Monday, July 09, 2018

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.  

Monday, July 02, 2018

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

Friday, June 29, 2018

Lessons from Caregiving, #8: Actions that Touch the Soul

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

I asked my husband to forgive me yesterday.

That might seem strange to some, me asking forgiveness from someone who has already forgotten that I snapped at him and doesn't understand the meaning of the word "forgive". Indeed, when I asked him if he forgave me, he said, "Of course I don't forgive you".  He meant, of course, that there was nothing to forgive - his standard response over the past 23+ years. The man has rose colored blinders on, y'all.

It had been a rough morning, with him being off schedule and me being frustrated because that meant I wouldn't get to have my quiet time. (For me, the classic cue that I'm walking in the flesh and not the Spirit is when I get put out over my quiet time being interrupted by something God has called me to do!) In my frustration, I first rushed him, then snapped at him. Of course the day only got worse. Finally as he got back on track, I stopped him, looked him in the eye, and said, "Please forgive me for being irritable." He didn't get it, but the change was immediate. In that moment, something shifted in our day.

I learned then that there are spiritual actions that touch the soul, that part of us that is eternal, untouched by the diseases that impact our flesh. Things that make a difference, whether or not the other person realizes it or even wants it. These things have a profound impact on another person's soul, whether that person has dementia, is our sworn enemy, or is just having a bad day in the checkout lane.

Paul's words to the Corinthians have taken on new meaning for me in light of this lesson. Writing to encourage them to look beyond what is seen, he says:
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4:16-18)
"What is unseen is eternal." I've always thought of that as looking beyond this life to the next, to focus on heaven, to see things from a Godward, long-term view. And that is true. It does help us in trials to remember that there is something far better that we will gain for eternity.

But, "What is unseen is eternal" also applies to any actions that bring heaven to earth. Things like the fruit of the Spirit - love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control. Things like a cup of cold water in Jesus' name. Things like doing everything as if I were doing it for Jesus Himself. Anything that demonstrates His unseen character is eternal!

Years ago a dear friend told me, "Choosing to love does something powerful in the spiritual realm." She said this when I was on the cusp of ministry to people very different from me. I learned that she was right. The day I asked my husband to forgive me I learned that the "spiritual realm" isn't just "out there". It's "in here", in my heart and my husband's heart. Love, and all that flows from the throne of God above, touches the soul, no matter what we see on the outside.

Saturday, June 23, 2018

Lessons from Caregiving #7: Make Sure Your Soul Prospers

Beloved, I pray that in all respects you may prosper and be in good health, just as your soul prospers. - 3 John 2

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

As I walk this caregiver journey, I've lost count of how many times I have been told - by medical professionals - "take care of yourself because YOU can't get sick". As if I have control over that! "Take care of yourself" often becomes a trite phrase. Self-care is easy to carry to one extreme or the other - ignoring one's health to the point of detriment, or excusing selfish behaviors in the guise of self-care. 

That's one reason John's prayer for Gaius in this passage grabs me. His first prayer is for his prosperity and health. Isn't that awesome - Biblical permission to pray that each other stays healthy! I love it - but as we will see, this doesn't come in a vacuum. Gaius is very busy with the work of the kingdom, and he is very intentional to maintain the most important prosperity of all - prosperity of the soul. John acknowledges the importance of spiritual health to our overall well-being. When we hope for physical health we should hope it matches our spiritual health. Some of us think that would be pretty cool. Others are thinking we'd better work on that spiritual health! Which is exactly the point. 

I asked God what is the opposite of a prosperous soul? I believe He spoke to my heart that it would be desolation of spirit. What gives a person prosperity of soul, versus desolation of spirit? I meditated on that question for myself and came up with a few things that I can hold on to during this season: 
  • Trusting God (Isa. 17 makes that one crystal clear)
  • Nature
  • Worship Music
  • Church Services
  • Being in constant conversation with Him 
  • Reading (other dementia caregivers - see suggested resources below)
  • Connecting with friends that build my faith - and being honest with them about my needs and struggles
  • Receiving ministry from others and participating in ministry to the degree I can, even if it looks different (being part of the body of Christ)
  • Touchpoints on visions God has given me for the future - that heart for ministry to international women that He hasn't taken away even during this season
  • Watching over the temple He gave me (eating right, etc.)
  • Rest, and falling asleep talking to Him

What I've learned is that if I focus on "not getting sick" then I am stressed. If I focus on prosperity of soul - including eating right and getting rest - then I can pray along with John that I will prosper and be in good health, just as my soul prospers.

Suggested resources for dementia caregivers: 

Friday, June 15, 2018

Lessons from Caregiving #6: There's no such thing as being ready

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

I was six years old the first time I was told to be prepared for a loved one to die.

My deeply loved grandfather had just had a heart attack, 5 years after having colon cancer. He was older when I came along, and my parents didn't want me to be blind-sided if something happened. I was incredibly blessed to have him for 21 more years, but I spent my childhood thinking everytime I hugged him might be my last. When he did go to heaven at age 88, it was suddenly and I didn't get to say goodbye. Maybe that would have helped my grief process - but as an adult, I came to realize that there was no way I would ever "be ready" for my grandfather to die.

I don't blame my parents. Their disabilities have given them an incredibly practical and straightforward look at life and death, and their faith gives them a peace that helps them look hard things in the face and call them what they are. I've inherited a lot of their pragmatism, and for the most part that serves me well.

Except for now.

Now, as I read and watch for symptoms indicating the next stage of caregiving.

Now, as I try to cherish the good times and rejoice in the good days, without the heaviness of what I'm seeing hanging over my head.

Now, as I try to balance my role as caregiver with my relationship as wife. The ever-practical caregiver gets through the day and makes decisions. The wife misses her husband, cries herself to sleep, and has trouble catching her breath.

The lesson I've learned in this is an extension of what I learned with my grandfather: There's no such thing as being ready for a thing we don't want to happen!

We've all read the Gospels and shook our heads at the shock of the apostles when Jesus was crucified. He tried to prepare them. They shook off the warnings. Sure, there were elements of false expectations of the Messiah. But there was plenty of just plain old human nature. We don't like the idea of something, so we pretend we didn't hear what we just heard. That's why denial is usually the first stage of grief.

I haven't figured out completely how to process this lesson yet. In part, as my last post discussed, I acknowledge the wrongness of what is happening. I've learned I have to let myself feel the grief that cycles in and out, because I'm processing gradual losses. (This is why ambiguous grief is often considered the hardest type of grief to process.) So I let myself feel what I feel.

BUT I'm also determined not to let grief steal the joy of good moments though, so I am learning to find ways to just embrace a moment or an hour or a day that comes along, and just BE. I'm learning to live in the tension of Ecclesiastes 3:4 ... that there is
a time to weep, and a time to laugh; a time to mourn, and a time to dance;
For those of us walking through caregiving, especially with a loved one with dementia, we might have all those "times" in one day. But what I'm learning is to live in each one fully. If I need to weep, I weep hard! I have belly laughs when my husband gets silly with the music. I mourn what I miss. We dance together. 

I'm not ready for what comes next. But I'm trusting that One who is the same "Yesterday, Today, and Forever" is already there, ready to walk me through all the emotions I will feel along the way.

Monday, June 11, 2018

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

Sunday, June 03, 2018

Lessons from Caregiving #4: Remembering

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

I suppose it's not surprising that being a caregiver for someone with dementia involves learning lessons about remembering. I've learned so much about the power of habit, about how memory and the brain works, about emotions and music. And surprisingly, I've learned a few lessons about not remembering as well. This post is kind of a hodge-podge of those lessons.

One of the first things I learned in my "caregiver basic training" was that the last type of memory to go is music memory, What this means is that we can still connect with our loved ones through music often up until the very end. I see this in my sweet husband, when he is having a more quiet day struggling to find words but comes alive to favorite songs. He likes a variety of music, but the most meaningful to him is various types of worship music. I've learned from this about the power of music to speak to the soul, and to ask myself if the music that I listen to the most will connect my soul to my Creator in ways my words may not be able to.

I've also learned that emotional memory never leaves. It also means that even if they don't recall a name or recognize someone in context of a relationship, the emotional memory associated with that person never leaves them. I've learned to ask myself, not just with my husband but in every relationship, what kind of seeds am I sowing to build the emotional memory I want to be associated with me?

I've also learned about the power of habit. Habitual actions literally form "ruts" in the brain, so when parts of the brain don't function effectively to recall short-term memory or learn new things, the "ruts" still function. It's literally like the process of developing the roads in our country during Westward expansion. One wagon train after another followed the same ruts, which eventually became more permanent roads and railroads. I've seen in my husband the daily habit of quiet time continue, even as he struggles to understand the words he reads or how to pray. I even see the power of his positive attitude as a lifelong habit. While he has definitely had his struggles over the years, like all of us, at his core he is a die-hard optimist. His team is always going to win, the weather is always going to be fine, etc. I am convinced this habit is one reason that he has maintained an overall much more positive attitude than many dementia patients. I've learned to ask myself, what habits do I need to develop now that will carry me through when my flesh fails me later in life?

I've learned some things about forgetting as well. I've learned that his memories aren't truly "gone", he just has failures in accessing them. Since his short-term and new memory centers are heavily affected, he often forgets things as soon as they happen. I've learned this isn't necessarily bad! It is a literal picture of "keeping short accounts" and not keeping a record of wrongs. I have prayed for him to remember things, but I've definitely prayed that he would forget some things as well - like a bad day, or that time I snapped at him, or my tears that he couldn't understand. As I have prayed this, I've sensed God using that to teach me that I can learn to let go of things that I tend to hold on to as well, building my "long-term spiritual memory" with the things that matter most.

All of this has spurred me to look at what Scripture says about "remembering".  One of the things I'm learning is that for the believer, remembering is an intentional act. We don't just go through life, hoping that at the right moment we remember the right thing. We work at it, plan for it, train our minds for it.

I'm convinced that one reason God calls His followers to worship together in community is that we are not meant to be alone (Genesis 2:18, the only thing "not good" about creation was Adam being alone). And for that reason, He has ordained that there are spiritual things that happen when we are together that simply don't happen when we are alone. Today was one of those days for me - I thought I was fine, then we got in the prayer circle before church and I was a ball of tears. I ran PowerPoint throughout the service with tears streaming down my face. And God had a special word for me in the message.

One of the spiritual things that happens when we gather is the building up of faith that occurs as we hear the Word of God preached. In the millisecond it takes to go from our pastor's lips to our ears, the Holy Spirit does something with those words that just reading them on the page doesn't do. Sometimes that is something that just strengthens and encourages. Other times, it is something that challenges and stretches us. In the South, we call that "stepping on our toes." It's those days when it feels like my pastor has been listening in on my quiet times that I know God is really shaking me up. Today was one of those days.

He spoke from Acts 3 about the importance of expectancy as we look toward God. How it is equivalent to faith. How we can't give up, even when it feels Jesus has passed us by. How it's within His will and His timing, and may look different than we think, but we keep expecting, even just a little, because that's better than not expecting at all.

I leaned forward, knowing instantly that God was speaking to me, because frankly, I had quit expecting. Quit hoping. Quit looking for anything but the next heartbreaking reality. All afternoon, I wrestled with this truth: "Expectancy is faith." I told God I wanted to get there but didn't know how.

And then I sat down to finally write this blog post I've had on my mind for weeks, and came across this nugget in the Dictionary of Bible Themes: "Remembering should produce hope for the future".

I need hope. So I need to remember. That takes intention. I get to choose what I call to my mind. I'm not going to just let it be a blank slate that Satan and the world can fill. By God's grace, I will remember His goodness. His character. His mighty works. His truth. I will call it to mind, and build hope within my soul. I want to develop the habit of hope, so I will remember.

Lamentations 3:21-24 NET - (21) But this I call to mind; therefore I have hope: (22) The LORD's loyal kindness never ceases; his compassions never end. (23) They are fresh every morning; your faithfulness is abundant! (24) "My portion is the Lord," I have said to myself, so I will put my hope in him.