A Dementia Nightmare

Watching fish 
on a digital screen
over and over again they swim
Some times with sound 
sometimes silent
It really doesn't matter  -anymore-
to me

Little fish swim
back and forth
no place to go -like me-
Never changing
always there
This is the only life I know 
but who cares

Watching fish
on a digital screen
over and over again
until I die

DM-2021

Warning to Prophets

Will the words be true
Will the heart be right
Will the message blind
Or will it bring sight

To some the task is given
To others it is wrongly assumed
For some a compulsion driven
For others a path of doom

Never to be taken lightly
Is the authority of the Word
It is to be divided rightly
If it is to be correctly heard

A curse be on those who use it
To their own power and or gain
Who stand and deceive in the pulpit
Without sorrow remorse of shame

So be careful and beware
For you may not know what you do
And make sure you deeply care
For it is the truth you pursue

Hungry needy waiting souls
Await what God might say
Providing you come with humble awe
To share the Word today

The Soul Listens

There are times we see what we want to see. There are also other times when what we see or notice is exactly what God wants us to see. When we notice these things it can produce hope and joy beyond description.

I am currently working with very old adults in differing stages of dementia. I took on this work in hopes of being support in some way to these wonderful people who face one of the most terrible disabilities a human being can face. In the group (varying from 10-15 adults) I have some that usually are in a near vegetative state. I work with others who are in out of what we call reality. There are a few who have ended up in the care of the facility for various other reasons. Because several of these residents cannot carry on a rational discussion or show any signs of understanding what I am doing for them or saying to them I often wonder what the state of their soul is in regard to their relationship with God who brought them into being and loves them even if they cannot seem to remember their own name.

Then I began to notice something. When I just read the Bible, the group becomes quiet, apparently focused, and smiles. At first, I thought it was just a coincidence (yet I do not believe in coincidences). Maybe just having someone read to them was what captured their attention. However, when I read other materials it does not have the same effect. So I began to pay more attention to the group as I read. When I read the Bible, they are listening. I cannot prove it but I believe the soul listens.

I am reminded of the Scripture: Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. (Isa. 46:4 NIV)

I believe deep inside the soul of the residents I serve is a heart well attuned to the Word of God. Once again I am reminded that even when we reach a state of age and fragility we may not remember God, God is with us.

Frustration

With a broken heart and hurting soul I considered never writing on this blog again. I felt that this blog is just another place where I am yelling into a dark cave. I had just gone through an ambush evaluation of my work with dementia residents. I was accused of not being a “team player” because I had questioned why staff was not wearing their face masks when around me and the residents. I quickly found out that any complaint that questioned the methods of care or threatened the projected marketing of the place where I am employed would not be tolerated. Sad, so sad. I was even lectured on how compromising is “doing everything for the glory of God.”

I considered simply resigning and moving on but then I would be abandoning the individual residents I had been helping to maintain their spiritual lives in spite of their disability. I have decided to continue to maintain my integrity (some would say charging windmills) even if this results in a forced termination (been there before). Getting fired is not that bad if you can accept it for what it is.

While the place I am working is much better as far everyday living conditions than many places I visited as a pastor it is still clear that this company believes profit precedes what is best for the residents. I once again understand the great mistake the church made in turning hospitals, hospices, and care for individuals with disabilities over to businesses. But then again so many churches are simple businesses who try to sell a product with the name of God attached. The money-changers have won.

So I will continue to try and help the people I serve as long as I can and will not compromise my convictions or practices. I will continue to strive to provide person-centered care in spite of what the company policy is. Thankfully, I believe, the company is not aware of this blog. If it is then I likely will find myself in the category of the unemployed soon than later. I also will continue this blog in hopes that it may help some in the future.

What We Can Know and Cannot Know

Night I had a terrible nightmare. I dreamed I lived in a house where a demon had been released. This demon had the power to prevent lights from being turned on and was able to drain batteries of their power. In the dream I sought out help from members of a ministerial alliance. Only those who had a liturgical tradition tried to help me. I woke up before I could learn what evil the demon had in store for me.

Last night, I had another horrible dream. I dreamt I was an aid to a powerful and corrupt individual who would reward me if I helped him with his devious plots and lies. Thankfully I woke up before I became to involved or accomplished the nefarious acts I had been assigned.

Dreams can be so strange.

Now why did I have such dreams? I am sure there are those who would be glad to tell me exactly what my dreams met. There was a time when I would have used my training and theoretical understanding of psychology to try and interpret my dreams. However, now, unless deeply moved by the Spirit, I just accept that I will have dreams, thoughts, questions and other cognitive blips that are the essence of mystery. Living with such mystery allows me not to worry about such things but instead trust in the providence of God.

As a certified spiritual director I have come to understand and accept a profound truth in helping seeks and myself in my relationship with the Lord. This truth is ultimately we can never fully know the mind of God.

You search out my path and my lying down, and are acquainted with all my ways. Even before a word is on my tongue, O LORD, you know it completely. You hem me in, behind and before, and lay your hand upon me. Such knowledge is too wonderful for me; it is so high that I cannot attain it. (Ps. 139:3-6 NRS)

As I work with individuals who have the disability of dementia, I am often asked questions (and have questions) concerning issues that they, or I, have no control over and no rational way to explain. If I tried to answer or give an explanation I find it is completely inadequate and basically useless. I have found the individuals that I work with are much more satisfied with the answer. “I don’t know.” At least this answer puts me on a level of vulnerability with them.

The drive for certainty can be the most damaging path on our spiritual journey we can experience. It does not increase our faith and can be gateway to pride and spiritual ignorance as well as toxic to experiencing God. I am being taught by people with the disability of dementia that the power of simply trusting in spite of barriers to cognition opens one up to greater assurance and peace in the presence of mystery than any other path we can take. People with dementia my not remember their name, or God’s name, but they do remember feelings. They can experience love. They embrace true compassion and responded to positive relationships not on the basis of certainty but on patient presence.

Seek the LORD while he may be found, call upon him while he is near; let the wicked forsake their way, and the unrighteous their thoughts; let them return to the LORD, that he may have mercy on them, and to our God, for he will abundantly pardon. For my thoughts are not your thoughts, nor are your ways my ways, says the LORD. (Isa. 55:6-8 NRS)

I cherish the above passage of Scripture. I cherish it not because I can understand it but because I can experience it. I know it is true not through certainty but through trust and experienced assurance.

The disability of dementia is a difficult path. One forgets things we take for granted we will always remember. Perhaps this is why it is such a feared diagnosis to receive. Yet, while those with this disability my forget those they love they will not forget that they love. Event though they may forget their own name the will not forget forget that they are and even though they will forget God they will not forget the feelings God has given them.

The following statement comes from the late William A. Berry, SJ and is a reminder that God also accepts the mystery God has asked us to accept. I hope this will give you something to think about.

The very fact that the Spirit is the least mentioned Person of God indicates God’s willingness to become the forgotten One in order to move us to become the human beings and the human community God creates us to be. God’s self-revelation is all of a piece. God is the compassionate One who abases self in order to win us over to friendship.*

*William A. Barry. A Friendship Like No Other: Experiencing God’s Amazing Embrace (Kindle Locations 1236-1238). Kindle Edition.

The Resilience of Love

“Nothing is sweeter than love; nothing stronger, nothing higher, nothing more generous, nothing more pleasant, nothing fuller or better in Heaven or on earth; for love proceeds from God and cannot rest but in God above all things created.” — Thomas a’ Kempis

Tomorrow I will return to the place where the residents I work with live. Tomorrow I will once again see sweet people do the best they can to remember love in their lives. They will try to remember loved ones who have died. They will try to remember loved ones who, for whatever reason, cannot live with them now. Some will even do their best to reflect upon the relationship they have with God.

As I work with those who have the disability of dementia I have opportunity after opportunity to see the resilience of love even in the failure of memory. Each day at work I am blessed with the experience of the memory of love that is rooted in the depth of the soul which preservers through some of the most difficult struggles a human being can face.

Christian theology is founded upon the assurance and trust that God is love. Those who are true adherents of the faith hold tenaciously to the confidence that God the Father, God the Son, God the Holy Spirit, the Trinity loves us and treasures us no matter what. Forgiveness comes from love. Patience comes from love. Hope comes from love. Inner peace is sustained by love and love alone.

So today I think about the love I am going to see as I prayer for those I will encounter. I also ask myself, “Am I going to be able to model love, remain in the embrace of love and give these people the love from me they deserve after allowing me to learn so much about love from them?”

I pray God will help me to do so.

Patience is NOT a Virtue But a Necessity

This last week while engaged in a word memory game with several residents at the memory care center, an alarm went off. Needless to say it startled me and provoke a quick reaction. One of the residents was trying to go out an emergency door. As I bolted over to the hallway leading to the door I saw a man (who I have told literally over a hundred times that this alarm would sound and he could not get out the door) standing at the exit trying to get out. Without thinking an anger rose up in me. Why did this guy do this. Why did not listen to what I say.

He couldn’t.

I had no right to be angry with this individual. He was not responsible. He thought he would find his wife on the other side of the door. This was his reality. He lives in the center because his disability keeps him from functioning fully in our reality. He has very little short term memory.

I start to raise my voice telling the man he could get in trouble for setting off the alarm (no he couldn’t). Luckily (providentially) there was another worker close by who came over and gently hugged the man and told him everything would be alright (I have often wondered if this worker is really an angel in disguise). I felt horrible about my initial reaction. I said a quick prayer asking for forgiveness for my attitude.

Let there be no doubt, the obstacle of trying to live a life with dementia is not an easy task. Working with an individual with dementia takes patience, no, it demands patience. I will pray for more and more of this wonderful state in my life. It is the least I can do for those who bravely live with their struggle with dementia.

Child-like not Childish

“[Jesus] sees in children traits and attitudes that are essential in anyone if he is to gain heaven, and, even in this life, if he is to enter the kingdom of faith. A child is devoid of even the slightest feeling of self-sufficiency. It is in constant need of its parents, and knows it. A child is fundamentally a being in need, and this is what a Christian should be before his Father God, a being in total need. A child lives fully in the present and nothing more. The adult’s less admirable predisposition is to look restlessly to the future, ignoring the here and now, the present moment, which ought to be lived to the full.”
—Fr. Francis Fernández Carvajal

To become like a child in the manor our Lord exhorts us is not an easy task. It is not easy to become a person who truly understands that we depend upon God whether we know it or not. It is not easy to trust the One when this trust requires faith and not certainty. It is very hard to live confidently in the awe and mystery of life when life can be so cruel and capricious.

I believe this is perhaps the greatest gift one can receive in spiritual direction. The gift of dependence upon the Father to guide us to what is best. This gift makes it possible to allow God to be both parent and friend.

Living in a fallen world that seeks to deceive us into believing we are our own salvation and masters of our own fates leads only to suffering and grief. It limits our spiritual creativity, stunts our growth in faith, and often leaves us bored and depressed because we are not aware of the loving presence always by our side.

Seeking to be child-like (not childish) opens us up to divine play and merriment. Such seeking makes talk with the One who love us so more open, honest, and receptive to the wisdom and true compassion that only God can provide.

Working with those with dementia has shown me that those who have maintained their child-likeness can find happiness and meaning even as they lose their ability to think. I have also found that those who have maintained their childishness are more likely to be bitter, depressed, and frustrated as their perceived power slowly drains away.

The Poet is Important

This last week I started something new in our memory care unit. We had our first poetry circle. This idea was not my own, but one I picked up from reading, The Montessori Method for Connecting to People with Dementia , (Tom & Karen Brenner. Jessica Kingsley Publishers). I was amazed at what the residents created.

The following is one of their poems.

A Man Living Here

To be a man in this place Never can be a disgrace A victory shall always discover As I seek to be a lover Which normally occurs as strong And never will I be wrong The women they seem so wise And have the power to surprise I am very comfortable I enjoy the part I play I am not dump-able I hope you see my way

Authors: Wilson, Pat, Gigi, and Mary

I wish I could provide actual pictures (HIPPA no no) in order to show the emotion and joy on their faces as they realized they can still be creative, humorous, and insightful. Next week we are going to write poetic prayers. Stay tuned.