Lessons from Caregiving #13: Living Hope

(This post is part of a series. For previous posts in the series please see #1, #2., #3, #4, #5, #6, #7, #8, #9,#10, #11, #12)

I saw them at the end of a blustery, cold, mid-November walk, with rain spitting into my face and the wind pushing me from behind. The evergreens just down the road, God's reminder even in the bleak mid-winter that life is just under the surface of all the gray and brown. It's easy to see why Christians embraced the Germanic tradition of decorating fir trees with lights, redeeming the meaning for the Christmas celebration. Evergreens are reminders of Hope.

In this caregiving season, I'm learning a lot about hope - what it is and what it isn't. Biblical hope isn't wishful thinking. It's not anticipating a specific outcome. Frankly, if that were the extent of it, I would have lost hope a long time ago. While I know and believe God can heal my husband at any moment, the progression of his disease despite our believing prayers leads me to conclude God has a different plan. My hope isn't tied to the reversal of dementia. Instead, Biblical hope is tied to a person - Jesus - and grounded in a historical fact - the Resurrection.

Biblical hope says that because He created the world perfect, all the results of the fall, including dementia, grieve Him like they grieve us. Biblical hope says that because He became human, He knows what it is like to grieve in these bodies that are limited by space and time. His grieving over Lazarus tells me that what we feel matters to Him, deeply. He doesn't minimize it, and neither should we. When people reach out to me in love and concern and practical help, I feel the hope that comes with the incarnation - a God who doesn't let me go through the valley alone.

Biblical hope also says that when He died and rose again, He proclaimed a profound truth: What we experience here is not all there is. After the tears, there was "Lazarus, come forth." And after the cross, there was an empty tomb. Jesus became Hope personified. He is my Living Hope.

I won't pretend that this is getting easier. It's not. In many ways it's getting ever so much harder. And yet, as I continue to learn about Hope, I learn that it is always living, or it doesn't exist.... that every day I am living hope out, living out the truth of the resurrection - even through my tears.

Living Hope by Phil WIckham 

How great the chasm that lay between us
How high the mountain I could not climb
In desperation, I turned to heaven
And spoke Your name into the night
Then through the darkness, Your loving-kindness
Tore through the shadows of my soul
The work is finished, the end is written
Jesus Christ, my living hope

Who could imagine so great a mercy?
What heart could fathom such boundless grace?
The God of ages stepped down from glory
To wear my sin and bear my shame
The cross has spoken, I am forgiven
The King of kings calls me His own
Beautiful Savior, I'm Yours forever
Jesus Christ, my living hope

Hallelujah, praise the One who set me free
Hallelujah, death has lost its grip on me
You have broken every chain
There's salvation in Your name
Jesus Christ, my living hope

Hallelujah, praise the One who set me free
Hallelujah, death has lost its grip on me
You have broken every chain
There's salvation in Your name
Jesus Christ, my living hope

Then came the morning that sealed the promise
Your buried body began to breathe
Out of the silence, the Roaring Lion
Declared the grave has no claim on me
Then came the morning that sealed the promise
Your buried body began to breathe
Out of the silence, the Roaring Lion
Declared the grave has no claim on me
Jesus, Yours is the victory, whoa!

Hallelujah, praise the One who set me free
Hallelujah, death has lost its grip on me
You have broken every chain
There's salvation in Your name
Jesus Christ, my living hope

Hallelujah, praise the One who set me free
Hallelujah, death has lost its grip on me
You have broken every chain
There's salvation in Your name
Jesus Christ, my living hope

Jesus Christ, my living hope
Oh God, You are my living hope

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, #5: It's OK to not "just accept it"

"Evil is negation; love and beauty are the realities." - Augustine

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

We are wise to never forget this fundamental truth: God created a perfect world. We live in a fallen world.

Some of the things we encounter on a daily basis, that feel like ultimate reality, just "the way things are", are reflections of God's design. The beautiful scenery on my walk yesterday. A husband and wife holding their first baby. Justice prevailing. Life.

Other encounters may seem equally real, equally part of the fabric of nature, but are instead a negation. The weeds that choke the life out of the garden. A stillborn child. Justice delayed. Death.

Among the negations is the damage to biology that causes diseases like dementia. The gut-punch that we feel when we get bad news reflects a soul-level knowledge that we don't always take time to verbalize. One of the biggest lessons I've learned is that it's not only ok to say it, but it's crucial to my spiritual health that I never forget: 

This wasn't how it was meant to be.

Yes, God is sovereign. Yes, He uses all things for our good and His glory, Yes, He has a purpose in this. The "rest of the story" of the Creation and Fall is this: Redemption and Restoration. Our hope lies in the One who came to keep us from living forever in a fallen world. 

But when we are living in the depths of the results of the Fall, it does our souls good to acknowledge the reality that something is Wrong. We don't need to rush to "just accept it". It's ok to pray for God to reverse the biological effects of the Fall in our loved one's life. It's ok to seek treatment and work for a cure. It's ok to be mad at the disease and at Satan whose trickery precipitated the Fall in the first place.

Then, and only then, can we embrace the rest of the story: For the Christian, acceptance only comes through the cross. That means we look the worst reality in the face, call it for what it is, and then say, "Jesus is bigger than this." Then look into the empty tomb to find the redemption and restoration on the other side.

This is My Father's World
And Let me Never Forget
That though the wrong seems often so strong
God is the Ruler Yet

The Alchemist

Authenticity is really important to me. I don't ever want to be one of those "happy clappy" types who just share the good side of things. Jesus is Lord over my bad days as well as good ones, and authentic faith encompasses the hard questions. 

Our family is going through a deep trial right now. Some days are filled with joy. But there are really hard things and really bad days. Yesterday was one and it ended with me standing in the kitchen bawling the ugly cry while putting up dishes. It's not that I wasn't still joyful over the blessings from the day before. But the joy was mingled with grief, with pain.

This morning as I processed the contrast of Friday night and Saturday night, these words poured forth when I tried to pray. I'm sharing them, because they reflect a truth that we all have to grasp in one way or another. Roses have thorns, and life has trials, because we live in a fallen world. Yet there is One who has redeemed it all, who is working it to transform me and you for our good and His glory.

The Alchemist

I stood in the kitchen and wept last night

Tears of sorrow, not joy this time.
24 hours earlier I was on cloud nine.
Oh, this disease.

I'm promised so much -
The spiritual returns of what I give up for HIm -
Yet wrapped up in the promise, trials.
Oh, this life.

Joy mingles with sorrow in the cup.
This much pain, this much blessing, a dash of strength, a dollop of peace...
The alchemist hands me the cup.
Oh, this drink.

I didn't ask for it.
Not this drink, not this flavor.
Yet in faith I sip, the drink burning my throat, warming my soul.
Oh, the cost and paradox of discipleship.

I set the cup down.
Through tear-filled eyes I see in the remains - a cross. 
And on the handle, written in blood, the single word - 
                        HOPE.