Dementia and resurrection

March 20, 2015
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Our culture’s judgment on dementia comes down to three words. The first is deficit. No one has a positive association or reaction in relation to dementia. It’s all subtraction from regular life, all taking away, all negative. There’s nothing good to say about it. It’s a curse from a wicked fairy, and there’s no magic wand to wave it away.

The second word is decline. For dementia the arrow only goes one way, from bad to worse. There are no recovery stories, no websites with breakthrough diets or amazing parent turnarounds. It never gets better. It just goes downhill. It’s a story of decline.

The third word, the one lurking in the back of every conversation about dementia, is death. Our society looks on dementia as a living death. Facing up to dementia as the sufferer or the patient is like grieving a bereavement. I’ve presided at funerals many times for those who’ve spent the last chapter of their life living with dementia. It’s as if the family members have faced two losses. Often they’re very confused about whether this second occasion is a release, because the dementia has seemed like a prison, and any way out of the prison, even death, must be a release. And it’s not always clear if the release is for the sufferer or for the family.

Deficit, decline, and death sum up our culture’s attitude to dementia. When a person and a family receive a diagnosis, that’s what they’re facing. Half the people in the world over 85 have some kind of dementia, so it’s very common, yet it’s become the repository for our society’s deepest fears. In the light of these associations it’s not surprising that the reflex is to hold tight, to try and avoid decline, to pull back from the abyss of deficit and death. It’s an understandable reaction. Dementia seems to rid a person of everything that’s of value: one’s past, through the loss of memory; one’s relationships, through the blurring of recognition; and one’s dignity, through the diminishment of sense of self and self-care. Holding on through a struggle for memory often results in conflict, and for the caregiver it often results in exhaustion and guilt (the lack of progress seems to require someone to be to blame).

I’ve found some insight into all of this in the first Greek word that I learned, the first-person verb luo. I quickly discovered that it means “I loose”—it’s a particularly useful verb for those who’re in the habit of tying up oxen or releasing mules.

But then comes the great day when you first pick up a copy of the New Testament in its original Greek. And then you enter a new world. You read the end of the raising of Lazarus story, and, as Lazarus comes out of the tomb, Jesus says, “Unbind him and let him go.” Here the word luo means “unbind him’” (turns out it’s useful for more than oxen). You read the sonorous words of Ephesians, “He has broken down the dividing wall of hostility,” and discover that the word for “broken down” is our little friend luo. You look at the description of Jesus in the book of Revelation and read, “Him who loves us and freed us from our sins by his blood.” There’s luo again, busily freeing us from our sins.

Little luo makes an appearance at these and plenty of other moments in the New Testament. What all these moments have in common is that each one of them paints a picture of resurrection. Resurrection is the defeat of death, the reconciling of hostile parties, the raising from the tomb, the healing of the sick, the restoration of the outcast, and the forgiveness of sins. Luo starts off meaning loosing donkeys but ends up meaning all of these things.

I think luo has something important to teach us in the face of dementia. In the face of deficit, decline, and death we try hard to cling on. But the lesson of the little word luo is that maybe the path of resurrection lies in letting go. If death is starting now, maybe resurrection can start now too.

Perhaps it’s only when we let go of who and what our loved one was that we can receive who they are now. Perhaps only when we find ways to enjoy who they are now can we reverse the deficit and the decline, because we stop assuming they’re moving away from something good and start appreciating that they’re moving into something new.

Dementia is not a living death. It’s an invitation to see how we can remain the same person yet take on new and rather different characteristics. In that sense it’s a training in resurrection, in which we shall be changed but still recognizably ourselves. Like resurrection, we can’t experience it unless we find ways to let go, to let loose, to be released and forgiven. God welcomes us into eternal life not by keeping a tight hold on us but by letting us go. The challenge for us in dementia is to find ways that we can do the same.

Comments

Letter from William Griffith

I appreciated this article. Wells’s conclusion of how our culture views de­mentia as “deficit, decline, and death” aptly describes the negativity associated with the disease.

As a retired hospice chaplain, I visited with many dementia patients, and two of them taught me a wonderful positive lesson. One was a woman who could no longer carry on any normal conversation. On one of my visits she looked upset. I asked her if she was worried about something, and I said (knowing she was a woman of faith) that God understood all of her worries. She immediately closed her eyes and began to pray.

She prayed with clarity of thought and expression, naming her husband, children, and grandchildren by name and asking God to care for them. She prayed for her pastor and his family. I was looking forward to her prayer ending in the hope that we might talk together about what she had prayed. But after she said “Amen,” she looked up at me and spoke, and I couldn’t make any sense out of what she was saying.

The other lesson came from my own father. On my last visit with him we sat alone in the dining area of the care facility. A nurse brought him his lunch tray, and he immediately bowed his head and closed his eyes, just as he always had before every meal. When his nurse asked how my visit was, I told her this story and how my father prayed at every meal and got down on his knees and prayed every night by the side of his bed.

“That explains it,” she said. She told me that each evening the nurses would see my father on his knees beside his bed and think he had fallen and was trying to get back in bed, and they would then help him up and tuck him in.

These experiences have provided me with the hope and reassurance that while a person with dementia may not be able to maintain the relationships they have shared with us, they are able to maintain a relationship with God.

William Griffith
Columbus, Ind.

Letter from Crutchfield

I read with interest Samuel Wells’s “Demen­tia and resurrection.” As a clergyperson who works as a chaplain in a United Methodist retirement community with a high incidence of dementia, his theology and insights are welcome and helpful.

However, as someone trying to balance full-time ministry, my own family, and the full-time care of my mother, who has significant dementia, I would challenge Wells to move beyond his somewhat sentimental platitudes about how we can deal with dementia.

I am blessed to have a good deal of emotional and spiritual support, and I long ago “let go of who and what” my mother once was. But the hard cold reality of caring for persons with midstage and advanced dementia who do not have significant financial resources is a far cry from a cheerful “they’re moving into something new.” Managing the anger and anxiety of these persons and meeting their personal needs is an exhausting and never-ending task.

If we in the body of Christ truly care for persons with dementia and the families who care for them, we will move beyond theological and pastoral platitudes and advocate for significant policy changes that will provide practical, tangible, and professional help in meeting the day-to-day needs of these persons.

Karen Crutchfield
Snow Hill, N.C.

Dementia and my Dad

In his later years, my Dad had dementia and while he was in a nursing home, I was his primary caregiver. It was one of the most difficult times of my life. I had always been Daddy's Girl and we had a very special relationship. While watching him slip away I had to give up my role of Daddy's Girl and become Daddy's caregiver. Sometimes he knew who I was and sometimes he didn't. Increasingly he was angry and belligerent and I often took the brunt of that. It was very difficult for me to go through stages of who my Dad was to me and who I was to my Dad. I had a strong support group in my family and my brothers who lived out of state, but came home often to visit and to give me a break. No matter how much we love them, we caregivers need breaks from them because our relationship with them is so intense. One of the most difficult things I had to endure was letting go of who and what my Dad was as the author states and I don't know that I was ever able to receive who he was at the end. The bottom line remains that the person we are caring for is and always will be our loved one as we knew them. My Daddy was my Daddy right up to the end. I have to disagree with the author, dementia is a living death. I know that God was with all of us including my Dad, but watching his decline I was watching him die from the inside out. My Dad was a physically strong man who was a lay minister and a true man of God. That defined my Dad for years and it hurt very much to see that slip away. I thank God every day that Dad was able to keep his amazing sense of humor right up almost to the end of his life. Experiencing a loved one going through dementia is one of the hardest but one of the most rewarding experiences we can have. The last few months of his life I had breakfast with him every morning on my way to work. At different times he was happy, sad, mad and confused but I always had the sense that whatever his mood, he was glad that I was there. He may not have known me as his daughter, but he always knew me as someone important in his life and that is all I could ask for. When Dad died, I was more than willing to let him go. To go to God and to be the most and the best that he could be. To experience the heaven that he had always believed in where one returned to our Heavenly Father.