Living with Grief’s Paradoxes

Photo by Norma Sessions

I’ve known it intellectually, but now I’m living the reality.

Grieving means living with paradoxes, struggling with conflicting emotions and desires! 

I’m less than a month away from Linda’s death. The grief is raw, the sense of loss intense.  Here are some of my lived paradoxes:

  • relief that she’s at peace and regret that she is gone;
  • desire to engage others and preference for being alone;
  • wanting to remember and trying to forget;
  • confidence that I loved her well and guilt that I fell short;
  • quietness as solace and silence as a void;
  • aloneness as solitude and aloneness as loneliness;
  • clinging to God’s presence while feeling God’s absence.

A friend reminded me, “You can’t go around grief. You have to go through it!” I can’t remove the paradoxes. I just have to live them.

God, grant me the patience necessary for living with and through grief’s paradoxes!

 

Walk to End Alzheimer’s

Today I joined approximately two thousand people in Columbia, South Carolina, on the Walk to End Alzheimer’s. I was accompanied by daughters, Sheri and Sandra, and grandchildren, Emily and Michael.

The organizers asked me to speak on behalf of those who have lost a loved one to Alzheimer’s or other forms of dementia.

Our daughter taped the speech which you can access at the end of this post:

Below is what I said:

Ten years ago, my wife and I sat in the doctor’s office at Duke University Medical Center awaiting the results of their evaluation of Linda’s cognitive functioning. Then came the dreaded news: Dementia, Frontotemperal Dementia.

On that cold, rainy November day, we embarked on a treacherous journey. Every aspect of our lives changed as we adapted to the realty of perpetual loss and relentless grieving. I retired from a treasured faculty position. We moved to SC to be near our daughters and their families. Everything changed—finances, relationships, activities, abilities.

But one reality remained constant: LOVE!

Three weeks ago, October 3, Linda’s struggle ended. She died peacefully in our home. Though I am grateful that her long struggle with the terrible disease has ended and she is at peace, I miss her presence terribly. After 58 years of marriage, I am now adjusting to the new reality of her absence. Yet, I will never be without her, since we are never totally separated from those with whom our lives are intertwined in the bond of covenantal love.

Her spirit will be with me every step of this walk!

I am walking today to — 

  • remove the stigma of Alzheimer’s and other forms of dementia
  • assure those with dementia: “You are not forgotten. Though you may forget, we will remember.”
  • affirm that we are more than our brains or capacities: we have inherent worth and dignity
  • declare to caregivers: “You are valued! You are not alone! We are in this together!”
  • advocate for governmental support for research, treatment, and financial support for the healthcare crisis Alzheimer’s represents
  • commit to do all I can to end Alzheimer’s and other forms of dementia so that my daughters and grandchildren will not fear that they will have to endure these dreaded diseases.

So, let us walk together, work together, grieve together, and GIVE TOGETHER so that together we can END ALZHEIMER’S!

 

“Glimpses”

A week has passed since Linda’s death and I have begun the process of adjusting to the new norm without her physical presence. Though the house is vacant and quiet, the reality of the love we shared for sixty years remains.

One of the most comforting and profound experiences of the last week has been a poem written by our daughter, Sheri, which she shared at both of Linda’s memorial services. I learned that she wrote the poem over the ten years of Linda’s disease and that she would write a new stanza every time her mom entered a new phase of dementia.

Each stanza represents a stage in the long journey and chronicles the progression of the losses experienced, including the present reality of her absence and our anticipation of resting in the loving arms of God in whose presence Linda now lives.

I share the poem with Sheri’s permission.

                     Glimpses

Glimpses, mere glimpses I see
Of a future reality that will come to be.
A lost word, a confused look,
An expression I mistook.

Glimpses, mere glimpses I see
Of the mom who still knows and loves me.
Embarrassed by her lapse and my forgotten name,
I brush it aside because I love her all the same.

Glimpses, mere glimpses I see
Of the mom she used to be.
A smile, a giggle, a twinkling of the eye
Remind me of a taken-for-granted time now gone by.

Glimpses, mere glimpses I see
Of my mom slipping away from me.
I try and try to connect once again
To little avail, though; this is how it’s been.

Glimpses, mere glimpses I see
Of where my mom will one day be.
In the arms of the God who loves her so much,
In the arms of the God she did always trust.

Glimpses, mere glimpses I see
Of my mom happy, as she is meant to be
Cradled in love and joy and peace
After all these years, she is finally free.

Glimpses, mere glimpses I see
Of a world without my mom physically
Close in my heart she will always be
Until that very day God cradles me.

(Written by Sheri Carder Hood)

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.
5…

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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!

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.

“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).