The following is a sermon I preached at the conference Eucharist of the 38th annual Atlantic Theological Conference held in Sackville, New Brunswick. The propers of the mass were those for the Feast of St. John the Baptist.
The Loss of Memory and the Human Person: Caring for our Loved Ones with Dementia
June 29th, 2018
“But Zion said, The Lord hath forsaken me, and my Lord hath forgotten me. Can a woman forget her sucking child, that she should not have compassion on the son of her womb? Yea, they may forget, yet will I not forget thee. Behold, I have graven thee upon the palms of my hands; thy walls are continually before me.” (Isa. 49.14-16)
In the name of the Father, and of the Son, and of the Holy Ghost. Amen.
I had the opportunity, during my time at seminary, to work as a student hospital chaplain at the Camp Hill Veteran Memorial Hospital in Halifax for a Summer.
Four months spent on the east wing of the fourth floor, the 2nd highest-needs floor in the hospital, second only to the 5th which had coded gates every 40 or 50 feet.
My job was simple – spend a summer visiting on a rotating basis the 25-odd men who lived in my wing. Spend my days with them, listen to them, help them and, occasionally, since many were not interested in it, pray with them.
All of the men who lived in that wing were there because of some level of dementia, or (and often also) because of very high physical-care needs. All had served in the armed forces, and almost all had seen action in either WWII or Korea.
Many of them suffered constant physical pain of some kind, nearly all of them suffered from the indignity of helplessness, and all routinely suffered from the lingering effects of their combat experience. Often, mid-day naps would be cut short by nightmares, and screams would echo down the hallway.
Some of them could not remember where they were or why they were there, but in a moment could describe with shocking clarity the heat of the inside of their tank in Sicily, what it sounds like when flak peppers your bomber as you are flying over Dresden, or what the smell of war was like.
Most of their memories had faded, but the details of these stories never changed no matter how many times I heard them.
But this isn’t surprising to you, because we all know someone who has dementia. We all know how old and distant memories can be present to a person who can’t remember what they did that morning. We’ve seen people pick up a fiddle or sit before a piano and play beautifully with the very same hands that cannot be used to feed themselves.
Many times I met with families on their way out of a visit and asked how they felt their family member was doing. “He’s out of it today,” I often heard or, “he’s not there anymore.” I would watch their fumbling encounters, keeping the visit short because, well, the demented person isn’t getting anything out it. Speaking their few words in infantilizing tones they would be embarrassed to use with a baby or a family pet.
In some ways the families can’t be blamed, it is a terrible thing to see a loved one begin to lose the ability to speak or to read or to care for themselves. How many of us have heard (or perhaps said) that we hope we die long before we have to suffer that particular indignity?
It’s something that we don’t know how to handle, we don’t know what to do with it because – in our culture and in our time – without memory, without complete rational faculty, we have been led to believe that we have no identity.
In 2011 televangelist Pat Robertson, on his show The 700 Club, took a call from a man seeking advice on how he should counsel his friend whose wife’s dementia had developed to the point that she no longer recognized him.
“His wife as he knows her is gone,” the man said, “and my friend is bitter at God for allowing her to be in that condition, and now he’s started seeing another woman.”
“This is a terribly hard thing, I hate alzheimer’s,” replied Robertson, “this is the woman or man that you have loved for 20, 30, 40 years, and suddenly that person is gone. I know it sounds cruel, but if he’s going to do something, he should divorce her and start all over again.”
Robertson’s co-anchor questioned whether this was in keeping with the marriage vows of, “till death do us part,” to which Robertson replied, “This is a kind of death.”
Our understanding of personhood itself has been frighteningly distorted by our culture’s obsession with rationality being the thing that makes us an individual.
We are a whole person only insofar as we have absolutely autonomy and agency over our own lives; what defines us as individuals is not the image in which we have been created, but our capacity to choose and realize our desire without intervention or infringement.
Dementia itself is in essence an umbrella term for the deterioration of brain function and memory caused by diseases such as Alzheimers. With dementia, consciousness is not impaired but memory, thinking, orientation, comprehension, calculation, learning capability, language, judgement, emotional control, and behaviour are all impaired and continue to deteriorate.
The effects of dementia are experienced externally, but for anyone who has ministered to or spent time amongst dementia sufferers, we know that what is happening on the inside of those persons is far more complex than what seems to be happening from the outside. People who are usually non-communicative may suddenly speak the Lord’s Prayer alongside you, or utter hearty amens at the end of prayers.
The subtleties of what those with dementia experience are unknown to us, and when we assume that they are “out of it” or “not there” we gloss over the experiences they may be able to have.
But this is what scares us the most when we encounter those with dementia – the feeling that we face an empty shell, the awkward silence with someone who is unable to speak, the long gazes of confusion. It ties our own tongue or causes us to blurt out in a dehumanizing way just to fill the silence.
We are created in the image of a triune God who Himself is constituted by relationships of love betwixt Father, Son, and Spirit.
It is by our creation in this image, that we are created in the image of one who is a relationship of love, that we know that we are called to live in community. That we are called to live in reciprocal relationships of love with one another – even those, or perhaps especially those – who are stricken with illness or incapacity.
The warehousing of the elderly and the demented into high-rise institutions, the lack of proper care and support they often receive is all indicative of how the world ceases to understand those people are part of society, part of community, the moment their rational faculties seem to diminish.
The right and proper care for those in these situations, especially for people in our families, in our friend circles, and in our church communities must begin from our understanding that they are no less part of our family, one of our friends, or a member of the parish just because they have dementia, are kept from church, or have been institutionalized.
We must see that the human person, the person living with dementia, is not defined by their memories but by the fact that they live in the memory of God; as the Lord says in the quote with which I opened this sermon, “Yea, they may forget, yet will I not forget thee. Behold, I have graven thee upon the palms of my hands.”
And if they find themselves unable to remember this, then it is for us – their church community and fellow members of Christ’s body – to remember it for them.
The world views memory as something which belongs only to the individual, and so when memory fades so does the person, but we recognize, especially through our participation in the Holy Eucharist, that memory is not individual but communal.
In our life together as Christ’s body and through our prayer and our worship we constantly recollect God’s faithfulness to us in Incarnation, the Resurrection, through Pentecost, through the miracles and teaching of Christ and the apostles.
Our life together is about a collective recollection of these truths.
But this recollection does not just memorialize these truths, it makes them truly present before us. The Eucharist does not memorialize Christ’s sacrifice for us; our recollection of it makes it present to us, it allows us to eat his body and his blood, truly.
For those who cannot seem to recollect – to pray, or to join their community in church, or to read Scripture – we can recollect for them at the altar on Sunday, in our prayers with them, and in our prayers for them. Memory is not theirs but ours; in doing this we not only help them to recollect, we bear their burden in a very real way.
We ought to read for them, pray with them, spend time with them, enter into and be comfortable in the silence that many of them inhabit – remember that moment, one of the most beautiful images of pastoral care in all of Scripture, I think, when Job’s friends simply sit with him, “So they sat down with him upon the ground seven days and seven nights, and none spake a word unto him: for they saw that his grief was very great” (Job 2:13).
And though it may seem a simple thing, we as people who care for (or can care for) those with dementia or indeed any sickness must never forget what we hear tonight through our commemoration of the Forerunner John Baptist.
Zacharias, John’s Father, filled with the Spirit prophesies about the new born child and the purpose for which he has been born: preparing the way of Christ, “Blessed be the Lord God of Israel: for he hath visited and redeemed his people and hath raised up an horn of salvation for us in the house of his servant David,” he says, “that we should be saved from our enemies, and from the hand of all that hate us.”
The enemies that we face in our life are not always people. We face the enemy of fear, the fear that we may one day find ourselves in the midst of dementia, or the fear that we will forget those we love; we face the enemy of illness and indignity, of dehumanizing care, of loneliness, of abandonment.
But we remember, today especially, that all of these enemies, all of the calamities we face in our lives, all of our hurt and our sickness and our pain, our brokenness and loneliness – from all of these enemies did Christ come to deliver us, and John the Baptist is the testament to this.
We were never given a promise that we would be free from suffering, from hurt, or pain, and it is not for us to know why some become stricken with dementia and others not.
But it is for us to know and to share the vital truth that though some may lose their capacity to remember or to communicate, God can never forget us.