Presence: A Gift of Dementia?

As I looked at my reflection, I saw a smudge. Of course, I immediately attempted to remove it, but all of my rubbing was to no avail. I thought, “I will ignore it. Smile. Pretend it is not there.” That proved to be impossible. Instead, the smudge became bigger than life. It remained in place for the whole world to see . . . or so it seemed.

My reflection was not in a literal looking glass. No, it was more painful that that. I was seeing my own reflection in the other.

I was sitting in a room in which I had been many times when a newcomer entered. As I observed her attempts to get settled, I watched as she had the gall to rearrange the furniture! Of course, my first thought was, “Really? Who placed you in charge? What gave you that right?” However, the more I watched, listened, and interacted, the more I saw the reason such behavior bothered me: I was seeing me! UGH! I tried to ignore this fact by smiling and interacting as if this was not the case, but alas, it was. I was staring at a smudge on me, and I did not like it one bit!

Don’t you hate that? Here is a new person . . . someone you have never met and in a matter of minutes you decide that you are not sure if you like that person. If you are like me, you don’t feel real good about yourself in that moment, and you wonder why you are reacting in this way. Well, I discovered why: I was struggling to embrace her because I was struggling to embrace me. I remember I was so relieved when this person departed. Oh, if it would be that easy with me! Unfortunately, she could leave the room, but I am stuck with me 24/7.

As I watched this competent, organized, assertive woman, I saw how I have interacted when I am in an uncomfortable situation or when I am hurting or when my need is going unmet. For example, after my mom passed away seven years ago and I would visit my Dad’s farm, I would walk in the door of the house and begin with a flurry of activity, e.g., cooking, cleaning, straightening, etc. It was a coping mechanism for me, just like my new acquaintance as seen above. The visits at the farm reminded me of my mom. She was everywhere and nowhere. Thus, anytime Dad did something to the house that Mom would have never permitted, I would internally freak out. Dad’s actions were another reminder that Mom was not there. As time passed and I adjusted more to Mom’s absence, I became frustrated with my lack of meaningful interaction with Dad as he became more withdrawn. I was watching my Dad decline both physically and cognitively, and this was generating uncertainty and ambiguity for me when I wanted security, stability, and predictability; thus, cleaning was one way to cope. I am not helpless when it comes to dirt. As Dad ages, I clean. Dad declines. I clean. Dad withdraws. I clean. You get the picture.

Over a year ago, however, I gained an insight about my Dad that has been helpful to me. He never asked me to cook and clean. While I may have been desiring deeper interactions with him, he was happy that we had simply shown up. That was it. He wanted us there. Period. He would greet us at the door when we came, but he would often retire to his sofa to read. We had come and that was enough. We didn’t have to talk. All we had to do was be.

Fast forward to the last several weeks in which my father has officially been diagnosed with dementia. We do not know what kind of dementia (Alzheimer’s, Frontal Lobe, Lewy Body, etc), but he has it, and it is irreversible and terminal. Let’s be frank: People die from dementia. At this stage of his dementia (personally I like to say cognitive decline or confusion . . . another coping mechanism), Dad still knows who people are and is still mobile, but he is more withdrawn, quiet, and less decisive.

As this journey with my Dad’s dementia continues, I see that dementia is ambiguous in that the decline is not in a clear, linear fashion. One week Dad can tell me exactly where something is in town, and the next week when I inquire about that same place, he has no idea of its location. It is as if pranksters came in the night and erased it from his mind. Each time this occurs, I experience another loss. I feel the shock of it (I can’t believe he doesn’t know), as a wave of grief sweeps me off my feet. On another occasion he will remember a piece of information that I was positive he had forgotten, and I stand there amazed. To say the least, his dementia keeps me on my toes. It is characterized with unpredictability with a certain decline.

Amidst his cognitive decline, he is giving me a gift. He is teaching me how to be present.
Being present is described in the movie Collateral Beauty. One of the main characters has a mother who has dementia, and rather than attempting to bring her into his reality, he began to meet his mother in her reality. What do I mean by presence? I liken it to an image of two streams: my stream and the other’s stream, and I have one foot in each stream. Let me also say that as a Jesus’ follower, there is a third stream which is that of the Holy Spirit which flows in and between the two streams. When I am present to the other, I am listening to the sounds that emerge from the streams and watching their currents. This is portrayed as a power that is with the other. Of course, when I get triggered (such as being shocked by an unexpected memory loss), I tend to move completely into my stream and out of his. I react rather than choose how I will respond. If I am triggered by an unmet expectation, I move to my stream by saying, “Don’t you remember?” or “Dad, you should . . .” Contrary to power with him, this reaction is displaying power over him. However, if I am to ask him, “Dad do you want to go for a walk or stay in the apartment,” I am being present to him by offering him two possibilities among many and allowing him to make the decision.

It is no question that being present to the Holy Spirit, to my Dad, and to myself is hard work. It is even more challenging as I am also attempting to navigate through grief when the losses occur before my very eyes.

Yet, being present, demonstrating a power with the other, is not ministry that is done in my own strength. Being present is what Jesus Christ has done for us and continues to do for us through the power and presence of the Spirit today, and we can participate in it. In John 1 we are reminded that the Word was God and the Word was with God in the beginning. It was the Word that created all things. There is no question in John 1 that Jesus Christ (the Word) has more power than humanity. He is greater, mightier, and beyond what our finite minds can comprehend. Yet, the Gospel of John is very clear that Jesus became present to humanity in that he “tabernacled among us” or “took up residence among us” (1:14). Jesus became present to this suffering world and to our suffering by living among us (Philippians 2 also states that Jesus Christ “did not regard equality with God as something to be grasped, but emptied himself by taking on the form of a slave, by looking like other men, and by sharing in human nature”). Furthermore, Jesus became present to humanity in his very being—his very person—in that he is fully human and fully divine. That is to say, within Jesus the divine is intimately present with humanity. Thus, Jesus ministers to us, not by exerting power over humanity but by embodying power with us.

The theme of presence in John is not only seen in the human-divine one but also in this Gospel’s emphasis on the Holy Spirit who is called the Comforter. Think about the word “comfort.” There must be pain and suffering if comfort is being offered. We do not extend comfort when there is an absence of pain, but we enter into pain when we comfort the other. In other words, comfort is not provided without the acceptance of the other’s pain. If I am going to comfort my father, it means I must stand with him in his pain (his stream) while standing firmly in my own stream. This is what the Holy Spirit does. He stands alongside us in our pain without being completely immersed in it.

Lest you think that being present is too bland and fails to generate results, I want to push back on this assessment. Many scholars say that presence is a dominant theme in John. It is unlike Mark’s Gospel, which stresses more miracles in Jesus’ ministry than any other Gospel, and instead John’s Gospel puts forth the importance of presence as seen in having the least number of miracles of the Gospels—with seven. It is as if John is placing his emphasis not just on the miracles but also on his being present with humanity.

I believe that the theme of presence is placed alongside another theme in John, belief. Presence is necessary for trust to be generated. Thus, if John has themes of presence and belief, it seems John is saying that through Jesus’ presence, humanity is offered the opportunity to trust. Presence, power with the other, creates an opportunity to trust the other. John is quite clear that not everyone believed, but God created the opportunity to believe both by the presence of Jesus as the human-divine one who walked among us and by humanity present with the divine in the very person of Jesus. Presence then is not a powerless act. It is empowering. It offers an opportunity for growth in trust.

While presence may nurture in my father an increased measure of trust, as his dementia increases, this growth may no longer be noticeable in him. Instead, it may appear in me. My father’s dementia may be an opportunity to transform me to be present to the other through trust, thereby making it a gift. Therefore, rather than being the one who flutters here and there, trying to cope with pain, an unmet need, or uncomfortableness, maybe my father’s dementia is what the Spirit will use to mold me to be present in ways that the Spirit is present.

Dad’s dementia, then, may be a gift to me. To borrow from Sara Groves’ song “This Cup,” it may cultivate in me an increased ability to turn from “fantasy” and/or “fear” and embrace the “challenging reality” and drink from “this cup” and stand “right here in the middle of it,” being present to you in your pain.

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