by Ginnie Horst Burkholder
We all change over the years, and in any marriage the challenge is to grow together rather than apart. For those of us with Lewy body spouses, the complication of this undertaking is magnified and gradually becomes one-sided. A spouse that is commandeered by unpredictable malfunctions of the brain can’t be held accountable, and keeps us guessing as to whom our spouse will be in any given moment. The result is that any sustained improvements to the relationship have to come from us. How we will bridge the gap between our two worlds becomes one more thing on a long list that morphs into our responsibility alone.
A taunting reprieve
As Nelson moves farther into Lewy body dementia (LBD), he more easily loses orientation as to where he is and what is taking place. Last month in the unfamiliar environments of vacation locales and air travel, it was evident that he missed his usual structure. On the way home, I realized the toll it had taken on him. He sat next to me at a small table in an Atlanta airport sub shop where we were waiting for our next flight. Turning to me as if he were making polite conversation, he asked, “How many children do you have?” At home he frequently loses track of me, startling at my presence when I speak, even though I am seated nearby. But he rarely loses track of who I am. Incidents like these keep me cognizant of the crevasse that memory loss has opened between us. I am overwhelmed by the leap it takes to cross it, and sometimes ambivalent about whether I want to. Because even if I manage to bridge the gap and create a connection, it will be unsustainable – only a moment’s taunting reprieve in the landscape of Lewy body chasms to come.
We have now been home from vacation for one week. He is back in his routine and feels at ease, self-assured, cocky even. The man on a mission pokes his head in the bathroom door and wonders how I am doing. There is no doubt that this is a new persona. The question is loaded. It means, “I am ready to go to church, and I want you to be ready to go right now also.” As usual, he fails to grasp the concept of time. It is forty minutes until church begins and a ten-minute car ride to get there.
Rather than annoy him with the reminder that he wants to go much too early, I tell him I’m doing ok. I’m feeling lucky. Maybe he will accept this, sit down in his chair, and fall asleep. Instead he comes back with, “I’ll pull the car up.”
Alarms go off and adrenalin surges. He hasn’t driven the car in something like 13 years, so I tell him emphatically that he will not! Then I discard the fantasy world judgment I have heaped upon him and give him the benefit of the doubt, saying, “Do you mean you’ll pull the garage door up? You can do that!” He disappears, and I feel relieved that I seem to have averted a confrontation.
Later when I am ready to go, I reach into the key basket beside the door, and the keys are not there. Did I leave them in my coat pocket? He is standing in my way, trying to get me out the door, which I cannot open because he is in front of it. When I tell him, “I don’t know where the keys are,” he reaches into his pocket, pulls them out, and nonchalantly hands them over.
A road paved with consternation
The adrenalin isn’t completely out of my system as I pave the road to church with consternation. I ignore his eager pointed finger telling me when it is safe to go at each road crossing and note the angst I feel over the hyper-vigilance his caregiving requires. Some primitive animal in me wants to sit at each intersection longer than necessary to prove that I will go when I am ready. But I ignore that too, choosing not to widen the gap that is always there between our worlds, ready to swallow us.
Later in the day, we walk in the park. Afterward, as we prepare to leave, Nelson scoots into the driver’s seat of the car. The keys are safely in my pocket so I watch this new phenomenon to see if he is going to realize what he has done, but he doesn’t. When I question him, he says he is going to “follow them,” indicating the car of my sister and her husband who are pulling out of the lot. It is not until I tell him he can’t drive that he realizes his mistake. Then he offers no resistance and heavily pulls himself out from behind the wheel to move to the passenger side. I decide his comfort at being back home has hijacked his muscle memory. Without the aid of cognition, he has been taken back to old times. For some reason, these sorts of explanations help me cope with the ever-widening gap.
Sometimes Nelson needs to prove to one of us that he can conquer something. This often manifests itself in the car regarding the seatbelt. When one too many things have defied his abilities, he will get into the car and – while my mind does mental gymnastics to keep from losing patience – he will try to fasten the belt himself. “I almost have it,” he will say, as I look on watching him try to force the end into an illusive slot. He dodges unruly lumps of his winter jacket and persists, oblivious to the passage of time. Sometimes he gets it and is triumphant. Other times one of us gets exasperated, and he accepts my offers of help. When I can identify with his helplessness and loss, the gap closes a little. When all I can see is my loss, the gap pulls me in, and for a time consumes me. Then once again, I have to open my heart to the anointing processes of loss, grief, and healing.
Occasionally there is a simple task of dressing or toileting with which I am trying to help Nelson when he has become aware that something he’s doing isn’t working. Without the tools to communicate, he gets embarrassed and goes into spasms of giggles. I remind myself to let the task be secondary. I giggle and laugh along, even though I may not know what we’re laughing about. When I am able to scrap the importance of the task, the moment brings us together in his world, rather than chipping away at the fragile bridge between us.
When some information or event has aroused his interest, Nelson’s determination to communicate can be unrelenting. It’s important to him to convey his excitement, but the words come out fragmented and muddled, like floating space junk, bits and pieces, attached to nothing meaningful and with no connection to anything I can think of. It usually requires action. While I try to make sense out of words I can’t hear, and phrases that won’t connect, he looks for understanding I can’t give and help I can’t construct. The chasm is a big one then, and losses flood over me while my body becomes weighed down with the heaviness of it all.
On rare occasions and at the most unexpected of times, I am treated to glimpses of the Nelson I fell in love with, and then he becomes the one who bridges the gap between our worlds. Recently he was restless, moving around the living room looking for his shoes. But his shoes were right there in plain sight. I pointed this out, but he continued his search, stopping to block my view of the TV. I protested with telltale exasperation in my voice, and then repeated my earlier question, asking what he was looking for. He repeated the answer and lumbered away. Now I stared at the TV, feeling frustrated at the gap and defeated that my voice was scolding. After roaming a bit longer, he approached me where I was seated on the sofa. He bent down to my face and with rare and poignant clarity, he enunciated clearly, “Goodnight, wild woman.” Then with a grin, he added, “I think I love you.” With that he turned to climb the stairs to bed. My heart melted and for a brief glorious moment our worlds spun as one.
A bridge intact
At the end of a Saturday, my longest caregiving day, he is tucked into bed and ready to sleep. He didn’t have much energy for the walk at the park. His knees buckled when he went to pick up the mail at the end of our drive. His hands failed to cooperate when we ate lunch. He was too tired to do anything but sit in the car at the grocery store, and his efforts at communication often got no better response than multiple repeats of, “I can’t understand you.” Yet, now he thanks me for a good day. That is the Nelson that astounds me: his high tolerance for what to me looks intolerable. “Goodnight,” I say as I leave him to sleep. Then I count his even temperament among my blessings and feel satisfied that we have somehow been successful in keeping a bridge intact to each other’s worlds for one more day.
© 2009 Ginnie Horst Burkholder
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