The physician’s assistant (PA) was sharing the results of an evaluation of Linda. We were seated at a table, with Linda beside me and the PA across the table.
Looking at me, the PA said coldly, “Mr. Carder, your wife is no longer the person she used to be.”
She went on to describe the symptoms of Linda’s dementia—lost memory, disorientation, confusion, agitation, inability to focus and solve problems, loss of language skills, etc. All the while, her eyes were on me, as though Linda didn’t exist.
I noticed Linda’s growing agitation and restlessness–the glare in her eyes, the rigidity of her body, the scowl on her face. I knew that look. The PA was about to learn something she missed in medical training.
Linda straightened in her chair, looked squarely at the PA. Slowly, firmly and deliberately, she said, “Talk– to– ME!”
Taking Linda by the hand and smiling proudly, I said to the stunned expert, “You just met Linda.”
I added, “She isn’t a disease or cluster of symptoms. She’s a person you don’t know. You only see her symptoms. I know her story.”
Regrettably, the PA reflects a prevalent lens through which people with dementia are viewed. They are seen as a medical diagnosis, a disease that robs them of identity. They’ve “lost their mind!” They aren’t fully human. They have impaired memories, so they have no identity. They can’t produce, so they have no value. They can’t reason and relate, so they don’t belong.
Here’s the point: We are stories, not symptoms or categories or labels! People never fit neatly into the margins of any lens or label or category. Stories are always complex, multilayered, intertwined, and unfinished. And, we don’t really know another until we know his/her story.
We try to force others within our narrow margins of perception, especially those not like us. Those outside the margins of our theology, politics, class, race, ethnicity, culture, or sexual orientation are treated as objects of our margin-justification efforts. We speak past them, about them, against them, around them, and down to them. We seldom speak to them and almost never listen to them, learn their stories.
I’m learning anew that every behavior has a story behind it. When Linda was first admitted to Bethany, she was awakened every night by another resident who kept coming into her room, turning on the light, adjusting her pillow, and speaking garbled words to her. It was frightening to Linda and disruptive to staff. The intruder’s behavior didn’t make sense. Or did it?
Mary (not her name) was a retired nurse! Her behavior now made perfectly good sense; she was working the night shift and Linda was one of her patients.
Shortly after Linda entered the memory care facility, I wrote a letter to the staff. In that letter, I shared some of her story and why she is important to me. I wanted them to see her as a person with a story worth knowing. Treatment of her changed. They came to see her as more than a category called “dementia.” They see beyond the symptoms; they see her as a person.
Here is the larger point: We don’t know another until we see him/her as part of God’s Story. God’s Story simply will not fit neatly into any of our categories-medical, religious, doctrinal, cultural, political, or otherwise!
Until we see others as part of God’s Story of Creation and Redemption, they will be but identified symptoms and labeled categories. As symptoms and categories, they can be pushed aside, devalued, scorned, defeated, and feared.
But they/we are participants in God’s unfolding Story of creation, liberation, reconciliation, restoration, and transformation. That’s our identity, our worth, our dignity, and our destiny.
God loves you both, and thankfully all the rest of us, no matter our state or station in life! Thank you for sharing, Ken.
I am in awe of your loving heart and your sweet wisdom, to see a “patient” with a disease as a real person. You see the touch of God’s hand and that is peace that passes all understanding. Thank you for those beautiful insights. Woody and I send love to you both !
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Thank you, Lucy!
Thank you, Ken! This is Cynthia Wooten from Church Street. I went back to school in ’97, got my LPN, then my RN in 2004. Been doing hospice for the last 4 years!
My biggest pet peeve has been when the staff refers to pts as their room number or their disease/procedure (new shoulder)!! Our pts, just like Linda have NAMES & should be addressed by their name! I’m so sorry to hear abt Linda’s diagnosis!
I’m sure w/you as her advocate, not just her loving husband, she will get the BEST care possible!!
I look forward to seeing/hearing you in September!
God bless you, Linda, & your family!!!
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Thank you, Cynthia! I remember our time together at Church Street with fondness and gratitude!
How very wise you are. My mom, her sister & their mother all had Alzheimer but they all had stories as well. The stories are what we remember, not the disease. In the early 90’s I volunteered with an AIDS ministry & provided spiritual & psychological support through death. I helped them reflect on their life & write their stories. I often say “when you know someone’s story, it is really hard to dislike them.” It was some of the most meaningful work I did at that point in my life.
I think of you often as you travel this journey with Linda & others at Bethany. What a gift you are to each other & to us.
This is a wonderful article. Thank you do much. As a semi-retired UMC pastor, I plan to this with many who have loved-,ones dealing with dementia. And with those who care for them.
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I DON’T KNOW YOUR LINDA, BUT YES EVERY LIFE IS A STORY. MY MELINDA PASSED AWAY AT THE TENDER AGE OF 26, BUT SHE WAS ALSO A STORY WORTH TELLING. I HAVE A PICTURE OF YOU DOWN LOADED AND WILL SAY A PRAYER EVERY
TIME I THAT I LOOK AT IT.
Thank you, Jeanette!
We cannot connect with others at any meaningful level until we have shared our God-Stories with each other, regardless of our mental abilities.
Two people certainly cannot connect with if one party is unwilling or unable to see the other person as God’s special creation, containing a virtual kaleidoscope of life stories.
It is in the sharing and receiving of our stories that we enter into communion and deeper relationship with each other and with God.
Thank you for this great story about your precious Linda and the important message.within it for each of us to remember.
Blessings to both of you.
David R. Reed
Thank you, David, for your kind words and insights.
Your words ring so true for me! I am aware that I often look at the things that are visible and fail to see what is really in a person’s heart. Thank you for sharing this insight!
Bishop Carder, I’d like your permission to republish this post on United Methodist Insight (http://um-insight.net. I think this is vital message for us all today, not just for those like our family who have lost a loved one to dementia, Alzheimer’s or other debilitating disease. Please reply to firstname.lastname@example.org. Thank you.
Thank you, Bishop Carder. I have discovered the truth of your remarks a couple of times, in different settings. I was discussing with another UM pastor one time our new district superintendent. He didn’t think much of his organizational or supervisory abilities. I allowed that that might be true, but that I related to him differently because he had once been my pastor, before I entered ministry. I shared some things that his family and mine had suffered through together to explain why I cared for him. Weeks later, the other pastor saw me again and thanked me for helping him see the person, not the office. I hadn’t really been defending the DS, or apologizing for him. I had just told part of his story. You are correct. When we know each other’s stories, we become humans to one another, not simply objects, labels, or place-holders. Good to read your words. I enjoyed your leadership in the TN Conference. Sorry to hear your dear wife’s diagnosis, but glad her person still speaks out. God bless.
Thank you, Tom!
Yes this is so true. They are still human, still a person, still your mom, dad or spouse.
This is a poem I used in my Thesis about the losses of the Elderly:
Do not ask me to remember, don’t try to make me understand, Let me rest and know that your with me, kiss my check and hold my hand.
I’m confused beyond your concept, I am sad and sick and lost. All I know is that I need you to be with me at all cost.
Do not lose your patience with me do not scold or curse or cry. I can’t help the way I’m acting can’t be different though I try.
Just remember that I need you that the best of me is gone. Please don’t fail to stand beside me, love me till my life is done. – Owen Darnell-
Thank you for this insightful poem!
Ken, I really appreciate your sharing about Linda. It reminds me of my mother who also had Alzhemizer’s dementia at the end of her life. It was a difficult time, but during that time my mother was always my mother. Early on, even her obsessions often ended up being about difficult things in her family that I was able to ask her still living sister about. Because my aunt could fill me in on the details of my mother’s worries. I learned many good things about my grandfather and greatgrandfather’s standing up in their community for what was right.
Thank you, Jaydee! Although dementia diseases are ugly and treacherous for everyone affected, there are times a great joy, profound insight, and deep connection. Linda and those who live and work in the memory care facility are teaching me. Hope you are well!
Thank you for continuing to write such thought provoking posts.
While Lyla was in memory care I shared her autubiogaph with the caregivers and they all read it. I am convinced it made a difference in her care. She was a story and not a number.
Thank you, Jim, for confirming the point I am making!
Thank you Ken for that wonderful article. Your insight, care and love are so important right now to Linda and your girls.
I often found myself in your position when Robert and I are out with friends. You may or may not know that,Robert has Parkinson’s. The disease is taking it’s toll on our wonderful man. His responses are much slower in everything he does, walking, speaking, thinking, etc. Speech is especially hard. Often when someone speaks with him, although he understands what they are saying, his response time is very delayed. This makes a friend think maybe he didn’t understand.
Thank you for providing this needed voice to patients.
Thank you, Delores, for sharing this about Robert! I recall wonderful experiences with you and Robert. I always loved his humor and our friendly bantering. Sandra had shared about the Parkinson’s. These diseases are relentless in striping us of qualities we love in our spouses. Yet, they remain the persons we have known and loved and with whom our lives are so intimately intertwined. Though many see Linda now in very limited ways, I still see her in terms of our more than 55 years of marriage. I am reminded daily that our identity and worth do not lie in our capacities but in simply being a child of God. Blessings to you and Robert!
God bless you.
Bishop, I am a chaplain at Newbury Court in Concord, Ma. I also work with residents with Memory Loss problems and also with their caregivers. I thoroughly loved your story. I would like to use excerpts of it in my Spiritual Life Newsletter for the campus. We have been studying to find new ways to help people see that each person has their own gifts from God even when they are confronted with adversities. Lilian Warner
Thank you! You certainly may use as you deem appropriate. Thank you for your ministry!
Thank you Ken for these wonderful thoughts. I am afraid we all slip into this not seeing people but there illness or whatever. I am sorry that while you were my Bishop I didn’t get to know your story I only saw you as a Bishop. I now can say I see what a story you have. God Bless you both
Thank you, Tom!
My former mother-in-law developed Alzheimer. In the beginning my father-in-law took loving care of her at home. They were both in their 80’s when the journey started.Every day she would be dressed, hair perfect and a beautiful face. Friends would visit daily and my father-in-law would tell stories of their wonderful marriage (60+ years), stories about their work, children and travels. When I would visit in the early days she would recognize me, wave her hand and welcome me to the living room. We would talk about the grandchildren, hobbies and so much more. Occasionally she would slip away and then return.
Eventually it was necessary to place her in a nursing home, just around from their home. Her husband would visit her every day arriving at 6:00 am and leaving when she went to bed. He insisted that she was dressed properly every day. He would take her to the dining room and help feed her while talking to others at the table. I remember once I walked into the dining room, she smiled that wonderful smile, waved her hand to welcome me and then drifted off.
Thanks to my father-in-law’s devotion and tender lover everyone knew who she was and knew her wonderful story. I will never forget the tender love he gave her every day to the very end.
After when I helped him pack up his apartment he would tell me stories about his wife and all they had done together. I would go home in the evening and record these stories for the grandchildren who still remember her kind love.
Thank you for sharing this beautiful story of love and devotion! You remind us that we are stewards of the memories of those we love.
After careing for my husband, George, at home for several years he moved to a (fortunately) fine nursing home following a fall. It’s now been nearly three years that we’ve lived apart like this. Though he has dementia along with several other major diagnoses he is still able to speak and tell the few stories he remembers. He has forgotten most of the stories of our married life and loves it when I tell him some of those stories.
The first few months of him being in the home took their toll on me. I found it especially hard to see the condition of the other residents. Then one day it dawned on me that I was mainly looking at their physical/mental condition and overlooking that they are people with stories. As my thinking shifted I learned that although Bill couldn’t speak much he loves baseball and never misses a game on TV. Hazel, who often sings out her desires in a nonsensical way, was her church’s well loved organist for many years. Gary was once a postman who delivered mail to many of the other residents. Beatrice had two small dogs she loved and had to give up and so always enjoys visit with my little dog when I bring him. (All names have been changed.)
Thank you for the reminder that each person is so much more than their illness or condition. We begin to know each other when we know our stories. Blessings on you and your wife.
Thank you very much for sharing your experience with your husband and with the other residents in the nursing home. I am deeply moved by your compassion, sensitivity, and respect for the uniqueness of each person. Perhaps the greatest gift we can give others is to honor their stories!