The Importance of a Caring Community
June 6, 2016 at 2:46 p.m.
Updated June 6, 2016 at 2:46 p.m.
Byron and I had the opportunity to share our faith journey through Alzheimer’s in church last Sunday. The pastor invited us to talk in conjunction with his sermon topic on isolation and suffering, which often happens when dealing with Alzheimer’s disease as well as many other things. His desire was to encourage everyone to share their stories – “to invite each other in,” and through the power of the Gospel become willing to share their suffering instead of being isolated, and also become willing to share in another’s suffering as we all seek ways to walk along beside one another.
Byron stood beside me as I told the congregation about some of the hard times we had been through as well as the blessed times. I also shared about the time I had sensed God saying as I sat in church one Sunday, “See these people? They are the Body of Christ to you and Byron; they will not let you fall. They are how you are going to make it. As you walk through the fire of Alzheimer’s, they will help you continue seeing glimpses of my grace. They will remind you that I am always with you, because they will be my hands and feet.” They are God’s hosts of angels – our prayer warriors – his people.
Next the pastor asked Byron to briefly share what living with Alzheimer’s has been like for him. Byron was able to convey to the congregation, though the words came to him with difficulty, his gratitude for their love and care, his peace with the disease and his faith and trust in God’s sovereignty. For the first time as one Body, our congregation was able to enter Byron’s world and hear him, and understand. They didn’t hear about him – they heard him. They listened to his heart, and responded with unconditional love and acceptance. It was a powerful, Spirit-infused few minutes.
Byron radiated peace the rest of the day. I reiterated to him several times how blessed he was to have so many people in the congregation who love him and want to support him. He agreed, and added, “They know I would do it for them, too.” That made me tear up, because he was so earnest. Ever since he was diagnosed, it has been very important for Byron to feel like he is still able to contribute, to “give back” through his music, or helping someone, and mostly by being a faithful witness for God. He doesn’t want to be viewed as a burden, or worthless. He knows how much other people help him, and he wants to “go and do likewise.”
One of my dearest friends, Mary LeTourneau, is one of our angels who has walked closely beside us through the disease in many ways. Our pastor had asked her if she would share some of her observations with the congregation.
One of the stories she told was about waiting in the pickup line with Byron at Whataburger’s. She said she decided not to just make “small talk” but instead, try to go deeper. Mary asked him if he ever felt depressed about having Alzheimer’s.
“Byron’s immediate response was ‘No. It is what God allowed in my life. I am not the only one who has it and there are other people who suffer more than me with Alzheimer’s or other diseases. I do not dwell on it. I trust God.’ It was not just the words he spoke clearly but the peaceful surrender that overwhelmed me and blessed me.
I asked if it was hard for him to be in public. He again said, ‘No. Although I do not remember every face, name or conversation, I like people and the way I feel around people. Especially people from church.’ Wow. I learned the power of the fellowship of the church. A fellowship that protects us.”
Author Daniel Kuhn (“Alzheimer’s Early Stages“) wrote, “People with Alzheimer’s need reassurance that they are accepted for who they are and not what they can do. Belonging to a caring community means that someone with Alzheimer’s is accepted without the usual conditions being met. Their limitations are downplayed while their remaining strengths are celebrated. The personal worth of someone with Alzheimer’s can be sustained if others share this vision of a caring and inclusive community.”
Unfortunately, many times individuals and families dealing with Alzheimer’s lack a caring community. I recently came across a very informative article, “Alzheimer’s Caring: How Faith Communities Can Serve People with Dementia and Their Families” by the Rev. Dr. Jade Angelica (http://www.huffingtonpost.com/jade-c-angelica/alzheimers-caring-how-fai_b_8790336.html). Pastors and members of every church would benefit from reading this – I will even go further – EVERYONE NEEDS TO READ THIS! The suggestions offered would change the lives of individuals diagnosed with Alzheimer’s, their caregivers and their families for the better.
The premise is that basically, many churches have failed their people, “specifically in the area of support for persons with Alzheimer’s and their caregivers.” At dementia care conferences and workshops, faith communities are largely unrepresented, the article states. The reason? Because people are afraid of Alzheimer’s. Also, they don’t know what to do or say in the presence of someone without memories or words.
Dr. Angelica states, “To directly address this resistance, and to be involved in the care of suffering families, education programs for pastors, care teams, and congregations become a moral imperative. Additionally, by bringing awareness of the diseases of dementia in ways that emphasize the inherent worth and dignity of every person, faith communities can emphasize and strengthen their religious missions – to reach out to those in need with a hand that heals.” She then goes on to make many suggestions on how to accomplish this.
Dr. Angelica said, “By seeing with the compassionate eyes of God, we can recognize and acknowledge that all is not lost through the decline of cognitive abilities. For persons with dementia, even in the later stages of these diseases, their personal essence remains, including their emotions, their desire to remain useful, and their ability to give and receive love.”
[NOTE: An Alzheimer’s educational program, MindShare, is being brought to Longview next week by the Greater Dallas Alzheimer’s Association. This will be a perfect opportunity for faith communities as well as everyone else to learn, among other things, how to reach out more to individuals and their caregivers dealing with Alzheimer’s disease. See details and sign up info at the bottom of this post.]
Byron is extremely fortunate and blessed to be part of a caring community which not only includes our church, family and friends, but also his Unforgettable Tuesday’s Day Club (for individuals with dementia). For five years it has been his favorite part of the week. The volunteers there are very special, and like family to us. More recently, Buckner Westminster Place, where he goes for respite care several times a week, has become one of his caring communities. He is treated like family by all of the staff, and with the utmost dignity and respect. I think the common denominator of all caring communities must be that they feel like family.
Yes, Byron is blessed with much affirmation and support. He has been able to sense God’s presence and experience his provision through so many caring people throughout the journey. When he prays, he thanks God daily for all those who support and care for him, as well as his many blessings. It never ceases to amaze me, but it shouldn’t, because that is the way he has always been. His heart and soul are unchanged.
Our daughter, Karly, wrote me recently, “I remember when Dad called and told me about his diagnosis. He assured me that he was going to do his best not to let it change things, and that he didn't want us to treat him any differently. He wanted to use his diagnosis as a way to help other people. So I always thought since he was still so positive about the situation that I needed to be too. I've really admired Dad's faith and how he just exudes happiness still. He is a joyful person to be around and I know that's because he's always had a strong trust in God and that he knows everything has a purpose.”
“Rejoice always, pray continually, and give thanks in all circumstances;
for this is God’s will for you in Christ Jesus.”
1 Thessalonians 5:16-18 (NIV)
1 Thessalonians 5:16-18 (NIV)
“Love people where they are for all they have to share with no measure,
– Wesley Wells, Executive Director,
Buckner Westminster Place in Longview, TX
Sunday morning talk link:
Sneaking in a little Elvis at Buckner Westminster Place - Mother's Day luncheon