Lessons from Caregiving, #14: Moments that Matter

(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, #13)

I've always been a planner. As a strategic thinker, lists and structure come easily to me. I find it more stressful to be spontaneous, and within that, I have always worked best in blocks of time. So it's not surprising that God would take me through a season of learning how to be more flexible, more spontaneous, and most significantly, more in the moment. 

One of the lessons I'm learning is that while I can measure the tasks on my to-do list, I cannot measure the value of an interaction. The time spent patiently hanging out with Bob or taking my parents and him for a drive might result in 10 fewer things crossed off - but countless moments that matter. 

As I move from looking for good days to looking for good moments, I'm learning that I have to consistently be present in order to make every moment count. I have to focus not just on what has to be done, but on what he needs. It's a major change of perspective regarding time management. 

In the process I think I'm learning some of what Scripture means about the priority of love. I'm learning that when I live out 1 Corinthians 13 (which is possible only solely by the power of the Holy Spirit) I find living in the moment much easier. Each of these action verbs are in the present. I can't go back and be patient yesterday, and as much as I wish I could, I can't let today's kindness count for tomorrow.

This long Thanksgiving weekend, we've had some good moments. We've had plenty of hard ones too. I've had some joys, a few laughs, some fatigue - and I've shed some tears. All of these have been around moments that matter. I pray that in the process, I've loved well enough to give others some moments that matter, too.


1 Corinthians 13:4-8

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.

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, #12: The Last Time

(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)

The last time I tucked you in to bed,
You looked at me with trust and love.
Your eyes said what your words could not.

"Thank you."
"I love you."
"I miss you."

I hate this disease, this result of the Fall.
It steals so much, so quickly.
I never know when this will be the last time.

The last time you remember my name.
The last time you recognize me.
The last time I tuck you in.

I don't know how to live like this,
Constantly anticipating "the last time."
Always hoping for "one more time."

All I know to do is love you well
And treat you as if each time IS the last time.
To focus on and treasure every moment.

And then maybe when the last time comes, I will have no regrets.
No "I wish I hads". No struggling to remember -
Your voice, your smile, your touch.

And when the last time comes, I want to remember this truth:
Because of Jesus, there is never really a "last time".
For all our "last times" here are simply portals to the first time there.

So I will cry.
Then I will lift my head, and take my next breath
With Hope.

Lessons from Caregiving, #11: Enough. Already.

The call that changed everything came on April 7, 2016. My younger brother, my only sibling, had just died suddenly in the home he shared with our parents, due to heart failure. I entered a grief process, unaware of just how much was changing or how long that grief would last.

Soon, I would realize that part of my parents died that day too. I would see them decline rapidly, ultimately moving to live just down the road from us.

Soon, I would begin to see symptoms that would ultimately result in my husband's dementia diagnosis.

Soon, I would feel the gut-punch of realization that I am measurably close to being without any family of origin, or any close extended biological family.

Soon, the childlessness I didn't choose but worked through would again become a fresh wound as I faced the hard realities ahead.

The grief over all of this would become a constant companion. I've gone from being an even-keeled person with few ups and downs to living at some level of sadness all. the. time.

In the past 2 1/2 years, I've learned the language of grief - I can talk about ambiguous grief and anticipatory grief and sibling grief and stages of grief.

None of that knowledge prepares me for the physical pain that I still sometimes get in my stomach.

None of that knowledge holds me when I cry myself to sleep or wake up in tears.

None of that knowledge fixes it. 

There are days - lots of them - when I want to scream, "Enough already!" When I'm grieving at this level and for this length of time, why do I also have to have bad days in other areas? Why does my cell phone have to die and I wait for another replacement, feeling more isolated than ever in the meantime? Why does the paperwork for getting assistance for my husband and my parents have to take so long? Why can't the world stop while I deal with all of THIS?

On the good days, I seek God's face and try to learn what He wants me to learn. I keep a list of things that I sense He's teaching me and try to focus on some of those - presence, actions that touch the soul, hope.

On the bad days, I feel so over being in a wrecking season and just scream, "Enough already!"

It was on one of those awful days that He whispered back to me, "I Am."

I knew immediately, in the way that only the Holy Spirit can reveal, that He wasn't just reminding me of His holy name. He was saying to me, "I am enough. In this moment, on this day, with no circumstance changing - I am ALREADY enough."

From that day, I have in my mind the simple challenge when I scream, "Enough Already!" -- that is to remind myself that He is "Enough. Already." Not by fixing everything - but by His presence. Not down the road in some hazy, unknown future - but today, now, in this moment.

Thank You Jesus.

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

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.

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: 

• Grace for the Unexpected Journey (60 Day Devotional) 
• Keeping Love Alive as Memories Fade: The Five Love Languages and the Alzheimer's Journey 
• Help for the Caregiver (booklet from Joni & Friends) 

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.

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

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.

Lessons from Caregiving #3: Shaping

(By Repat - Own work, CC BY-SA 3.0, Link)

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

As I walk through the last year of my 40s, I have been thinking a lot about what has shaped me. What has made me who I am, at my core? What comes out as my default reactions, and why? 

In my heart of hearts, I will always be a small town girl who grew up on a dirt road. This comes out at odd times, but it has defined me in so many ways. When I realized that I would likely never move from the area where I live now, I immediately found myself finding ways to make it feel smaller to me. 

I've also been profoundly shaped by being the child of disabled parents. I can vividly recall the chill bumps that I got the day I was discussing the Holocaust with my dad. I was in 9th grade and we were just studying that horrific era of history. My dad said nonchalantly, "You realize that if I had been born in Germany in 1939 instead of Arkansas, I would likely not have survived childhood." He knew, as I was learning, that the Germans first victims were the disabled. That conversation lay the groundwork for what would eventually become a strong pro-life ethic with advocacy for individuals with disabilities.

Other experiences and moments have shaped me: The man I married. The day I cried out to God asking to live a life without any more regrets. The church we ultimately ended up choosing. I'm a firm believer that our shaping can continue throughout our lives if we let it, and that we face things that change us forever. 

In this caregiving season, I am realizing that being a caregiver is an incredible shaping opportunity. I first learned this with my mother-in-law, but the shaping is even more deep and profound this time. I'm trying to learn how to let it shape me for the better, and for the long-term. Obviously some of the changes are by neccessity temporary - I won't always have the work schedule adjustments I have now, for example. But other changes I find that I am enjoying and want to take into myself for the long haul. 

I'm learning (slowly!) to live in the moments; to find joy in just being in someone else's presence. I'm learning to be less task-oriented and more relational. I'm learning flexibility in ways that are stretching me. I'm learning about family and all the ways that can look. I'm learning about authentic trust, about a faith that has plenty of room for questions and tears. I'm learning to grieve with hope, but to still grieve. I'm learning to slow down and take things one step at a time. As frustrating as it is, I'm learning to wait. To wait on God to move when I think He should be faster. To wait on answers that don't seem to come. To wait on those days I don't know what I'm waiting for. More than anything else, I'm learning to let this hard thing that I would never choose drive me to Jesus more than ever before. 

Caregiving, like other shaping opportunities, will either make me or break me. I don't want to become bitter and resentful. I want to learn the lessons of this season. I want them to make me more like Jesus, for this to become a before and after shot for me. Scripture tells me how to do this - by focusing on His Word and on Jesus Himself. May I do this well, for His glory.

Romans 12:2 NET - (2) Do not be conformed to this present world, but be transformed by the renewing of your mind, so that you may test and approve what is the will of God - what is good and well-pleasing and perfect. 

2 Corinthians 3:18 NET - (18) And we all, with unveiled faces reflecting the glory of the Lord, are being transformed into the same image from one degree of glory to another, which is from the Lord, who is the Spirit.

Lessons from Caregiving #2: The Power of the Spirit

Therefore we do not despair, but even if our physical body is wearing away, our inner person is being renewed day by day. For our momentary, light suffering is producing for us an eternal weight of glory far beyond all comparison because we are not looking 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.

- 2 Corinthians 4:16-18 NET 

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

One of the most powerful lessons I am learning is the incredible power of the Holy Spirit in the life of a believer.

One of the ways that this disease has affected my sweet husband the most is by making him much less verbal, unable to think of words or express words he is thinking of. Depending on the day, he may or may not be confused about what he is hearing as well. It's easy for me to despair, thinking that this disease is stealing so much of what I have loved for the past 24 years.

But when I look past the temporary, I see the truth of Paul's words to the Corinthians. My husband's inner person is being renewed daily by the Holy Spirit. I see it when he maintains his quiet time habit, even when he doesn't understand the words he is reading. I see it when he tears up or outright weeps at worship songs, when he is having a silent day but starts randomly singing "I'll Fly Away" or joining in with our music. Even when he lacks the words to pray, I see it when he makes the effort, and Paul's words to the Romans take on new meaning:

Romans 8:26-27 NET (26) In the same way, the Spirit helps us in our weakness, for we do not know how we should pray, but the Spirit himself intercedes for us with inexpressible groanings. (27) And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes on behalf of the saints according to God's will.

As I struggled through a season of prayers that seemed unanswered and weeks when I didn't hear from the Lord, I watched him continue to love Jesus with the simple faith that has always been so powerful to me. Gradually my prayers shifted. Instead of praying for a specific outcome, I started praying for his spiritual life. I started praying for him to continue to hear Christ's voice, for him to bring honor to Jesus in this season, and so much more. I grabbed Scriptures that drew my attention to the eternal, and I pray them daily.

In the process, I learned a powerful truth. Dementia can steal a lot of things, but it can't steal his faith. Jesus meant it when He promised that nothing can separate us from God's love or take us out of His hands when we belong to Him. The cross truly has the final word.

John 10:27-30 NLT (27) "My sheep listen to my voice; I know them, and they follow me. (28) I give them eternal life, and they will never perish. No one can snatch them away from me, (29) for my Father has given them to me, and he is more powerful than anyone else. No one can snatch them from the Father's hand. (30) The Father and I are one."

Romans 8:38-39 NLT - (38) And I am convinced that nothing can ever separate us from God's love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow--not even the powers of hell can separate us from God's love. (39) No power in the sky above or in the earth below--indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.