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Not forgotten

As aging Americans increasingly grapple with dementia, churches have a growing opportunity to minister to exhausted caregivers and to comfort the forgetful

Not forgotten

Kim Mitchell talks with her mother at a memory care facility in Bonita Springs, Fla. (Craig Litten/Genesis)

When Patrick Mead took his father, Bill Mead, to live in a dementia care facility the week after Thanksgiving, he taped a note to his dad’s door. Mead wanted the staff members to know about the new resident in Room 14, even if his father couldn’t tell them himself.

“My name is Bill Mead,” the letter began. “I was born in abject poverty. I became a warrior (U.S. Navy, Korea War era). I then laid aside my weapons and became a minister and missionary. I traveled the world, spreading the gospel of Jesus Christ. …

“I am slowly leaving this earth for my heavenly home. This may take a while. Thank you for remembering who I was and who I am. I am a man, a warrior, a missionary, a father, a friend, and so much more. And I have one more river to cross.”

Less than four months later, Bill Mead died at age 88.

Patrick Mead

Patrick Mead with his father, Bill (Patrick Mead)

The retired pastor had been suffering from dementia for about six years. His wife of 67 years had cared for him in an assisted living facility where they lived together until he needed more advanced help.

The elder Mead grew confused and sometimes agitated. Patrick Mead said his dad began living out dreams. He would wake up distressed and think he was in a wartime battle. Mead says he once calmed his father by giving him orders to rotate out of the battlefield: “He never recognized it was me.”

The week before his father died, Mead could tell his dad’s fragile health was failing. During a conversation, he would say a few sentences, and then be unable to speak. At one point the former sailor looked up at his son and asked: “Are we on a ship?”

Mead says he replied: “No, Dad, but we’re on a journey.” 

Craig Litten/Genesis

Mitchell reads Scripture to her mother. (Craig Litten/Genesis)

DEMENTIA IS A JOURNEY no one wants to take. But more than 5 million Americans live with the condition, typically caused by diseases that progressively erode a patient’s mental and physical abilities, leading to debilitation. Alzheimer’s disease is the most common form of dementia.

Though dementia isn’t new, the growth rate is swelling: As Americans live longer and the population over age 65 explodes, researchers predict the number of patients with dementia will triple by 2050. With no known cure, it’s a daunting prediction for the aging and those who care for them.

It’s also a daunting prospect for the church. Benjamin Mast, a dementia researcher at the University of Louisville, says the reality of dementia will grow common in churches with members who are aging or caring for loved ones.

Mast has spent years interviewing dementia patients and caregivers with religious backgrounds, and he says a theme has emerged: Churches can be prone to forget those no longer in the pews. He says a pastor caring for his ailing father told him, “You know, sometimes I think the church has an Alzheimer’s disease of its own.”

While plenty of churches don’t forget aging members, the call to remember will only grow more acute. And for evangelicals with a robust pro-life ethic, the opportunities to protect and serve those at the end of life—and their loved ones—will only grow more urgent.

Every patient and every family are different, but Mast says the needs are the same: to be remembered by others and to be reminded of God—who remembers even those who fear they won’t remember Him. 

H John Voorhees III/Hearst Connecticut Media via AP

James Gaboardi, who suffers from dementia, sits in his room in a nursing home with his granddaughter Meghan Henriques-Parker, looking at cards sent to him from across the country. Henriques-Parker posted on Facebook, asking friends and family to send a Christmas card to her grandfather. (H John Voorhees III/Hearst Connecticut Media via AP)

KIM MITCHELL’S MOTHER mother wasn’t forgetful right away. Her mom’s decline began more slowly (and in her 60s), but eventually the wife and mother who always kept meticulous records for her husband’s farming business began to slip. An early sign: The books were off.

Other things seemed off too: She didn’t want to go to Bible study anymore. She had trouble cooking familiar meals and started leaving items on the kitchen counter. (Mitchell now knows she was having trouble putting things away.) Her condition grew worse, and she lost her driver’s license after nearly hitting a police officer’s parked car.

Doctors eventually diagnosed her mother with a rare form of dementia that renders her functionally blind. Eventually, she moved into a memory care unit near Mitchell’s home in Fort Myers, Fla. Mitchell began learning about dementia and making every decision related to her mother’s medical care—all while being a wife and a mother to her three small children. Meanwhile, she grieved the gradual loss of the woman she considered a best friend.

She came across Benjamin Mast’s book Second Forgetting and became convinced churches should offer ministry to caregivers in similar situations. “I looked around and thought, ‘Well, who’s going to do something?’” she says. “And then I looked in the mirror.”

The pastors at McGregor Baptist Church saw the need and supported Mitchell’s request to plan an informational seminar on a Saturday morning, with speakers and information about dementia and caregiving. Mitchell thought a handful would attend. 

On the morning of the seminar, 120 people showed up.

It was an aha moment, and Mitchell expanded the effort under her church’s leadership: A 10-week course in the fall offered more information and featured speakers from the church and dementia experts in the community. A monthly support group followed, and it now offers prayer, encouragement, and a Biblical framework for thinking about suffering, human dignity, and end-of-life issues. 

It’s been a relief for members. Mitchell says it can be difficult to talk about dementia or ask for help. “I don’t think dementia always looks like what people think it looks like,” she says. “I know my family was taken off guard when we encountered all that dementia was.”

What does dementia look like? 

Experts say it depends on the specific disease and can look different in every patient. They also emphasize it’s different than other forms of less severe memory loss that are common with aging. (People growing older shouldn’t panic when their memory slips.)

Memory loss or confusion that regularly interferes with daily life is often a sign of something more serious, though other conditions can cause such symptoms as well. Physicians can treat the symptoms associated with dementia-related diseases, but there is no treatment to stop the progression. (The Alzheimer’s Association offers more information about dementia symptoms and care.)

For Mitchell, her mother’s confusion at times turns erratic and out-of-character. (For example, she might insult a caretaker and then say something pleasant the next moment.) She has the same conversations on a loop, and often says things that don’t make sense. 

Greg Carlton, a longtime member of McGregor Baptist Church, attends the monthly support group and had similar experiences with his father, who died last Christmas Day. As his dad declined physically and mentally, Carlton placed him in a residential care facility. For a time, his father grew paranoid and accused Carlton of stealing from him. “When I visited, he’d scream and tell me, ‘I don’t want to see you again—don’t come back.’

“Of course, my response would be: ‘Dad, I love you, and I’ll see you tomorrow.’”

For Carlton, who took over his father’s business affairs, it was a lot to manage: “You had to manage his medical care, you had to manage his business, and you had to manage your personal emotions.” His father’s hostility was deeply painful at times, but Carlton says, “We realized right off the bat, that wasn’t Dad.”

He also had to manage his responses to the people around him: Friends or family who didn’t spend as much time with his father initially questioned whether he needed to be in a facility or whether he was getting the proper care.

Mitchell said she experiences something similar in caring for her mother. “Every question can feel like an indictment,” she says. “But you have to make the best decision you can make when you make it.”

Craig Litten/Genesis

Mitchell and her mother (Craig Litten/Genesis)

CAROL SINOPOLI MAKES PAINFUL DECISIONS every day for her husband of 47 years.

Another member of the McGregor support group, Sinopoli says her husband’s dementia came “like a brick on the head” five years ago. Shortly after her husband retired, she called him from work one day, and he told her the air conditioner repairman would arrive on Saturday. He also told her a strange woman was sleeping in their bed and wearing a lot of makeup. “I said, ‘You see this?’” Sinopoli remembers. “He said, ‘Yeah, I see her.’

“And that was it.”

Her husband was diagnosed with Lewy body dementia, a form of dementia that includes hallucinations and physical decline. At first, he was able to stay at home mostly alone, but eventually Sinopoli took him to an adult day care program while she went to work. (Sinopoli is the assistant director of nurses at a residential facility that includes a memory care unit.)

Eventually, she hired a caregiver during the day. She works four days a week and also cares for her husband at home. His condition has severely deteriorated, and he’s now bedbound and nonverbal. She wakes up to turn him over every few hours during the night. He’s in the end stages of the disease.

But Sinopoli says his eyes still track her across the room, and when she bends down over her husband’s bed: “He’ll still give me a kiss.” As he lost his ability to speak, some of the last words he said to his wife as she cared for him were, “Thank you, thank you.”

The couple met when Sinopoli was 17 years old, and she describes him as “the love of my life.” They moved to Florida 25 years ago when her husband accepted a job teaching math at a local school. They raised five children. “He was an athlete, he was a runner, he was brilliant, he was witty—he was funny, funny, funny,” she says.

The slow loss has been painful. “I just miss him,” she says. “It’s a lonely journey.”

She’s found comfort in her church and the support group Mitchell started. She had once tried a secular support group in a nearby town, but didn’t feel much connection. She appreciates the Christian-based support: “At least in church, we have that commonality, we have the same faith. Something unites us besides the disease that we’re sharing.”

Still, it’s been hard for her to ask for outside help. She’s protective of her husband’s dignity and reluctant to bring in people who didn’t know him before his decline. She did recently speak with an elder at the church about coming to visit, and she’s found someone to stay with her husband while she attends church on Sunday.

When people ask how they can pray for her, she says she needs wisdom: “Because every time you think you’ve got it under control, the ground shifts.” Now she plans less and prays more that she’ll have wisdom for each day and contentment for the moment she’s in: “And that’s a good place to be.”

OFFERING SUPPORT LOOKS DIFFERENT for different families.

For churches with members still able to attend services in earlier stages of dementia, some practical considerations could help: For example, a family restroom can assist a wife who needs to help her husband to the washroom.

Offering teaching on dementia in churches and seminaries can help members learn how to assist and empathize with others. Support groups can encourage caregivers inside and outside the church and help them connect with other local resources as logistical and financial challenges mount. (Charles Moore, pastor of First Baptist Paducah, says his Kentucky church moved its support group to a local hospital to reach more members of the community.)

When caring for a loved one at home, some caregivers need a friend to stay at the house while they run errands or attend church. Others are reluctant to leave their loved ones with people who don’t know them well, but they could use a hot meal. Offering specific forms of assistance can prevent caregivers from becoming overwhelmed with managing both their loved one and those who want to help their family.

Benjamin Mast says that in his research, many families said they needed the presence of other people. Just showing up and offering companionship can do as much as highly organized programs or plans.

And caregivers aren’t the only ones who need company. Dementia patients need visits too. Mast says research into emotional memory suggests even if a dementia patient doesn’t remember your visit later, he can still remember how you made him feel.

“It’s kind of like being in a dry and hot desert, and somebody comes up and offers you a cool cup of water,” Mast says. “When you had that in the moment, you would be incredibly grateful for it.”

He says God gives all Christians simple practices to help them remember Him, and those same means can help dementia patients remember and enjoy God as well: Familiar hymns, Scripture verses, prayer, and even the physical act of taking communion can all be routes into older memories that connect people to their Christian faith. Ministries in nursing homes can foster a vital connection between an aging believer and the Church, and can also extend the gospel to those who need to hear it.

Mast says that perhaps the most comforting message for ailing Christians who fear they will forget God is that God promises He won’t forget them: “Even a progressive neurological condition like Alzheimer’s disease cannot separate us from the love of God that is in Christ Jesus.”

Mitchell says though her mother is in advanced dementia, she can still sing a hymn. She recently read a Bible passage about heaven to her mother, and asked, “Mom, what are those gates made of?”

“They’re pearly,” she replied.

AS THE NUMBER OF DEMENTIA CASES grows, so will the population of patients with fewer options for caregiving.

A 2016 study by the National Academy of Sciences noted the caregiving challenges ahead, as “families have fewer children, older adults are more likely to have never married or be divorced, and adult children often live far away from their parents.”

It’s another opportunity for churches to connect with aging people (with or without dementia) who need advocates, basic forms of help, or simple companionship.

John Dunlop, a geriatrics physician and author of Finding Grace in the Face of Dementia, says it’s also an opportunity for the church to defend the dignity and inherent worth of every person made in the image of God, regardless of physical or mental capabilities. 

Dunlop says that message will be even more critical as debates about assisted suicide continue in several states. (In the Netherlands, where euthanasia has been legal for decades, the number of patients seeking euthanasia because of early-onset dementia has grown.)

Back in Tennessee, Patrick Mead is thankful for how his parents’ local church helped as his father battled dementia. Church leaders lived close by and would show up in the middle of the night if his mother needed help.

Dementia is complicated and difficult, but Mead says in some ways the approach to caregiving is simple. “Just do your job, and create the kind of world you want waiting for you,” he says. “Treat them the way you want to be treated if it’s your turn.”


 

Jenny Rough

Elisa Bosley (Jenny Rough)

Hymns to remember

On a recent Friday afternoon, 30 elderly residents at an assisted living facility in Lafayette, Colo., gathered in a common room for a dementia-friendly worship service. The weekly event at the Peaks at Old Laramie Trail aims to meet the spiritual needs of residents unable to attend church off-site.

Chaplain Elisa Bosley handed out songbooks with 26 popular hymns printed in large, easy-to-read type. The service included Bible readings, prayer, and discussion. But the primary focus was music.

Some participants appeared to be sleeping, and others slumped over. But when the music started, many of the same residents perked up and sang the words to hymns such as “For the Beauty of the Earth,” “Amazing Grace,” and “The Old Rugged Cross.”

Bosley began volunteering at an Alzheimer’s unit after her father-in-law developed the disease, and she saw the need for more spiritual care for residents. She was certified through the International Fellowship of Chaplains and now works as a chaplain at four senior care centers in the Denver and Boulder areas.

The part of the human brain responsible for music retention is often spared in Alzheimer’s patients. (The 2014 documentary Alive Inside demonstrated how music evokes memories in dementia patients.)

For her ministry, Bosley chose her hymns carefully, picking songs that appeared in the hymnals of most denominations and hiring professional musicians to record simple arrangements: low, slow, and short.

A Peaks resident named Larry used to be a deacon at Calvin Community Church in Denver. After a successful career at Dow Chemical, he developed vascular dementia and now is only marginally verbal. His wife, Mary Jo, sat next to him during the service and held his hand. Larry’s head drooped. 

“You like to sing, don’t you?” she asked him. Larry cracked open his eyes. “You like to sing?” she asked again. He grunted a yes.

As Bosley closed the service with the doxology, many of the residents had no trouble expressing exactly what they wanted to say: “Praise God from whom all blessings flow.” —Jenny Rough

This story has been corrected to reflect that Elisa Bosley works as a hired chaplain in the Denver and Boulder areas.

Jamie Dean

Jamie Dean

Jamie is WORLD’s national editor based in Charlotte, N.C. Follow Jamie on Twitter @deanworldmag.

Comments

  •  SBTB's picture
    SBTB
    Posted: Fri, 05/24/2019 07:09 am

    Great article.  Informative and practical.  Thank you.

  • CM
    Posted: Sat, 05/25/2019 06:38 am

    This article on dementia is a good reminder.  When Jesus said, "I was sick and you did not visit Me," He could have been talking about patients with dementia.  It is difficult, and becomes more thankless the longer it goes on, but it is a task the church must undertake.  

  • PG
    Posted: Sun, 05/26/2019 08:20 pm

    Really good article - hopefully it will encouragr us to do more.  I am 77 and noticing that my peers are being to show signs of a'slowing down".  Of course so am I, but hoping God will point out my opportunities to makee a difference in their lives.

  •  phillipW's picture
    phillipW
    Posted: Thu, 05/30/2019 02:00 pm

    I'm living this right now.  Mother in law is 90, and has trouble hearing anything, and can't remember what she did 5 minutes ago.  I'm just waiting for the day when I show up at her house and she asks me who I am.  It's tough to watch someone sleep 16-18 hours a day, and do nothing but watch TV and sleep.  My wife has it much worse, as she reduced her job to part time to spend afternoons and evenings with her Mom every day, and to cook dinner for us every night.

    I've also got parents 8 hours away that are in their 80s now and are slowly deteriorating, with doctors and surgeries the highlights of any phone call.

    This is a great article to read, because a lot of times you feel like you are on an island, dealing with the aging parents who are now not able to take care of themselves, are are getting there for the most part.  It does put a strain on your life, your relationships, and also your schedule and time.  The more you have to take care of your parents, the less time there is for anything else.

    The wife and I keep saying that this to shall pass, but I have to ask the Lord for patience in that regard, because it just seems like we are stuck in neutral while we wait for the inevitable.

  •  jrmbasso's picture
    jrmbasso
    Posted: Fri, 05/31/2019 11:41 am

    Thank you Jamie Dean for this. With the gift of the Holy Spirit at Pentecost, the Father and the Son gave their continual presence through the Holy Spirit indwelling earthly sons and daughters. Dementia does not separate us from the indwelling of the Holy Spirit. We can pray that the Holy Spirit will comfort those who are afflicted.

    Romans 8:26 In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words;

  •  CLT's picture
    CLT
    Posted: Tue, 06/04/2019 10:05 pm

    I wept when I saw this article.  As an adult only child, never married, i cared for both my parents from a dual diagnosis of dementia in 2010 until their deaths in 2012 and 2016.  I never doubted God was with me even when I cried out to Him in pain, uncertainty, and sorrow.

    But in the church world I mostly encountered what I call Christian stoicism to my situation.  There seemed to be no understanding why I wasn’t in church as much and dropped out of Bible studies because I rarely saw the compassion I needed.

    The church I am a member of has made some progress on this issue in the last few years but simple compassion for the patient and caregiver still seems limited.  A monthly 10 minute call to see how I and my parents were doing and offering to pray would have done wonders for me.  But in this world where everyone is “busy” perhaps that is too much to ask.

    i have moved on but the pain of that time is still there.

     

     

     

  • Graced
    Posted: Mon, 06/10/2019 09:08 pm

    Thank you, thank you, thank you, from the bottom of this dementia caregiver's heart. As caregiver for my husband with dementia, as well as both my parents with physical disabilities, I describe any caregiving as a marathon but dementia caregiving as an ultra-marathon! I cannot do it alone, and as much as I need prayers I need more than that! I'm grateful that our church stepped up when we got the diagnosis and many have continued as things have progressively worsened at an alarming pace. The realities of caregiving make it hard to even have time to type this message, but I had to just say thank you. You are right, the church should meet this need, especially as assisted suicide expands at an alarming pace. Caregivers and patients need to know they will not be left alone.