31 Lessons Learned from Persons Living with Dementia and Care Partners

I strong affirmly and testify to the lessons identified by Dr. Daniel Potts. Dr. Potts is a neurologist and a strong advocate on behalf of persons with living with dementia and their care partners. I am honored that he wrote a strong endorsement of Ministry with the Forgotten: Dementia through a Spiritual Lens.

The Wooded Path

The following are lessons that I have learned as a neurologist and care partner, both from my father, and from others who are living with dementia and their care partners. These were first compiled for a webinar for the Dementia Alliance International. I am thankful for opportunities to be in relationships with those who are living with dementia.

1. Care partners are curators of another person’s museum of life.
2. The innate value and dignity of human beings cannot be stolen by any condition or circumstance. To care with compassion, we must first believe that all people retain an incontrovertible identity.
3. The beauty, vitality and relational energies inside the very one living with dementia can provide the inspiration for the care partner’s journey.
4. We should love and honor persons in their current state, rather than holding them accountable to be what our egos need them to be.
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A Surprising Word of Grace

I entered Linda’s room shortly after she had been bathed. She was wide awake! When our eyes met, a faint smile appeared. I leaned over and kissed her on the forehead. I remarked as I combed her hair, “You look pretty in that pink gown!”

Then, I spoke the words I say several times every day: “I love you!” Seldom does she respond, or seem to know what I’m saying, or even who I am. But not this time!

She looked intently into my eyes. A broad smile appeared. Then she clearly spoke these simple, surprising words: “You’re wonderful!”

Such poignant moments of connection are inexplicable and rare for someone in the advanced stage of dementia.

The question often haunts me: Does she know that she is loved, that I  love her? So seldom does my presence make an observable difference.

Feelings of powerlessness in the face of her restlessness and agitation are the norm. Sadness and grief are always lurk in the shadows.

But unexpectedly, inexplicably comes a moment of connection, an assurance that love endures, that persistent expressions of devotion matter.

I don’t know what neuroscientists would call it. I call it GRACE!

Knowing She’s Loved Is More Important Than Her Knowing My Name

Linda awoke from her night’s sleep with me standing over her, gently stroking her hair. She gazed at me with a confused look and asked, “Who are you?”

Being forgotten is a painfully common experience of those whose spouse or parent has dementia.

It hurts to never hear your name called by one with whom your life has been lovingly intertwined for decades.

“I’m Kenneth, your husband,” I responded as I leaned over to kiss Linda on the forehead. “I love you!”

Suddenly, the confused look gave way to a twinkle in the eyes and a gleeful smile. There was a recognition deeper and far more important than my name.  It was the recognition, “I am loved!”

I often hear family members, pastors, and friends say they don’t visit those with dementia because “they don’t know me any longer.” Increased isolation results and persons with dementia get cut off from the very thing they most need–the assurance of love.

Whether Linda knows and speaks my name is far less important to me than she know that she is loved.

In her fleeting smile and momentary sparkle in the eyes, I knew that I, too, am loved. And, we both are enfolded in a Love that transcends words or the sound of our names.Clasping hands 2

 

 

 

 

He Hasn’t Stopped Ministering!

It was one of those times. Linda was experiencing inexplicable distress. I couldn’t reach inside her world and calm her restlessness.

Our neighbors and friends, Dale and Norma Sessions, stopped by as they do almost daily. Dale is in middle stage Alzheimer’s disease.

He has lost most of his once extensive vocabulary. He lives entirely in the present moment and his retention fades almost instantly.

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Suddenly Dale went to Linda’s bedside. He touched her on the shoulder and softly said, “You’re good! Yes, you’re good.”

She clasped his outstretched finger and held on tightly!

Though Linda’s distress continued, Norma and I sensed the preciousness of the moment.

Here a person with significant cognitive degeneration had empathy for another with severe impairment. Dale reached for Linda and spoke a word of affirmation, “You’re good!”

I don’t know what either Dale or Linda were thinking. But in that fleeting moment, there was a tender connection, a simple affirmation, an experience of solidarity, a shared compassion.

Dale’s embedded pastoral sensitivities and practices remain. He greets almost everyone with a smile and “Hey! Hey! Hey!” and “You’re good!”

Yes, people with dementia have gifts! They are more than objects of ministry! They minister!

 

 

 

 

We Are Stewards of One Another’s Memories

The loss of memory is one of the most dreaded symptoms of Alzheimer’s and other forms of dementia. My wife, Linda, has lost the memories of our almost 58 years of marriage. It’s a tragic loss!

Recently, I was privileged to spend time at Jubilation, a gathering of older adults in my home conference, Holston. The theme for the event was “More Than Our Memories,” as we dealt with the challenges and opportunities of dementia.

I was reminded of how much of our identities and memories are held in community. Some people present shared memories of Linda and me that neither she nor I recall.

People lose their memories only if the community no longer remembers! We are stewards of one another’s memories!

As John Swinton reminds us, “The tragedy is not that people with dementia forget; the tragedy is that they are forgotten!”

Book on Its Way!

PrintThis week I sent the final draft of manuscript, Ministry with the Forgotten: Dementia through a Spiritual Lens, to Abingdon for the their review and editing. The book is the outgrowth of the journey Linda and I have been on for more than ten years.

Dementia is seen in our society almost exclusively through a medical lens where the focus is on symptoms, lost capacities, and grief. Such a narrow lens contributes to the current fear, stigmatizing, and marginalizing of people with dementia.

The book seeks to broaden the lens by locating dementia within God’s Story of creation, liberation, restoration, incarnation, and salvation. We are all more than our limitations, capacities, and losses. We are beloved children of God, created in the divine image, redeemed by God’s grace, and incorporated into a new community.

I am honored that the Foreword is written by Warren Kinghorn,  a psychiatrist and theologian, who teaches in both the Medical School and Divinity School at Duke. His short Foreword is worth more than the book itself!

The book should be available by August. The royalties from its sale will go to support ministries with people with Alzheimer’s and other forms of dementia and those who care for them.

I Won’t be Attending General Conference But . . . .

UM-General-Conference1920x485-1024x259I’m going to miss an important event in Methodist history–the called session of the General Conference in St. Louis, February 23-27.

A lot is at stake as delegates wrestle with ways to deal with the important matters of homosexuality and the interpretation of Scripture. The decisions made will chart the denomination’s future for decades.

Missing the conference makes me sad! I feel some guilt for my absence.  Although as a retired bishop I have no official duties,  I do feel responsible to be present in support of colleagues and delegates.

I know from previous General Conferences that significant things happen apart from the formal sessions. Old friendships are renewed and new ones formed. The vast diversity of the denomination is on full display.

Great music! Outstanding preaching! Challenging speeches! Profound worship!

I’ll miss all of that!

I must forego the experience. But, I’ll be pursuing my current primary vocational calling, care-partner for my wife of 57 years.

What I will be doing seems small and insignificant when compared to the history-making decisions. Nothing I will be doing will get publicity or make the history books.

I’ll be doing little things–holding Linda’s hand, combing her hair, feeding her, brushing her teeth, assuring her she isn’t alone, just sitting quietly as she sleeps.

There are important connections between what I’ll be doing and what’s happening in St. Louis.

We both will be doing sacred work!  Both will involve strong emotions, including grief and disappointment. God will be present with us!

Both have to do with what it means to love! Who to love! How to love! What it means to love faithfully, as Christ loves us!

Love isn’t an abstraction for me. She’s lying in the bed nearby, with her hand in mine. Love, in the final analysis, is an embodied practice rather than a pontifical pronouncement.

I hope love isn’t an abstraction in St. Louis. May it be embodied in

  • ears that listen attentively,
  • tongues that speak tenderly and truthfully,
  • hands that clasp and serve joyfully,
  • arms that embrace hospitably,
  • hearts that beat compassionately,
  • minds that exhibit the mind that was in Christ Jesus,
  • actions that manifest the breadth of God’s love and justice.

I won’t be trying to convince Linda that she is wrong, or less than, or inadequate, or sinful, or outside the norm.

Instead, I will be trying to empathetically enter her world, see the world as she is seeing it, assure her that she is valued amid her confusion, and loved unconditionally by God and by me.

I genuinely pray that what happens in St. Louis will be akin to what will be happening in our home, and in the countless homes across our world as people seek to love one another as Christ loves us, regardless of

  • race,
  • ethnicity,
  • political affiliations,
  • theological perspectives,
  • sexual orientation, or
  • physical and intellectual capacities.

I won’t be physically present in St. Louis, but I’ll be watching and praying. . . . and continuing to love!

 

 

 

“What do you fear most about growing old?”

“What do you fear most about growing old?” This was a question for breakout groups after a presentation on “Living with Purpose and Joy at Any Age.”

Among the most frequent answers to such a question are “losing my mind,” “not being able to do for myself,” “being a burden,” “running out of money,” “becoming frail and incompetent,” and “having to go to a nursing home.”

This response especially caught my attention: “I fear being taken care of by people who don’t love me.”

Being one of the elderly myself and having spent a lot of time in recent years among frail, infirm, and dependent people, I have an inkling from whence that fear arises. And, regrettably, the fear has legitimacy.

Care of the elderly has become a major commercial enterprise where efficiency, financial profitability, and getting past the next regulatory inspection are the operational priorities.

Most care facilities in the United States operate on a medical model in which people are treated for their physical and mental frailties. Residents (patients) are categorized by their symptoms and levels of incapacitation.

The frail elderly are treated as dependent recipients of medical care dispensed largely by over-worked, minimally trained, under paid, and seldom affirmed employees.

What if the paradigm for care of the elderly were shifted from dispensing medicine to sharing love and extending hospitality, countering the fear of “being cared for by people don’t love me”?

Such a shift would require honoring the dignity, worth, and uniqueness of each person as a beloved child of God, regardless of his/her capacities.

Being cared for by people who love me means:

  • being present with and attentive to me
  • knowing my likes and dislikes, my longings and regretsClasping hands 2
  • listening to my stories, even if I tell them over and over
  • talking to me tenderly and sensitively
  • treating me as a beloved member of the family
  • letting me share my gifts as well as accept yours
  • being excited to see me when we’ve be apart
  • smiling as though you enjoy who I am
  • advocating for me when I can’t speak for myself
  • being patient with me when I can’t understand clearly or do quickly
  • getting inside and understanding my world
  • remembering that I was once younger like you and you one day will  be old like me
  • knowing that the best medicine you can give me is your love

While being cared for by people who love us may be especially urgent for the frail elderly, everyone of whatever age or station wants such treatment–children in schools, inmates in prisons, patients in hospitals, employees in businesses, students in universities,  members in congregations, families in homes.

I suspect that our fear of growing old and frail would be greatly diminished if we knew that we would be cared for by people who love us. After all, “There is no fear in love for perfect love casts out fear” (1John 4:18).

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Riding Dementia’s Roller Coaster

Anyone who lives with dementia must learn to ride emotional roller coasters. The rises and dips, twists and turns,  happen abruptly and without warning. Behaviors and moods of people with Alzheimer’s disease or other forms of dementia can dramatically change in a split second.

Caregivers know the experience well! A smile instantly turns to a scowl. Cooperation suddenly pivots to conflict. Calm explodes into rage. Affection gives way to rejection. Coherence suddenly gets shattered by confusion.

Sometimes the ride is exhilarating as an unexpected smile or moment of recognition appears. Other times the ride takes a plunge into the abyss of grief or turns sharply toward more confusion. Then, there are periods when the journey plateaus and moves ahead with relative calm and predictability.

But riding roller coasters is exhausting, even dangerous! I’m still learning and sometimes all I can do is hold on for dear life and brace myself for the final plunge downward. Yet, I’ve learned a few lessons.

One, don’t ride the rollercoaster by yourself! I need other people with me. . .to hold onto. . .to scream with me. . .to comfort me! We need others to steady us enduring the ups and downs, the twists and turns. And, it’s comforting to know that others are on the ride with you.

Two, scream when you feel like it! Screams are laments. Laments are not only therapeutic; they are the forerunners of hope. They are the weeping of the night in preparation for the joy that comes in the morning.

Three, relish each moment rather than fear the next twist or turn or dip. Learning to live in the present moment isn’t easy but it’s the only real time for those with dementia. Each moment contains potential life, love, and connection. Grab it before it’s gone!

Four, reach out and touch! A gentle touch or embrace of the one trapped in dementia’s turbulence brings solace to both. Touch communicates when words fail and thoughts flee.

Five, look up! The roller coaster isn’t the total reality. The sun and stars remain in their course. There is a world beyond the tumult of the present.

Six, sing! Music harmonizes, calms, inspires, touches deep places in the heart when the brain falters.

Seven, laugh! As the poet Robert Frost said, “If we couldn’t laugh, we would go insane!”

Eight, trust the permanence of love! “The steadfast love of the Lord never ceases; his mercies never come to an end” (Lamentations 3:22). God’s love never ends. Neither does ours!

Love does more than survive roller coaster rides; love grows stronger through the ups and downs, the twists and turns. So, hold on tight to love!

 

 

 

“Not What Do You Believe, But What Do You DO?”

It was an unlikely place for a theological discussion! I was undergoing a medical test that required a lot of waiting and interaction with a technician.

Noting a book I was reading by Walter Brueggemann and having seen on my chart that I had taught at Duke, he asked, “Are you a liberal or conservative?”

“I don’t  really like labels. I’m liberal on some things and conservative on others,” I responded.

“Well, what do you believe?” he retorted.

“Believe about what?” I asked.

“About God, Jesus,  and the Bible,” he said.

“Wow, that’s a lot to cover. I have lots of beliefs about those topics, but I’m not sure that what I believe about them is the most important thing.”

“Oh? Then, what is most important about being religious?” he inquired with interest.

I replied, “I think a more important question is, What do you do? What do you practice? How do you behave, treat people?”

There followed several minutes of conversation about treating people with respect, dignity, compassion, justice, and hospitality.

“But beliefs are important, aren’t they?” he pushed.

I responded, “Definitely! They should motivate, form, and guide what we do. The validity of our beliefs is what kind of persons they produce. The test is what’s in our hearts more than what’s in our heads.”

Continuing, I added, “You asked me what I believe about God, Jesus, and the Bible. Here it is in a nutshell. I believe God is love and that love became flesh in Jesus who shows us what it means to love and empowers us to love one another as God loves us. The Bible is the story of the unfolding of that love.”

With calmness, he reflected, “So, you’re more concerned about what I do than what I believe? Right?”

I remarked: “I’m interested in both, but our actions reveal our true beliefs. Your kindness, respect, and compassion indicate to me that you know God as love, kindness, and justice. You may not even call that “God” but to practice love, generosity, hospitality, and justice is to “believe” in God as I understand the term.”

As the tests and wait continued, the conversation turned to our shared concern for loved ones living with dementia. He was no longer curious about whether I was “liberal” or “conservative,” and I still don’t know what his religious formulations are.

I do know that in that brief exchange two people treated one another with mutual respect, compassion, and dignity. In so doing, we pointed to what the Lord requires: “to do justice, to love kindness, and to walk humbly with your God” (Micah 6:8 NRSV)