Friday, December 13, 2019

Lessons from Caregiving, #24: The final road

(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#20#21, #22, #23)

We're walking the final road in the dementia caregiving journey this week. After we mourn together at my husband's funeral tomorrow, honor his military service at the graveside, and celebrate his life with a meal at our home, I know that I will be entering a new phase of life. Although I'll still provide care for my parents, it will be very different than the intensity required for dementia caregiving.

As I step into this new phase of life, this blog series is also coming to an end. I know that I have a lot of lessons still to learn and process, and I may very well write about it again in the future. Right now, though, I need to apply what I have been learning at a deeply personal level.

Over the past 2 1/2 years since diagnosis, I watched my husband surrender to the increasing levels of care required by the disease. His trust in God and by extension in me has been profoundly humbling. The depth of his humility was beautiful. His surrender was complete and total - not in a fatalistic sense, but in a simple, childhood faith way that just knew God would take care of him. I don't know how to trust like that, but I want to learn.

He also remained a worshiper to the end. Less than 18 hours before he died, he was trying to sing "Amazing Grace" by mouthing the words. Just a couple of hours before he died, the only thing that relaxed him even after medication was listening to a sermon with his daughter. So many people that came through commented on the love of Jesus in his eyes. I want to learn how to worship at that level.

To the end, he retained his love and concern for others. He wanted to know that I would be cared for and would look back and forth between me and whoever was visiting until they promised to take care of me. His last visit with his kids involved him looking back and forth at them until they promised to care for each other. I want to be others-focused even in my own trials.

For some time, we've been walking a narrowing road. His world was shrinking, and with it so was mine. Now, he's walked on alone, around the bend in the road. I'm left behind, trying to figure out how to walk on alone - and yet not alone. I have the presence of God, my family, friends, church, and 25 years worth of love from my husband to see me through.

My husband was generous and open-hearted. He embraced people whatever their background or beliefs. Our family has chosen this poem, from a different religious tradition than ours, that really speaks to what we think he would tell us. Yes, we grieve. Yes, we miss him deeply. But I want to learn how to turn that pain into a pathway for love toward others.

Thank you for walking this journey with me. I appreciate your prayers as we move forward from here. I'll write again when God guides me - for now, I want to rest, and learn how to apply all these lessons from caregiving.


When I die give what’s left of me away
to children and old men that wait to die.

And if you need to cry,
cry for your brother walking the street beside you.

And when you need me, put your arms around anyone
and give them what you need to give me.

I want to leave you something,
something better than words or sounds.

Look for me in the people I’ve known or loved,
and if you cannot give me away,
at least let me live in your eyes and not your mind.

You can love me best by letting hands touch hands,
and by letting go of children that need to be free.

Love doesn’t die, people do.
So, when all that’s left of me is love,
give me away.

Lessons from Caregiving #23: Worship - Lament - Trust

(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#20#21, #22)

I started this blog post a week ago, not knowing that it would lay unfinished as I sat with my husband, his daughter by my side, and caregiver looking on, while he took his final breaths. My ongoing grief is taking on a whole new layer as we face the reality of death.

When we began walking the Dementia Road, I was surprised at how overcome with sadness I could be at the most random times. With a fast-progressing disease, new changes were coming at me before I could adjust to the last one. I never found a "new normal" and constantly felt the rug pulled out from under me.

In the middle of this I began to learn about the stages of grief and began to connect with other dementia spouse caregivers. In this process I learned of an often-overlooked Biblical practice: Lamenting. As I began to cycle through the stages of grief, I also studied Biblical examples of lament. I began to see a pattern emerge: Worship, lament, trust.

Worship is more than just singing - at its core it is acknowledging the truth of who God is. As the first step in the process, worship is a good reminder that all of our pain can be processed in the context of relationship with Him. The classic example of worship in the face of grief is found in Job 1:20-21:
 At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship 21 and said:
“Naked I came from my mother’s womb,
    and naked I will depart.
The Lord gave and the Lord has taken away;
    may the name of the Lord be praised.”
The Psalmist Asaph also begins facing his grief with worship in Psalm 73:1:
Surely God is good to Israel,
to those who are pure in heart.
What I am learning from this is that no matter what I am facing, having a heart of worship that acknowledges who God is in the middle of my pain is crucial to biblical lamenting. 

Lament is the outward expression of grief and sorrow. It is defined as "a passionate expression of grief or sorrow." In Scripture, we see lament reflected in such practices as weeping and wailing, tearing clothes, sitting in dirt, and outpourings of sadness in conversation with God. These practices are the norm in parts of the world today, even among Christians who suffer for their faith or from poverty and disease. Somehow, those of us in western Christianity with our cultural acceptance and our plenty and our medical care have forgotten how to lament. We see lamenting in the majority of Job's words from chapter 3 to chapter 37. While he does express some truths about God and some defenses of himself, much of his complaint to his friends is in line with his opening statement to them in Job 3:1:

After this, Job opened his mouth and cursed the day of his birth.
Asaph, too, processes his grief with what sounds like frustration in Psalm 73:13-14:
Surely in vain I have kept my heart pure
    and have washed my hands in innocence.
All day long I have been afflicted,
    and every morning brings new punishments.
Studying these and other examples of Biblical lamenting has taught me that there is really nothing "wrong" that I can say to God. He just wants me to keep communicating with Him, through the raw and gritty pain that I feel, always remembering who He is. I've told several friends that I don't want to be remembered as the woman who never uttered a complaining word. I want to be remembered as one who poured out every complaint to God and wrestled with Him, but never gave up on Him. 

Trust is ultimately where I want to land and how I want to grow through the process of grief and lament. I cannot tell you how much I have learned about trust by watching my husband yield to God in the challenges of dementia. Through everything that others had to do for him, through losing his ability to speak and relying on others to be his voice and his advocate, through surrendering to a parade of strangers through our home, he exemplified trust. I've told many people I don't think I've ever trusted anyone even half of how much he trusted me - and that is humbling. His trust in God was even more profound. He exemplified childlike faith and simple trust.

We see Job get to this point after God speaks in Job 38-41. In Job 42:5 Job responds with what sounds to me like definite growth in trust:
My ears had heard of you but now my eyes have seen you.
Asaph also found the ability to grow in trust after being in God's presence. He ends Psalm 73 with these words of trust:
But as for me, it is good to be near God.
    I have made the Sovereign Lord my refuge;
    I will tell of all your deeds.

My desire as I walk through this season of grief is to come out on the other side with a deeper trust - not so that I never again lament, but so that I know that God is big enough to see me through whatever grief I face.

I am learning to embrace lament. As I allow myself to feel the full weight of grief, I also see more clearly the fullness of our hope. I'm learning that it's only through the gospel can we both fully grieve and fully hope.

The photo at the top of the page was taken just two days before my husband died. I went for a walk on a crisp morning and realized that the setting matched how I felt: Cold, barren, and empty - but because of Jesus, there is hope that allows me to process this grief in the light instead of in the darkness. As I worship, lament, and trust, I do so in the light of His love.

Wednesday, November 27, 2019

Lessons from Caregiving, #22: The Ministry of the Spirit

(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#20, #21)

As this terrible disease has progressed, I've had a front row seat to something pretty amazing. 

It began when a dear friend from church, who had come as a brother to help with some household tasks, found himself clutching my husband's hands and looking into his eyes. "I could see the love there," he told me the next day at church. 

Similar stories have become common among visitors. People he hasn't seen in years have looked into his eyes and found joy at a moment of recognition. Individuals who become emotional often find him grabbing their hands or stroking their arms to comfort them. Strangers who come to our home as caregivers have found him intently trying hard to communicate words of encouragement. And while he is basically non-verbal, he still gets so much joy singing a hymn for visitors, even when he can only manage a couple of lines. 

I've realized that what I'm witnessing is probably as close to the pure, unhindered ministry of the Holy Spirit as I may ever see on this earth. Because of this disease, my husband cannot logically reason, make decisions, use his limbs to any significant degree, control his emotions, or speak most of the time - yet what is untouched is his soul. The presence of the Holy Spirit in him is one of the most vibrant realities I have ever experienced.

This has been such a beautiful reminder of the power of presence, of just holding someone's hand, of genuine love. What I'm learning as I observe this is the power of just letting the Holy Spirit do His work through us. I often overthink ministry and sometimes talk myself out of what God might be trying to do through me. I make it harder, not easier, and anything that He does through me is most often in spite of me! 

I'm also learning so much about surrender. My husband has shown the gift of faith in so many ways over the years we've been together, but nothing like what I see now as he has surrendered to God and allowed himself to be cared for by others. Yet as Paul wrote, even as the outer man fades away, his inner person is being renewed day by day. The Holy Spirit is ministering to him, as much as through him. 

I am all about loving God with all my heart, soul, mind, and strength - but when it comes down to it, to minister to another human being all He really needs is my heart, surrendered to Him. 

Tuesday, November 12, 2019

It's Me

Your eyes dart back and forth
Resting on me briefly
Then wildly turning away.

"Who are you?"
Words I had dreaded hearing.
Fighting tears, I amile
And say, "It's me".

"I'm your wife,
We've been married 24 years,
And we love each other very much.
See, look at our rings."

Reassuring touches
Then you once again rest,
My hand in yours.

Time passes. The silence comes.
Your eyes rest on mine
Trusting, somehow,
This person you sort of know.

Now I look at you
Wondering what you feel,
What you know,
Who you are behind the silence,

Living for the moments
When the veil lifts
And I see a sparkle
That says, "It's me."

Sunday, November 10, 2019

Lessons from Caregiving, #21: It Gets Messy

(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#20)

A few months ago, our family faced a difficult decision about my husband's care. His dementia had reached "end stage" which qualified him for hospice care, but to be eligible we had to decide that we would not treat any issues that arose beyond comfort care. As we wrestled with the decision, we heavily weighed our goal of keeping him at home against the risks associated with life-extending treatments in dementia patients.

In the midst of our processing, we were given some wise advice: "From here on out, every decision gets messy." That has proven true in a direct sense, as we have wrestled with decision after decision and sometimes just looked at each other and reminded ourselves of that advice: "Either way, it's messy".

That advice has also proven true on less obvious levels. The emotional processing, The spiritual wrestling. Sometimes, just answering the question, "How are you?" can feel pretty messy. You see, from a distance you just see the lessons I've learned. The big picture with all the hues and shadows and accents. Up close, you see the mess. The tangled underside of the tapestry. When you ask, "How are you?" I get to decide how much of the mess to show you.

One reason I blog is my own "messy processing". It's my way of inviting you in to my world, to support close up instead of from a distance. I figure if you take the time to read my blog, you either really love me, or are another caregiver who found this site and is trying to find a connection.

So here's my takeaways on this lesson: I'm learning to live with messy. I'm learning to accept that I cannot choose which emotion will hit me, and when. The best I can do is identify where I am in the process of grief, and ride the wave. I'm learning to accept that sometimes the medical choices will be between bad and worse, with no option that I really like. I'm learning that wrestling with God can look like a temper tantrum on Saturday morning and a stunningly-fast turnaround with just the words I need on Saturday afternoon. I'm learning that sleep makes the mess more bearable.

Most importantly, I'm learning to anchor myself on truths outside my mess - truths about the character and heart of my God. Truths that remind me that He is FOR me, that He is good, that when He doesn't deliver from a trial, He walks with me through it. Most of all, I remind myself that He isn't just a God who is 'up there". In the Incarnation, He became a God who entered into our messy world, with all its limited options, and knows exactly what it feels like to walk out this life in a fallen world. A world He came to redeem. A world that He promises can be filled with that redemption even now, even today, even in the middle of my mess.

The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly. - John 10:10

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.