Lessons from Caregiving, #10: Spirit, Soul, Body

(This post is part of a series. For previous posts in the series please see #1, #2., #3, #4, #5, #6, #7, #8, #9)

My husband comes alive when music is played. 

Even on one of his quieter days (which are more and more frequent), he can surprise me with the joy and fervor with which he sings, dances, or plays air guitar and boogie piano. Lyrics he can't fully comprehend draw out emotions he can't understand. I've even been surprised at how many new songs he's learned - singing all the lyrics along with the artist. He's even learned most of the lyrics to a Swahili song on one of our favorite CD's (he's never studied or even heard Swahili other than this song)!

Our experience is consistent with the research that shows dementia patients retain music memory and the ability to connect through music long after other abilities are lost. Videos abound of non-responsive people moving and humming to music. Our experience lines up with the finding that "reminiscence music", the music popular during a person's teens and twenties, is a strong point of connection. He can give Michael J. Fox a run for his money jamming to "Johnny B. Goode"!

But what really, deeply draws him in most consistently is worship music. He has developed a fondness for Southern Gospel, Crowder, and Newsboys - quiet eclectic! What they all have in common, though, are lyrics that touch the soul. As I've watched this phenomenon, as well as seen his response to loving actions, I've thought more deeply about the concept of human beings as triune - spirit, soul, and body. In a way I've never understood before, I see how these parts of us fit together and reflect the truth that we are created in the image of a triune God. 

Body. The most obvious part of what it means to be human is that we have a physical, visible, tangible body. Like it or hate it, we only get one. As Christians we are biblically charged to care for it as a temple of the Holy Spirit. It is important enough to God that He will resurrect our mortal bodies to live eternally with Him. When God wanted to make sure we knew what He was like, He took on human form and lived on earth just like we do - from conception to death, fully human. He clearly has a high view of the body. And yet our bodies are just tents, "wasting away", as Paul wrote to the Corinthians. As I watch my husband progress through this journey, I increasingly see the obvious toll on the body that disease inflicts. There is only so much any of us can do to protect ourselves; at some point, our earthly bodies will all cease to function and we will meet our Maker. 

Spirit. Humans are also spirit-beings. The spirit is most commonly described as our mind, will, and emotions - our psychological makeup, the part of us that we call "personality." This truth reflects the fact that God is also spirit - personified in the Holy Spirit, who moves without being seen and yet leaves an obvious impact (John 3:8). As believers in Christ, we have the indwelling Holy Spirit who doesn't negate our personality but instead transforms us from the inside out, making our mind, will, emotions - our personality - into what God intended us to be instead of the counterfeits influenced by the Fall. Yet the human spirit, too, can be affected by disease. While some illnesses attack the body and leave the spirit largely intact, dementia is one that seems to lob a frontal assault straight at our loved one's spirits. Massive personality changes can come with this disease.  It's this type of change that often lead people to say things like "he's not in there." However, that simply isn't true - because there is still one more part of who we are. 

Soul. When God created Adam, He breathed into him the "breath of life". A study of this phrase will reveal that this doesn't merely refer to making him a living creature. All the animals were created by God, without having this extra step. Instead, there is something that sets mankind apart - something that makes us different from anything else in creation. That something is a soul. A soul that lives beyond the grave. A soul that was placed within us so that we can connect to our Creator God. It is this part of who a person is that remains untouched by the results of the Fall. That the enemy cannot reach when we belong to Him. The soul not only will live forever - it also can be touched deeply by things that reflect the image of the One that created it. Part of growing in faith is increasingly sensing things at a soul level, not just a physical or psychological one. It's this part of a person with dementia that, I am absolutely convinced, can still be reached even when the ability to respond is lost. 

In Keeping Love Alive: The Five Love Languages and the Alzheimer's Journey, the authors return again and again to the theme of intentionality in showing love to people with dementia. As I have learned more about this disease and the impacts it has on the various parts of who my husband is, I am learning more and more about love. I'm learning what it means to show love without expecting any certain response. 

I'm also learning that it is equally important that I and others facilitate my husband in showing love to people in his own way. Giving love is a soul-need, just like receiving it. Yesterday he was so excited to go to church. He could not wait to get there and make someone smile. He soon had a goal of making everyone in the building smile before he left. We have a small congregation, and so it was easy to help him by saying, "Did you talk to Johnny yet?" We sat at the back and he even went up to latecomers and made sure to talk to them. Guess what? Everyone smiled. This simple example shows the power of love. 

Body. Spirit. Soul. Each a valid part of who we are. I don't want to negate the legitimacy of any of these - and yet through this journey, I am learning increasingly to look for ways to reach down to the soul. To nourish my own soul, and to be aware of how I can touch others at a soul-level.  

Lessons from Caregiving, #9: Perseverance and Faithfulness

(This post is part of a series. For previous posts in the series please see #1, #2., #3, #4, #5, #6, #7, #8)

Perseverance is among the more obvious lessons of caregiving. Caregiving stands out, similar to parenting, in the diligence and patience it requires. From the moment I heard the diagnosis, I knew that I would need to pray for a level of patience I had only previously imagined. I expected that I would need to persevere through bad days, fatigue, confusing communications, and all that goes with a diagnosis of dementia. I was taken aback, though, at the perseverance I needed emotionally and spiritually. 

Perseverance to get out of bed and go through the routine ... again. 

Perseverance to correct a care partner with kindness and understanding rather than irritation. 

Perseverance to care about my own health, continuing to exercise, rest, eat right, and connect with friends. 

Perseverance to keep going in ministry outside of caregiving.

Most of all - perseverance to hope, to just. keep. believing. when depression threatens to engulf me.

I'm not prone to mood swings and never struggled with depression until recently, so I wasn't prepared for this aspect of perseverance. Recently we reached a point where there were more bad days than good, and then suddenly we had a couple of great days. I wanted to be thrilled - to just jump up and down with joy - and yet I found myself waiting for the next shoe to drop.

One morning while walking and talking to a friend on the phone, I commented on the extremely bright, hot sun. We'd had a series of cloudy days, and I'd forgotten the feel of that early morning sun beating down on my head. I mentioned that I preferred some clouds. In that moment I realized the parallel to my own caregiving journey. I was actually struggling, like being in the bright sun, because I'd come to be more comfortable with the clouds. Right there on the phone, I repented and told her that isn't who I want to be. I want to be grateful for the sunlight, fully embracing the good days and moments. To hope. To believe.

In studying Scripture on perseverance, I've come to recognize some counterfeits. It's easy to think merely finishing something is perseverance. It's easy to confuse stubbornness for perseverance. The first definition I ever heard, "Stick-to-it-ive-ness", captures part of the meaning, but is itself a counterfeit. Perseverance isn't just about finishing. It's about finishing a God-given task with your faith fully intact. It's closely connected to the idea of faithfulness and, like that trait, is a fruit of the Spirit's work in our lives.

To truly persevere and be faithful in this caregiving journey requires a deeper dependence on the Holy Spirit's power and presence than I have ever imagined. I have to learn over and over the secret Elisabeth Elliot wrote about: "The secret to enduring is Christ in me, not me in a different set of circumstances." I have to learn what Paul wrote, that the link between hope and suffering runs straight through the painful lessons of perseverance. 

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

Romans 5:3-5 ESV