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Caregiving Reality

The Muzzle and The Load

Pulling the load

Aflood levels all in its path, and a raging fire leaves the landscape in ashes. The fire and flood of caring for Grandma had a similar toll, except most of the rubble in my life remains unseen to eyes. Eight years passed on the clock, and the impact of those days cannot be measured in the neat lines of a Richter scale. I walk out with my baggage and scars, and experience laid up in memory–some good and some bad. Like a lingering bad flavor on the tongue the darker moments seem stronger. But in the midst of tasting still the bitter past that cannot be washed from memory’s mouth I remember also the loads truly shed as I walk out from that chapter of my life. Some parts of the past I must carry on, but some I can leave behind. I feel that leaving even as, some, I still feel a holding. A bird set free from the cage exults in the thrill of flight. A beast of burden relieved of muzzle and load knows even in exhaustion the sweet luxury of absent bindings. I am them, and they are me; exhausted and uncertain but still knowing that whatever I carry on, one thing is sure–the bindings are gone but the memories are not.

In the weeks since Grandma’s death I have thought about this sense of freedom. It flits along the edge of my mental vision in that odd contradictory sense of tangible and yet not. I am free from physically caring for Grandma. I no longer have the obligation of being present for someone every day of every week of every month of every year. I can go where I want. At first, after Grandma was gone, I reacted to the morning alarm as if Grandma was calling for me, and as if every phone call was her needing. My emotions plunged in that bracing instant until they caught up with what my brain knew. No more constant Grandma calling when I was away, no more desperate needing all day, every day. The removal of that constraint is a freedom, everyone can see it, and it doesn’t need explaining. But that truth doesn’t shine light on the depths of what I carried for eight years.

A comparison and contrast can be drawn between my caring for Grandpa, and my caring for Grandma. In his Alzheimer’s, Grandpa’s needs required that I be still. And so, in the realm of caring for Grandpa, I was still for three years. By stillness I mean I couldn’t go places and do things as people do in normal life–I was physically constrained to stay and care for his needs. No adventuring and seeing the wide world for me. And yet for all of that there was a way in which I was free–free to be myself. Grandpa never constrained me to silence and never required that I be other than my natural self. What he valued was all that I was in my crazy zany self. And outside of his personal presence I could say what I wanted, or write, with complete freedom.

Grandma constrained my life to an entirely different magnitude. Her poor health did restrict me to a measure of stillness, though for a number of years not in the same dramatic fashion as Grandpa’s sickness. But over this she laid the greater muzzle of silencing my voice, and the load of requiring that I not be myself.

Such was never said, of course. More than that, such burdens were never the cognizant intention of Grandma. But the thoughts, intentions, and attitudes of our hearts–and the actions which spring from such–form and shape our relations far more than any ideals professed by our mouths. So with Grandma what shaped our relationship ran far deeper, and far contrary, to what she would have told the world, or even herself. The truth of relationships are often like that.

In his long decline Grandpa loved me for who I was, a relationship both simple and deep. I didn’t have to think about what I needed to be, I could just be me. That relationship didn’t exist with Grandma. She did not understand who I was as a full-bodied individual, and (I came to realize) had no real interest in learning about my true person. I, like all other people, was a player on Grandma’s imagined stage of life. As the person front and center in those last years of her life I became the lead actor in her dreamed world–a strange cross between a vision of Edgar Allan Poe and Disneyland. I embodied her hopes and her fears, a puppet which reflected the contents of her own heart. That is a heavy, and awful, burden to carry. Playing on that kind of stage, however reluctantly, infects one’s own thinking, even when resisted. And for eight years that was mine.

“When Grandpa becomes too much for you let me know and then we’ll send him to a nursing home.” That was one of the first things she said to me when I came, and even then she talked to herself though she looked at me. I was her absolution. Grandpa’s sickness was a burden she did not want to carry, but the idea of sending him away provoked deep guilt. I was the answer to both. I would carry the burden and when I could carry it no longer then her guilt would be absolved in sending him away. I was the measure, and so she balanced her burden and her guilt upon me, and projected her resentment of Grandpa and his sickness upon me. To wash away her guilt she kept a mental list of Grandpa’s failures to silence her feelings of guilt. She thought to have me add to the list. If Grandpa was oppressing me–oh such a burden unbearable–he surely needed to be removed with no sense of guilt. And so anything I said about Grandpa would be used to justify her in her own mind.

That began my life as a tool to justify Grandma (whatever the current issue), and my mulish resistance to such an existence. In that first offer by Grandma to remove Grandpa I saw that I was a chip player in Grandma’s own internal neurosis of comfort, fear, guilt, and control. Any word of weariness I might say in a moment of exhaustion would be stored up by Grandma for her own use. Knowing this, I determined then that no word of complaint about Grandpa would leave my lips in Grandma’s presence.

But this was only the beginning of a dynamic that would continue in every facet of life for the next eight years. These two truths remained inviolable: First, Grandma would manipulate everything to accomplish her ends. Second, to Grandma keeping up appearances was vitally important. A third reality was that these two things were seen through a world-view where conspiracy, malice, and ignorance in others (everyone) was presumed as irrefutable. This is what Grandma saw, and this is the world in which she lived. In her framework of life being real, frank, and open were lost. No matter what she said, the reality of her actions showed that her goal was projecting the right appearance and manipulating events (often against imagined hostile forces) to produce her desired end. This extended from the important all the way down to the mundane: Grandma complained that a photo I had posted on my blog showed a run-down house across the street. “Putting up a photo like that will make people think we live in a dumpy neighborhood. We don’t want people to think that,” she said. If I protested that such house was truly across the street, and that I really didn’t care what people on the Internet thought about the neighborhood she would say that I ought to learn a little more “self respect.” Or, in the last weeks of her life she told me, “Don’t write any funny stories about me.” It didn’t matter to her if the pictures were real and harmless or the stories funny and true. What mattered to her was that a picture or funny story (however true!) might besmirch the image she wanted projected of herself and her domain. Needless to say the picture did appear on my blog, I did not promise to never write a funny story about her, and this unvarnished writing today would be a horror. But the triviality of the first two occasions illustrates how my life was constantly in friction with someone obsessing about crafting a projected narrative. Living truth and letting people think what they may was not part of Grandma’s paradigm and this put us in deep life-values disagreement.

Her mentality impacted every part of my life. For those eight years Grandma’s presence constrained what I could say, and what I could publicly share in writing. She rejected any idea that anything about herself might need changing. By her deeds she made it manifest that she didn’t care what I thought, felt, or believed–and anything she said otherwise was pretense. All she cared was that I (and everyone else) affirmed her opinions–and if I, or they, wouldn’t affirm her life narrative then we had better keep silent. This meant I often I kept silent.

I could have openly set myself against her machinations and opinions–I was not too scared or weak for that–but such would have caused a complete relationship rupture. Grandma could tolerate no disagreement, and rather than allow any contradiction she would burn every bridge and every ship in her harbor. That kind of war was not the purpose of my coming. I had come to care for the sick in spite of their faults, not battle them over the reality of a healthy inner person. But this constant tension pervaded every part of life because her manipulative and appearance based mentality was morally deeply offensive to me, and contrary to everything I valued. If I would not walk away from the situation I was left to live in the midst of this miasma.

As Grandma slipped more and more into a life existing within the tortured exaggerations of her mind, I more and more turned inward. I swallowed my thoughts and feelings as best I could and schooled myself to service. Carry the load to the finish line, I thought. Endure to the end. And in my quietness Grandma dressed me in the robes of her savior or her enemy, depending on the week and month and sometimes the day. When it suited her she praised me as the greatest. When it suited her she grumbled and slandered me. When it suited her she called me a medical expert, and when it suited her she called me ignorant. When it suited her she wished me the best and when it suited her she scorned my future. She asked my advice when she fancied and ignored it as she pleased. I was but a pawn in this self-referential play, and the depths of the meaninglessness of her words was summed up in an incident in the last weeks of her life. We were entering the final black spiral, and after a late night of her extreme emotional anguish which I helped her through she praised me as a great spiritual support and blessing. The next morning she accused me of being a conspiring trickster with the worst intentions. She raved that her own grandson was trying to kill her. I had joined the medical experts against her.

What was I? I could be anything, and I was nothing except a blank page on which she painted the pictures of her heart.

Since her words were weapons in service of her ends–not truth–nothing she said or did held real worth. Any praise would be followed by a blow of words meant to wound. I learned to brace against the seeming kindnesses as much as the shot barbs. Each were tools that she flailed in an attempt to shape and control life. She trusted, respected, and believed me only when it was convenient to her purposes–which meant never in truth. The words lost any substance–a deeply alienating experience.

I wore the muzzle and carried the load of that time and wondered if I would make it to the end. If I was myself, she could not have tolerated my presence because I would not affirm her vision of life. But if I veiled myself she could barely stand the fears and desires, and all that was mixed up inside her, that she projected onto my presence.

It is a strange and heavy load to find yourself projected as the embodiment of another person’s neurosis, a marionette wearing the clothes of a troubled life. We have enough troubles in our own minds, and hearts. Even the most grounded person can begin to feel a certain sense of madness, of self-questioning and doubt. With time it becomes hard to know where the real ends, and the imagined begins. Am I the self-centered, thoughtless, uncaring person that is whispered on those lips and seen with those eyes? What am I? I am not perfect, and so then perhaps I am all that she accuses. Anything better was my self-praising delusion. Am I deluded about myself, or is she?

Living on that stage is not a place I want to visit again.

The life she lived will echo in my mind and heart for years, wounds of twisted thinking that do not heal so quickly as injured flesh. I hope the buffets I bore spring better fruit than all the bitterness I saw. But only the time of grace will show that. For now, when Grandma died I left that stage, and removed the clothes she dressed me in. The show is over. I am free again. Free to speak, and free to write. Free to go, and free to breath. All of those freedoms. But most of all, I was set free to be me again.

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1 comment… add one
  • Cindy July 3, 2016, 11:24 pm

    Rundy, it breaks my heart to hear of anyone treated in such a way. Perhaps because I’ve been in those shoes, in other relationships, at other times in my life. Emotional and verbal abuse is not limited by ages or stages of life and it’s effects are long-lasting. I’m so thankful I do not have that with either of my parents. I would not have been strong enough to endure it, nor would I allow myself to be in that situation ever again. But I am so proud of you, the sacrifices you have made, the service you have given, knowing how very hard and very long it was. I thank God for you. I know that you are strong and young, yet wise beyond your years as a result of “the caregiving years.” And God will heal all the unseen wounds and make you stronger in spite of them. What wonderful plans He has for your life! Thank you for sharing your journey.

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