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.

Lesson from Caregiving #1: Being the Body

Carry each other’s burdens, and in this way you will fulfill the law of Christ. (Galatians 6:2) 

Readers of this blog know that our family has been going through a difficult season. There is so much I want to share that I am learning through this time, but the demands of each day, coupled with fatigue and my need to process, have made it hard to put the lessons into words. I'm determined to make an effort, though, because I firmly believe that I don't fully learn a lesson until I communicate it to someone else. 

The background: For the second time in my adult life, I have entered into a season of caregiving. Those who have been in this role know there is a difference between helping someone out and actually having the role of primary caregiver. Despite your best efforts, it becomes consuming. It can easily become your primary identity, the thing you think of first when meeting someone new or introducing yourself to a group. It's full of challenges and rewards that no one can understand without actually walking this journey. 

The difficult part about this caregiving season is that it's not the season I expected. My husband and I were the primary caregivers for his mom for several years prior to her death in 2007. I fully anticipated a repeat of that for my parents as they aged, or at least for one of them after the other went to be with the Lord. While they are aging and do need extra care and attention, in God's perfect will and sovereignty the caregiving season He called me to is for my husband. My sweet, loving, generous, funny, caring, chatty, effusive, God-centered husband was diagnosed with dementia last year, confirming suspicions of over a year and a half. To say that I was blindsided is an understatement. I felt body-slammed. Still do, some days. Some of the more recent posts on this blog were written in the depths of that diagnosis as I felt my world spinning out of control. There were many days I held on to a John 6:68 faith, not because it made me feel good but because I had nowhere else to turn. By God's grace, I landed on my feet and grew increasingly assured that even when I'm not holding on to Him, He's holding on to me. 

While all of that struggle was happening in my spirit, my husband's condition was worsening quickly. He went from diagnosis, to unable to drive, to needing someone to check in on him while I was working, to needing full time companion care, all in less than a year. We still haven't figured out everything we need to make it work with me working full time and trying to stretch out FMLA through the full year. I have a lot of support from his kids but they do not live locally. So I did the only thing I knew to do - I made the need known. And I learned a beautiful lesson. 

The body of Christ stepped up in a big way. Our church rallied and soon I had a mom of six taking him on her errands and entertaining her four year old; a single mom hanging out with him every afternoon before her son got home; a young dad taking time to walk and even bringing him over to spend the day with his family. A friend who works 60+ hours a week spent a rare day off hanging out with him. Other friends brought food or ran errands, and countless prayed, listened, and gave much needed hugs. The extended body of Christ stepped in as well - a dear, long-time friend first volunteered her husband for some household tasks and an outing, and then used her gift of connection to introduce us to a retired nurse who is volunteering two full days a week. A co-worker's husband took him to his church group a few times. On a desperate day when there was no coverage, a church friend's mom (who attends a different church) came over for the day. And I am sure I am forgetting something in the midst of all this! 

Why do I share this? Because I think we sometimes need a practical example of what it looks like to do as Paul wrote - "Carry one another's burdens." Yes, we do that in prayer. But when we pray, we should always be willing to become part of the answer to our own prayers. All of these people were willing, and it has been a powerful and beautiful - not to mention humbling - experience.

Here is just a snippet of what I have learned about asking for and giving help through this process: 

• Ask. That might go without saying, but it really must be said, because so many fail to get help because no one knows it is a need. Scripture is filled with examples of Godly people who asked for help! 
• Be specific. I know this can be a challenge, because sometimes you don't know what you even need. But as much as possible, be specific about what the needs are. "I need someone from 9-2 on Monday and Thursday" is a lot more clear than, "I need someone to come over." I started a Facebook group for those providing regular help, in order to communicate schedules and plans for each week. But I also tried to share specific needs as they developed outside that group as well, sharing in our church prayer group and occasionally more broadly.
• Be flexible. Be willing to have the plans change, for someone to share the responsibility with someone else, for it to look different than you would do it. 
• Be honest. When you ask someone for help it is typically because there is a challenge involved! Be honest about what it  is. Honesty prepares them for what they will face, equips them to do the job, and encourages them that they are not the only one facing challenges. 
• Be thankful. Thank those assisting in many ways - verbally, and if appropriate financially or with thank you cards. Somehow, make sure they know you appreciate them. This can be hard, since you are probably tired, but it is so encouraging to someone who sacrificed for you. 
• Be receptive. Be willing to receive the unexpected help. If someone randomly calls that they are bringing food, take it (unless you have no place for it and it would be thrown away, of course - but most things can be frozen!). I am learning to trust the Holy Spirit in the lives of others. If God puts a random thing on someone's heart, there is probably a reason! And if someone offers, try to take them up on it. Trust God is putting you together for a reason.

For those giving the help, let me share just a few of the many things that our church and extended body of Christ have done very well. I have learned much from them about giving help through this process. 

• Offer. Even if you don't know what you can do, you can offer. You might be surprised what needs you can meet. One of the dearest women in my life works full time and has a full plate as a busy grandma - but she lives close to my local honey source, and she picks up my honey monthly, saving me an errand and getting me home a little earlier.
• Be clear about what you can do. If you are only available for an hour on Monday mornings, say so. Maybe that is the perfect time to pick up an online grocery order for someone. It's much harder to accept help when you don't know what is being offered or when. 
• Listen to the Holy Spirit. I'll never forget the week when a sweet friend told me she wouldn't be available, and then texted me that God had changed her mind by reminding her of something from Bible study. I was humbled and learned from her that part of service is being flexible when the Holy Spirit changes the plans. 
• Find a way not to take no for an answer. I've had friends say, "I'm bringing you food next week; which night is best?" That is much harder to say no to than "Let me know if you need anything." I've also appreciated not having to think about what I need to ask for at times. 
• Stay in it for the long haul. Your circumstances will change. Their needs will change. But make sure they know that as things shift, you are still there. As quickly as this is moving I have changed the plans on our support team so many times, and I anticipate that will continue to be the case! They are all so sweet and sticking with it for the long haul - something I deeply appreciate! 

Being the body of Christ is about far more than Sunday morning worship, Bible study, prayer meetings, and yummy potlucks. In the day-to-day of our lives, it's about carrying one another's burdens to fulfill the law of Christ - the law of love. 

I am eternally grateful for the lessons I have learned from those living out this law of love in our lives through this season.


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