Alzheimer’s Death: Reframing for Positive Meaning
The ego is the great comparer. It’s what frequently separates us from the Other, from others, and frequently from our true selves.
The ego is a hardliner for self-preservation and will do practically anything to ensure that it survives over and against even that, which might ensure or even enhance the existence of the physical or spiritual being. Primeval emotions ensured survival in an primitive world of threats. Take anger, for instance, which recognizes a threat and responds with opposition to that threat. In the primeval era that anger involved a physical response, a fight or flight response. Today, that anger cannot be defused by a good fight and there’s nowhere to really hide in the modern world; consequently, it becomes uncontrolled anger, rage, or repeatedly relived anger, resentment. Or it simply becomes denial when the threat cannot be embraced by them mind or is simply too overwhelming.
These statements, while perhaps oversimplified for the purposes of this article, are excellent introductions to a discussion of afflictions of the mind or body, and ultimately of death. The ego, the relentless comparer, views afflictions and death as threats, but cannot make sense of them. The ego perceives these through the five senses it uses to view the world and doesn’t like what it finds, it cannot get its arms around it, it cannot control it. The response is a whole spectrum of emotions like anger, rage, confusion, depression, loneliness, anxiety, etc. that especially in bereavement and grief aren’t experienced as discrete, controllable emotions but as a tangled, unmanageable mass. To avoid that extremely uncomfortable experience of bereavement and grief, the ego generally chooses denial over humility and reality. After all, it’s happening to someone else, and it’s terrifying nonetheless.
As a spiritual care provider, I frequently have to reframe the experience for the observer of the suffering, frequently after the suffering is done and the sufferer has died. I reframe the experience by bracketing the overwhelming negative impressions by exposing the experience in a positive light, defining the meaning of the experience, and describing how the survivors can nurture spiritual growth from the experience and transform it into spiritual growth factor in their continuing lives.
I used one such reframing in a homily I recently gave when officiating a funeral for a woman, who died of the complications of Alzheimer’s disease. Here’s the homily.
Be Like a Child
What the Awesome Witnessing of Alzheimer’s Disease Teaches Us.
A Funeral Homily Delivered on December 5, 2015, for PMS.
May she be of memory Eternal!
We tend to think and live in dualities; black or white. On the one hand we claim that death should be a joyous event, a homecoming, a necessity for salvation and glorification, and on the other hand we tend not to speak of it, to deny it, to abhor it. We do the same thing when it comes to our views on our human frailty and weakness, both physical and spiritual.
Today, as we assemble here to remember the life of a loved one, we are faced with the real – life fact of death as well as the circumstances of that death, advanced age and Alzheimer’s disease. We live in denial of death and terror of terminal frailty but here we are today.
Death, like life itself, is radical mystery. In death, we leave everything behind; in dementia, Alzheimer’s, we appear to leave everything behind. It would seem that in our culture of anxiety, egos, individualism and independence, all we have is our stuff and our past. And we live in abject fear of losing our “stuff.”
For example, when a person comes to me for counseling, it is as if they come carrying a bag with two handles filled with memories. As their stories or memories are shared, it is as if they give one handle of the bag to me, the listener. Normally, when the dialogue ends, I give that handle back to the person to carry alone. However, in the case of the person with dementia, in the beginning they can share their bag filled with stories, but as the condition progresses, not only do they give one handle over to the listener, they then give the other one as well. A spiritual crisis then is more for the observer than for persons with dementia: “Who will carry my story, when I am no longer able to do so?” But just like a person who has had an amputation is challenged to live without or with substitutions for the missing limb, a person with dementia must have help from her community and loved ones to continue to be the person that she has always been for as long as possible, and and then given permission to become the person she is becoming.
You see, the role of memory in the nature of who we are seems to reflect the capacity to contain the history of the person. Memory is all the stuff, the baggage of life that the ego contains; it’s all that stuff that the ego uses to define what we call a person. But if we recall the origin of our word “person” we’ll remember it comes directly from the Latin “persona,” the mask an actor wears on stage. So if memory defines a personal history and that history defines the person, it defines a mask, a false self. We tend to think that where there is no memory, there is no person. Perhaps that’s so to the observer. But that applies only to this world, in which time seems to matter. Perhaps when that bag of stuff becomes empty, we find the pure true self, the soul, the self that was ours before the Fall, and not the person, the mask.
In the text selected for us and read by F. from the Book of Wisdom, we learn that the “righteous are in the hand of God,” and “no torment shall touch them.” We also learn that only the “foolish” see death as a “passing away,” as an “affliction,” and when someone appears to die, physically or mentally, the foolish view this as “utter destruction.” But those are the views of the “foolish”, not the faithful.
In the dementia of advanced age or in Alzheimer’s, we see a “passing away” or a fading away of a familiar personality and her history and stand by in terror as if it were indeed an “affliction” or “utter destruction,” but viewed in another way, perhaps it is a preparation, a “sacrificial offering”, indeed a lesson full of meaning for us. The cycle of child-to-adult-to-child is full of meaning and we find that meaning in the Gospels and elsewhere in Holy Scripture.
Scripture teaches us: “He will stand and shepherd his flock in the strength of the Lord, in the majesty of the Lord her God. And they (His flock of believers) will live securely, for then his greatness will reach to the ends of the earth. And he will be her peace” (Micah 5:4, 5). We have security and peace through Jesus, our Good Shepherd. This same assurance from our Good Shepherd is given in the familiar and truly comforting twenty-third Psalm. In verse 4 we read: “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff (the power of God’s Word) they comfort me.” King David trusted in the Lord’s promises and so can we!
In Matthew 11 (28 – 30) Jesus invites us: “Come to me, all you who labor and are burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am meek and humble of heart; and you will find rest for your selves. For my yoke is easy, and my burden light.”
But How? How do we get to that point? P. showed us how.
How many of us have watched a young child play on the beach or in a sandbox? We become absorbed in the child’s pure enjoyment of the sunshine, her simple understanding of the world around her, and her utmost delight in the sand flowing between her fingers and squishing between her toes. We wonder how we could become more like the little child, careless and free. Purity, simplicity, delight, carelessness, freedom. Those are the qualities of a child and the qualities we tend to yearn for.
It is infinitely difficult for some of us to become like weak, dependent, trusting children and so to gain entry to the heavenly kingdom. But with God’s help and seeing beyond our own needs, it can still be possible.
Interestingly, at several points in the Gospels Jesus focuses his attention and teaching on children, children being more of a metaphor than actual children. There are at least three themes: Jesus’ blessing of the children in Mark 10:13 – 16. The second instance is where Jesus invites adults to become like little children in Matthew 18:1 – 6. And the third instance is in the context of the Sermon on the Mount in Matthew 5, 6, and 7. And it is the characteristic of Christ to defend those who cannot defend themselves, to lift up those who have been humbled.
The kingdom of God belongs to the childlike. The Kingdom belongs to those who are like children, those who are the sick, the suffering, the dependent, those without rights, and without the esteem of those around them. The Kingdom belongs to those who, though not literally children, have the characteristics of children like trust and receptiveness.
But we are often fearful, distrusting, and unreceptive to each other. What’s worse we teach our children to be the same way. But it is the trust and simplicity of the child that allow the childlike to enter the Kingdom of Heaven. Young children, like persons in advanced age, the demented, those with Alzheimer’s in their simple trust are dependent on others for food, shelter and protection; just as we are dependent on God for the necessities of survival. That’s the lesson, the meaning we learn from those with Alzheimer’s: If we remember P’s final episode in a positive light, we must recognize our radical dependence on God for all that we have and all that we are, and that we must give up all claims to the things and stuff of this world; we must even give up our personal history and even our memories that bind us to this world. It is these attributes of trust, dependence and simplicity that allow children, the childlike to receive gifts without guilt or the anxiety of indebtedness just as we must accept the gift of grace without guilt and anxiety.
Children allow others to give them gifts without troubling themselves with whether they deserve it or must compensate for them; it is in this childlike attitude that we can appropriate the blessedness of the Kingdom of Heaven. With the fading of memory there is a fading of guilt, anxiety, indebtedness. This is the return to childlikeness that we see in those preparing for death, for going home to God without fear or guilt. It’s what we see in those with dementia and Alzheimer’s; they have shed everything of this world, including the false self, the ego, and all attachments. Salvation cannot be received with an attitude of guilt and debt.
In the Gospels, then, “children” is used figuratively to mean the simply faithful, those trusting in God; those who have lived a life of discipleship, of caring for others, P’s life.
Jesus invites adults to become like children and, when asked the question, “Who is the greatest in heaven?” He calls to his side a child and places himself on a par with the child. (Mt 18:3 – 5)
“At that time the disciples came to Jesus, saying, “Who is the greatest in the kingdom of heaven?” And calling to Him a child He put him in the midst of them and said, “Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles herself like this child is the greatest in the kingdom of heaven. Whoever receives one such child in My name receives Me” (18:3-5)
Over and against all conventional notions of value and importance Jesus offers us the model of the child, the least important in society. Just like the old, the demented, the terminally ill in our society. No status or position; subject to the control of others, dependent and powerless. But in the Beatitudes, the Sermon on the Mount, we read that Christ considers the weak to be strong and the humble to be powerful. This is not natural, it’s a radical change! But those who want to get into heaven have to somehow make this radical transformation. P. presented us with a teaching moment par excellence, to be remembered especially when we encounter suffering and powerlessness. The old, demented, the terminally ill teach us that we must humble ourselves until we are like a little child. It’s a hard idea to grasp and even harder to put into practice. That is, until we are in the unique situation of the awesomeness of witnessing and being present to those with Alzheimer’s and similar conditions.
In Matthew 18:5 we read, “Whoever receives one such child in My name, receives Me,” and the gospel of Mark records a very similar verse in chapter 9 verse 37, except that it adds “and whoever receives Me, receives not Me, but Him who sent Me.” What an amazing thought! That we can receive Jesus, God himself, by receiving a simple, dependent, childlike person.
Jesus turns the earthly order topsy-turvy; turns the natural order on its head. “Blessed are the poor in spirit.” (Mt. 5:4) means blessed are the meek and humble. “Blessed are the pure in heart, for they will see God.” (Mt 5:5) this extols the virtue of purity and guilelessness. It is the heavenly order not the earthly order that Jesus emphasized when he blesses the children in Mark 10 and when he points out a child when asked who is the greatest in heaven.
We have only to remember Luke 16:19 – 22, the parable of the beggar Lazarus the beggar and the rich man. Old Lazarus gets the scraps from the rich man’s table, and stray dogs nurse his sores. But in death, the beggar Lazarus is given a seat of honor at Abraham’s side; the rich man is condemned to suffer thirst and agonies in a hell. When he begs Abraham to send Lazarus with a bit of water to cool his thirst, Abraham rebuffs him for his thoughtlessness in life. In desperation, the rich man begs Abraham to send someone back from the dead to warn his brothers of the consequences of their materialism. Abraham replies that in life they have the opportunity to live by the Gospels and if they choose not to, they won’t even heed a messenger returning from death to warn them. The conclusion is simple: Clinging to the things of this world, including ego, is foolish since none of it lasts; Jesus presented us with “children” as an example to “adults” because the childlike are unattached to materialistic concerns. The childlike are the greatest in heaven.
So, dear friends, while we mourn the loss of a truly dear and righteous person, and while we may be horrified by the changes in her brought about by Alzheimer’s, perhaps we should rather be in awe of the lesson and meaning granted to us by P., because there is Divine meaning in her last days among us if we can take the moment to see it.
The child is not afraid to ask for help, the child is unashamed of being needy, because they realize that they are dependent on a parent for their needs; the basis of the child’s confidence and the cure for the adult’s anxieties lies in recognizing God’s presence among us, and accepting God as our heavenly father, putting God first and trusting him for our practical needs.
Please click Homily-Become like a Child-PMS to download a pdf copy of this homily.
Special thanks to Sharon Ely Pearson for her insights shared in “Ministry to those with Alzheimer’s disease,” posted on August 16, 2011, at http://www.buildfaith.org/2011/08/16/ministry-to-those-with-alzheimers-disease/ last accessed on November 27, 2015; Maryana Misula, for her discussion of “Jesus and Children in the Gospels,” available at http://fisherpub.sjfc.edu/verbum/vol6/iss1/10, last accessed on November 27, 2015, and to James W. Ellor, “God Never Forgets: Senior Ministry and Dementia,” at http://www.baylor.edu/content/services/document.php?id=47151, last accessed on November 27, 2015. Kenneth S. Pope has put together a good list of resources on Alheimer’s disease for clinicians and caregivers, “Resources for People with Alzheimer’s, Family, & Clinicians,” which we will gladly provide on request.