By Grace Thornton
The Alabama Baptist
Walk into the Encore program at Canterbury United Methodist Church (CUMC) in Birmingham, and you feel like you’ve walked into a party.
The notes of “You Ain’t Nothin But a Hound Dog” are bouncing down the hall as people sing and dance to the piano. Decorations are still everywhere from that day’s theme — on this particular day it’s National Banana Day, and there have been crafts, games and snacks to match.
There’s usually a speaker to talk about anything from the history of radio to Winston Churchill to how peanut butter is made. A lot of days there’s a “drive-in movie,” with popcorn, candy and an episode of Andy Griffith or “I Love Lucy.”
Most days, there’s a game of balloon volleyball played with pool noodles.
Day of activities
The point, says Kristen Snell, is to give Encore participants the best day ever.
“It’s a joy-filled, God-filled space,” said Snell, family and community educator for Encore, a community respite ministry that offers a day of scheduled activities for people with dementia.
More than a day care
The ministry was birthed out of a dementia support group at the church, said Valerie Boyd, director of SAGE (Seasoned Adults Giving and Engaging) ministries at CUMC.
People in that group had been asking about the possibility of a day care, and Boyd said they knew they would like to offer a way for caregivers to have a break. But she said she also knew immediately that they wanted it to be more than just that — they wanted it to be a place where participants loved to be.
So she went to Montgomery and paid a visit to the Respite Ministry at First United Methodist Church. It was a well-run ministry, and participants were engaged and having a great time.
“Right away we knew we wanted to do one of those here,” Boyd said.
And in June 2016, Encore was born. At first it was offered two days a week from 10 a.m. to 2 p.m., but as word spread, they’ve increased it to run Monday through Thursday.
They have enough volunteers to make the ratio nearly one to one with participants, but participants don’t know they’re volunteers. Everyone wears the same nametags. Everyone participates in what is described as a social gathering for retirees.
And volunteers have one task — to make it the participants’ best day ever.
Patti Williams, Encore’s program director, said they get “a day filled with laughter and purpose and meaning.”
“We love our people, and we don’t ever stop thinking about them,” Williams said. “Everything I plan for their day is designed so the participant can succeed and feel valued. Too often they feel like they have nothing to contribute any more, and we help them have purpose and meaning again.”
‘They leave happy’
Boyd agreed. “We don’t talk about dementia or sickness,” she said. “It’s about empowering them and making them feel they still have purpose.”
It’s remarkable therapy, she said. “Even if they don’t remember what they did that day, they remember how they feel. They leave happy.”
It’s not rocket science, Snell said — it’s just letting loose and having fun with them.
Vital ministry
And it’s a vital ministry for the caregivers too.
“Half, if not more, don’t have the means to have a full-time caregiver,” she said.
Often the family member is the only caregiver — and 60 percent of caregivers pass away before the person they are caring for does.
There’s such a big need for ministries like Encore that their program is filled to the brim all four days, even with most participants only coming one day a week. A few other churches have started similar ministries, and others are considering it, including a few Baptist churches in the Birmingham area, Boyd said. (For tips on how to start one at your church, see sidebar story below.)
To minister to families with dementia, you don’t have to start big — do what makes sense for your church, she suggested. Another possible way to help is to provide scholarships to cover the small fee families in your church would pay at a ministry like Encore.
For more information about Encore, visit encorerespite.org.
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Tips for churches considering a dementia ministry
1. Don’t be intimidated by your church’s size or perceived lack of resources.
Do what makes sense for you — that could be two volunteers and one person with dementia, or it could be 30 volunteers and 40 participants. There are ways you can run a vital and impactful ministry regardless of size.
Some things you may find you need as you go are resources like volunteer training. Getting in touch with a ministry like Encore can help make that process easier. You also may require specific needs met for the ministry, like a way to provide lunch. Often volunteers in a church could sign up to cook or provide that. There’s ample room for creativity.
2. Get in touch with a church that’s already doing it.
Reach out to someone at a church with an existing memory care ministry like Encore. Ask to schedule a time to visit and see what they do, then sit down and talk through what you need to get started.
To get in touch with Encore, call 205-874-1525 or email Patti Williams at encorepatti@gmail.com or Kristen Snell at encorekristen@gmail.com.
3. Be the driving force.
To get something like this started, you have to have a passion and be the spark in your church. Promote it. Get people excited about it. Then stick with it.
Source: Encore respite ministry,
Canterbury United Methodist Church
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Husband of dementia patient shares experience, tips
By Alan Johnston
Special to The Alabama Baptist
This is not my story, it is our story. It chronicles the journey of faith, hope and love that (my wife) Judy and I have experienced in the 15 years since that day the doctor said, “Mrs. Johnston, you have Alzheimer’s disease.”
Our prayer has long been that our journey might encourage someone else, or perhaps even provide hope, but above all else do as Paul said in 2 Corinthians 4:7, “to show that the surpassing power belongs to God and not to us.”
Do not be ashamed
I have observed that many people seem almost embarrassed to talk about what is happening. I have had people speak to me in a whisper as they explain their diagnosis. I have met some who will not even speak the name of the disease, as though not calling it what it is will mystically make it something other than what it is — Alzheimer’s.
My experience has been that for a long, long time dementia has been shoved into the corner, both by clinicians and the community, as though it is somehow not only a sad disease, but a shameful disease as well.
Judy and I decided from the beginning we would talk about it, and we did. We told family and our church. We made radio and television appearances, did newspaper interviews and marched in Alzheimer’s walks. We once hired a marching band to march with us to draw attention to this far-too-long-ignored disease.
One day as we were driving across town, Judy heard a song on the radio that contained the lyrics, “I’m not crazy, I’m just a little unwell.” It made her laugh.
We used that as a springboard to become advocates for supporting families struggling to cope with Alzheimer’s, and to create awareness on the lack of funding dedicated to find a means of preventing and curing this horrific disease.
You are not alone
My momma is now in heaven, but for so many years she was there with Judy and me. We could not have made it without her love, acts of mercy and presence. The great burden that comes with caring for someone with Alzheimer’s should not be borne alone. In fact, it should not and cannot be done, at least not for long.
It does take a village to cope and provide the necessary care for a loved one with any form of dementia. The good news is that to some extent that village already exists. Alzheimer’s is a family disease. Beyond the family there can be found a myriad of resources and support.
Some of that support is church-based, some is community-based, while other levels of support are found in the professional world. Support groups sponsored by the Alzheimer’s Association meet regularly. Adult day care for adults with dementia, memory care facilities and respite care programs (see story above) are available, as are numerous support resources. There is no reason to think that one has to do this alone.
Practical planning
For believers there is the great certainty of heaven as our future home. There is the certainty of a life free of pain and heartache. God’s word makes all of that very clear. Yet the here-and-now can be full of surprises, losses, pain and grief.
I believe that we honor God when we plan for the future.
There are care plans to be arranged. There are legal arrangements that must be made in advance while all persons can still think clearly and make sound judgments. One must understand what insurance programs will and will not pay, including Social Security, Medicare and Medicaid.
If sitters are needed, who will pay for them? Are hospice services an option? There are often more questions than answers, but we must do what is within our ability and power to do to prepare for the future.
Lean on God
I have lost count of the number of times family, friends and acquaintances have asked how I’ve managed to care for Judy. It is done out of love and commitment. It is done because of a promise, a vow and a covenant I made with Judy all those years ago.
But beyond that, survival is a matter of faith, and in my personal experience it is faith in God and in His word. He is a promise keeper. Hope has come from praising God, from the promises of God, from prayers (my own and those of others), from answering the Bible’s call for perseverance and from the peace and presence of God.
In 2 Corinthians 4:7–18, Paul said he felt crushed, but wasn’t; perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed.
Some will say it is not possible to react in that manner to some of life’s crushing blows. Humanly they are correct. However, Paul went on to say, “so we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed day by day.”
Judy and I both have survived these many years clinging to the promises of God. Our hope rests in Christ.
EDITOR’S NOTE — This article was adapted from Alan Johnston’s unpublished manuscript titled “Jars of Clay: Surviving Alzheimer’s … A Story of Faith, Hope and Love.”
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Resources for caregivers
The Alabama Cares Program is a statewide initiative that provides help and information to caregivers of individuals with a disability, Alzheimer’s disease or some form of dementia or frailty from aging.
The Alabama Cares Program offers:
• Information on resources and services available within your community through public education, health fairs and newsletters
• Caregiver access assistance to help in obtaining access to the services and resources that are available within your community through outreach and case management
• Caregiver education and counseling to assist in making decisions and solving problems relating to areas such as health, nutrition and finances
• Caregiver respite to provide temporary relief or a brief respite from care giving by providing personal care, homemaker services, adult day care and other services requiring a skilled helper in the home
• Caregivers supplemental services to provide on a limited basis incontinent supplies, minor home modifications, assistive technology, home-delivered meals, emergency response alarms, nutritional supplements and transportation.
Contact your local Area Agency on Aging (AAA) and Aging & Disability Resource Center (ADRC) at 1-800-AGE-LINE (1-800-243-5463).
Book recommendations
• “Grace for the Unexpected Journey: A 60-Day Devotional for Alzheimer’s and Other Dementia Caregivers” by Deborah Barr
• “Experiencing Dementia” by H. Norman Wright
• “Keeping Love Alive as Memories Fade: The 5 Love Languages and the Alzheimer’s Journey” by Gary Chapman, Deborah Barr and Edward Shaw
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