Saturday, August 31, 2019

Lessons from Caregiving #20: Wrestle. Embrace. Repeat.

(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, #19)

I crawled into the hospital bed next to my husband, wedging myself between the rail and his back. Wrapping my arms around him, I tried to soothe him back to sleep. After all, it was 1:00 in the morning and I had to be at work the next day. Despite my efforts, for the next hour he tossed about, wrestling in my arms while I told him that he needed his rest. Finally, he drifted back to sleep. After inching my way out of the hospital bed and back into my bed right next to him, I spent another hour with my 50-year-old muscles taking their time relaxing back into place. I reflected on how my husband trusted me enough to stay in bed even when he really didn't want to.

In the quiet, God spoke to my heart. "He's like you. You wrestle when all I'm trying to do is get you to rest in my arms. But that's ok, as long as you just trust me even when you are trying to look over My shoulder to see what is out there."

That moment was a shift for me. I had been making my relationship with God another "should" in my life. The thing that should literally be the least stressful part of my life had become stressful, because I was missing the bigger point: He is far more concerned that I hang in there with Him than about any "should" that I might worry about. 

John called this "hanging in there" a victory: "For everyone who has been born of God overcomes the world. And this is the victory that has overcome the world—our faith." (1 John 5:4)

My favorite Old Testament prophet is Habakkuk. I love how he feels the freedom to ask God hard questions, because I too am a questioner. As I processed my own "wrestling" tendencies, I came across an encouraging fact: The name "Habakkuk" means both "to wrestle" and "to embrace". If you think of the way a wrestler wraps his arms around his opponent, you have a pretty good idea of the word picture. The picture of Jacob "wrestling" with the angel of the Lord reflects a similar idea. In Hope in the Dark, Craig Groeschel puts it this way: "It's like that kind of hug that wants both to cling to you and to push you away". 

What I learned that night was that because of the disease that has affected his understanding, I know infinitely more than my husband about what is best for him. I know what needs to be done to keep him from over-fatigue or hurting himself. When he finally yielded to my efforts that night, my primary feeling was relief that he would be safe and rested. Similarly, God knows even more infinitely what is best for me, and He wants me to yield to His embrace, His protection. When I quit trying to get up and figure it out myself, He is relieved for me. But even in my wrestling, He remains there just loving me.

I'm not the first one to figure this out. Habakkuk starts his prophecy with these words: "How long, Lord, must I call for help, but you do not listen?" (Hab. 1:2) That's wrestling if I ever heard it. Throughout the short book he asks a lot of questions - and doesn't get many answers. What he does get is an intimacy with God Himself. He ends his prophecy with the profound realization, "The Lord is in his holy temple; let all the earth be silent before him." (Hab. 3:20). 

My 'aha' moment that night came not in realizing that I "should" give up the wrestling forever, but that victory comes as I hold to faith by committing to do all my wrestling in His arms. He's with me even if the cycle looks like wrestle, embrace, repeat. 

Monday, April 29, 2019

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.

Sunday, April 14, 2019

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.

Sunday, February 24, 2019

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.

Wednesday, December 19, 2018

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."

Saturday, December 08, 2018

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. 

Sunday, November 25, 2018

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.