““Where is God in Dementia?”
STHPC, Feb. 11, 2024
Good morning! It’s good to be with you all today. I was the pastor of Evergreen Presbyterian until they closed last spring. I know a few people from there transferred their membership to here. I’ve also preached here at Santa Teresa a few times when Tom Coop was pastor, as well as Pastor Deb. It’s nice to be back.
After my time at Evergreen ended, I found a position as a chaplain with a retirement community in Los Gatos. While my first pastoral position was as a chaplain with the County Jail and I have a few years of experience as a pastor, I am new to the world of senior living communities. I have found that they are unique unto themselves. The communities tend to be an insular and focused on quality-of-life matters, and on top of that, each one has its own personality depending on the people involved.
With that context in mind, I wanted to speak to you from 2 Corinthians 4 this morning. I also have a reflection from the Gospel of John, but let’s start with 2 Corinthians 4:16-18. Here, the Apostle Paul is writing to the church in Corinth.
16 So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. 17 For our slight, momentary affliction is producing for us an eternal weight of glory beyond all measure,18 because we look not at what can be seen but at what cannot be seen, for what can be seen is temporary, but what cannot be seen is eternal.
I don’t know about you, but this passage gives me hope. Just because our bodies are declining with age, that doesn’t mean our souls are also declining. Paul says that there continues to be spiritual development in some way, even as we begin to physically shut down.
There’s a challenge in that for me as a pastor and as a chaplain in a retirement community. Those that I care for in my context are still developing internally. I need to find ways to support that growth.
Part of my learning curve in this new environment has been tailoring spiritual practices for those with dementia in the memory care unit, whether they are in its early stages or they have a more advanced case. There’s a spectrum within the population.
If you’ve had a loved one with dementia, you know that those with advanced cases can’t interact in conversation in typical ways. They can’t answer questions very well. You get a lot of blank stares and unresponsiveness. Trying to direct them can even be problematic. So, for me in my work, how does someone with dementia experience faith, especially when we put so much emphasis on cognitive reasoning?
As Presbyterians, we tend to lean heavily on our intellect relative to our faith. Historically, as a denomination, we’ve focused on the word preached and received over other practices, and we’re known as the frozen chosen in worship. Culturally, we favor the mind.
We also talk about believing in Jesus as our Lord and Savior. Belief in something requires content. Belief without content is simply a sentimental experience at best.
I’ve found that it helps me to think of our faith as an embodied one. We talk about Jesus being incarnate, in the flesh. In some respects, our faith is embodied as well. It doesn’t just reside in our minds; we work out our faith in how we live in the world through our entire physical being.
The book of James expounds on the fact that faith without works is dead. We also worship an incarnate Redeemer who calls us to carry on his mission. Our minds and emotions are perhaps the starting point, but we live out our faith in our interactions with others.
In my context of a retirement community, how does someone struggling with cognitive issues live out their faith? What if you find yourself or a loved one with a dementia diagnosis and the body is still alive, but the mind begins to fail? Or those who have experienced a stroke and aren’t able to regain full control of themselves? What about those with traumatic brain injuries or various disabilities? How does someone without the ability to fully reason for themselves grow in their faith and draw closer to God? What is their contribution to the community?
First of all, one of the biggest needs people with dementia have is to know that they are safe as they experience confusion. Creating a safe and calm space meets a deeply rooted emotional and spiritual need. They experience God and community when they feel secure. But that’s us meeting their need. Is there a way someone with dementia contributes to others?
In his book Finding My Way Home spiritual writer Henri Nouwen talks about a near-death experience he had from a car accident and how it affected his faith. He wonders out loud how many of us consider something he calls “fruitfulness of life after death.” He mentioned that within his circles of acquaintance, he frequently heard people worry about being able to enjoy life if their productivity was waning. Others worried about becoming a burden to those around them. The thought of having to be cared for was almost more than they can bear.
When we talk about end-of-life issues in church, we typically talk about the afterlife. We don’t talk about what there is to look forward to as our bodies slow down with age. Jesus frequently talked about his own coming death, but it wasn’t just a means to get from this world to another. He saw his death as being productive in and of itself. Death was not the end for him, but a means to something bigger. He understood that the outcome of his incarnate ministry would be greater after his passing then during his life on earth.
In the Gospel of John, chapter 14, we find what’s known as Jesus’ “Farewell Discourse.” It’s a conversation with his disciples over a shared meal as Jesus’ ministry comes to a close. These are not the words of a dying man, but rather someone who anticipates a resurrection.
In his absence, Jesus promises them the presence of another, the Holy Spirit, whom he refers to as the Advocate, an intercessor or helper. In John 14: 25-26, Jesus says this as he is talking with his disciples:
25 "I have said these things to you while I am still with you.
26 But the Advocate, the Holy Spirit, whom the Father will send in my name, will teach you everything, and remind you of all that I have said to you.
This Advocate will not replace Jesus, but will serve as a witness and teacher to continue the work of Jesus through his followers. God will be present, but in new ways. There was more to come after Jesus’ death.
Living out one’s faith is possible within health challenges and the effects even continue beyond death, but the focus is outward. As we age and need help and support, we create opportunities for those around us to serve and extend love. Our willingness to put ourselves in a position to be cared for is an act of faith. Accepting help can be one of the most difficult things we do, but it’s needed in the life of a community. Our needs create ministry opportunities for others. There’s dignity in that.
This goes beyond a memory care unit in a retirement community. What about those who wonder if they’re being punished by God for something when their health begins to fail? If they felt they had the support of the community and less alone would they feel differently about God?
Also, think of couples where one person struggles to show vulnerability to the other. Or, those who have difficulty grieving in community, afraid of showing weakness. The list of vulnerabilities we try to hide from each other goes on and on. It is an act of faith to be vulnerable with each other and seek help. That act helps build community. It's an embodied faith. Not simply an intellectualized one.
Nouwen goes on to say that “By not resisting weakness and by gratefully receiving another’s care, we call forth community and provide our caregivers an opportunity to give their own gifts of compassion, care, love, and service.” He also calls death the ultimate moment of weakness, but perhaps the greatest one for fruitfulness. There’s meant to be a legacy of love, an investment in people that lives on after our death.
In terms of my own personal experience, I saw in my two grandmothers two different responses to their declining health. In her last years, my maternal grandmother lived next door to my family in a small apartment. It was easy to run a dinner plate over to her, check on her regularly, and it meant there was an extra bathroom available for our large family. This was something grandma thought was particularly funny.
I was maybe 15 or 16 when she asked for help one day in washing her front window. I went and got the hose and started the process. Afterwards, she tried to give me money for the effort. I turned it down. I wasn’t doing it for payment; I was helping because it was grandma, and grandma was family. When I refused it, she became emotional and started crying. What came out was this embarrassment and frustration that she had to be so dependent on other people in her old age. She wanted to compensate me for the work so she felt less dependent. She missed being self-reliant, and her weakness was shameful to her.
In that moment, I didn’t know how to help her or what to say to make it better. I wish she’d understood how much I valued and loved her. Her presence was irreplaceable. It was both an opportunity to teach me how to be with someone in distress and to wash her window. She also didn’t see her need as an opportunity for me to learn and to serve. She was in pain and her focus was on that pain, but there was more going on in the moment than what she saw.
My paternal grandmother lived a different experience. She was also a fiercely independent woman. I remember a conversation with my cousin at one point, that Grandma was not going to have an easy time transitioning from assisted living to a nursing home. Well, not long afterwards, she fell while rushing for the phone. (Let that be a lesson. Don’t rush for the phone. It’s not worth it.) She broke her arm and her leg in the fall and ended up in rehab, and then ultimately skilled nursing. She stopped the physical therapy because of the pain and never walked again or returned to her original apartment. Rather than fighting it, her response was “Well, it’s time for me to be taken care of.” And that statement was the extent of her transition process. She lived for several more years in the nursing home.
One grandmother was unable to come to terms with her decline. If I had been more mature, I would’ve been able to put some listening skills to work and empathized with her in a way that maybe would’ve helped her feel better. That was the opportunity she created for me, that and washing the window. The other grandmother integrated change from her declining health to the best of her ability. She readily accepted help from family and the staff at the nursing home. I have learned from both examples. Their lives have been fruitful beyond their passing. They both invested in me and loved me.
As we conclude this morning, there are a few points I want to make sure we take home. First, our faith doesn’t just reside just in the mind or the emotions. Faith is embodied through our physical bodies as a whole. Second, for those with cognitive limitations, it is an act of faith to place ourselves in someone else’s care. As difficult as that vulnerability is, you create opportunities for others to care for and serve you in way that helps them grow in their faith. Finally, the love we give people influences them after we’re gone. Death doesn’t undue the ripple effect of our love.
So, as you go about your week, be looking for ways to be vulnerable with and ways to serve those around you. Faith involves an outward-facing experience too, not just an inward belief.
Amen