Lessons from Caregiving, #19: Surrendering by Faith

(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, #14, #15, #16, #17, #18)

I suppose somewhere out there is a Christian for whom "I surrender all" is a statement of fact. For the rest of us, though, it's a prayer of faith. And I'm learning to be okay with that.

I used to think of "faith" as something we had to muster up and try hard not to let slip away. Phrases like "she never complains" or "all I ever hear from her is praise" reaffirmed this perception. When I entered this caregiving journey and began walking through ambiguous grief, I assumed that was my goal. 

Then, I met Job. 

Oh, I thought I knew him. I knew that he praised God when he lost all his children and possessions. I knew he had enviable patience. I knew he would trust God through his trial even if it meant death. I'd been there, read the book, got the T-shirt. 

But then I came across Job again, this time from the perspective of someone walking through my own wrecking season. I walked through my own season of words meant for the wind. I wasn't always positive and didn't just talk about Scripture. I still don't. 

I began to see in Job a John 6:68 type of faith - he didn't know what was happening, he didn't understand it all, but he had an unshakeable faith that there was nowhere else to turn. So he processed his pain, his anger, his resentment - every feeling imaginable - within the context of that relationship. His religious friends who lacked that relationship watched on in confusion, but Job held firm.

I admire those with constant, unassailable trust. But Job teaches me that I can struggle through suffering and end up in a place of deeper trust. That I can hold on to the basics of who God is, knowing my Redeemer lives, and still have doubts and wrestling matches with my Maker. 

There is a need for a witness of trust and hope, for posting Scripture and statements of faith. But I think there is also a need for the witness of holding on to Jesus when all you can see is darkness.There is a time for telling of lessons learned, and there is a time for processing lessons still in progress. 

I'm waiting for the day that I can truly say "I surrender all". Until then, I'll keep singing those words by faith, trusting that He is holding on to me.

Lessons from Caregiving, #18: God is my Caregiver

(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, #14, #15, #16, #17)

Give all your worries and cares to God, for he cares about you. - 1 Peter 5:7

Caregiving is hard work. Maintaining the daily routine, addressing constant changes, sleepless nights, dealing with the emotions of ongoing ambiguous grief -- all of this can leave a caregiver wiped out or worse, burned out.

That's why I've been so blessed by a lesson God has been teaching me from 1 Peter 5:7. We often think of this in an emotional sense - God cares about me in the same way that I care about my neighbor's missing cat. But the meaning is so much stronger than emotion. The word means God "takes care of" us. God, quite literally, is my caregiver.

It's been hard to process what this means in practical terms. It certainly doesn't mean that I don't need anyone else, that "me and God" have this covered. It does mean that I can see the people He sends my way and His hands and feet to meet my needs - even needs I didn't realize I had, and so I am learning to accept whatever people offer as if God Himself were holding it out to me. He knows what I need.

It also means that I don't have to always have the "right" emotions. We all know someone who went through a trial and never spoke a complaining word or only shared uplifting, encouraging truth or never took a day off. We often lift up Job 1:20-22 as a model for dealing with a devastating circumstance. And it is true, we need to end up in a place of praise.

I'm not doubting the sincerity of these believers' walks with God. My walk, though, has often looked more like Job 19, crying out about the things that make no sense, telling God and others that I'm in a wrecking season. I've said plenty of things, to God and those close to me, that I am glad He knew were "words for the wind", as Job 6:26 says. Yet He has tenderly been my caregiver through all of this, helping me hold on to the most basic threads of my faith even when it didn't feel good. John 6:67-68 and Job 19:25-27 have been lifelines for me - and He has cared for me to keep me out of despair.

I also learn so much about God as my caregiver through watching my dear husband with me. His total trust, his looking to me for cues as to what to do next and confirmation that he is doing it right, his desire to be in my presence even when he doesn't understand what's going on around him - all this teaches me how God wants me to relate to Him in simple trust as my caregiver, casting my concerns on Him just like my husband leaves all the big (and most of the little) questions about life up to me.

As I was processing these lessons, I ran across a beautiful depiction of this principle from a caregiving hero of mine, Robertson McQuilkin. McQuilkin gave up his role as a college president to care for his wife with Alzheimer's disease. He has written beautifully about the lessons learned through this experience. Speaking of the liberation that comes with being "tied down" to caregiving, he writes these words:

As Alzheimer's slowly locked away one part of my Muriel, then another, every loss for her shut down a part of me....Even in this loss, however, I made a wonderful discovery. As Muriel became ever more dependent on me, our love seeped to deeper, unknown crevices of the heart....We found the chains of confining circumstance to be, not instruments of torture, but bonds to hold us closer. 

But there was even greater liberation. It has to do with God's love. No one ever needed me like Muriel, and no one ever responded to my efforts so totally as she. It's the nearest thing I've experienced on a human plane to what my relationship with God was designed to be: God's unfailing love poured out in constant care of helpless me. Surely He planned that relationship to draw from me the kind of love and gratitude Muriel had for her man. Her insatiable - even desperate - longing to be with me, her quiet confidence in my ability and desire to care for her, a mirror reflection of what my love for God should be.

- Robertson McQuilkin, A Promise Kept, p. 32-33, emphasis mine

And that is the beauty of God as caregiver: He is attracted to my weakness. He is attracted to your weakness. We don't have to be a caregiver to experience His caregiving. We just have to learn how to cast our cares on Him, and quit trying to be or do or feel what we "should." The more we realize our helplessness, the more we come to understand His love.

Lessons from Caregiving, #17: Figure Out What You Really Need

(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, #14, #15, #16)


"Other than prayer, what do you need from your friends for YOU?"

The question from my grief counselor stopped me in my tracks. I could answer what I need for my husband, for my parents, even for my dog. I'm more than happy to tell you how you can come alongside me and help me provide care. But me? As I walk out this dementia caregiver journey, what do I really need? I realized the question boiled down to this: How can I receive effective care to enable me to give the best care?

My counselor is also a Christian, so I knew she wasn't pooh-poohing prayer as unimportant. As she explained, it's only going to get harder from here, so I need to get good at identifying and asking directly, not passively, for what I really need.

My first thought: "I have absolutely no idea." My second thought was an over-spiritualizing one: "I'll just let God whisper to people what to do."

But then, the words of Paul in 2 Timothy 4 came to me. "Make every effort to come to me soon ... Get Mark and bring him with you, because he is a great help to me in ministry...When you come, bring with you the cloak I left in Troas with Carpas and the scrolls, especially the parchments." 

We know from Paul's letters how much he depended on prayer. Ever since my blog series on Paul's prayers, I have been deeply challenged to be bold and specific when asking for prayer! In this case, though, Paul didn't give specific prayer requests - he asked specifically for what he needed from those closest to him. Paul could have given us the example of praying and trusting God to whisper these needs into Timothy's heart - He certainly can do that, and I don't want to minimize the importance of trusting Him in that way. But in this situation, God chose to inspire Paul to make specific non-prayer requests. 

As I've processed this question in light of Paul's example, I've started taking to the Lord the question - "What is it that I need?" As part of this process of learning how to articulate my own need for care, I wrote down what I'm sensing for now and sent it to a small number of people. I'm sharing these knowing many who read this blog do not even know me - but you may know someone who is serving as a caregiver, and I'm hopeful that this will give you some ideas to serve them. Please just realize that everyone is wired differently, and everyone is at a different stage of caregiving. The most important thing you can do is ASK! 

• Understand me. More specifically, understand what I'm facing as a caregiver. It's hard to communicate everything that we face on a daily basis. My heart soars when a friend takes the time to read a book or article about the disease or caregiving, and lets me know. (Note: I'm not talking "miracle cure" articles. I mean information about the disease progression and what to expect, or about what caregivers go through.) When you take the time the understand, it means so much. Ask me if you need suggested resources.
• Help me feel connected. As this disease progresses it grows increasingly isolating. I wonder what I'm missing at events I can't go to. I love it when someone shares prayer requests from Bible study, summarizes the discussion, or even involves me in some of the questions that came up! If I have to miss part of church, I'd love to know what the songs were or what the message was about. For other events I would normally attend, it would be fun to see a group picture - waving at me would put me over the moon! I need to feel part of things in some small way.
• Reach out to me. It's hard since I am a planner, organizer, and initiator - but in this season, I often don't have the emotional or mental energy to reach out in an attempt to maintain relationships. That doesn't mean you aren't important to me or that I don't want to hear from you. I love texts or Facebook messages that I can reply to when I have the opportunity. Every communication doesn't have to be about dementia or even about me at all. Pictures of your kids or your dogs, or even your weekend hike, silly jokes, encouraging songs, summaries of your day - all are welcome!  I really just need to feel connected. 
• Listen to me. One of the hardest things about my spouse having this disease is that I have lost the one person that knew all the details of my life. The person who listened to me vent about my workday and knew when to suggest a dinner out to unwind. The person who listened to me without complaint when I "got on a soapbox" as he loved to put it. The person who knew how I liked my food ordered. The person who knew why I loved or hated certain shows. I've realized that one person will never be able to replace a caring, loving spouse, for me or for anyone. But you can be part of helping me by offering a listening ear in specific ways. Ask me about my workday - and ask follow-up questions so I know you really want to feel part of it! Let me know about current events that interest you and I may just get on a soapbox for you too! The opportunities are endless. :) 
• Share with me. I want to hear about your life, your family, your world. The movie you went to see, the trip you are planning. Those things don't make me feel left out - they remind me that there is life outside of the limited schedule I have in this season. 
• Love me. My primary love language is words of affirmation and I really miss my hubby's sweet notes. Cards, sweet texts, handwritten notes slipped into my hand - all these scream "I love you" to me! It's hard for me to get in phone calls or have visitors, but letting me know you are available for a scheduled call (or text chat if I can't work out a call), or trying to plan a brief visit, is amazing as quality time is my second love language.
• Hug me. I find that I am needing physical touch more these days, so good old hugs are always welcome. There is something comforting about laying my head on a dear friend's shoulder! 
• Help me. Knowing I can call on you (or your hubby) if I need something done around the house is a great relief. 
• Surprise me. Those who know me best know how surprised I am that this is even on the list! I generally don't like surprises. But in this case, unexpected blessings are precious. Flowers (jonquils are my favorite but I'm not picky!), gift cards especially to drive-through places or those with curbside delivery since we have to take any food home now, food dropped off at our house (it doesn't even have to be a whole meal - a friend recently texted me that she had just dropped off a quart of the soup she made the night before) -- all these and more "surprises" just remind me that I am thought of and cared for in specific ways. It also reminds me that God sees and hears the cry of my heart to not be so alone in this season.
• And last but certainly not least ... Let me know you are praying for me. Remind me that my prayer requests are not in vain! If God gives you a scripture or specific way to pray, tell me. If you pray at the same time every day or with the same reminder prompt, tell me! I know I only get through each day on the uplifted arms of others' prayers.

If you are a caregiver, then I challenge you as my counselor challenged me: Determine what YOUR care needs are. Reach out, or at least be prepared to answer if someone offers. As Paul taught us, it's ok to ask for what we need. Ultimately, we are trusting the One who knows our every need ... even the ones we haven't figured out yet.

Lessons from Caregiving, #16: Living in the Comma

(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, #14, #15)

Last night and again this morning, my husband didn't know who I was - he didn't know my name, or that I am his wife. By the time his caregiver arrived and I went to work he had regained that understanding, but my heart aches from the reality that dementia is stealing this realization from him, adding another layer of confusion between us.

And yet - in that moment of confusion, he was not panicked or anxious. He seemed to sense that this strange person in bed with him was someone safe. He allowed me to help him and received my presence as a comfort. Although he hasn't understood the signifcance of the word "wife" for months now, he loves touching his ring and my ring. It's important to him to see them both side by side sometimes, and so he wanted to see my ring during the night. It helped him remember. His comfort with me, and watching him touch my ring, brought me a measure of joy in the midst of my heartache.

I've been learning so much about grief on this journey, and this is something that I am starting to accept at a deep level: It is possible to live in the tension between heartache and joy. It's possible to hold those two realities side by side and not be insincere about either one.

I've started calling it "Living in the Comma". On one side, my heartache. On the other side, the presence of joy. It's not a comfortable place to be, but like Paul wrote in this passage, it is clearly part of the normal Christian life. In fact, in the context of this verse in 2 Corinthians 6, Paul includes a whole series of seemingly contradictory realities that he is familiar with living out simultaneously. I think Paul knew something about living in the comma:

In everything we do, we show that we are true ministers of God. We patiently endure troubles and hardships and calamities of every kind. We have been beaten, been put in prison, faced angry mobs, worked to exhaustion, endured sleepless nights, and gone without food. We prove ourselves by our purity, our understanding, our patience, our kindness, by the Holy Spirit within us, and by our sincere love. We faithfully preach the truth. God’s power is working in us. We use the weapons of righteousness in the right hand for attack and the left hand for defense. We serve God whether people honor us or despise us, whether they slander us or praise us. We are honest, but they call us impostors. We are ignored, even though we are well known. We live close to death, but we are still alive. We have been beaten, but we have not been killed. Our hearts ache, but we always have joy. We are poor, but we give spiritual riches to others. We own nothing, and yet we have everything.

As a caregiver spouse walking through the ambiguous grief that goes with this terrible disease called dementia, I have to learn to embrace the truth on both sides of the comma. Yes, my heart aches. I live with some degree of sadness all the time. I am "sorrowful," to borrow the older and very appropriate term. I cannot run from the pain that goes with grief, because the only way to avoid grief is to wall up my heart from the love that makes grief possible.

The second half of the comma reminds me that there is JOY to be found. "We always have joy" is a statement of faith, a reminder that there is something deeper than my circumstances. JOY, in Scripture, is not situational. There is nothing wrong with happiness; Psalm 86:4 is a cry to God to "Give me happiness, O Lord, for I give myself to you." But happiness alone will not get me through the days when my husband doesn't remember my name. On the other side of the comma from my heartache, I have to search for joy. Biblical joy can be defined as a "calm delight" or "cheerfulness" and Galatians 5:22 tells us it is part of the fruit of the Spirit. In other words, it comes from within, from the work He is doing in me.

I'm learning that when I struggle with the second half of the comma, I won't find what I'm looking for in motivational posters or false assurances that it will be better. I won't find it in trying to muster up the "Christian answer" of what I think I "should" say or feel. No, that joy comes only as I am connected to the only One who produces fruit. Hosea 14:8 states it clearly: "Your fruitfulness comes from Me." This is one of the things that keeps me coming back into His presence day after day, when I can't pray or when I pour out my heart, when His Word jumps off the page and when I just read it perfunctorily. It's what I seek when I gather with other believers for worship and the Word at church each Sunday. I know He can still turn things around for my husband's diagnosis and heal him tomorrow. But what I am seeking for myself is even deeper than healing - it's a fruitfulness that brings joy, that helps me to live fully on both sides of the comma. When His Spirit produces the fruit of joy, I can find something to smile about even in my grief - like watching my husband touch both of our rings this morming.

Over the past several Decembers, God has given me a verse to cling to throughout the upcoming year. This year, I sense that this is my verse. I know I have heartaches deeper than today's ahead of me. My prayer is that I find a way to also live in the second half of the verse and "always have joy."

Lessons from Caregiving, #15: Everything I Need

(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, #14)

By his divine power, God has given us everything we need for living a godly life. We have received all of this by coming to know him, the one who called us to himself by means of his marvelous glory and excellence.- 2 Peter 1:3

Early in my walk with God, my small group leader highlighted this verse for us by telling us that if he were on his deathbed and had only one thing to say to us, this would be it: "You have everything you need." He taught us that the Holy Spirit can impart a gift for a single time, if that is what is necessary for His purposes. 

I won't lie - sometimes I don't want to do the hard things required to "live a godly life." It's always easier to do what comes naturally - walking in the flesh, the Bible calls it. Sometimes I wish I could get a pass. But if that were the case, I would miss out on something beautiful.

As I walk this journey of caregiving, I'm reminded of an overused saying that is definitely true in this case: It's a marathon, not a sprint. I'm learning that "everything I need" doesn't come all at once. It comes like the manna in the wilderness, just enough for a day - even a moment - at a time. 

It is through prayer, worship, Bible study that I "gather" that manna. I'm learning to pray for 1 Corinthians 13 love, for Galatians 5:22 fruitfulness, for Habakkuk 3:17-19 steadiness, for Psalm 23 peace and rest, and so much more! My time with the Lord is like the stretching, nutrition, hydration, and training runs that a marathoner puts in ahead of the race - except my race is every. single. day. 

Just like a marathoner, I can have great preparation and have a bad race that day. I can also have terrible preparation and have a great race. That's because the quality of my race doesn't depend ultimately on me. I get what I need by HIS divine power. I can guarantee a bad race, though, by failing to "come to know Him" - if I don't grow in knowing who He is, I will never get past the starting line. 

And here is the really encouraging part - when I act in ways consistent with His character - the "godly life" Peter mentions - I gain assurance in my own faith. Paul writes in Romans 5:3-5 that growth in endurance brings strength of character which increases my assurance of salvation. When I act in love toward others, I know God's love fills me because He is the source of that love. 

So I go back to Him, again and again, asking for what doesn't come naturally. I ask others to pray with and for me, especially on days I can't bring myself to pray. Because the beautiful truth is, doing the hard thing when I know it was Him and not me reminds me that I am His. 

He gives me everything I need. And when that happens, I realize everything I need - is HIM. 

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