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.