Do This, Remembering Me: The Spiritual Care of Those with Alzheimer's and Dementia
128
Do This, Remembering Me: The Spiritual Care of Those with Alzheimer's and Dementia
128eBook
Available on Compatible NOOK devices, the free NOOK App and in My Digital Library.
Related collections and offers
Overview
Memory loss should not be spiritual loss.
“What do I do to help?” Alzheimer’s is the sixth leading cause of death in the United States, almost everyone knows someone with some form of dementia, yet few know how to answer that question, and very little material exists on providing spiritual care to adults with dementia-related diseases. Even seminaries rarely provide training or clinical pastoral education in this field.
This book is an answer. It provides a hands-on manual that will give clergy, spiritual care providers, and family members an understanding of the ongoing spiritual needs of individuals with dementia, as well as practical tools such as how to create a religious service in a memory care unit and how one might plan a nursing home visit. Accessibly written, with real life applications and sample services for a variety of settings. More than just useful, the book inspires with shared stories that are tender, sad, funny—and sometimes all three at once, encouraging readers to develop spiritual care ministries for people with memory loss in congregations, homes, nursing facilities, or other communities—a ministry that will only gain in importance in the coming decade, as Baby Boomers age and the number of people with Alzheimer’s and dementia skyrockets.
Product Details
| ISBN-13: | 9780819232526 |
|---|---|
| Publisher: | Morehouse Publishing |
| Publication date: | 03/01/2016 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 128 |
| File size: | 191 KB |
About the Author
BARBARA CAWTHORNE CRAFTON is a popular preacher, retreat leader, and writer who teaches at Marble Collegiate Church and at the General Theological Seminary in New York City. Her articles have appeared in the New York Times, Reader's Digest, Episcopal Life, and many other publications. She is the author of many books, including Called, The Courage to Grow Old, The Sewing Room, Living Lent, and many others. She lives in Metuchen, New Jersey.
Read an Excerpt
Do This, Remembering Me
The Spiritual Care of Those with Alzheimer's and Dementia
By Colette Bachand-Wood
Church Publishing Incorporated
Copyright © 2016 Colette Bachand-WoodAll rights reserved.
ISBN: 978-0-8192-3252-6
CHAPTER 1
Then Sings My Soul
* * *
Listen to me, O house of Jacob,
all the remnant of the house of Israel,
who have been borne by me from your birth,
carried from the womb;
even to your old age I am he,
even when you turn gray I will carry you.
I have made, and I will bear;
I will carry and will save. (Isaiah 46:3–4)
The first time it happened I cried, then laughed, then asked myself, "What just happened?" The first time a patient with Alzheimer's made a spiritual connection in my presence — moving out of darkness into light, moving out of loneliness into togetherness, moving out of despair into calm — I knew I had witnessed something miraculous, and I was hooked. Thus began a journey to learn how to provide spiritual care to those with Alzheimer's and dementia. God was "still there" for them and I was determined to find ways to help them "remember" the One who calls them beloved. These are some of my first teachers, through whom God spoke. God said, "Pay attention, they have much to teach." And so I listened.
Meet Frank
T'was the week before Christmas and all through the nursing home ... it was very depressing.
I sat with Frank in a small, outdated common room. Another resident slept soundly in a chair across the room by a window. The hallways were lined with wheelchairs, the air was warm and stale, and a TV in the corner was on but the sound mute. Attempts to decorate the room to look festive had been tried, but the plastic poinsettias struck me as tacky. They were old with branches bent out of shape from being stuffed in a box since last year. There was a Christmas tree in a corner whose lights blinked on and off. I pulled up a chair next to Frank. He looked as though someone had stuffed him in the wheelchair. Food stains covered the front of his shirt; his head was wedged between two pillows. He barely responded when I said, "Hi."
Frank had advanced dementia. A year ago when I visited him, he could recite the Lord's Prayer, take Communion, and tell brief stories about his family and his career as a police officer. So much had changed since then. The times of praying "Our Father" had ceased. No longer at home with his wife of some sixty years, Frank was in this facility where he mostly slept, which was what he was doing that day.
As is so common attempting a pastoral visit with someone with dementia, I had a heavy feeling in my stomach of not knowing what to do with Frank. I felt helpless and even questioned my efforts. Maybe some of the nurses here were right; they would always say to me, "He has no idea what is going on." I always felt like they were discouraging my visits, and today I was feeling that maybe I had been too idealistic about this, maybe all really was lost by now for Frank. The nurses, after all, must know so much more than I do. As I thought about leaving, the lights of the Christmas tree were flickering in colorful patterns with a kind of urgency that nudged me to think differently and seemed to be asking me to hang in. I tried the Lord's Prayer, and finished it alone without response. I sat for some time and held his hand. I sat some more. It was three days before Christmas; I wondered what he was missing out on at home. What did the family do for traditions? Is he missing his favorite warm pumpkin bread? What toy trains had he put together as a young father? Did he teach the kids to ride a bike, "Look Dad, no hands!" Did he dance in the kitchen with his wife?
Today he just slept. And I sat. And then the Christmas tree nudged me again with its insistent lights. So I began to sing. (I will only sing with dementia patients, because I sing very badly, but they never tell anyone.) So I began, "Silent Night ... Holy Night ... All is calm" ... and a voice joined me, slow and weak, but precise ... "all is bright, round yon virgin, mother and child." It was Frank and he finished every line of "Silent Night." Though everything else had failed him, his faith remained. "Sleep in heavenly peace ... sleep in heavenly peace," Frank concluded that day.
Frank died just days after Christmas surrounded by his family. While it might have been easy to imagine that everything had been erased from his memory, in the days before his death it appears "Silent Night" had remained loud and clear.
Meet Dotty
Dotty rambled on like no one else I had ever visited: short quick sets of words like "mother came," "garden water," "go, go, get." Her nursing home room was cheerful and sun splashed; her family had taken obvious efforts to make her comfortable. Along with family pictures, her room was decorated with numerous crucifixes, statuary, and rosary beads. Fresh flowers were on the windowsill, and they had placed her chair so that she could look out the window onto the nursing home's beautifully landscaped grounds.
On my visit that day, I took down the rosary beads and, placing them along Dotty's hands, attempted to say the Hail Mary, but it didn't work. Though I am mostly a stranger to her, just the friendly hospice chaplain, she seemed to only want to hold my hand and, well, sometimes hand-holding is enough. So I held her hand, looking at all the old black-and-white photos on her nightstand. After a while though, I began wishing for something to do with her and I remembered that I had my communion kit with me, having just visited another patient who generally takes communion. For lack of anything else to do, I started to unpack the kit.
I used her bedside tray as a "mock altar" and slowly and quietly "set the table" as I would the altar in church. I laid out my beautiful white linen, my battery-operated candle, a small cross, and a miniature silver chalice and paten. I didn't say anything as I set the altar, just moved slowly, deliberately. She watched me through the corner of her eye. Then suddenly, midway through a ramble about her mother, Dotty stopped talking and got quiet. Dotty was never quiet, so I didn't know what was happening, but then she looked at my altar, took the small chalice in both her hands, lifted it to heaven, and said, very clearly, "Remember me."
Remember indeed!
Meet Allie
I visited Allie at the nursing home one afternoon when I was researching how those with memory impairment responded to visual cues of faith. Allie was a cheerful woman in her nineties and couldn't have weighed more than eighty pounds. Her family had said she was a woman of deep faith and would probably enjoy saying some prayers.
To visit with Allie, I had brought colorful pictures of Jesus, several kinds of crosses, candles, even a Russian stacking doll of the Holy Family. I had church hymns playing on a CD player I had brought in ... "Amazing Grace, how sweet the sound...." I showed Allie a child's picture book of Bible stories with bright colors of Noah's Ark, sheep and the Good Shepherd, angels on high. She didn't respond much to the pictures. I tried to begin prayer, making the sign of the cross: "In the name of the Father, and of the Son ...," but Allie didn't follow along and was more interested in the hem of her sweatshirt.
I then took out a beautiful silver cross to show Allie. I didn't say anything; I just let Allie touch it. It was cold from having been out in my car trunk all night. After turning the cross this way and that, Allie paused. A strange look came over her face that turned into a silly, somewhat coy, smile. It seemed to me she was remembering something very pleasant. And suddenly Allie exclaimed excitedly, looking at the cross, "Yes, all that and regular sex too!"
Well, I will never know (and perhaps don't want to know) what Allie remembered that day, but by the look on her face it was a very happy and pleasant memory. When I relayed this story to a colleague, she reminded me that in pious Catholic families of Allie's era, they would have had a crucifix hanging over their bed. They would have knelt by the bedside to say bedtime prayers and probably blessed themselves before getting into bed. Hmmm? God's grace is indeed amazing.
God Does Not Forget
What I learned from Frank, Dotty, Allie, and the numerous other adults with memory loss I've had the privilege to care for, is that for people of faith, Alzheimer's and dementia cannot erase God's imprint. When everything else is crumbling around them, God remains intact and is very present. This makes complete sense because faith has always been something only understood with the heart and not the head. Faith has never made sense on an intellectual level and has never been something to be reasoned or explained with words. Faith is etched in the heart and spirit, so it only stands to reason that dementia cannot rob people of God and their faith. While the disease steals many things, I am convinced that the presence of a loving, healing God is "remembered" and is very real to those with memory loss. After all, one does not need words to know God.
As people of faith, as spiritual caregivers, and as family members who care about our loved ones, providing a space for spirituality and religious practices during the phases of Alzheimer's and dementia is more than just a nice thing to do. As Christians and followers of Jesus, are we not led by his longing to care for "the least of these"? In Jesus's time, the least of these were the poor, the outcasts, and the widows. In our time, those living with memory loss are the new "least of these" that we are called to serve. Throughout the Bible we meet a God who has a special concern for those who were forgotten and suffering. For our generation, in a time, world, and culture that places so much value on youthfulness and productivity, those of older years and limited ability can be easily forgotten. But we must not forget them or we lose the very essence of what it means to be a people of hope and healing.
Teepa Snow is a dementia-care specialist, educator, and occupational therapist who has been working with and studying the field of dementia care for over thirty years. She is founder of Positive Approach and travels nationally and internationally teaching families and nursing home staff how to effectively work with this population in a way that is nurturing. As spiritual caregivers, Teepa says we have an opportunity to help people address their feelings and deal with the challenges of dementia by reconnecting them with their faith. Through worship and prayer, which naturally draws out emotions, she says spiritual care offers them a place to remember who they still are inside.
For years, she says, people, including clergy, have assumed there was nothing they could do to connect with and reach people with dementia, but her research has proven that wrong. There is always what she calls a "spirit part" inside every person: no matter how far the disease has progressed, there lives a flame that if we can touch will bloom. As providers of spiritual care, according to Teepa, we become not care givers but care partners, which can enfold them into a larger sense of community and wholeness. She believes people can be trained to work with dementia patients in a way that is positive, focusing not on their losses but on their abilities. In other words, what can they still do? How can they still be in relationship with people they love? How can their lives be improved through the right kind of care? And so what we have learned is that what they can still do is pray, sing, and worship.
Some research on Alzheimer's suggests that people living with dementia often know what they want to communicate but can't use words, especially in the early stages of the disease. So while their "intake" works, their "output" does not: they cannot find the words to communicate back, so we assume "they are gone." I think of all the times in the early stages of my dad's disease that he would word search for a long time and then finally give up. Sometimes he would laugh at himself and point to his head, indicating something wasn't working; it was kind of cute and funny. But sometimes he would get mad and sad. Realizing that he knew what was happening to him was heartbreaking for us, his family.
When I think about this, I try to imagine what it would be like to be trapped in a body and mind that knows what it needs, wants, and longs for, but can't ask for. And then I imagine the chaplain, my parish priest, my friend, or my spouse coming in, treating me as though I am still there, praying out loud words I ache to speak myself, letting there be a quiet moment where I can ask God for help too, and then singing "Joyful, joyful, we adore thee." What a difference this would make in my life when others are merely rolling me over in bed to change my Depends, forcing me to sit in chairs I don't want to sit in, and talking to me like I am a child. It is amazing care to give. Whether in the form of a prayer, a song, or a shared moment of tears, this ministry validates that those with dementia are still alive inside.
I was once invited to attend an Alzheimer's caregiver support group at the agency where I was working as the hospice chaplain. Some of those gathered were family of patients I'd been visiting. After I demonstrated some of the things that I do with patients, I noticed one of the women at the far end of the table was crying. I stopped and said, "Would it be ok if I asked what has triggered your tears?" She said, "Thank you for doing this, everyone else has given up on them."
When I play the hymn "How Great Thou Art" during my service of "Prayers and Song" in the memory care unit, I notice that people with otherwise few words will suddenly sing very loud and clear the refrain, "Then sings my soul, my savior Lord to thee, how great thou art." The souls of those with Alzheimer's and dementia indeed do still sing. No matter how advanced the disease, faith is not lost and we will do well to "Do This, Remembering Me."
Interlude
My Huckleberry Friend
It might have been his last "professional" appearance.
I had come for a visit to his memory care unit and as I walked down the hall past Dad's room (he was never in his room), I noticed he was sitting next to Mary, and Mary was clearly in the midst of a good cry. As she sobbed, overwhelmed by some sadness she couldn't speak, Mary sniffled loudly and big tears ran down her red face.
Dad had one hand on Mary's arm and in the other he held a clipboard. In language only dementia patients share, it appeared he was giving her some advice, some council. Most likely it was legal advice, which he had spent his lifetime giving people as a lawyer and city councillor. As Dad sat with Mary, he was being intentional with his words and looked very much the part of "attorney extraordinaire" — serious, compassionate, and ready to take notes with his clipboard. He had that "leaning forward, making a point" body language I had seen in his younger years when he tried to explain the legal ramifications of some thing. This is the man who dealt with racial riots and urban growth, defended a family whose daughter had been burned by flammable pajamas, and stood by fishermen trying to make a living in our hometown of New Bedford, Massachusetts, a city known for its once vibrant fishing industry.
That morning in the memory care unit, it was easy, for a moment, to see Dad as he used to be; to imagine him not a patient here, but rather, the facility's legal expert come to help. It was easy, for a moment, to see him as he had once been: well dressed, gentle and gentleman, wise attorney and confidant who could ease whatever your worry.
It would have been easy to imagine all these things ... except ... he was wearing a straw hat decorated with huge colorful silk flowers.
An aide finally came over to assist Mary in her despair, so I tried to distract Dad. "Nice hat," I said, but he didn't connect my words with the cartoon-like thing on his head — the hat in complete opposition to his very serious face.
We were lucky; Dad's dementia never took away his ability to recognize family. Sometimes he confused us, like calling his son his brother's name, but for the most part, he knew who we were and was always happy to see us.
(Continues...)
Excerpted from Do This, Remembering Me by Colette Bachand-Wood. Copyright © 2016 Colette Bachand-Wood. Excerpted by permission of Church Publishing Incorporated.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Acknowledgments,Foreword by Barbara Cawthorn Crafton,
Introduction,
Chapter One: Then Sings My Soul,
Chapter Two: Understanding Alzheimer's and Dementia,
Chapter Three: Spiritus,
Chapter Four: Faith and Families,
Chapter Five: Tools for Ministry,
Chapter Six: Worshipping with the Memory Impaired,
Chapter Seven: From Where Will My Help Come?,
Chapter Eight: A Good Death,
Appendix A: Putting Together a Worship Service,
Appendix B: The Prayers,
Appendix C: Resources,
What People are Saying About This
“Collette Bachand-Wood’s well-presented material offers clear pastoral advice and wisdom combined with the obvious joy she has found in her ministry. This is an essential work for all working with persons with dementia.”
––The Rt. Rev. John L. Rabb, Chair, Board of Episcopal Health Ministries
“Here is valuable insight into a world where spiritual reconnection and overall emotional support play a vital role in facing the challenges of the dreadful disease we call Alzheimer’s.”
––Kristi Lyon, Support and Services at Home Coordinator, Cathedral Square Senior Living, Burlington, VT
“Here you’ll find nourishment to be a companion to people living with dementia. Don’t buy a single copy of this book––buy several and splash them around your church!”
––James Creasey, Founder and CEO of JiminyWicket.org
“This work is a helpful pastoral care ministry tool, reminding us when ministering with older adults with cognitive loss to set aside our agendas and expectations and simply be present.”
––Malinda Collier, Director of Lay Ministry & Formation at St. Mark’s Episcopal Church, Richmond, VA
“This book is a great aid to those who love and minister to these often ‘forgotten’ people.”
––The Rev. Deacon Lois Howard, Lexington, KY
"In his theology of childhood, Jerome Berryman, describes the importance of respecting the experience of God in each person. By watching, listening to, and being with those who may lack the language of faith, he adds, we can learn to know what they already know. Collette Bachand-Wood gently helps her readers apply that theology to those who have dementia. With stories, observations, and practical ministry tools, she eases our fears and gives us courage to find wholeness."
––Dorothy Linthicum, Program Coordinator, Center for the Ministry of Teaching at Virginia Theological Seminary