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.

MEDITATIONS BEFORE KADDISH - From MISHKAN T’FILAH

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.