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.

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.