The Spiritual Dimension of Dementia

* I wrote this while my family was waiting for my mom’s definitive diagnosis. I have added an epilog at the end.

I am listening to the beautiful sound of heavy rainfall. The windows in my room are open and the sound of muffled thunder rolls around the distant sky. My 11 year old daughter, Roise, is singing to herself in the living room,

It sounds like my Fiancée, Bob, is playing “Petite Etude” on his guitar on the couch near her. Apparently a math homework break is in progress. Maire, my 15 year old, is reading- sitting barefoot on the floor in her room. I am still slightly wet from running out of the church after mass to get the car and bring it around for the girls. I offered up how cold the rain was on my skin as a sacrificial prayer for my mom.

I’ve been pondering dementia all day. By this I don’t mean spinning my minds’ wheels obsessing on it or trying to think what else it could be that Mom might have, or whether I’m going to have it (or how anyone will be able to tell if I do) or anything like that … the way I was before. I’ve been wondering what dementia means spiritually. I think this is partly me trying to find a way to understand this that takes away some of the horror of my mom’s dementia for me or at least gives me a way to think about it that I can stand. But I also think what’s happening in my mind shows that God is giving me not only a little bit of serenity but maybe a glimpse of part of my role, part of my particular walk with Mom and with God and with my family through this. I don’t know if it will make sense to anybody else. But it is beginning to give me a new point of reference that I think I will need, that maybe we will all need in this time ahead of us with Mom.

I remember after the death of my first husband, Blaze, in a car accident in 1998, being so afraid I would forget something about him. I would obsessively focus on remembering the curve of his cheek, the sound of his laugh, on and on. It was very painful to cling so tightly to each remembrance with such fear of losing it. Then one day it occurred to me that I really didn’t have to worry about that because God remembers everything. God remembers every hair of Blaze’s head. Even better -in God there is no time. Blaze’s past, present and future are all present to God. That thought applied to my mom gave me an image of her memory being released into God as the disease progresses.

I also thought about how the Church believes that even if my mom loses cognitive function so far as to have no idea who she is at some point- that her soul is still functioning within her. I’ll take that further and say there is a wisdom passing between her and God, a destiny being worked out and fulfilled whatever we might see on the outside. She is of course more than her body, more than her intellect or personality or social identity. She has infinite value in Christ and as long as she lives God has a purpose for her on earth. We all know that truth of our faith but how much do we really believe it? I think those of us who love my mom are about to learn a lot about that. Maybe she is too.

It came to me that there are three ways the soul can be stripped down to the “nada nada nada” of St. John of the Cross-, until there is nothing left but itself stripped bare before God. Death is one way this happens. The practice of an apophatic spirituality, releasing all that is not God in order to find Him in that “Cloud of Unknowing” where He dwells, is another way. Perhaps the progression of dementia is another way the process of holy negation can happen. Several times I have thought of my mom’s interests- gardening, cooking, literature, etc. being dropped behind her as she walks. These things so important in her life until now I imagine falling and then being left on her life’s path like accoutrements and uniforms she doesn’t need anymore. I am reminded of Blaze’s shaving things in the bathroom after his death. I couldn’t throw them away for a while. Then one day I thought of how much he hated shaving and how he didn’t have to do it anymore now. I smiled and I threw them away for him.

For Blaze the loss of the world’s and the soul’s external trappings was instant and abrupt. For the mystic and for my mom it is a slow surrender. It is interesting that John of the Cross says the memory is purified by hope. I wonder how that applies here. Complex mystical theology aside if I just saw that sentence, “memory is purified by hope”, I would think about my mom in the slow loss of orientation and desires and memory and wonder where the hope is. The hope is Jesus. Maybe unlike Blaze who was suddenly taken into God’s presence my mom is just going slowly- fading not into meaningless oblivion but into the Heart of Jesus, into the Kingdom of God where she belongs. I think of her common reaction, when she is irritated by some circumstance, of saying, “Well, maybe it will take time off my purgatory!” Maybe this is purgatory for her. Maybe she won’t have to go there now. Purgatory means “purification” doesn’t it?

What if someone went through this degenerative process of Dementia, as much as he or she was able to – with love? What if this person said, “OK, God, here is another part of me for you to keep- I can’t.” I wonder if anyone could do that at least for a while? Dementia is such a heavy cross. Does anyone accept it with love eventually- with faith hope and love- which are the only things that remain in the end? Do those remain even at the end in ways we don’t begin to understand? These three things are not intellectual concepts of the mind. They are so eternal they’ re all that remain. As far as I know they are the only things that go with you when you leave this world and even after this world ends. What does that mean in this situation?

My brother, Mark, is preoccupied with my mom’s apparent sense of isolation. He hates the thought of her being alone in her deteriorating mind. But she isn’t. In the vast gray silence of dementia God is still there, maybe even more there. Who knows but that she will know this better than we do who stand by? If the connections I am making are true then the mystic knows the answer to that. That’s exactly where God is.

Mom doesn’t know about her diagnosis and we won’t have a definitive one for a few weeks when we will hear it at her next appointment. We will all be there with her. I am trusting, or trying to – that God will send each of us whatever grace we need that day. I suppose we each need a way to think of this that makes sense to us. Maybe I found mine.

*Epilog: My mom was diagnosed with Fronto-temporal Dementia and Lymphoma in 2008 at the age of 59, and later, COPD as well. On her own inspiration from the beginning she offered her suffering and her life in union with Christ’s for my brother, who was having very great difficulties, and for our family. She said she felt that God had accepted her offering. She died October 2012 in my care. In the couple of months before her death she had not been able to speak or understand very much at all. Even yes no answers had been hard for her to give. But she started talking a few weeks before she died. She talked a lot about God. She prayed aloud often and seemed to have conversations with the Lord. In one of these she said, “Yes, I’m ready. I’m ready to become a lamb.”

To read the cool obituary I wrote my mom check here: