, and still be received. She said she doesn’t know what to do to help. I said, “You are doing it.”
“Often,” I told her, “people ask me how Nelson is doing. I need to talk about how I am doing. But that invitation is rarely given.” It’s understandable. Few people want to invite the pain or know what to do with it.
Eric called tonight, and that was a third gem, as hearing from either of the kids always is.
Jane called, and that was a fourth. I can tell her anything and know that she will not advise or judge, but will listen, reflect, and support.
I helped Nelson get into bed after finding him asleep half in and half out. He said, barely audibly, “It was a busy day. You did a good job.” I think that might be another gem, but at the same time I note that his dependency on me is growing, and that he is more frequently not just accepting my help, but assuming his need for it. I collect that moment, unsure if I will be able to savor it.
With time I have recognized the need for more, and have created spaces for walks, lunches, and time with friends. These relationships are islands of connection and emotional comfort. Now as the disease takes more of Nelson from me, I find myself needing a continent of support, connection, conversation, and presence, in order to do the necessary caregiving.
I have just returned from four days away. I used sticky notes freely to leave information for Nelson’s multiple caregivers. I had to be firm in my resolve to leave home since Nelson did not want to go into a care facility for the one night when other options were not available. Scheduling got tricky. Transitioning between caregivers added complications. Guilt teased at my preparations as I made plans and packed. I was going to see for the first time where our son lives, and I was leaving Nelson behind. I silenced the voice of guilt with the voice of reason and the validation of others. “Go,” they said. “You need it.”
So, in between what seemed like monumental efforts to prepare to go, and then the re-entry into caregiving blues, I enjoyed an absolutely fabulous four days of rest, relaxation, companionship, renewal, and laughter. I spoke, and there was feedback. No one fell asleep in the middle of my sentences. I listened, and what was said was not garbled or incomprehensible. Conversation flowed freely without need of explanations to confused questions. I got myself up in the morning and went to bed in the evening with no one depending on me to monitor progress of dressing, or pill taking, or grooming. For four whole days I felt normal and whole again.
Now I am home, and caregivers send e-mails to assure me that everything went well. I understand all the reassurances, but my beleaguered caregiver self wonders why it goes “well” for others and seems so hard for me. I want to hear them say they can’t understand his words. I want to know they too found it difficult to keep him oriented, or on task. I want to know that I am not alone in how Lewy Body impacts me.
This morning as he clears the table, I am still eating breakfast. “That’s my spoon,” I say. “Leave it there.”
“What about broccoli?” he asks.
Yes, I have the re-entry blues. My sister, who says every caregiver needs a caregiver, and has stepped into that role for me, suggests I start working on my next getaway. She’s right, I think. I will have to start building anticipation into my respite and re-entry routine. Otherwise, having experienced a degree of normalcy, re-entry becomes daunting, and gem collecting loses its power to give solace.
© 2007 Ginnie Horst Burkholder
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