Chris is the pastor of Gwen and Marion’s church, the Monticello First Church of the Nazarene, and we met at Thomson Hood Veterans Center in August. Chris's grandmother, who he affectionately called “Mama,” recently passed away from Alzheimer's Disease, the same insidious disease that is claiming my father, and Gwen's husband, Marion. Dad lived with Marion in the Eisenhower unit, the Thomson Hood Veterans Center locked-down ward for demented U.S. military veterans. (For Gwen's story, see "Monticello Memories," and for Marion's story see "Medical Aide Man," both in Stories by our Users).
Chris is in his mid 30s, married with three children, and a bushy moustache accompanies his brotherly smile. I turn my third new camera, this one of professional quality, on Chris and ask about his experience with dementia.
“Dementia is something I’ve experienced as a pastor when working with people from the church, like Marion,” he says. “I’ve also seen it in my own family.” Chris speaks in a rhythmic, comforting voice, one trained through thousands of sermons.
The easy-going and friendly minister talks about Marion’s condition, and Gwen’s decision to place Marion in the Eisenhower unit.
“Marion was part of that group of men at church who got things done. When the grass needed to be mowed, they were there. When the church was built, he did a lot of the work around here,” he recalled. “Then his physical abilities started to go. We noticed changes in the way he viewed the world—his mind would slip, and his memories would fade back to the past. Marion seemed more comfortable talking about things that happened 30, 40, 60 years ago than about things happening today. He slipped away from us; Marion attended services, but he wasn’t himself.”
Addressing Gwen’s decision to place Marion in a long-term care facility, Chris says, “That was probably as difficult a decision as I’ve been through with Gwen. We don’t want to acknowledge that our loved one is slipping, and for Gwen, I think that was a major issue. She had to come to this place of saying ‘I can no longer do everything I need to do for Marion,’ no matter how much she loved and cared for him.”
Chris discussed how he felt walking through the hospital and the Eisenhower unit when he visited Marion.
“We lived in Wilmore when I went to the Asbury Theological Seminary, and I drove by the veterans’ center many times, but never visited anyone there,” the pastor explains. “Now when I walk in the door of the hospital, I have a sense of anticipation, a sense of awareness that this is a special group of people. They have served our country, given their hearts and lives, and some of them have given much of their physical abilities to defend and protect us.”
Chris says that he may be aware that he is among a group of great men, but that the men’s true greatness is not known to him—or to any of us, for that matter—because we can’t truly understand the extent of what they have done for our country. He says our service to them is motivated by the sacrifices they made for us.
“When I go to visit Marion, I always go with an uncertainty of what to expect. He usually doesn’t recognize me, but all of us who love him keep going back because Marion deserves it. We keep going back because we’re hoping for that moment when we see Marion as he used to be and we can participate in his life for just an instant.”
I ask Chris to pretend he is talking with someone diagnosed with Alzheimer’s disease or with his or her loved one. After laboring to find the proper words he says, “It’s such a heavy disease, and I don’t mean heavy in weight but heavy in reality. There’s not a real upside to it. We tell people with cancer to enjoy the days they have left, but when someone has dementia, the days they have left, by definition, are going to decrease in quality. Each day, another piece of their life will be chiseled away.”
Chris hesitates for a moment then tells me that he thinks dementia is “part of the deception by the enemy.”
“He’s the greatest of liars, and he’s perpetuated the greatest of lies on us with this disease of dementia. Jesus said He came so that we might have life and have it to the full. He also said ‘I came to fill you with the love of the Father.’ That’s the work of God. The enemy comes to kill, steal and destroy and that’s the way this disease works. So, in that way, I feel it is the work of Satan.”
He says he no longer is convinced that every evil can be redeemed.
“I don’t think you can say ‘Well, it’s good what has happened. In some way this is good.’ No, sometimes I think it’s the enemy and he’s having his moment, he’s having his day.”
Pastor Chris continues to explain dementia through a biblical perspective.
“Jesus told us ‘I am not God of the dead, but God of the living.’ Even in the midst of the death, the brokenness, we have to recognize that God is still God of the living, and life is not tied to the here and now. It’s a perspective shift to understand that we live this life for the life to come. When we understand that, we develop spiritual maturity as a believer. We understand that God is able to redeem our suffering because He is able to teach us something from it.”
Chris used the Old Testament description of Israel’s experience in Egypt as a basis for talking about the tragedy of dementia.
“When the children of Israel went down to Egypt, they went not knowing that they were going into captivity—they thought they were going to fields of plenty and places to water their flocks. I think all of us, when we look at our retirement years, believe we are going to be free to travel and do all the things we couldn’t do while we were working. Then suddenly you see it is different, like the children of Israel who went into captivity unknowingly. The years have been snatched away from us.”
Chris says he finds it to be very sad when people who have worked and saved their entire life to enjoy the golden years of retirement together, find that their spouse no longer is able to carry on.
“It is such a punishing disease because, like the children of Israel in captivity for four hundred years, it seems to never, never, never end,” he says. “That’s the paradigm with which I view dementia. How much greater will the resurrection be when we see our loved ones, knowing the pain and suffering of this world? It doesn’t make it good and redeemed and wonderful to go through today, but it gives us a way to look to tomorrow and say ‘it will get better.’”
Without prying directly into how Chris’s grandmother passed away, I ask how Chris feels about the issue of making end of life decisions for family members. I knew a day is approaching when I may have to face a decision regarding my father’s care.
Chris responds, “It’s easy to stand on the outside if you’re a neighbor or a friend and say you should do this or you should do that. But when you’re dealing with someone you have loved for years, and you’re making a decision for him because he's not mentally competent or he's physically unable to speak, it’s such a heart-wrenching thing.
The pastor says that he tries to help people understand the distinction between quantity of life and quality of life.
“That distinction is huge to me. There are things we can do to make life go on—the heart beats and we still breathe, but if the quality of life is not there then we have to consider that. Now, being we can’t say ‘just because my life isn’t wonderful or my life isn’t everything it used to be, I want it to be over.’”
From personal experience with his grandmother, he says it is tough to decide about treatment when the end nears, and it should be covered by prayer and family discussions.
“I defy people who say it’s simply this or that procedure,” he says with conviction. “No, there are no easy answers because they are all bad roads. You’re choosing between two bad options. It’s a terrible time. All we can do is pray and ask the Lord for insight and wisdom, and the Bible clearly says God gives wisdom to those that ask for it.
“Sometimes we have to make the tough decision knowing there is no right answer,” he continues. “We have to think of what’s best for the patient, and I think every person has to be considered individually. I don’t think there are black and white answers, and I don’t think always extending life so that the heart is beating is always the best. I feel every decision has to be made individually based on the person’s prognosis, what his doctor says, what his pastor says, and what the family says. At the end of the day, I believe you have to look deep in your heart and try to do the best thing.”
We shift from the somber topic of dementia to the wooden cross that stands high on the masonry wall behind the platform where we are sitting.
Chris smiles and says, “The cross is a symbol of Marion and a symbol of God. In the cross, you have both Marion’s love and his craftsmanship. In his day, Marion was a top-notch craftsman and he built the cross with the utmost of love and care. I think that’s the image we have of God’s creation of us, and His love for us. God poured Himself into us and He didn’t stop until He did it just right. This cross helps us to appreciate God, and say ‘Look what God did for me. I want to serve Him because of what He did for me.’ Marion’s cross encourages us to love God.”
Chris wants to say more to a person who has recently learned he is facing dementia.
“When you first find out you have something that is affecting your mind, I think it’s as if you ‘white out.’ We can’t conceive of living in the world without our memories—they are who we are, they’re what we are. But more than that, our memory is made up of all the lessons we’ve learned. We learn when you put your finger in hot water you’ll get burned. Knowledge that simple is being taken away.
“When it’s you, and you begin to become forgetful, I don’t think in any way you can process that. I don’t think we have a magic switch we can turn on and say, ‘Oh well, God is going to make a wonderful work out of me through this.’ It’s overwhelming.
“But after you’ve processed it, thought it through, and you’ve had some time for the initial shock to wear off, I think that’s where you are going to see the rubber meets the road as far as God’s relationship with us. The amazing thing about God is this is where He really shows His colors. His love for us is not based on what we’ve done or who we are; He is no respecter of persons. Therefore, God’s love leads us and comforts us. It allows us to say ‘I don’t know what’s waiting for me down the road, but I do know that God will be there, and God will walk with me.’ When you’re going to lose everything you know, it’s important to be sure that somebody will be there—not to hold your hand–but to put His arms around you, to carry you if necessary. That’s the way God is.”
Chris says he doesn’t believe that any of us can fully understand God’s love, as we will when we progress down this last road.
“As time passes, our mind may slip but God draws closer,” he explains. “I think, as you said before, God is in Thomson Hood in a special way. God is there in a special way because there is a special group of people there. They have reached the place where they are not self-sufficient and they are totally God sufficient. We tend to their physical needs, but it’s God with whom they commune. It’s God with whom they talk. And it’s God who understands them. In that sense, I think the hospital is a beautiful place.”
Chris explains why he feels people are uncomfortable visiting the veterans.
“You punch the code in the door lock, and you suddenly meet people who are in a condition that’s frightening. This says something about us more than it says about them. It’s not with the veterans that we’re uncomfortable; it’s with our reaction to the disease and the fear within us that comes from knowing it could happen to us someday.
“I wish I could tell you I’m a pastor and I walk in with the gleeful joy of the Lord and say, ‘Hey guys, everything’s gonna be all right!’ We’re used to problems that are easily solved and this one isn’t. Yet, once again, it shows the love of God. It shows how God sticks closer than a brother does. A brother might come to see us occasionally, but He is with us day in and day out.”
Chris finishes our time together by saying, “I don’t know how people can manage the waters of dementia and Alzheimer’s and Pick’s disease, and a hundred other things that rise up in people’s life and cause similar effects, without knowing God. I would hate to be alone walking that path, because God is my comfort; God is my shield. And if I go that route, I know He will go with me.”
To learn more about the Eisenhower Unit, please read my Blog and “Stories by our Users” entries listed below:
Reveille/August 15-January 1 (Blog)
Bricks of a Different Color-January 4 (Blog)
A Show of Love-January 10 (Blog)
Moving Day-January 13 (Blog)
Introductions-January 18 (Blog)
Sharing Our Grief-January 22 (Blog)
Love Stories-January 25(Blog)
Trashman-January 29 (Blog)
Holiday Gatherings-February 2 (Blog)
A Conversation About Alzheimer's-February 6 (Blog)
Nursing Dementia-February 8 (Blog)
A Dementia Care Philosophy-February 9 (Blog)
Ministering Demented Veterans-February 12 (Blog)
In The Shadow-February 17 (Blog)
A Gallant Vessel-February 17(Stories by our Users)
Memorial Day-February 19 (Stories by our Users)
Medical Aide Man-February 20 (Stories by our Users)
Nephew Eddie-February 23 (Stories by our Users)
Baby Sister Savannah-February 23 (Stories by our Users)
Monticello Memories-February 24 (Stories by our Users)