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.

Tuesday, November 20, 2018

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

For my husband, on our 24th anniversary

When I stop to think about it, I'm amazed that we are here.
24 years. So much life.
Countless laughs. A few hurts and disappointments.
Dreams realized and dreams let go. Untold numbers of songs in the night.

I look around and see the imprint of your love everywhere.
The home we live in, the car we drive,
Cards and notes tucked in boxes and books and drawers.
Pages and pages of your heart poured out to me.

I think what surprises me most about myself right now
Is that I thought all this mushy-gushy love would be enough.
When you started slipping away from me, I thought,
"I have 22 years of words to hold on to".

Today, I know the truth:
I will always want more of who you are.
More of what I sometimes took for granted.
One more hug. One more expression.

I hate this disease, this result of the Fall.
It has stolen much from you, from us.
But what I hate the most is that it has stolen your words.
Your impetuous, heartfelt, expressive words.

So on our 24th anniversary today,
We celebrated as always.
The same, and yet totally different.
One more day in a lifetime together.

I want so much to be content with today,
To not have any bitter mixed with the sweet.
And yet here I am, holding back tears,
Hoping for just. one. more. year.

In my grief I know this: Grace abounds.
We've seen it for 24 years.
None of it earned, all freely given.
We've learned to embrace it fully.

If you could respond,
I think you would tell me now
That His grace won't go away.
It will always be enough.

So tonight I turn my face to heaven
And remind myself of the Living Hope -
That the One who weeps with me
Is the One who will welcome you Home.

Sunday, November 18, 2018

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.

Sunday, September 09, 2018

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.

Monday, July 09, 2018

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.  

Monday, July 02, 2018

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